This questionnaire will help you identify whether you might have pyroluria, a social anxiety condition. The physical and emotional symptoms below are caused by deficiencies of vitamin B6 and zinc. When you experience high levels of stress, vitamin B6 and zinc will be further depleted, so you may notice worsening symptoms and more anxiety.
Based on my review of questionnaires and results of pyroluria tests for hundreds of clients, I’ve grouped the most common or classic signs and symptoms first. I’ve also labeled the symptoms that could be directly related to low levels of vitamin B6 or zinc so you can individualize your supplements and dosages. Symptoms without these designations are due to a deficiency of both vitamin B6 and zinc. Check off any of the following signs or symptoms that apply to you:
Most Common Signs and Symptoms
1. Being anxious, shy, or fearful or experiencing inner tension since childhood, but hiding these feelings from others
2. Having bouts of depression or nervous exhaustion
3. Poor dream recall, stressful or bizarre dreams, or nightmares (low vitamin B6)
4. Excessive reactions to tranquilizers, barbiturates, alcohol, or other drugs, in which a little produces a powerful response (low vitamin B6)
5. Preferring not to eat breakfast, experiencing light nausea in the morning, or being prone to motion sickness (low vitamin B6)
6. White spots or flecks on the fingernails or opaquely white or paper-thin nails (low zinc)
7. Liquid zinc sulfate having a mild taste or tasting like water (low zinc)
8. Poor appetite or having a poor sense of smell or taste (low zinc)
9. Joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (low zinc)
10. Pale or fair skin or being the palest in the family, or sunburning easily, now or when younger
11. Disliking protein or having ever been a vegetarian or vegan
12. Being sensitive to bright sunlight or noise
13. Upper abdominal pain on your left side under the ribs or, as a child, having a stitch in your side as you ran
14. Frequent fatigue
15. Being prone to iron anemia or low ferritin levels
16. Tending to have cold hands or feet
17. Having frequent colds or infections, or unexplained chills or fever
18. Reaching puberty later than normal or having irregular menstruation or PMS
19. Having allergies, adrenal issues, or problems with sugar metabolism
20. Having gluten sensitivity
21. Neurotransmitter imbalances, especially low serotonin
22. For women, belonging to an all-girl family or having look-alike sisters
23. For men, having a mother from an all-girl family or a mother with look-alike sisters, or all the females in the mother’s family bearing a strong resemblance to each other
24. Avoiding stress because it upsets your emotional balance
25. Tending to become dependent on one person whom you build your life around
26. Preferring the company of one or two close friends rather than a gathering of friends; becoming more of a loner as you age
27. Feeling uncomfortable with strangers
28. Being bothered by being seated in the middle of the room in a restaurant
29. Being easily upset by criticism
Less Common Signs and Symptoms
30. Stretch marks or poor wound healing (low zinc)
31. Crowded upper front teeth, many cavities, or inflamed gums or wearing braces (low zinc)
32. Bad breath and body odor (or a sweet, fruity odor), especially when ill or stressed (low zinc)
33. Being prone to acne, eczema, herpes, or psoriasis
34. Reduced amount of hair on your head, eyebrows, or eyelashes, or prematurely gray hair
35. Difficulty recalling past events and people in your life
36. Focusing internally, on yourself, rather than on the external world
37. Tending to have morning constipation
38. Tingling sensations or muscle spasms in your legs or arms
39. Feeling stressed by changes in your routine, such as traveling or being in new situations
40. Your face looking swollen when you’re under a lot of stress
41. Cluster headaches or blinding headaches
42. One or more of the following: a psychiatric disorder, schizophrenia, high or low histamine, alcoholism, learning and behavioral disorders, autism, Down syndrome, Lyme disease (and/or coinfections), mold toxicity, heavy metals, MCAS (mast cell activation syndrome), multiple chemical sensitivities, Alice in Wonderland syndrome, introversion, Ehlers Danlos syndrome, pectus excavatum and other connective tissue disorders, mutism, dystonia, dental issues, dietary oxalate issues, vagus nerve issues
If you check off 15 or more items, especially the more common ones, it’s highly probable that you have pyroluria.
I typically start my clients with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg), plus a good multi-vitamin (with manganese and no copper) and a multi-mineral and sometimes additional magnesium.
For the zinc I have found Opti-zinc (without copper) to be very well absorbed by most of my clients. Using the liquid zinc sulfate/zinc status test is a useful way to assess your zinc levels.
We increase zinc based on the zinc test and the vitamin B6 based on dream recall. And obviously social anxiety symptoms too.
This questionnaire and information is taken from chapter 7 of my book, The Antianxiety Food Solution: How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood and End Cravings, available in major books stores and via Amazon.
It is based on my experience working with many clients with pyroluria, along with information from Depression-Free Naturally (2001), by Joan Mathews-Larson, Nutrition and Mental Illness (1987), by Carl Pfeiffer, and Natural Healing for Schizophrenia and Other Common Mental Disorders (2001), by Eva Edelman.
And this version of the questionnaire reflects a few updates made since my book was published in 2011.
11/5/2013 update – since doing this post, I’ve done a number of other posts related to zinc, vitamin B6, pyroluria and even introversion and I am including links to some of them here:
- Overcome your fear of public speaking
- Zinc deficiency is common: using liquid zinc status test as an assessment tool
- Am I an anxious introvert because of low zinc and vitamin B6? My response to Huffington Post blog
- Quiet: introverts on the job – pyroluria, low blood sugar, gluten?
Wow, Trudy. That’s a lot of info to digest. I think I’ll just start taking my vitamins. 🙂
Write on!~
Lisa
Lisa
It’s quite amazing how zinc and B6 can make such a difference!
Trudy
Hello Trudy. It appears we have somethings in common including our name. I am not sure if this is how or where I jump in as I am not used to blogging. I am 64 years old and have been dealing with impaired taste and smell for two years after a flu. I have looked online and have recently purchased Liquid Zinc Assay Max B from Premier Research Labs. I have recently found your site and think it is wonderful.
I suffered depression in 2008 after my husband received a liver transplant because of Hep C from tainted blood. I stopped taking Effexor XR about two years after but had to start again. I now have trouble with sleeping and use trazadone and sometimes Zopiclone. I also do not have an appetite and the loss of taste and smell has not helped!
After reading about Pyroluria I can identify with a number of the symptoms. I have avoided a social life over the last year and chalked it up to gaining weight (eating chips at night/salt) but realizing it is more than that. This is totally out of character for me as I have always been socially comfortable until the last few years. So finding this site has helped me a lot to recognize some things. I will add EPO to the zinc and B compound. I did the zinc test and was a 1.
I have a few questions. You recommend 30mg zinc initially and going up to 60 if necessary, 100 mg b6 and 1300mg EPO. My zinc quantity is 8 oz (237 ml) and the Max B-ND is a probiotic-fermented B complex which has 3 mg B6, 150% daily value. Could you tell how much of each to take to equal 30 gms and 100 gms and 1300 gms? Also I take a multivitamin that contains 2 mgs copper.
Thank you for your attention and your site is now in my favourites.
Trudy H
Hi Trudy (nice name)
I’m afraid I can’t give specific advice via the blog and it’s going to be best for you to look at your supplements and figure it out. I do prefer a multi with no copper for my clients with pyroluria – you can find one here, plus the zinc and B6 products I use with clients https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
I encourage you to check out Kelly Brogan’s new book “A Mind of Your Own” and the information on SSRIs. Here is an interview on SSRI tapering https://www.everywomanover29.com/blog/medication-tapering-withdrawal-kelly-brogan/
I agree within 24 hrs of taking P-5-P sling with zinc it has made a huge difference but not sure on how long before I increase dosage I have been taking 50 mg of p5p and 50 mg zinc for 2 months
Paula
Glad you’ve seen a difference. I have my clients increase after a few weeks if needed – zinc based on zinc challenge and B6 based on dream recall.
Trudy at what doses do you recommend for children, specifically boy age 9
Hi Trudy
I get urine issues when taking B vitamins – stingy and frequent urine. Have you even had someone tell you this before. My friend also but not many health professions know why.
thank you
Hi Trudy,
Thank you so much for the work you do. I have been following you for a few months now, and the information that most resounds with me is about pyroluria. I think all three of my daughters have it.( My daughters do not look alike but my two sons do!) My youngest daughter did your questionnaire, and had a said “no” to only about 6 of the questions! I had her begin the pyroluria protocol today!
Just before this, I myself started on copper 2 mg with zinc to see if it would help with my awful ragged nails. It has only been a few weeks and even with not faithfully taking it, my white spots are almost all gone and my hangnails are much better, so it seems to be working for me.
Because I guess I am wondering about “no copper” in your pyroluria protocol, I looked it up and came across this blog post. I do not understand it all, so perhaps you could clarify why no copper and if I need to be cautious in some way? https://www.sassyholistics.com/2016/09/13/pyroluria-copper-dysregulation/ Thanks!
I live in the uk and my doctor doesn’t test for pyrrole disorder. For a year i have been constantly searching the Internet for answers! I have been experiencing alot of these symptoms. Could you help me?
Katrina
My book has an entire chapter on pyroluria and many folks use this to guide them
Hi Trudy, I have been taking liquid zinc sulfate and feel so much better on it than the amino acid chelate tablet form. I sleep better and with the liquid zinc and 100mg of B6 and feel I can handle life better without the inner tension. A question I have is how do you deal with copper leaving the body if it is an issue for someone due to zinc copper problem particulary with A blood groups as they tend to accumulate copper easier than other blood groups I have read about this issue.
Thankyou so much for doing this work as it is so vital to so many people’s including my own’s wellbeing.
Katie
ps. I am taking Liquid zinc by nutrition care and I live in Western Australia.
Could you please share a link?
http://www.nutritioncare.com.au
Hi Katie, I’m in Western Australia too! Can you remember how much the liquid zinc cost you? There’s no price on the website and it says their online store is coming soon. I bought a Bioceuticals brand today from Health Kick at Joondalup for $20.95. 50ml and you take 5 drops once daily. Interested to compare price. They also have a P5P B6 but it comes with magnesium. When I’ve taken magnesium in the past I’ve found that my heart area feels fluttery so I hope that doesn’t happen this time 🙁 Where did you find your B6? Thank you so much!
Trudy, I love your work. Thank you for bringing this info to people’s attention. I just wanted to mention a product called Zinc Drink by Metagentics. It has 15mg of zinc sulfate per teaspoon and costs $28.95 for 28 servings.
Thanks Tracy – this is great for doing the zinc challenge test
Katie
There are many forms of zinc and some do better with one vs another. It’s not often that I find zinc sulfate in the liquid form is the best tolerated but it does happen. Good for you for finding what works for you. As your zinc levels increase the copper will go down. You could support your lover and do saunas to assist with any detox
You are most welcome!
Dear Trudy, i read the above response with interest because i believe i need zinc but when i try supplementing i get anxiety (worse than normal) it lasts about a day or so.
I have most of the symptoms on the list!
I am having an infrared sauna at home soon hoping this helps detox and the copper which seems to be my problem. Any suggestions for me to safely get extra zinc please?
Thanks you
Joanne
If we suspect high copper I have my clients go really low and slow on the zinc. Sometimes another form of zinc helps and making sure there is no copper in any supps is key. You don’t ever want to feel worse. Sauna is great!
You can also get copper levels tested – blood and hair.
May I ask how much and what form of zinc? and if you’re using or have used benzodiazepines?
Hi Trudy,
Thanks for your response. I think i was using Solgar zinc no idea what type sorry. I also had tried some zinc gluconate 15mg combined with selenium which also gave me anxiety (i take other selenuim fine) I have bought (unused!) Optimal zinc lozenges which are 15mg zinc bisglycinate chelate. What do you think about these?
I have used in the past diazepam, 2-5mg very sparingly and only when desperate. Havent used for couple of years at all because I hate the thought of them and have discovered adaptogens 🙂
Joanne
I’m pretty sure the Solgar zinc has copper so that may be problematic.
This sounds like its worth a trial as long as it doesn’t have copper: 15mg zinc bisglycinate chelate
This blog has some info for trouble-shooting https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
It’s unlikley that the diazepam is still affecting you after all this time but it could be posisble.
Hi Trudy,
I am so excited to find your site. I am a mental health professional at a big health insurance medical facility in Northern California and I have been discouraged by the over providing of SSRIS and medication without really assessing them or finding alternative ways to help people. I am anxious to get more education so I can help my patients learn that their problems ( anxiety, depression, constant tears, irritability,insecurity, etc.) may and can go away naturally. Mine did without medication. I wholeheartedly praise what you are doing and am grateful for your work. I have been referring them to your website and book and for those of my patients absolutely wanting to get off the meds and not go on them,I refer to “Mind of your own” . I am grateful for you pioneer women caring with love for the health of our women who suffer! you are my heros and I will follow in your footsteps. Thank you!
What amazing information.I have a lot of the above mentioned symptoms. Earlier this year I suffered an emotional explosion, a severe eczema outbreak. Due to a very stressful situation in the family. I call it emotional explosion, because I looked like I was in an explosion. My skin looked burned and blistered. I had to scrape the skin of my face with a knife. I also have a granddaughter who is autistic (6yrs old). I am going to try your supplement recommendation. Thank you very much for all that you do. May god bless you and your the work that you do. Be well.
Elke
I would also look at gluten sensitivity which is common in pyroluria and a big factor with eczema (and autism). Just so you know pyroluria is also very common in autism too. https://www.everywomanover29.com/blog/pyroluria-prevalence-associated-conditions/
Trudy,
I am pretty sure that I have pyroluria and my psychiatrist wanted lots of tests done. He was from Arizona where there is lots of copper in the soils and suspected HIGH copper, but I am from the prairies in Canada and even though I had been taking HIGH doses of ZINC, my lab tests came back with both the copper and the zinc in the lower part of the range. At one point I did read that taking high Zinc doses could cause a copper deficiency.
Because of poor endocrine function and pituitary damage as well as poor digestion — maybe from low thyroid levels — I have been taking lots of supplements and my current functional medicine doctor says that I am taking all the supplements to “support” my endocrine glands — adrenals, but they are still not producing the expected hormones. I have not had a “fight or flight” response since I was a kid and I am 70 years old.
One thing that I am finding (I do energy work with another friend of mine) is that MANY people have LOW thyroid levels which are NOT identified because doctors ALL insist that testing the TSH (a pituitary hormone) tells them how well the thyroid is working. AND IT IS JUST NOT SO!! So many people that I know (myself, my 2 older daughters and my youngest granddaughter) need to have the actual thyroid hormones tested!! I also know a lot of older people who are having physical or mental issues who are told that their thyroid is fine when the actual thyroid hormones are below the ranges. This really upsets me that so many people COULD receive help and are NOT getting the help that they need.
I am so glad that you are sharing info about pyroluria since taking higher zinc and Vitamin B6 is really helpful to deal with some of the symptoms!! I am actually starting to dream and remember my dreams (and I believe that having better thyroid levels helps that too).
Gloria
Glad to hear the pyroluria protocol is helping! is it helping with social anxiety too?
I’m with you on the inadequate thyroid testing – very unfortunate. And yes, there is a pyroluria-thyroid connection
Hi Trudy!
Looks like I have Pyloria but I can’t seem to tolerate b6 or any other B’s and I have high histamine & oxalate intolerance.
Any advice re: solving this mysetery?
Caity
I’d need to know what this means – I can’t seem to tolerate b6 or any other B’s? what happens? and which actual products?
Trudy,
You really know your stuff! After I have this baby I’m going to have to come see you. I don’t have any of these symptoms except for disliking being seated in a middle of a restaurant!
Kiyla Fenell
Thanks Kiyla! and congrats on the baby!
Truly impressive information Trudy. Great how you made it easy for someone to identify if they suffer from pyroluria. Thanks Trudy!
Dr. Robert Fenell
Thanks Dr Robert, so many people find this questionnaire so helpful
Wow! This is quite a comprehensive list. Thanks for publicizing a condition that makes people miserable and they don’t even realize what’s going on. Off to take my vitamins!
Sue
Thanks Sue – around 40% of the general population have pyroluria so it’s useful to know if you’re one of them!
Yow! I must have attracted reading this post today because I can check off most of those symptoms. I, like Lisa, am on my way to the vitamin store! Thanks, Trudy! XO, Katherine
Katherine
It does resonate with a lot of entrepreneurs who are big achievers and manage to push through their feelings of inner tension. And its amazing what a few nutrients can do to help in such a big way! Just make sure your zinc supplement doesn’t contain copper.
Trudy
Why should copper be avoided, if you don’t mind me asking? My multi has it in there.
Thanks!
Jen
Copper opposes zinc and people with pyroluria typically have high copper and low zinc
Trudy
Hi, just wondering if you know whether the copper zinc opposition is just relating to absorption or whether it has other implications?
Thanks for the info!
Louis
Hi Louis
Zinc and copper balance each other out – when you have low zinc, you’ll have high copper and feel more anxious. You may have low zinc due to stress, sugar consumption, exercise, low dietary sources, malabsorption (often with gluten issues), pyroluria (genetic) or due to high copper exposure (very high nut consumption as in baking with nut flours, veggie diet, copper in pipes/water, IUD etc.
I’m so sure I understand your question – if the above doesn’t answer it could you please re-word it?
Trudy
Hello. I thought Zinc needed copper as a co factor in order to absorb correctly? Thanks!
Wow – Sue Painter put this link in her Tuesday Tips newsletter. Not only do I have symptoms, but my sister has even more! I forwarded the link to her. Thanks for sharing this!
Deb
Yes, Sue saw this and felt it was worth sharing with folks on her list. So glad you found it useful and were able to share it with your sister. If you score high, it’s always a good idea to have your sister/s and mom and daughter/s also do the questionnaire. And getting on zinc and vitamin B6 will make a world of difference.
Trudy
Trudy,
Wow! This is a lot to digest. ( oops, sorry about that! )
Usually I just clear up my maladies with my good friend Jack. This is quite a list to review, I will pass it on as there are a few people I know who might be helped by reading it.
Mitch
Thanks for sharing Mitch – glad you have a good doctor to work with….
I checked off 15 for sure! I never knew of pyroluria. I guess this is something that one-a-day vitamins won’t take care of alone, that you need a higher dosage?
Carmen
That’s correct one-a-day vitamins are maintenance doses at best and if you do have pyroluria (or many of the symptoms, as you have indicated), you will need individual vitamin B6 and zinc supplements
Trudy
Whoa! What a list. I had never heard of this condition before and appreciate you sharing your expertise. Fascinating! I’ve been taking vitamins for a while now (pre- and post-natal) and now I truly realize the importance of continuing! Thanks. You are so knowledgeable!
You are very welcome Jenny!
I agree with the others — great symptom list.
However, it should be pointed out that several other nutrients are often critically essential when it comes to treating pyroluria — including manganese, niacinamide, magnesium, and sometimes evening primrose oil.
Zinc can deplete manganese, b6 can deplete magnesium, etc…..
More info available w/ a google search. 🙂
Kelly
Thanks for this and yes, you are absolutely correct. I find zinc, vitamin B6 and evening primrose oil to be key, with a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium. Niacinamide is really good when low histamine is the issue – often seen with pyroluria. Also each person is unique so this needs to be considered too. And more info is also available in my book The Antianxiety Food Solution 🙂 and future blog posts. I’m really only just getting started and can’t cover it all in one post, but appreciate you clarifying this.
Trudy
Trudy – very interested in your questionnaire. I am being tested next week for pyroluria as my holistic doctor says I have many symptoms of this – leaky gut, low zinc levels, anemic, damaged kidneys from Ig A proteins attacking them (gluten free to handle this) thyroid problems etc. Plus getting upset and angry without real reason. All good and makes a lot of sense this could be it. I have been gluten free for over a year which has made a huge difference but not resolved gut issues and sleep issues etc. Have been working for over 30 years as a fulltime exec and its taken its toll. I am 49yo.
My question is about my 26yo daughter – she is very pale, gets gut issues as well as sinusitis, and has incidents of very painful ovarian cysts to the point of doubling over and almost passing out, no appetite and chills/fevers. I see some of these symptoms on your checklist but not all. I want to get her tested too as it is genetic – have you found these other symptoms I mentioned are consistent with this same thing or should we be looking further. She is not gluten free but I am working on it, she is a high level exec working long hours but eats well and does some exercise. She is alcohol and drug free.
The really interesting thing on your questionnaire is about female likeness in families – the first reaction to people seeing us together is how alike we are – they always say this almost in surprise at the likeness!
Thanks – Sue
Sue
I’m really pleased the pyroluria questionnaire is helpful for you and I’m pleased your holistic doctor is testing you. You don’t mention anxiety for either of you – inner tension and anxiety is always seen with pyroluria. And yes, the female likeness in families in families is a very common finding.
If you do have pyroluria, please keep in mind that it is very likely just a part of the picture for you and your daughter – and yes, I suggest looking further. I’d consider an adrenal assessment and food intolerance testing for both of you – and possibly stool testing too. For you, anger and sleep issues could be related to low serotonin. For your daughter, when I hear ovarian cysts, I think PCOS, insulin resistance and sex hormone imbalances.
It’s great you are gluten-free and helping your daughter figure out if gluten is an issue for her too. All the best to both of you and try and work less hours if you can!
Trudy
Thanks Trudy and we went to see our holistic GP and told her our concerns for my daughter and she agreed with your comments above on tests needed so we are now organizing them to be done over the next 1-2 weeks. She is also having an IV Vitamin C, Vitamin B right now so that will also get her doing better while we sort the real cause of the problem. She is getting the pyroluria test as well.
Thanks again.
Sue
Sue,
If you and your daughter are having possible thyroid problems it is often helpful to make sure to also get the Free T4 and Free T3 tests along with the TSH (the pituitary hormone that stimulates the thyroid to work). And the levels for the Frees should ideally be in a similar level in their ranges and somewhere around the middle or a little above.
Thanks for this great info. I live in a rural area, and I’m having the worst time finding a practitioner near me, along the lines of what you do. I’ve searched holistic directors, etc. I’m willing to work with someone long-distance (online) if need be. I love your book, but I find that I really want and need someone to help walk me through it. When you’re dealing with possible pyroluria, all the attendant symptoms and issues, self-treatment is a major hurdle. Any advice? Thank you, thank you!
Hi Kay
You’re welcome! So pleased to hear that you love my book – thank you! I do work with folks over the phone and would be happy to talk to you about my programs. You can find out more here https://www.everywomanover29.com/services.html The first step is the initial 15 minute complimentary phone consult. I’ll send you an email too…
Trudy
Hi, both my son and I have been diagnosed with Pyroluria .
I have read that primrose oil (omega 6) should be taken instead
of fish oils (omega 3). Can you tell me the benefits primrose oil
will give us.
Cheers Anna
Hi Anna
The majority of pyrolurics tend not to need omega-3 supplements as they can absorb omega-3s from the foods they eat (grass-fed red meat, fish, leafy greens, walnuts etc). A few may need omega-3s and I suggest doing a fatty acid test if you can – then you’ll know for sure. Every pyroluric I have ever tested has always shown a need for gamma-linolenic acid (GLA) and the best thing for this is evening primrose oil. EPO helps with skin conditions like eczema, PMS, inflammation and actually improves the absorption of the zinc that is so important for pyroluria.
Hope this helps
Trudy
I was diagnosed with pyroluria in 1995. I was not financially able to continue with supplements, but as I have aged, I find it absolutely necessary to pay attention to zinc and B6. I seem to remember that Evening Primrose Oil contained salicylates, so I have been afraid to try it, because I was also diagnosed, long ago, with salicylate sensitivity. I have found that I am very sensitive to salicylates through experience. Do you know if I am correct that EPO is high in salicylates?
Robin
Please see our discussion over on this blog post https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
natural things like wheatgrass retention enemas at night for magnesium deficiency and pumpkin juice or checkens feet meat for zinc deficiency and potatoes for vitamin b6 issues and primrose oil remains unchanged ricebran oil and brazil nuts for vitamin e and selenium deficiency hope these help can take more of them if u prefer
Thanks Amar – eating real food is great but pyrolurics do need to supplement as well
Trudy,
Thank you for publishing this questionnaire, I haven’t read your book but I do intend to. I’ve been diagnosed with pyroluria and I’m taking Super Nu-Thera which contains P5P. I also need to take extra zinc. Do you recommend a particular type? Like piccolinate or chelate? Also some experts say dont ever take zinc without copper as it causes an imbalance which can be dangerous to the body, but you say to make sure the zinc supplement doesnt contain copper. I am glad i read this as I was about to purchase Now Foods L-Optizinc which has copper in it!
Finally, what do you think of a supplement from biopure called The Core Mineral which is for people with pyroluria along with other conditions? I have been taking supplements for 6 weeks now but I dont feel any improvement and am still succumbing to constant infections, which I think is low zinc. I will consider a personal phone consult with you since I am not improving so far.’ Thank you
Hi Val
Super-Nu-Thera looks good since it has 250mg vitamin B6 (and not P5P as you state). However 250mg may not be enough for you or you may need the P5P form or even a combination of B6 and P5P. The big question is this – are you remembering your dreams and are they pleasant? If yes, then you are getting enough vitamin B6/P5P (and the correct form).
I am not familiar with The Core Mineral but it looks excellent. It has a nice starting level of zinc (30mg is a good level to start at) but you may need more and taking a zinc-only supplement like Solaray Opti-zinc 30mg may be what you need. I have found Opti-zinc to be very well absorbed by most of my clients. Using liquid zinc sulfate is a useful way to assess your zinc levels. For someone with pyroluria I prefer a zinc supplement without copper.
With the correct combination you should start to see reduction of your symptoms within a week and resolution within a month or less.
I’d be happy to work with you via phone consultations to get you feeling great!
Trudy
OptiZinc has Copper (as copper citrate) 300 mcg 33%
Clare
Yes some companies use OptiZinc and add copper (like Source naturals). I use Solaray or Douglas Labs which has OptiZinc and no added copper.
Hi Trudy,
Thanks for your answer, the Super Nu Thera tub that I have here has only 25 mg B6 (Pyrodoxine HCL) (1250% Daily value), but I take 4 a day. Also it states at end that it contains P5P 25 mg. Anyway, I do need to return to my practitioner to tell her that it doesnt seem to be helping as yet. Maybe i need more time. She also prescribed Nature’s Plus Candida Forte, which has 50 mg B6 in it, and 50mg of Zinc (Ascorbate) per 2 capsules. I think the doses are high enough, but it could be that I’m not absorbing these as I should be. I am now on a gluten free diet and taking enzymes. I dont really remember my dreams very well, except just after I wake I can recollect some, most are not pleasant! Its usually anxiety moments of some sort, even though I am not terribly anxious. Thanks for the tip on the Zinc Sulfate I will try that as a guide. And maybe look into trying the Solaray. I am just going to download the Kindle version of your book and I’m excited to start reading it, thanks again for your help. I wil give this regime a bit more time before I abandon the practitioner & do a consult. Val
Hi Trudy,
Thanks for all the great info. My dad and I were both just diagnosed with Pyrolurria.
I am wondering how much evening primrose, zinc and P5P I should take a day?
I live in rural Mexico so its not very easy to get medical testing done.
Could you recomend a daily dosis to start with??
Thank you, Kelly
Hi Kelly
I suggest working with the health practitioner who diagnosed you with pyroluria. I start with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg) with my clients, plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
Trudy
Hello , How long so u suggest these to be taken?
What about nerve damage from taking b6 or is it just advised short term? Should I take more of each dose 2 wks prior to period for pms?
Wish I knew this my whole life now at 36 having social anxiety among many other symptoms above. I’m iron deficient so do I need to allow 2 hours between zinc and iron supplement?
Thanks:)
Thanks:)
Hello. Can a child age 11 and 17 take EPO?? Im looking for a good whole food based multi, is there such a product? We can’t take magnesium tho because our potasssium and sodium levels are super low revealed from a hair test. We were told to take beef liver to get good zinc and copper and also liver support. Is taking beef liver enough to get adequate zinc levels?? Thank you
Hi Trudy
My name is Kuba.I am from Poland.I recently tested positive for pyroluria in KEAC lab in Netherlands.They send me results and suggested to buy Depyrrol basic.Here,s information:
Depyrrol basic
One jar contains 60 vegicapsules. Two capsules provide: Pyridoxal-5′-Phosphate (P5P) 50 mg (elemental 33,5 mg Vit. B6) 1.675% RDA; Pyridoxine-HCL 10 mg (elemental 8.2 mg Vit. B6) 410 % RDA; Zinc Gluconate 210,5 mg (elemental 28,5 mg Zinc) 190 % RDA; Manganese Gluconate 41.7 mg (elemental 4.8 mg Manganese) 96 % RDA.
What do you think about this product?Do you think it would be better to take each supplement separately?
Hi Kuba
I am not familiar with this product but the combination of nutrients looks good. I looked online and found Depyrrol Basis and I’m sure you mean this one. I do think it would be a good place to start. You may find it works well for you or you may find you need to take each nutrient individually so you can control the amounts.
I’d love to hear back from you as to how it goes and if this did work for you. If you have the correct combinations you should start to see improvements within a week or two.
Trudy
Dear Trudy,
I just picked up your book (The Anti-anxiety Food Solution) a couple of days ago and can’t put it down! I feel as though you were speaking to me re: Pyroluria! I’ve been going crazy the past 3 years trying to find answers for my daughter. She is now 11, but has struggled with anxiety, depression, obesity, etc etc etc since she was 8. I am from a family of 3 girls, a Mom & Dad. My Mom, adult sisters, Aunt, female adult cousins, and myself (I am 41), are ALL on anti-depressants. (My Mom also has Celiac’s disease, which was discovered this past year). Because of this poor Mental Health history in my family, I assumed my daughter had what I have. She has been on 5 different antidepressants (is currently on Cymbalta), and we’ve seen quite a few therapists, but NOTHING is working for her. (I have been on Zoloft for 13 years, and have been great, but definitely had the same mental issues back when I was in my late teens… I just never told anyone). It is very sad, and I’m determined to find an answer for my girl. After checking off LOTS of symptoms on your checklist, I will look into testing her for Pyroluria (and then for me and all of my female relatives). We are scheduled to see a local Endocrinologist at the end of this month, and I’m very anxious to see what his thoughts are on this. (I would LOVE to visit with you, if you were closer to Maine). I am desperate for a solution. I want my happy little girl back, and am hoping that with your book’s information, I can figure things out! If nothing else, we are trying to eat better.
Many thanks!!!
Hi Amy
Thanks so much for the feedback on my book and the pyroluria section – I’m so thrilled it looks like it’s giving you answers (and hope) for your daughter and other family members! There is no pyroluria testing that I find reliable at the moment and I just have my clients use the questionnaire and then supplement, observing resolution of symptoms. It’s very likely that your endocrinologist will not be familiar with pyroluria – in which case, do share the chapter with him 🙂
I will actually be speaking in Portland, Maine on 5 December http://www.pesi.com/search/detail/index.asp?eventid=15072 – all day event for health practitioners and open to the public. If you can’t make this, a previous talk I did was recorded and can be purchased in my online store.
I do also work with people via the phone if you do need one-on-one support. The process starts with a 15 minute complimentary phone consult https://www.everywomanover29.com/initialconsult.html
Thanks again for taking the time to comment on my blog! Getting feedback like this is my big WHY! (why I do what I do and why I love it so much)
Trudy
Thanks, Trudy for getting back to me! If there isn’t an actual “test” for Pyroluria, can we at least be tested for possible low B6 and low zinc, as a guidance for what our blood may be lacking?? Maybe check for possible low iron as well? I will definitely bring your book with me to our appointment, but I want to make sure I insist on the certain blood work that I should have tested on my daughter. I don’t want ANYTHING to be overlooked!! Oh, and I’d LOVE to hear you speak! I’ll have to mark my calendar and bring my friends who have many similar issues and questions that I have. Can’t wait!!
Hi Amy
Zinc and B6 are difficult to test in the blood. I do suggest testing both iron and ferritin (storage form of iron). I’d also ask for a thyroid panel including the 2 thyroid antibodies (antithyroglobulin and antithyroperoxidase). I will send you the list of tests I have my clients do (and then create a blog post with this information)
Look forward to meeting you in Portland – please do come and introduce yourself
Trudy
Hi Trudy,
I just recently stumbled across pyroluria as a possible diagnosis for my symptoms. I do have many of the symptoms listed. In my expierence, antidepressants only make my symptoms worse, and antipsychotics provide little to no relief. I do have a history of mental health issues in my family. Also, I have been tested for everything including thyroid, adrenals, b-vitamins, and everything checks back normal. Ive also tried every supplement except b6 and zinc with no success. Is psychosis part of pyroluria? Any suggestings if I should start taking zinc and b-6? Thanks in advance! Rob
Hi Rob
I’d suggest working with a nutritionist or holistic health practitioner who can help guide you (let me know if I can help you find someone). For someone with many of the pyroluria symptoms, vitamin B6, zinc, evening primrose oil and a good multi are definately worth trying. Pyrolurics often have food intolerances, so gluten may be a factor too, especially since you mention psychosis (2012 paper: Maternal antibodies to dietary antigens and risk for nonaffective psychosis in offspring http://www.ncbi.nlm.nih.gov/pubmed/22535227). Also low histamine or high histamine may be part of the picture too.
Trudy
Thanks Trudy! Any suggestions on how much to start with? Im getting bloodwork done tomorrow to test zinc and copper levels, so hopefully I have something gauge with.
Rob
I start with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg) with my clients, plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
Trudy
Hi Trudy!
I started taking pyroluria supplements two days ago.I take:
Zinc picolinate 50mg
p5p 50mg
b6 100mg
manganese 5mg
EPO 1000mg
Vit.C 2000mg
B5 1000mg
I know i started with higher doses than you recommend but on the other hand in Depression Free Naturally i found formula with even higher doses.I’m gonna try my regimen for about two weeks and see if i improve.Do You have any suggestions about this?
I also have several other issues like type III allergies(gluten,eggs,diary and several others),sugar imbalances,lots of nutrient deficiencies(i’ve done hair mineral analysis).I didn’t test my histamine level but i’m 95% sure that i have high tissue copper level(pyrroluria,type A blood) and low histamine level.
After five years of problems(i got ill when i was 17 when i went to secondary school(boarding school)) i finally have lots of answers.But it was not easy to find them.In Poland(40 million people) no one heard about things like Orthomolecular Psychiatry or Functional Medicine.But of course there’s thousands of psychiatrists prescribing drugs.
Two weeks ago i started my new diet and i take my supplements and i’m waiting for results.I know things like copper detoxification may take a few months but i am sure that from now on things will only get better.
Thanks Trudy!
Kuba
Hi Kuba
I hope this is helping…please keep me posted
Trudy
I’ve had some suspicions about my family and pyroluria. I have three siblings, two of which are girls (three girls, one boy). We have a resemblence, but do not look remarkably alike. My mother (who probably meets most, if not all, of the criteria for pyroluria) comes from a family of five siblings (four girls, one boy) but the girls do not look alike – well, aside from the set of identical twins, that is. Interestingly, I have read (Carl Pfifer) that boys in pyroluric families tend to have deformity and both my maternal uncle and my brother have had issues with abnormal leg/hip growth. I have one sister who has been diagnosed with schizophrenia (sp?) and another who is so incapable of handling stress she feels that she cannot go through life without chemical/alcoholic intervention. I don’t seem to have psychiatric problems but do answer yes to many of the questions on the questionaire.
Are look-alike sisters a defining factor in diagnosis? Are eye problems (lazy eye, double vision, irlen’s syndrome) a factor in pyroluric patients?
I can’t afford to have myself and my kids tested (three girls and one boy) and I do have them on one tab of P-5-P per day, a multi, a general b vitamin (food-sourced) and one tab of food-sourced zinc. I give them the bs in the morning and zinc before bed. I’m guessing it’s not enough to make much of a difference, but I’m worried about giving them too much zinc. We’ve done the zinc test and the one who tastes something weird (indicating she has enough zinc) actually has more of the physical symptoms than the rest (morton’s toe, poor dream recall, stitch in side, dyxlexia, etc.).
Thanks for reading. Any thoughts would be appreciated.
Hi HipGrrrrl
Look-alike sisters are more common but even families with more girls than boys would fit if other symptoms are present. I have not seen eye problems or deformities with my clients who have pyroluria.
I don’t do testing anymore. I just rely on the questionnaire and a few other things (like the zinc tally/status https://www.everywomanover29.com/blog/zinc-deficiency-and-using-the-zinc-taste-test/ and low alkaline phosphatase). I also rely on the response to the nutrients and if the anxiety, inner tension and social anxiety go away, plus improved dreams, better breakfast appetite etc etc, we know we are on the right track.
Base your supps on symptoms – some of your children may need the B6 (eg poor dream recall) and some may need zinc and some may need both. There is no one size fits all.
Trudy
HI Trudy,
I just came accross this site by accident and i am so happy i did! I just checked 19 of these symptoms! OMG…I never knew there was a name for what i feel..ie anxious, hating to be center of anything, panic attacks, constipation, dislike of criticisms…poor self image, insecurity (thats not on the list i know) and so on…i also have the strech marks and the white marks on nails and creaking joints etc…
anyway i recently purchased zinc (gluconate) 50mg (becasue someone told me it may help with strechmarks which ive been trying to get rid of along with my colds and infection) and a super B complex (becasue i have a dark patch on the side of my lips and a doc told me to increase vit B) so supringly these are the supplements listed to treat pyroluria!
My question is will the brand and i purchased help with the symptoms of pyroluria? The zinc i have is zinc gluconate (50 mg) and it does list magnesium stearate in its ingrediants, and super B complex which contiants multiple vitamin B along with vitamin B6 which is 5 mg.
Would this work to get rid of my symptoms? or do you reccommend otherwise? please let me know and thanx so much for your help and advice!
Hi Ruby
I start my clients with Solaray Opti-zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg), plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium. We increase zinc based on the zinc tally and B6 based on dream recall. And obviously anxiety symptoms too
Trudy
Do you do zinc hair test or know who does. how much cost or take medicare I am in dexter ME
Hi Linda
Yes I do offer the hair test and it costs $60 -$80 (there are some different options). The kit can easily be shipped to you, you collect hair (they have great instructions), you send it back to the lab and they send me the results. Then we’d need to set up an appointments for me to review the results with you – there would be an additional cost for this of course.
Hair analysis is very useful for measuring minerals like zinc, calcium, magnesium etc, and for showing heavy metals like mercury, lead etc. It is even useful as a high level indicator of stress/adrenal function, blood sugar handling, sex hormone and thyroid function (there are ratios that are looked at)
Trudy
I have read alot of your site about pyroluria and am going to the store now to buy the supplements. I am having trouble finding the liquid zinc sulfate at the health food stores and at the ND dr. office. One store has a lizuid zinc by Trace Minterals that also has magnesim, copper, chloride, suilfate and a little boron. Can we use this one to do the zinc tast test? Also they have a bazillion brands for the evening primrose oil. Do you recommend any over another? They told me the Now brand was a good value. Thank you for sharing so much of this helpful information. Blessings, Nancy
Hi Nancy
You do need the liquid zinc sulfate for doing the zinc status test (https://www.everywomanover29.com/blog/zinc-deficiency-and-using-the-zinc-taste-test/). I do like the NOW brand for the evening primrose oil.
Thanks for commenting and you’re very welcome
Trudy
Just got the B6, Opti zinc and evening primrose…scored 21 on the pyroluria questionnaire. Thank you for providing a starting dose. Feel sure this is my problem and hope I can get off my anti depressant. Went to my psych the other day told him all was fine, since I lost my job MUCH less stress and anxiety. His reply was that he thought I should up my dose of my anti depressant! It was if he wasn’t even listening to me!
Debra
Glad to hear you have the supplements and you are so very welcome! Please keep me posted
Trudy
I was wondering if you could explain why a zinc supplement without copper is recommended. I thought they had to go together.
Hi Melissa
It’s likely that when you have very low zinc, you’ll also have higher copper and hence don’t need additional copper in a supplement and certainly not in your zinc supplement. You also get copper from many sources in your diet – nuts, avocado, grains etc And most likely in your multi-vitamin too. For some people, even the additional copper in the multi is too much for them and in this case a copper-free multi is suggested.
Hope this helps!
Trudy
Hi Trudy,
Are there signs you’ve seen when people have too much copper? My N.D. says that if taking more than 60mg of zinc I must add copper to avoid creating anemia.
I have noticed increased headaches and I am wondering if it is from the copper. I am going to slowly decrease my copper (2mg, but I am EXTREMELY sensitive). But I was curious your experiecne with copper.
Thank YOu,
Jess
Hello,
I”ve been considering getting tested for pyroluria for years now, but being on medicaid, and being sick (w/CFS), has prevented me financially, but also brain-fog-wise, from getting the test done so far. But after reading about this (once again), I’m going to try to find an inexpensive test that hopefully can be done without a doctor’s visit.
I did have a Spectracell nutrient profile done about 9 months ago, and that showed all my “B’s” were borderline (except for b12) and my zinc and vitamin D were considered “deficient”.
But here’s my question: I seem to be intolerant to b6 — in any form or dose.
I was able to take small amounts of it for a 3-4 month period, about a year ago, as long as I took b2 with it — but since then, when I take b2, it seems to make my sensitivity to light much, much worse. It’s noticeable within a few hours, and lasts for about a day. Weird question, but could this be perhaps because I’ve been low in zinc for a long time and/or I have pyroluria and need to increase my zinc first…then add the b6?
Have you had any other patients/clients with b6 issues?
Thanks in advance,
Dan
Hi Dan
I have not had any clients with B6 issues but have many clients who are sensitive to number of supplements and foods. This is common when low histamine is also a factor (commonly seen with pyroluria). It may also be fillers etc in the B6 supplements you have tried.
I suggest saving your money on the pyroluria testing, especially if you score high on the questionnaire and have had the Spectracell test done. I think doing the histamine test (whole blood) would be more valuable.
Since this is a complex issue you’re dealing with, working one-on-one with a nutritionist or other holistic health professional would be my recommendation. I’d be happy to try and help – we’d start with a 15 min complimentary phone call and decide next steps https://www.everywomanover29.com/initialconsult.html. If I don’t feel I can offer nutritional help, I’d be happy to try and find someone to refer you to.
Thanks
Trudy
Hi Trudy!
I’ve got a question about Nutritional Balancing Program.What do You think about it?Would You recomend it for a copper toxic person?I’ve also got a Calcium Shell patern on my HMA.Would you recomend NB for me?
Thank You
Hi Kuba
I am not familiar with Nutritional Balancing Program so unfortunately I can’t comment on this. I also can’t give you specific nutritional recommendations until you are a client. You can read about my programs here and set up the initial complimentary consult here https://www.everywomanover29.com/services.html I’d love to help if I can.
Thanks
Trudy
Thanks for your reply Trudy — and so sorry for my late reply. It has been awhile since I tried b6 or p5p, so I guess I could try it again in tiny doses. I did use reputable brands last time — probably Thorne, but maybe didn’t have enough of other co-factors at the time.
I read on another forum where quite a few people could not tolerate any b6, and on another forum where a woman had high serum b6 and found that by increasing her b12 considerably, she was finally able to lower the b6 and then later tolerate it just fine.
Thanks too for the offer of help and/or at least an initial consult — I appreciate that very much, esp being on SSI. I’m not sure what your schedule is like, but I’ll click the link, and go from there. 🙂
Hi Trudy,
Thanks for your webpage!
Five months ago I found out I am c677t hetero, I have been taking a heap of suppliments for it (L5 Metafolin, B12, fish oil, Thorne prenatal, CoQH, vitD)- I have just been diagnosed with Pyroluria (due to more tests after another miscarriage). Can Pyroluria contribute to miscarriage? Is there a safe amount of zinc and b6 during pregnancy if one has Pyroluria?
Hi Tanya
I am so sorry to hear about your miscarriage. Pyroluria is seen more frequently in all-girl families and you may see a history of miscarried boys. There is no research on a safe amount of zinc and vitamin B6 for pyroluria, during pregnancy so I would suggest working with a practitioner familiar with this condition and base the supplement doses on your symptoms and a retest of the pyroluria test (if you have access to testing).
That being said, there is research on low B6 and conception: “Poor vitamin B6 status appears to decrease the probability of conception and to contribute to the risk of early pregnancy loss” http://www.ncbi.nlm.nih.gov/pubmed/17478435. Vitamin B6 also increases progesterone which is needed for a healthy pregnancy. Animal studies show that zinc is also important for preventing miscarriage. Zinc is also important for healthy progesterone levels.
Trudy
Hi Trudy
I am in Australia and have scored quite high on your questionnaire.
I will begin on the doses of B6, zinc and EVO that you recommended to start on but am wondering how to proceed.
You don’t suggest taking the pyroluria test but I wonder if there are tests I should take to determine my deficiencies etc.
I have been trying to correct hypochloridia, hair loss and adrenal fatigue for quite some time and suspect my lack of progress is due to pyroluria.
Any info you can offer would be appreciated.
Tracey – Oz
Hi Tracey
You’re doing the right thing and hopefully you are starting to see an improvement in your symptoms…monitor B6 with dream recall and zinc with the zinc tally and possibly consider doing a fatty acid test.
Hair loss would be related to thyroid function so I’d look into that too. And obviously support the adrenals and take HCl, apple cider vinegar and sea salt to correct low HCl.
Trudy
Hi Trudy – thanks for this webpage and info – fascinating. Ive been strggling with health issues (22 of the most common pyroluria symptoms listed) for over 18 years.(im 46) Anxiety being the biggest battle. I have always felt there has been a ‘biological’ cause. Ive been researching more of late as I am seeing similar problems in family children (mine and nieces and nephews)and dont want them to experience what Ive been through. Ive noticed in previous posts that you suggest not doing the pyroluria test. Why is this? is it not a reliable test? What if test comes back negative yet the symptoms indicate otherwise? Are there other problems that have similar symptoms? I do know I have high histamine levels. Any thoughts? Do you know of any practitioners/docs in Australia? Thank and regards
You’re welcome! I just feel the questionnaire and your response to the supplements is enough. I do like testing in general – that way you know for sure – but I see a number of people getting negative results when they clearly would benefit from a pyroluria protocol.
I use other factors too – like pleasant dreams/good dream recall to indicate enough B6, the zinc tally and alk phos to indicate sufficient zinc and sometimes fatty acid testing.
Histamine imbalances are often seen together with pyroluria.
Trudy
Do you recommend Depyrrol capsules to pyroluria? I recently started depyrol PLUS
Sara
Please share a link and ingredients? Have you been using it with success?
Thanks Trudy! Appreciate your time and response. 🙂 Jenny
Hi Trudy,
Two weeks ago, my 10 year old daughter was diagnosed with pyroluria (through urine testing). She has been suffering for about a year with acute anxiety attacks that came out of no where and always after an illness. We sought out therapy and were prescribed anti anxiety medicines. My daughter would be great for about 2 to 3 months and then the anxiety would strike again with a vengence and always after an illness. My daughter has many of the symptons on the list. The lack of morning appetite, extremely pale, etc. I have also seen documented that tiny bumps on the back of the arms are a symptom. Also, I have seen that “Morton toe” (where the second toe is larger than the big toe) is also a factor. As my daughter has both of these, have you ever seen this? My real question is where do we go from here? I have consulted our pediatrician with help in finding a nutritionist, and I also want him on board for future reference. We live in Upstate New York, and the medical field has NEVER heard of pyroluria. I am educating the doctors, as I want my daughter to be healthy and happy. Whatever she has, it takes a huge toll on her physically and it is diminishing her self confidence rapidly. Have you heard of pyroluria waxing and waning? I am also going to insist on a stool sample for my daughter as I am researching that many feel pyroluria can be caused by a parasite. Also, since blood work rarely shows any deficiencies in a pyroluric, are there more specific tests that I should request, as I believe that pyroluria is a piece of my daughters “health puzzle”? Any information from you would be so appreciated! Thank you so much for your insight!
Hi Lisa
I’m sorry to hear about your daughter and the acute anxiety. Knowing that pyroluria is a factor (there could be other factors too) will help a great deal! Pyroluria symptoms are made worse under stress so this may explain why her symptoms are worse after an illness. She may also be more zinc-depleted after being sick. Bumps on the back of the arm may be due to a fatty acid imbalance – also common with pyroluria. I suggest fatty acid testing and/or assessing the need for GLA (at a minimum). Second toe larger than the big toe may be high histamine (histamine imbalances often occur with pyroluria. A stool test may be helpful and blood work does show more than you realize when looked at from a functional approach.
I’d be happy to help you find a local nutritionist or work with you long-distance. You can find out more here https://www.everywomanover29.com/services.html The first step is the initial 15 minute complimentary phone consult. I’ll send you an email too…
Good for you for looking for answers so diligently and for educating the uninformed!
Trudy
Dear Trudy,
I am a nutritionist with interest in the same area. I am happy that we have discovered this tremendous public health issue and an easy “cure” (affordable, etc.) and yet my mind wanders to underlying causes and the need to pay attention to these. Treating with vitamins is better than most chemical medicine “cures” that mask symptoms, but perhaps not digging deep enough. My guess is this is a relatively modern syndrome resulting from contaminants (pesticides and hard metals or inability for body and brain to detox) – hitting against an older set of antagonists, that our bodies used to be able to deal with and no longer can. The older set could be anything from genetic propensity, to parasites; especially for cat lover: toxoplasmosis. (which 20% of Americans have, reportedly). Thus, while we treat with vitamins, for true homeostasis to restore, we also have to pay attention to ridding the body of hard metals (cleansing therapies), and parasites (for example the combination of worm wood, cloves and walnut), and food intolerance (mostly gluten and dairy) in my mind. Love to hear your ideas on this, and keep up the good work. Angela
Hi Angela
It’s wonderful to hear from a nutritionist with an interest in this area! I totally agree with what you’re saying. We absolutely need to address toxins, parasites, food intolerances and anything else that is a contributing factor in terms of being a “stress” to the body. This includes a stressful lifestyle too, as any stress makes the symptoms worse. We may also need to improve digestion and detox capacity, provide adrenal support etc. Adding the nutrients to address the symptoms of pyroluria is just one part of it. And as you of course know, we are all biochemically unique so each person may need a slightly different approach.
Thanks for sharing! I’m pleased you bring this up because it’s part of how I work with people and yet folks reading this post as it stands, together with all the comments, may not be aware of this.
Trudy
Hi Trudy, I have had bad inner tension most of my life but great dream recall. Does this mean that I am probably not pyroluric?
Melissa – it depends on how many other symptoms you have and what type of dreams you have – weird dreams or nightmares may also indicate a need for vitamin B6
Trudy
It would be easier to list the symptoms I don’t have! I am shocked. In the past, I’ve received weekly vitamin IVs but that doctor moved home which is about 5 hours from me. Zinc and B vitamins were among the contents of the IV. I need to do that again! Thank you for the info.
You are most welcome Susan!
Boy, this is a good place to go to for practical informtion! You are most kind. I don’t have pyro but am in charge of someone who might (boy). One question: Your recommended starting amounts of supplements – is this the total for the whole day, or the dosage to be taken 2 or 3 times per day? Also, I hope your advice isn’t only for females. Many, many thanks & blessings. – Samia. P.S. Is more (supplementation) better or could it have a negative effect?
Hi Samia
The starting amounts is for the whole day and more may not necessarily be better. It really depends on each person’s needs. Males can have pyroluria too
Trudy
What an informative blog Trudy – there seems to be an increasing number of people diagnosed with this condition but very little authority on the best approach.
Having been diagnosed via a bloodtest with Pyroluria I went on high dosage supplements for 4 mths, after which I came off as they were really expensive plus my local GP felt the body corrects itself after 3mths. I have since had a blood test for zinc which was on the low side – naturopath said too low, GP said normal.
So my question would be, should we remain on supplements indefinitely? I notice during times of high stress my symptoms are worse and vice versa – is it all just about lowering our stress levels?
Hi Kate
Thanks for the positive feedback.
I am not familiar with a blood test for pyroluria and am curious about this and who offers it?
I can tell you this: if you do have pyroluria then yes, you do need to stay on the supplements indefinitely and even increase them during times of stress. The symptoms are typically worse under stress. And of course, your stress levels should be reduced anyway.
Regarding the blood test for zinc – it’s not a good marker of your zinc status so I wouldn’t rely on this. I suggest you use the questionnaire and your symptoms to determine if you need to stay on the supplements. If you score high on the questionnaire and feel worse when you stop the supplements then go back on them.
You don’t mention what supplements you were taking but I’m surprised to hear they were really expensive. A good multi, vitamin B6, zinc and Evening Primrose oil should not cost you much at all
Trudy
I had a blood test measuring levels of HPL in urine – done through an analytical lab here in Australia (through a biomedic). I was put on 250 Pyridoxine B6, 50 Pyridxal 5 Phosphate, 200 Vit E and 1000 Biotin for day time and 1000 Vit C, 70 Zinc, 200 Vit E and 1000 Biotin at night – all done through a compounding pharmacy (hence cost I guess!). Also take Evening Primrose Oil.
I had a recent zinc blood test which although on paper is within range, I now take a zinc drink at night and it tastes like elderflower, so suspect that’s off!
Hi Kate
I’d appreciate it if you would share a link to the analytical lab.
And yes the fact that your nutrients were compounded very likely added to the cost. I like to use individual nutrients so each one can be increased or decreased if need be
Trudy
Here you go Trudy:
http://www.safelabs.com.au/urinary_kryptopyrrole_testing.php
Hi Kate
I’m not quite sure why you said blood test – perhaps you had a blood test done at the same time? This appears to be a urine test and looks similar to the urine tests offered here in the USA. If you tested positive for pyroluria then you do need to stay on the supplements indefinitely and even increase them during times of stress.
Trudy
Hi Trudy,
I’ve been researching pyroluria and most information on the internet, including blogs of several alternative doctors, warn not to self treat due to the side effects of high b6 (neuropathy) and zinc (possible copper detox symptoms and/or copper deficiency). I’m curious as to why so many practitioners guard against these side effects as my understanding is neuropathy is reversible and zinc toxicity/detox symptoms, shouldn’t occur if you go slowly.
What would you consider a safe upper limit for b6 and zinc? I’ve read up to 2,000mg total b6/p5p (Depression Free Naturally) and 60mg of zinc would probably be a safe upper dose to try without supervision.
I expect conventional medical doctors to give the warning against high dose vitamin supplementation but was a little surprised so many Naturopaths/alternative doctors do also, unless under a doctors care. I’ve not seen that with other high dose supplementation protocols, just with the pyroluria protocol.
Interestingly, Joan Larson offers a self treatment protocol in her book Depression Free Naturally and nowhere does she recommend trying the protocol only under the supervision of a doctor, and I believe she is one of the original experts on this condition.
I just wanted to check what upper levels you consider safe for self treatment. Thanks for any input.
Paula
Hi Paula
There are valid concerns around taking too much zinc and vitamin B6. I start with zinc 30 mg and go up to 60mg. I start with vitamin B6 100mg (pyridoxine) and go up to 500mg. I often add in P5P 25mg and may go up to 75mg or 100mg and then reduce the B6 – some people seem to do well on a combo on B6 and P5P, some just need B6 and some just need P5P.
And yes, Joan Mathews Larson is one of the original experts on this condition – she is amazing and her book is great! You mention “I’ve read up to 2,000mg total b6/p5p (Depression Free Naturally)” and I’d like to correct this. She recommends 500mg max a day of vitamin B6 and 100mg max a day of P5P.
And you should be taking a multi so you are also getting manganese and magnesium.
Trudy
Hi Trudy,
My question is on copper. I have found that I check in almost all of the symptoms.As well as that of thyroid and adrenal(all subclinical)…
There’s a good product that contains all that is needed except EPO but contains a little copper(1mg as copper citrate).
Hi Trudy,
I think those are her starting doses. On page 154 of Depression Free Naturally (google books preview) there is a list of supplements for pyroluria. B6 has an asterisk next to it and if you go to the bottom of the page it says to “Adjust B6 until you can recall your last dream before waking. Do no exceed 2,000mg of B6/P5P combined.”
This is where I’m a little confused, as I know those are considered very high doses of B6. I think I’ll play it safe and follow your recommendations for 500mg B6/100 mg P5P maximums.
Thanks for all the great information you provide here.
Paula
Paula
I just saw that now that you called it out but it seems odd to me because you can’t group B6 and P5P together.
Also, I worked at Recovery Systems for 2 years – the clinic of Julia Ross, author of “The Mood Cure” – and we also followed used the maximums I mentioned.
Thanks for your kind words and for taking the time to comment!
Trudy
I have been suffering with a variety of symptoms for years. I came across your site and realised after checking the symptom list I could have pyroluria. I sent a urine test to bio lab and it has come back with elevated kryptopyrroles. However blood tests for zinc and b6 are said to be normal. My GP doesnt know what to do he is at a loss, the gastroenterologist is not interested I live in the UK. I would like to start supplements but am not sure what dosage, can you help. This has been going on now for 6 months Im fed up as no one is helping
Hi Alison
I start my clients with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg) with my clients, plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
Blood tests for zinc and vitamin B6 are not very accurate for assessing a deficiency. I suggest using your symptoms as a guide especially with the positive pyroluria result.
I encourage you to learn more on the subject. I have a whole chapter on pyroluria in my book The Antianxiety Food Solution. Joan Mathews-Larson’s book Depression-Free Naturally is also a great resource. I also do individual consults if that interests you.
Trudy
Hi Trudy,
I have been diagnosed with Low T ( testosterone, I’m borderline but its still considered to be low ). I also have a lot of the symptoms listed for pyroluria. I think i scored a 40 on your questionaire. My question is could pyroluria lead or be the cause of my low T? I’m just trying to make sure I’m treating the root cause and not band-aiding the symptoms. Thanks
Hi Brandon
I have not seen a connection between low testosterone and pyroluria. However zinc is needed for testosterone production so addressing the low zinc would likely be beneficial.
Trudy
Hi, I also have tons of the pyroluria symptoms. Iv been searching for answers for at least 25 yrs. My symptoms increase with the slightest event of stress especially when I experience a traumatic event physically as well as emotionally. I never really sweat or burp any. My question is; is a loud odor of what I can only describe as a fecal/septic type odor coming off my skin and a sour smell from my scalp. I’m very clean and otherwise have no hygiene problems. I realize this happens when stress is elevated and has also gotten worse with age. Also the hair in the middle of my head is proportionally off, the front of my hair has always been twice as long as the back portion of my hair. (I’ve always had a patch of hair that was oddly shorter than the rest of my hair) I also have noticed the patch of hair on my right side has increasingly gotten thinner over time and seems to feel “steamy” to the touch?
Hi Aria
Low zinc can cause body odor and affect hair growth. I have not had anyone describe the type of odor and hair loss/growth you mention but I’d be interested to hear if you notice changes if you start to supplement with zinc.
Trudy
Hi again Trudy,
the truth is I’m not sure if the smell is coming from my skin or my sinuses. I also tested pos for environmental allergies and food allergies recently. The tests indicate unusually high allergy responses. I scored numbers as high as 6 which the allergist said never happens. My vit D and Iron levels are extremely low. My mother comes from a virtual all girl family (8 girls 1 boy & somewhat look-a-likes) and they all suffer from depression and/or psychiatric disorders as well as thyroid problems. I have atleast 85% of the pyrolouria symptoms. Thank you in advance Trudy for your expertise
Aria,
Keep us posted on your success with the pyroluria protocol. You may also want to consider histamine imbalances. Joan Mathews-Larson has a great chapter on this in her book “Depression-Free Naturally”.
Trudy
Will do Thanks Trudy. Its been about 8 days since I started on the pyroluria protocol and I feel like there’s a crack of sunshine peeking through the darkness. I feel less Inflamed and swollen. Others have noticed it also. Fingers crossed :).
Thx for this site it’s been such help.
This is wonderful news Aria 🙂 Regarding feeling less inflamed, there is recent research showing that B6 helps to reduce inflammation
Hi Trudy
I have just been diagnosed with pyroluria and been given a mix containing p5p and zinc picolinate. However I have heard that some doctors prescribe taking these two separately- usually b6 p5p in the morning and zinc at night. Something to do with them cancelling each other out.
Have you heard of this and do you k ow why ?
Thanks
Tim
Hi Tim
I have not heard of this or found this to be an issue. I do like to have my clients do the zinc and vitamin B6 separately for though and this is so we can increase or decrease them independently of each other, and switch to other forms if we’re not getting the expected results.
Trudy
Hi Trudy!
I am a licensed counselor and specialize in PTSD. I always encourage my patients to add in calcium magnesium and B12. I also incorporate diet, exercise and several other factors. I deal heavily with the somatic aspects of their conditions. I have ordered your book and am hoping for additional techniques I can add to their care. Best of luck!
Hi Sherie
How wonderful that you incorporate these nutrients, diet and exercise for your patients with PTSD. Adrenal support is also key when it comes to PTSD. If you’re not already doing so, I’d suggest teaming up with someone who can order saliva adrenal testing for your patients.
I’d love to hear back from you once you’ve read my book
Thanks!
Trudy
Hi Trudy, Just came across this page when researching pyroluria. I have many of these symptoms, however, no stretch marks or white flecks in the nails. Does this mean probably no pyroluria? (I am hesitant to try the protocol since I am already on a protocol of tons of things from my chiropractor.) I have low hair mineral analysis of manganese, lowish zinc, and lowish copper. Can this mean anything pertaining to pyroluria? Thanks for your expertise! 🙂
Michele
Hi Michele
You don’t say how many symptoms and if you have the classic anxiety and inner tension that is so common with pyroluria, that may have started in childhood and that you cover up how you feel. If you have the anxiety/tension and over 15 other symptoms you may benefit from the protocol or you may just need vitamin B6 and EPO (since you say lowish zinc and copper – but I’d need to see the hair analysis to be sure). The great thing is that if it’s going to work you should notice an improvement in 1 to 2 weeks. I’d encourage you to talk to your chiroparctor and get him/her on board too.
Please do keep me posted on what you do and what the outcome is…it helps others who read this blog – thanks
Trudy
Thanks Trudy! I have had depression since early teen years with what I percieve to be inner tension, and full blown anxiety the past 3 or so years, since after my second child was born. I take meds for depression/anxiety, but not a huge dose. They keep the panic attacks away and out of deep depression, but I still feel it to a lesser degree. The hair analysis showed manganese at .005 (ideal .025-.06). Zinc 13 (ideal about 15 – 27) and copper 1.3 (ideal 1.5 – 3.2). I definitely have adrenal fatigue, but am having trouble fixing that while raising 2 little boys. It’s impossible to avoid stress! 🙂 I definitely have at least 20 symptoms from your list above.
Hi again Michele
Everything points to the possibility of pyroluria except the hair analysis but I would still suggest trying the protocol (as there are a number of ways to assess for zinc deficiency). You may also want to look into brain chemical imbalances and address those with amino acids if necessary – here is the questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/. I have great success with new moms and would be happy to help if you need guidance https://www.everywomanover29.com/services.html
Also, with the right protocol you should be able to address adrenal fatigue within about 3 months so don’t give up on that.
Trudy
Hi Trudy – Six months ago I was diagnosed with very low zinc levels (2.4) by my GP after suffering lots of health problems. Research of low zinc lead me to Pyroluria and hence this page. Thank you for putting this page on the web. When my Dr. found low zinc six months ago she prescribed high dosage of zinc 100mg and B6 – with this I went into complete anxiety attacks – on returning to the Dr. she said she had seen this before and she had prob put me on too much zinc and slowed the dosage down. I have since found out(web search) that this was probably from the detoxing of Copper. I am slowly getting better but am not sure of what levels of zinc and B6 to take in the long term. Also the Dr. gave me Manganese free zinc supplement and I do not know why. I have not had the Kryptopyrol test as I had already started on the zinc and B6 so I thought it would be pointless unless I stopped the supplements which I am not willing to do. I have recently had my copper levels done and it was 22, I am presuming after 6 months of detoxing with the zinc, vit C and saunas that this has come down considerably. My retest for Zinc was 11 – so its on the rise. I have had a lot of the symptoms on your check list for most of my life. Most Drs. do not consider pyroluria. Can you suggest a basic list of supplements I can take to maintian a good level of Zinc and B6 plus other supplements you recomend ie evening primrose, manganese. I am a 59 yo female living in Australia
Thanks for any suggestions.
Jackie
Hi Jackie
I don’t really have much to say beyond what I’ve said to previous folks – please peruse the comments and my responses above. With my clients, I start with zinc (30 mg) and rarely go above 60mg, vitamin B6 (100mg, and go up to 500mg based on dream recall) or P5P (starting at 25mg) and evening primrose oil (1300mg), plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
Keep in mind that there is no basic level as we are all unique and certainly with pyroluria, stress often leads to a higher need for the zinc and B6 for awhile.
I assume the zinc test was a blood test? Just be aware that plasma and serum zinc levels are not terribly good measures of zinc status.
Trudy
Hi Trudy
Thanks for your reply – I have downloaded your e – book and read the replies above. Yes it was a zinc blood test. I am doing the zinc taste test to determine how my zinc levels are progressing.
Thanks again
Jackie
Hi Trudy,
my wife has tested positive for Pyroluria and I have stared her on 50mg Zinc and 50mg P5P and she is doing really well. My question is she has a good dream recall now but she has nightmares every night. Does this mean that 50mg of P5P is too much or not enough? Thank you very much. Goran
Hi Goran
It great to hear your wife is doing really well! it could be too much or too little of even the wrong form of B6. I’d suggest having her reduce it to 25 mg P5P and see how she does and then increase it or even switch to 100mg B6/pyridoxine. Please let us know how she’s doing as you make changes.
Trudy
Dear Trudy,
My daughter was having anxiety attacks and feeling overwhelmed which led me to your book. I was so excited to read your book and realize that both my daughter and I probably had pyroluria. I began taking the zinc and B6 and my constant feelings of anxiety went away. If I forget to take the supplements for a couple of days, my anxiety comes back to remind me I need them! I just ordered the EPO. Now, I just need to convince my daughter to take them.
I want to thank you for your research and for the help you have given me. It has made all the difference in the world.
Janet
Janet,
Thanks for stopping by to let me know – I am so pleased it’s made such a difference. I do appreciate you commenting and I know others who read this blog will be encouraged and hopeful! Once your daughter starts to feel better she won’t look back … just have her commit to 2 weeks on the supplements and then she’ll be convinced.
Trudy
Do you have to take supplements for life
I have at least 29 of these symptoms, I have more of them on occasion.I have been diagnosed with bipolar disorder, and ADD, and I ended up here by trying to look for non medication alternatives for bipolar symptoms. Where can I get tested to see if this may be the real problem?
Hi Olivia
Where are you located? I rely on the questionnaire and response to supplementation
Trudy
Hello. I have been intensively reading/aoto-traininbg myself to understand what the problem is with my girlfriend. I read (twice) and actually “studied” many books (Optomum Nutrition for the Mind; Primal Body, Primal Mind; Wheat Belly, etc) and will certainly read your book as well. My girlfriend scored 21 on this test!!!! Just to eb sure it’s not just a generic high-score test, I did it and scored 4 (and indeed, I have no anxiety or other emotional/psy issues). Her “mainstream” doctor just tells her to take anti depressants and to lower her stress in her life!!! After MUCH researching, I (an economist!!) “prescribed” her B complez (b6, etc.), zinc, magnesium, omega 3, GABA and 5htp… and after 2 weeks, she is feeling MUCH better! She is also seeing a dynamic and very “proactive” psychologist/”coach”… these combined give great results!!
Pascal
So pleased to hear your girlfriend is so much better. Well done for researching this and looking for answers for her. She’s a lucky girl to have you!
Trudy
And I would like to THANK you for the extraordinary help you so generously provide on this blog! Any thoughts about copper detox while rebuilding b6 and zinc stores?
You’re very welcome Pascal. As with any supplements, if someone has a bad reaction, they stop of reduce the amount.
Hi Trudy,
What a great service you are doing to share your wealth of information! Thank you! Is there a lab that you would recommend where we could get the pyroluria urine test done ourselves without a doctor’s order?
Thanks again! You are a great blessing to many!
Hi Kay
You are very welcome! It’s important to me that people know about this! I don’t do pyroluria testing with my clients and simply have them do the questionnaire and see how they respond to the supplements. I am looking into other labs for testing as the one I used to use no longer offers it and other labs I have tried do not seem to be as reliable. If you find one, please do share here. Thanks!
Trudy
Good afternoon Trudy,
my name is Shirley, i am from Slovakia, please would you give me some advice- in my country there is no chance to consult holistic doctor, who would know something about pyroluria.I learnt something about pyroluria only last week. Do you think I could have this condition? My symptoms: fearful since childhood, sometimes I have bad dreams, bad reactions to anxlyotics-I can´t take Lexaurin-bromazepamum-because it causes me mania, pale face, joints cracking, sensitivity to sunlight, frequent fatigue in the morning and during day- I sleep about 10 hours ev.day- in the evening I am fresh, but in the morning I am rather tired and sleepy, anemia, cold hands and feet, bad reactions to stress and some situations-e.g. I can´t live in a dormitory with other girls in the room, because I´m easily upset by them and I can´t concentrate on learning with other people in the room, I can´t drive too, because it´s too stressful for me, i am big introvert, loner, shy, hypersensitivite to other people, gossipry, violence in television, bad reaction to changes in general, rather crooked teeth- I wore braces several years in puberty, bad acne in puberty, frequent headaches from childhood. Thank you very much for answer and advice.
Hi Shirley
If you score is 15 or more, and it seems that is likely, you will probably benefit from adding zinc, vitamin B6 and evening primrose oil. I have my clients do this and then we look for improvements in symptoms.
The fact that you’re tired in the morning and during the day, and fresh in the evenings may be related to your adrenals. You may have low cortisol in the day and high cortisol at night – this high cortisol can also contribute to anxiety.
I just did a blog post about the probable connection between introversion and pyroluria https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/. I’m curious to hear which of the introvert qualities you relate to?
Trudy
Hi Trudy,
Pyroluria questionaire- I identify with numbers 1,2,3,4,5,9,10,11,12,13,14,15,16,24,26,28,29,31,33,36,38,39,41,42.
Introvert traits- I identify with numbers 1,2,3,4,6,7,9,10,13,15,18,19,21.
Can I take venlafaxine-37,5mg daily- with zinc,B6 and other pyroluria supplements?
Thank you.
Hi Shirley
Thanks for looking at the introvert questionnaire and sharing your scores on this and pyroluria. I see many overlaps.
Typically zinc, B6 and EPO are fine to take with SRNIs and SSRIs but when I am working with someone who is taking medications that affect serotonin levels, such as a SRNI like enlafaxine/Effexor, I have them check with their doctor. You also want to have your doctor or other health practitioner educate you about serotonin syndrome and monitor how you’re doing.
Please let me know if you need some help navigating this and communicating with your doctor. I do offer long distance consulting.
Trudy
Trudy,
This is really interesting. I read the Huffington Post article and if I remember correctly I even commented on it.
I have often said there is a difference between feeling shy and being an introvert. I have heard the true difference between extroverts or introverts is whether you need alone time or social time to recharge.
I actually consider myself an extrovert but on any day I can take one of these test and be classified as an introvert. Maybe it has to do with my levels on that day.
Thanks for the information. Maybe it is time to add another supplement to my nightly set.
(I took the tests for you, HP ~ 1,2,3,4,5,6,15,16,17,18,23 Yours 1,2,3,5,9,10,12,13,14,16,17,19,20,29,30,34,35,38,41.)
Rose, thanks for your thoughtful answer! I see many overlaps for you. I find it interesting that you fluctuate between feeling like an introvert and then like an extrovert. There may be an explanation – pyroluric symptoms tend to get worse when you’re under more stress.
Posting the Huffington Post/HP link here for other readers https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/
Trudy
Good Afternoon Trudy,
My name is Cynthia and I just learned about pyroluria and I have been reading several websites about this. I have several questions about the treatment and testing. First of all do we really need to get tested? Also how many times a day do we need to take the the B6 zinc and EPO? And do we take them all together? Many websites say it is dangerous to self treat is that true? I mainly suffer from severe anxiety since I was a child and now as a 29 year old adult I have episodes of severe anxiety on and off. I can be months without any symptoms but then as a get stressed it comes back. Could it really be pyroluria?
Cynthia
Hi Cynthia
I use the questionnaire and my client’s response to the supplements rather than doing pyroluria testing. It is common for those with pyroluria to feel much worse during very stressful times. The timing and amount of B6, zinc and EPO depends on each person and how bad their symptoms are and where they are deficient. My clients typically start on 100mg vitamin B6, 30 mg Optizinc and 1200mg EPO in the morning and we may go up from there based on dream anxiety, dream recall, zinc tally, fatty acid levels and so on.
It’s hard to say if you do have pyroluria. There are many factors to consider: what is your score is when stressed and when not stressed? do you get some of these nutrients in a multi or other supps? do you feel better when taking these supps?
If you have concerns about self-treating I’d suggest working with a nutritionist or integrative doctor/practitioner who is familiar with pyroluria.
Trudy
Thanks for responding to me Trudy,
I did score 20 from your questionnaire so I will start the vitamins. I can take the regular zinc and B6 from over the counter or is their a specific one that you recommend? Also what would be some side effects to watch out for?
Cynthia
Cynthia – yes I use over the counter supplements with my clients. I talk about forms in other comments in this thread – please check those out. For too much B6…peripheral neuropathy, for too much zinc or the wrong form…nausea. It is all detailed in the pyroluria chapter in my book. It’s too detailed to go into here 🙂
Trudy
Hi Trudy,
I have 19 of the symptoms on the list. I want to start the supplements…but i had a bad experience with B6. I got flushed really bad from it. Do you recommend a specific form of B6?
Thanks!
Chelsea
Hi Chelsea
I have not had anyone experience flushing from vitamin B6. Could it have been vitamin B3, also called niacin? My clients typically start with 100mg vitamin B6 if they score high and don’t recall their dreams or have nightmares
Trudy
Hi Trudy – thanks for the info, the website, and taking the time to respond to all the queries. While the answers seldom differed, it was interesting to see the range of questions and your responses to them.
I have a question re one of the things you mentioned – low levels of alkaline phosphatase. Can you please explain a little more re how you interpret it? E.g. low = insufficient zinc or vice versa.
Kind regards,
V
Hi V
You’re welcome! Zinc status is tough to measure and low levels of alkaline phosphatase (a zinc-dependent enzyme) is one marker of possible low zinc levels. I use this plus the zinc sulfate test/liquid zinc and symptoms, plus response to supplements. Here is a link to some research on this http://www.ncbi.nlm.nih.gov/pubmed/10441804.
Trudy
Hi Trudy,
I have been tested for pyroluria twice because I scored so high on the questionnaire but both times it has come back negative. I was told it was due to having very low levels of zinc. I am supplementing with 30 mg of zinc picolinate and a bit of Vitamin B along with Borage oil. Is that normal to be tested 2 times and it come back negative? I truly believe that pyroluria is my issue. Do you think zinc picolinate is a good choice or would Optic zinc be better or a combination of both?? And do you find that some people do better on P5P than B6 or a combination of both? I am working with a holistic pharmacists that has studied pyroluria but she has not recommended P5P for me and only plain B6. I am ever so slightly better but have a long way to go.
Hi Jo
If someone has the symptoms and responds well to the supps then I don’t worry about the test. I’m curious, how high was your score?
You don’t mention who you did the test with? some labs are not as reliable as we’d like and I wish there was better testing available!
We are all different but I start my clients on the Optizinc and 100mg B6 and we go from there based on how they feel. Some do need to switch to another form of zinc and some do better on P5P or a combo of B6/P5P. It’s a matter of trial and error. I can’t offer you specific advice here but if you need more help with the combinations I do have a whole chapter on pyroluria in my book “The Antianxiety Food Solution”.
I’m glad to hear you’re ever so better! when you have the right combo and doses you should feel 100%.
Trudy
Hi
Great reading! My 22 year old daughter had most symptoms and has a recent diagnosis of pyroluria. Extremely high copper and high histamine. She has been on supplements for 6 weeks. she has failed UNi, lost confidence and had put on at least 20kg (huge weight gain around her thighs hips and middle) although being on a very strict intolerance diet (no gluten dairy almonds lentils soy and eggs). Her headaches have stopped and she seems a little less anxious. She is still on ADHD medication. Will she lose the weight, regain her mental ability and be able to return to study?
Hi Helen
I’m so sorry to hear about your daughter but pleased she’s finding some resolution with diet and supplements. I really don’t have enough information to be able to comment on her longer term results and can’t do that here on the blog.
Some things to consider: I always look into low catecholamines for the ADHD symptoms and low serotonin for low confidence. Here is a questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
I also find that when someone is on the correct dose and form of the pyroluria supplements they see big improvements in the pyroluria symptoms within a week.
Trudy
Hi Trudy,
My main issue is actually binging and eating disorders in general. I’m gluten and sugar free but still binge massive on things like nuts, cottage cheese, especially eat nonstop for hours although things that are not junk. I have tried aminos in Julia Ross’s diet cure found out they didn’t work actually made me worse. Than in depression free naturally I came across pyroluria which explained aminos may not be working because of low b6. I’m in Turkey and can’t find any nutritional doctors but despite I sent my urine to UK for pyroluria testing which came up negative although I have many symptoms from list. So do you think eating disorders may be relateed to pyroluria and can you recommend any doctor from Turkey? Thanks a lot in advance
Hi Ayse
Rather than the pyroluria test, I rely on symptoms and response the zinc, vitamin B6 and evening primrose oil. If someone is low in these nutrients it can affect neurotransmitter levels as both zinc and B6 are co-factors that are needed to make them. This could be a factor in binge eating.
A few other things to consider:
– Binging on fatty foods like nuts and cottage cheese may be related to a fatty acid deficiency
– Amino acid quality and timing is a factor in how effective they are
– Underactive thyroid can affect how well the amino acids work
I’m sorry but I don’t have a doctor referral in Turkey. I’d be happy to set up a time to talk with you.
Trudy
I believe I have pyroluria after using your checklist. My anxiety has gotten much, much worse as I’ve aged and I’m fearful about everything. I was wondering if one doesn’t have access to health insurance, what dose of zinc and B6 would you suggest to start with to see if it indeed does help? I’m at my wit’s end and was so happy to come across your article.
Thanks.
Hi Shay
I start my clients with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg), plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
I’d also suggest looking into the possibility of low GABA or low serotonin – here is a questionnaire to get started https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
I have a whole chapter on pyroluria and a chapter on the amino acids in my book The Antianxiety Food Solution. I also do individual consults if that interests you.
I’m curious if you consider yourself an introvert? here is that questionnaire https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/
Trudy
Hi
I did your pyro questionnaire and got around 28 yes responses – so I feel I’m probably suffering from this problem.
My question for you is regarding the liquid zinc test which I use to measure my levels.
But I find it confusing as I feel I get contradictory responses.
An example of this is yesterday my taste response was: an immediate taste of the liquid within a second or two that was not at all unpleasant.
Whereas today I couldn’t taste anything immediately however after maybe 6 or 7 seconds i began tasting it and it was almost unpleasant. I’m not sure what to make of this?
Are you able to offer any insight as to which is a more important indicator, the immediacy or pleasant/unpleasantness of the test?
Thank you – and what a great site this is!
Hi Liz
Yes, it’s unusual! Some things to consider: is the zinc fresh? is it zinc sulfate liquid? are these other symptoms of low zinc (see the pyroluria questionnaire)? did you eat something before-hand (this typically shouldn’t make a difference but you never know)? test it out more than once and have someone else do the test too.
I’m glad you like my site – thanks!
Trudy
I answered yes to 1,2,3,4,6,16.21,24,25,26,27,28,29,36,39,42. GP suggested Zinc, Omega-3, Vit D, St. John’s Wort supplementation since he knows I would prefer not to take antidepressants. Well, I ended up on an antidepressant without trying any of his suggestions because I am so exhausted after trying so many vitamins/supplements that have not worked in the past. This post has given me a bit of new hope.
Can you supplement with zinc and B6 while on an antidepressant?
Patrick – I’m so glad this post has given you hope! I see so much success with these nutrients when someone scores high on the questionnaire.
I have no problem with my clients taking zinc and vitamin B6 when on a single antidepressant. Zinc research actually shows it’s improves the effectiveness of SSRIs! http://www.ncbi.nlm.nih.gov/pubmed/24130605
I suggest talking to your GP since he’s willing to work with you on this. Keep in mind that most pyrolurics tend to need omega-6/evening primrose oil and not omega-3s
Keep us posted on how you’re doing
Trudy
Hi Trudy,
Thanks for the response. As for B6, I have always had trouble with B-complexes. I tend to get more anxious/aggressive depending on how much I take. But I was never sure if it was the B12 or the B6 that was causing this. Any thoughts?
I’ll look into the omega-6/evening primrose more as well.
Thanks!
I have not heard of either of these causing anxiety/aggression. I’d try them individually and read labels for other ingredients.
Would chlorella cover this? Or best to buy zinc and b6 separately? Many Thanks.
Sara, chlorella would not cover this
WOW – I have been talking to doctors about my symptoms for years and years and have never been able to get any answers. I took your Pyroluria questionaire and have almost all of the most common signs and symptoms. Will get on B6 and zinc today!
Thanks!!!
Do keep us posted on how you do Denise
Hi – I have a question in regards to B6 and dream recall…
If I sleep for a short time 5,6,7 hours I can’t really recall my dreams
But if I sleep for longer 8,9,10 hours then I can remember dreams
Does this mean I’m still B6 deficient?
Thanks again
Hi Liz – the big question is are they pleasant dreams? if not then you may need vitamin B6.
Hi Trudy,
I just finished reading The Anti-anxiety Food Solution. Thank you for an informative, concise & inexpensive guide, especially for those of us who are figuring this out all alone. I have already recommended it to 4 other women who have depression, anxiety, and/or sleep disorders.
I believe I have pyroluria and am about to get the liquid zinc, to test. I already have had no dreams since a very bad car accident/mild brain injury 25 years ago; could that have led to pyroluria manifesting, and/or B6 deficiency?
I did start taking tryptophan (500 mg, 3pm and 11pm) and it is really working; my mood is brighter, my impulse control is better, and I feel more able to tackle things every day! I’ve had longterm mild depression and 5HTP just wasn’t working. I then worked up to 3mg of time-released melatonin (11pm), because of longterm sleep problems.
I doubled the dose of tryptophan at 11PM and was having mild headaches the next day. Do I need to wait until my body adjusts to this larger does or should I go back to 1 500mg pill at night? Also, I am still not sleeping through the night. Should I take 4mg of melatonin at 11pm or take 1 when I wake up during the night?
I can’t wait to do the zinc tally test and start the pyroluria treatment; thank goodness I learned of this through your website and book. It may solve longstanding health issues for me, perhaps genetic… …or, a mild brain injury left me with mild depression, fatigue, sleep problems, and ADD-like cognitive issues. (At some point, I plan to try tyrosine, as you discuss.)
Thank you, Trudy, for sharing your expertise and years of experience with us!
Laura
Laura
Thanks for taking the time to post here – SO lovely to hear stories like this! Thanks for sharing it with others 🙂
Pyroluria is made worse by stress and a car accident could be factor.
I can’t give you specific advice here but will say this: too much of any of the aminos will cause a reverse effect and more is not necessarily better; tryptophan can be taken with night wakenings and additional melatonin may help (provided you don’t feel too tired in the morning); sleep issues can be low serotonin or low blood sugar or food intolerances or high cortisol or bad sleep hygeine (tv, computer, emfs etc) and even parasites.
Trudy
Thanks for responding so quickly!
I have a feeling the pyroluria is gonna prove an important factor; I just completed a (quite stressful) masters program and was far away from home for several years. Now that I am back home with my dh, my health has crashed.
With the new pyroluria info which I now have (again TYVM), and with reflection, I can see I have a life-long pattern of crashing after stressful life events (a family death, the masters, leaving a job, moving…); each time I HAD to have a recuperation period …unlike most other people who just seem able to roll on.
Today, I did the zinc tally test (got a 1 or maybe 1.5). I already do not dream at night, and I had 23 positives (17 of them the common signs) on your pyroluria test. So I am starting B6, zinc and EPO today, along with a daily B vitamin; slow dose changes and lots of observation of reactions… …as well as re-reading your book and going to get Julia Ross’s and Joan Mathews-Larson’s books.
I am assuming that adding the B6/zinc may help boost the tryptophan & melatonin, which I already (successfully, yahoo!) started.
Unbelievable that such a relatively simple fix to a vitamin/mineral deficiency is not more recognized and treated by family doctors and ob/gyns, the women’s doctors!
I can’t wait to see where this takes me ! I’ll keep in touch on your website…
To brighter moods, deep sleep, renewable, abundant life-energy,
Laura
PS I LOVE that I get to talk to an author!! Isn’t the internet great?
Laura
Glad you’re making the stress connection. And yes zinc and B6 are co-factors for making the neurotransmitters. And yes, so simple and yet so life-changing!
Julia’s and Joan’s books are awesome!
Ditto this: To brighter moods, deep sleep, renewable, abundant life-energy
Trudy
PS yes you get to talk to me here! I love interacting with my readers! And do keep in touch
Dear Judy,
have you come across a connection between pyrroluria and focal musicians dystonia (musicians cramp)?
Thanks and Best,
Jay
Hi Jay
I have not and until I looked it up I was not aware of this condition. I’m curious why you’re asking? Do you or someone you know have symptoms of pyroluria and focal musicians dystonia?
I do see some overlaps with dystonia and mood so it’s possible there is a connection:
(1) “it is now thought that people affected by dystonia are more likely to experience mental health conditions such as depression, anxiety and OCD even before the physical symptoms of dystonia appear. It is not known why this is – but it appears that whatever causes dystonia may also affect mood and behaviour in some way.” http://www.dystonia.org.uk/index.php/about-dystonia/dystonia-and-mantal-health
(2) “An additional relation between dystonia and mental health conditions is that some drugs used to treat psychoses can cause tardive dystonia / dyskinesia. With the new generation of these drugs (called dopamine receptor blockers) this is much less likely than it used to be – but unfortunately a small risk remains.” [also from the above dystonia site]
(3) Recommended drug treatments are also often used for anxiety and depression http://www.dystonia.org.uk/index.php/about-dystonia/treatments/drug-treatments I’d suggest assessing for low GABA, low serotonin and low catecholamines and determining if amino acids may give the same relief
(4) If you have pyroluria, you’ll have low levels of zinc and vitamin B6, key co-factors in making serotonin and GABA and other neurotransmitters
I did a quick search of pubmed and came up with the following:
(1) All three (mood, pyroluria, dystonia) have a possible autoimmune/gluten/diet connection http://www.ncbi.nlm.nih.gov/pubmed/22555904. Here is a case study where the dystonia resolved on a gluten-free diet http://www.ncbi.nlm.nih.gov/pubmed/17377923
(2) Wilson’s disease (high copper/low zinc) can have symptoms of dystonia http://www.ncbi.nlm.nih.gov/pubmed/23677665
(3) Stress, caffeine and alcohol affect all three http://www.ncbi.nlm.nih.gov/pubmed/23009754
Thanks for asking your question – I learned a lot by looking in to this!
Trudy
Dear Trudy,
thanks for a wealth of information you posted. I just found the post and will look through all of it; meanwhile, I started taking B6 (Pyridoxine Hydrochloride) 120mg and Zinc USP 60mg 2 weeks ago and do find some relief already. As you may have guessed, I have had dystonia for a long time and had to put a professional musician’s career on hold, and when I read your site, I found that I have a large number of symptoms from your list – I am hopeful.
Thanks again,
Jay
NB: please let me know if the dosage is about right. Doctors I talked to did not recognise this condition.
Jay – thanks for sharing. I am so pleased you’re hopeful and finding some relief. Is this from the social anxiety or the dystonia symptoms or both? I’d love to hear what has improved and how much. It’ll help others who read this blog!
The starting dose I use is 100mg B6 and 30mg zinc and slowly go up to 500mg B6 (based on dream recall and symptoms) and 60mg zinc (based on symptoms and zinc tally test). I can’t give you specific advice via the blog unfortunately.
But I will talking about pyroluria on my upcoming online summit – The Anxiety Summit – June 9-22. You can get access here http://www.theAnxietySummit.com I’m sure you’ll pick up some good stuff from many of the other speakers too. Hope you can join us!
Trudy
I am just blown away by listening to you on The Anxiety Summit!! I just listened to the interview on Pyroluria. I have always wondered why I am the way I am! Pyroluria. I think I have this. I scored 20 on the symptoms list. I always just thought I was an introvert. I have always been fearful since childhood! I have also been primarily vegetarian (fish once in a while, chicken or turkey rarely) for the past 8 years. No dairy. I have been so hung up the dangers of meat eating and how it is linked to cancer. I have lots of cancer in close relatives who are heavy meat eaters so I have always shyed away from meat. The literature I read is that animal protein is linked to elevated IgF-1 in the body which can lead to cancer. I have read where it is better to get your protein from plants and follow a plant based diet. It is so confusing out there. I have followed Dr. Joel Fuhrman’s protocol for 8 years. While I have improved in many areas, the emotional area not so much. Can you still be a healthy vegan if you supplement but do not eat animal protein? I think a symptom of pyroluria is a “fear” of disease from eating a animal protein diet.. Yikes, what to do. Dr. Fuhrman also frowns on taking isolated supplements like B6 or Zinc. He believes it causes other imbalances in the body. I am tired of not feeling 100% so I really want to try the supplement protocol and see what happens. I have taken EPO for years, 1500 mg. It has helped with menopause. I am 62 years old. Menopause was extremely rough; this happened at age 47. I suffered from horrible panic attacks and anxiety during that time. That has thankfully resolved. I appreciate all the work you are doing in this area and look forward to downloading the Kindle version of your book. I love the anxiety summit and have learned so much. My husband has over 20 of the symptoms also so I may put him on the same supplement protocol. His symptoms are even more exaggerated than mine. He has told me for years about the strange, bizarre dreams he has. He is also no nervous and anxious all the time, has anger issues, no attention span, and totally antisocial. Thanks again for all your knowledge!
Elise
Elise
So pleased you’re blown away! and that you’re finding answers for you and your husband.
My clients with anxiety and mood issues do better on animal protein. I say just listen to your body. And remember quality is key. I’m assuming you heard Dr Jacka’s research interview – women do better when eating grass-fed red meat.
Many people need supplements to heal and address biochemical imbalances. I wish we could do it with food alone but we can’t
Please keep us posted on how things go with you and hubby
Trudy
Hi, I cannot tell you how much I have been enjoying the Anxiety Summit. I had been searching for information like this so the timing has been perfect! Thank you for this questionnaire. I scored 29!
I am hoping you can guide me on something. I have an adult handicapped daughter that I believe is affected by this in a huge way. She is 35 but maybe 3 mentally and is non verbal so some of these answers I can only guess at and use observation. The problem lies in that she lives in a group home and they must adhere to strict protocols and cannot give her anything without a prescription, even sunscreen!! Even though I live in the DC metro area, good luck finding a doctor who knows what this is AND accepts her Medicaid. We also have an MTHFR defect and I am struggling to get her help with this.
She has severe OCD, anxiety, and self-injurious behaviors. She isn’t used to going to a day program and she just really pitches a horrible fit when they try and coerce her. I think this is her way of showing social anxiety and is very much “overwhelmed in environments with excess stimulation”. Instead of the harmless zinc and B6 she is given Seroquel and Prozac. The new psychiatrist even wanted to give her Buspar and it was my turn to pitch a fit! It makes me sick to my stomach that I have so little control but we cannot get her off these meds without replacing them with what she DOES need.
I just do not know how to go about this. Any suggestions?
Hi MaryEllen
I’m so pleased you are enjoying the Anxiety Summit!
I don’t have an answer for you about your daughter right now and will post on an integrated forum I am part of to see if someone has some ideas. It’s very sad that you don’t have a say. The good thing is that you know about better options and just have to find a way to help her with them.
Trudy
Wow, Trudy,
My mom had NO sense of smell (which was always a curiosity) and she fit so many of the other questions. Miscarriages, social discomfort..so worked nights)
I had /have terrible nightmares (or at least not such good dreams…when I remember them) and terrible car sickness, as a kid, nausea in a.m.s, light and noise bother so much lately and have spent three years in ‘isolation’! SO MANY want/have wanted to label everything ‘mental illness’ and I know i am not crazy!..AND getting on those supplements ASAP!!!! Thanks you so much, and I wish I had known this for the pain and suffering both my mom and sis endured (both no longer alive).
Maureen
You are not crazy!
I am so pleased you can now make sense of things and I’m so sorry about your mom and sister
Thank you for sharing – your story will help others who read this
Trudy
Hello Trudy,
I left my numbers on the other quiz too. For this one I got: 1, 3, 10, 12, 14, 17-20, 26, 27, 30, 31, 35= 14…..barely made it, lol! After listening to the summit and reading this page and the other one with Carolyn’s article I feel that my symptoms are related to endometriosis (& all that it comes with) or PTSD. I have added this info to my toolkit though so if I start feeling “out of wack” I have more options than medications. Thanks for all the insight on zinc and B6!!!!
Thanks for doing both Debra – glad this has helped
Hello Trudy,
I left my numbers on the other quiz too. For this one I got: 1, 3, 10, 12, 14, 17-20, 26, 27, 30, 31, 35= 14…..barely made it, lol! After listening to the summit and reading this page and the other one with Carolyn’s article I feel that my symptoms are related to endometriosis (& all that it comes with) or PTSD. I have added this info to my toolkit though so if I start feeling “out of wack” I have more options than medications. Thanks for all the insight on zinc and B6!!!!
Hi Trudy
I’m so glad I found your anxiety seminar. I finally feel like I’m on the right path of figuring out the anxiety that runs in my family.
I and many family members have symptoms related to severe anxiety and social anxiety, gluten sensitivities, blood sugar problems, insomnia/sleep problems, memory problems, skin rashes. I hit many of your symptoms on both lists. I had 18 on the introvert list: 1,2,3,4,5,6,7,9,10,12,13,14,15,16,18,20,21 and 23
I had 21 on the pyroluria list plus 8 more on the not as common list: 1,2,3,5,6,9,10,12,13,14,16,18,19,20,21,24,25,26,27,28,29,30,31,32,35,36,38,39,41
I’m sad I missed your talk on pyroluria. I tried to access it today monday but it wasn’t available. I did hear the one on adrenal healing by dr Day and am looking forward to listening to more and researching pyroluria. Thank you for all of this information I just need to figure out where to go from here.
Hi Lisa
So glad you’re on the right path! thanks for sharing your results from the questionnaires.
Mine aired on Sunday until 8:59am today – sorry you missed it!
We’ll be voting for the top 5 for replays so stay tuned
Did you see the blog post for my pyroluria call? some good stuff there
Trudy
Hi Trudy,
I’ve been enjoying your summit very much and so impressed how your answering everyone here. I took this test on a whim to see if it even sounded familiar and I have nearly all of these! As a kid I had inner tension being shy. I’m in my second adrenal crash today I just found out this week. I never felt like eating breakfast. Lately my appetite has been poor. My joints,(knees) always crackled! I am very pale, and burn easily. I was once a vegetarian. My eyes are sensitive at nightime to light. I always use sunglasses in the day. Stiches when I ran as a kid. Fatigue more and more. LOW IRON ALL MY LIFE! Just found out my Ferritin level is again only 5. I WANTED TO find out WHY. I am gluten sensitive, which solved some of my issues 3 years ago. Stress, our family has so much of it. Small gatherings yes, but I’ve forced or taught myself to not be sensitive to critism. Inflamed gums…on my gosh…how can this be?
I”m in a slump right now, with my severe anemia and adrenal crash. And not sure where to start. I don’t have a doctor that will test for anything here. My Functional Med. doc is off for 6 months. I studied natural health 20 years ago so have found most of my own answers. We have 3 boys with autism, one with OCD and I think I”m a little OCD. I work from home, and TYpe A personality and now that I’ve crashed again, have to figure out a way to get back up, but properly! We just lost our home in a house fire, July 2013, and lost our business and lived homeless for 6 months. I can take alot of stress, but it has finally caught up with me. I need to rebuild my health so I can be here for my boys (and help them too) and already take so many vitamins. (Bcomplex, Iron, Magnesium, Vit C, Cod Liver Oil, gelatin, Kelp) and don’t want to throw in more that are not needed. What do you suggest Trudy, where do I start? Will treating this solve my chronic anemia problems? Would I understand this more in your book? I’m so exhausted with our life, still trying to figure out where we will live, and so depressed about our future. What do you suggest that would be best for me right now? Could this be an answer to all my life? Thanks,
Rita D
Rita
Wow, you have been through a lot – I am sorry! – but I’m so glad you’re finding answers here. You’re asking a lot of questions here 🙂 and unfortunately I can’t help via this blog. It sounds like you need to find someone to work with – it’s very challenging trying to figure this out alone, especially when you are so tired. My book does spell out all the supplements for pyroluria and adrenal support, and I’d be happy to do a phone consult if that would help.
I do agree that supporting the adrenals and addressing the anemia will make a world of difference.
Trudy
Interesting Info that I did not think applied to me but after listening and reading the questions of discovery, It seems to be a possibility for me.
Could a hair analysis prove satisfactory in diagnosis?
Thank you 4 sharing your story as it applies to 40% of us, who knew?
Looking forward to Part 2
Blessings ~
PLEASE!! Aren’t there some people who genuinely do not like meat, particularly red meat?
I have never cared for it much even as a child and the smell, thought and look of it is a complete turnoff!
I do eat organic eggs, cultured organic dairy, some small amounts of organic chicken, and fish.
I would eat more fish (and used to) but much of it is not safe now either.
I have always craved tuna fish (never meat) but now hardly eat it because of the mercury!
I am blood type A.
What is your view on the blood type diet/philosophy?
Thank you for your time and information, and thank you for putting together this summit!
It is gr
Hi kd
You’re welcome! I agree that type As may do fine with less red meat. But when I hear an aversion like you describe I think low zinc. I just see my clients do so much better with red meat that I always try and encourage them to eat it but we do need to find a way for it to be enjoyable
Trudy
Hi Trudy!
So happy I found your web site. I am a naturopathe and have tried many, many things to improve my situation. Some helped, but still I am still anxious, stressed out, lot of food allergies, eczema, fatigue,depression, etc. I just bought your book today,I can’t wait to read it!
I score 23 positive on the pyroluria test and have really mild taste on zinc test. I already take almost all the supplements you are talking about, but I guess not in enough dose, and I don’t take GLA right now, wich I will add to my protocol.
I have an heriditary blood condition called sphyrocytosis, so my hemoglobin is always low. I read that kryptopyrroles are generated during the synthesis of hemoglobin. Because my spleen is always distructing my red blood cells, my body is always generating new red blood cells to compensate. Could there be a link there why I have so much difficulty to get well? I also have à deadly nuts/peanuts allergy. I take some omega-3 from time to time, but I guess I should take more.
Dream of that day when I will finally feel well!
Thank you!
Nathalie
Hi Nathalie
Great – you’ll get a lot out of my book!
I’m not familiar with sphyrocytosis and have not heard of a connection to pyroluria. If we were working together I would make sure you have the correct amounts of zinc and B6 and EPO (and possibly do fatty acid testing). I’d also consider genetic testing
Trudy
I responded yes to around 20 of these questions! Do you know what causes the pain in the left side? I am in the process with my doctor, or trying to figure out what this is and I am wondering if it is a symptom of pyroluria rather than the alternatives we have been looking at! Thank you for all of the wonderful information. I have ordered your book and cannot wait to read it!!
Hi Michelle
The pain in the left side (or stitch) could be due to contracting of the spleen, which is squeezing extra oxygen-carrying red blood cells into the circulation.
It’s a good idea to get things checked out with you doctor.
Enjoy the book and thanks!
Trudy
Thank yo so much for this information Trudy! My 13 year old daughter is suffering from many of these symptoms. Major social anxiety (she has no friends) and low mood are her main issues as well as a very limited diet. She will only eat cereal, toast/bagels, pasta, pancakes, fries/hashbrowns and sometimes chicken strips (but only take-out not homemade). She will occasionally eat apples, blueberries, grapes or carrots. She will sometimes tolerate a smoothie (but not if I add any protein powder). We have tried to expand her diet for years with no success, she will gag and become very emotional. Even the smell of certins foods makes her nauseated. I suspect a gluten allergy but if we took that out of her diet she would have nothing left. She will not swallow or chew vitamins other than flinstones (which I know are terrible). She will not eat any other sources of protein (eggs, almonds, meat) but will eat peanut butter. I am sure her diet is affecting her mood significantly, althought she has exibited anxiety since toddler age. We have a naturopath who made some excellent nutritional suggestions but my daughter won’t eat anything suggested. She gave her some homeopathic tinctures but we did not see improvement. I am wondering where we should start? I do think she would take a zinc supplement and/or B6 as long as it was small with no odour or flavour. Do you start with your same recommended does even for children? Also, we are in Canada, not sure if anyone her specilizes in this area?
Thanks so much.
Hi Dina
Here are some things that I would consider:
– First an amino acid trial – tryptophan and/or GABA – both are calming and could help break the carb addiction
– I’d also focus on zinc (assuming it’s low) as this could help with protein intake
– Vitamin B6 does help with the nausea and this together with the zinc and aminos would help the mood
– I’d also check blood work and make sure iron anemia is not a factor
For kids of 120lbs I start with adult amounts (or less if they are sensitive)
Let me know where in Canada you are and I’ll see if I can refer someone. I’d also be happy to do a phone consult.
Trudy
Hi Trudy,
I am back again! At this point, I am taking 60 mg Zinc and 240mg B6, but will increase the B6 to 320 mg. I take some of it in the morning, some in the evening and will take the additional 80 mg B6 around mid day. The 75-80% relief is felt in the tremor/dystonia.
The main symptoms have always revolved around the tremor/dystonia disorder in the right hand which set on fully around the age of 20 and severely crippled development as a professional musician. Anxiety/depression born out of the devastating experience of completing a course of study in performance with this disease was the other driving component of a vicious cycle, additionally fed by inappropriate diagnosis and complete lack of medical support through inability to diagnose correctly.
There are many musicians suffering from similar issues and it is important that this information gets out and can maybe alleviate a lot of suffering.
Thanks and all the Best,
Jay
Jay
Thanks so much for coming back and sharing your improvements. I am so happy for you! This is just wonderful!
Thank you too for enlightening me. I just presented on pyroluria to the National Association of Nutrition Professionals and shared your story – so we’re getting the message out there. If you know places to share this blog with other musicians please do so.
I would also suggest looking into the possibility of a B12 deficiency – one of the symptoms is the tremor. You’d want to test B12, homocysteine and MMA/methylmalonic acid. Sally Pocholok’s book “Could It be B12” is a great resource.
Trudy
Hi Trudy,
Thank you for directing me to this wonderful resource (and I love reading your book!)…
I am wondering about Pyroluria – it has opened my eyes in thinking about how to address stress, anxiety and depression which seems to be common in post-partum mothers that I see in my office. A couple questions for you: 1) can Pyroluria be triggered by pregnancy? Exacerbated by pregnancy? 2) Does having Pyroluria put a person at an increased risk of post-partum anxiety? and finally, although this doesn’t seem related, it may be… 3) Is increased thirst associated with Pyroluria? Many breastfeeding mothers I see who have increased levels of anxiety also report excessive thirst (as well as increased urination, and sweating)…all of which I naturally chalked up to hormonal changes after baby arrives, but the idea of a person’s reduced ability to absorb/utilize B6 and zinc has me wondering if it’s more than hormones and maybe Pyroluria. And the need for B6 and zinc in hormone balance post-partum certainly seems like this is a critical time to address those deficiencies.
Sara Peternell, MNT
Sarah
Great questions I don’t have the answer to except to say that high copper (and therefore low zinc) can be a factor in post-partum anxiety so it’s possible that those women have pyroluria and the “stress” of pregnancy and hormone changes could trigger symptoms.
In general, I have seen zinc and vitamin B6 to be crucial for hormone balancing at various stages of life – for teens with PMS and/or heavy periods, PMS in older women, during perimenopause and menopause – so it would make sense that they are also important during pregnancy. I just haven’t worked with enough pregnant women to know.
A few other things to consider: We do know that low B6 is a factor in morning sickness (http://www.ncbi.nlm.nih.gov/pubmed/25052410); the birth control pill depletes vitamin B6 levels; low zinc is a factor in preeclampsia (http://www.ncbi.nlm.nih.gov/pubmed/24966900) and infertility (http://www.ncbi.nlm.nih.gov/pubmed/24599289), preterm birth (http://www.ncbi.nlm.nih.gov/pubmed/24504208) and many studies show it’s a common deficiency during pregnancy (http://www.ncbi.nlm.nih.gov/pubmed/24717399); more boys seem to be miscarried in pyroluric families
So glad you’re enjoying my book!
Trudy
Sara, copper is necessary for angiogenesis, so copper rates in women go way up during pregnancy as the fetus needs to form blood vessels. Copper tracks with estrogen – perhaps to allow for this increased need during pregnancy – for this reason, many women with PD will have increased symptoms during high-estrogen times of the month. In many women with pyroluria, the body burden of excess copper is already high. Post-pregnancy, women with PD — low zinc — will have a hard time getting those copper levels down again. Zinc is what prompts the body to make ceruloplasmin and metallothionein, the proteins that bind to copper and allow it to be utilized and excreted by the body. This accumulation of excess unbound “toxic” copper is further compounded in people with MTHFR mutations, who have problems with metal excretion in general. Pyroluria and its attendant copper toxicity play a major role in postpartum mood imbalance.
Also, B6 is involved in fluid retention (regulates sodium/potassium balance), so that may be a factor in the excess thirst? Here’s a great article I found recently on all the important things B6 does in the body – the range may surprise you:
http://divinehealthfromtheinsideout.com/2013/01/the-importance-of-vitamin-b6/
One last thing, for any animal lovers out there: Dogs can also suffer from pyroluria. My dachshund’s severe social anxiety (quite common in her breed) has dramatically improved from supplementation with zinc + B6. I use Zinpro (zinc supplement formulated especially for digs) (although I’m sure a titrated dose of “human” zinc would be fine) + 1/8 capsule of powdered B6. Speak with your vet, of course. 🙂 And good luck!
PS Sorry – I’m a lazy typist – I say PD (pyrrole disorder) sometimes instead of typing out pyroluria. 🙂
Hi Trudy! I’ve been following your pyroluria protocol for about two months now (along with taking your ‘amazing amino acids’) and I feel wonderful. My anxiety is completely gone. My question is about the B6. Is there a limit to how much you can take? I still don’t remember my dreams. I changed to the P5P (up to 100mg) when 500mg of B6 didn’t help with dream recall but that didn’t make a difference. I’ve also tried taking a combination of both of these without success. At this point I really couldn’t tell you how much I’m taking because I just shoot a couple down the hatch whenever I see the bottle sitting on counter. I’m pretty sure I’m exceeding the maximum amounts you recommended. Can you give me any insight into what I should do from here?
Hi Nancy
I’m so glad you feel wonderful and don’t have any more anxiety! When someone is feeling great with no anxiety and none of the symptoms I recommend staying on a maintenance dose of 50-100mg P5P.
Trudy
Hı after my nose operation I got cold and realized that I smell very low and taste. Now some things I smell are like burnt. I live in Turkey. Should I do Zunic test? Because I used so many antibiotics. After I take it to my mouth should I swallow it? Please inform me about the process.
Hi Nilly
Here is a good blog post with information about doing this https://www.everywomanover29.com/blog/zinc-deficiency-and-using-the-zinc-taste-test/
Trudy
Thank you Trudy for making yourself available to all of us who have been in the dark for so many years. I am now 57 years old and I have been suffering with all but 4 of the most common symptoms all of my life! I just thought it was how I was born and never thought to question any of it or seek “a cure”. If I had only known I could have had a different life. I see some of these same symptoms in one of my daughters and I will be passing this on to her. perhaps her life will not be as hampered as mine. I now have a battle plan thanks to you and will be moving forward. Thank you ever so much.
Fayette
You are so welcome! It’s not too late eve for you and how wonderful that you can share this with your daughter. Do keep me posted on how you both do
Trudy
hello. i believe i have pyroluria after researching and had a question if any connection with high iron serum. my dr does not believe in this been on anti depressants for years. my iron count was not hat high three months prior or any other time. well i wanted to start supplements but dont know if safe with high iron but dr said not that high. so i am not sure where to go from here.. no drs in my area. how do i know methlation etc. i have hsd urine test for all the metals was fine and blood work did not show much deficient in vit d and c a little low in b vitamins. hormone imb. please let me know if you have suggestions. thanks. i do have nutriplex b complex and wanted to get the primrose and zinc to slowly start…
Hi Terri
We often see low iron with anemia. We see high iron with iron overload conditions, too much dietary iron (like eating spinach everyday or in iron fortified foods), iron in supplements, especially in men and menopausal women. I like to see high iron addressed as it’s not safe http://www.lef.org/magazine/mag2012/mar2012_Excess-Iron-Brain-Degeneration_01.htm
Since I don’t know your health history I can only say that theoretically having high iron should not be a factor in starting a pyroluria protocol.
Trudy
Hi Trudy,
Am I understanding correctly (from your book) that Zinc supplementation for pyroluria should be monitored by the zinc taste test and when the test shows sufficiency the supplemental zinc should be stopped?
After sufficiency do you suggest doing the zinc taste test on a regular basis to monitor zinc levels to see if there is a need to resume supplementing with zinc?
Do you see your clients needing to take zinc on and off to maintain sufficiency?
If there is no change taking 30mg of Opti zinc do you suggest increasing the dose of Otpi zinc before switching to another form of zinc?
Will you please give some insight and clarification into this?
Also, is supplementation with B6 and GLA ongoing? Thank you!
Hi Rose
If you have pyroluria zinc and vitamin B6 supplementation is forever (GLA too often). I use the zinc taste test to get levels up and then continue to use it make sure the levels are good (I think this answered your first 3 questions and the last one).
I do increase the Optizinc to 60mg with my clients and then switch to another form. Remember that adding and/or increasing GLA can help with zinc absorption.
Hope this helps
Trudy
Hi Trudy. I have many of these symptoms and also have been in a state of depression for several years. I have been taking the B6 and zinc, but don’t notice much difference in my social anxiety or depression. I am taking 5HTP twice a day.
Also, my granddaughter seems to have some of these symptoms; does it skip a generation?
Hi Trudy, have you come across many couples both having pyrrole disroder? my husband & i both have it, my mum & dad had it, my daughter & her partner have it, seems pyrrole sufferers may be drawn to those who also have it!?
Cheryl.
Thanks for sharing – this is very interesting and yes I have come across this. My husband and I both have pyroluria. I interviewed Corey Schuler on the Anxiety Summit (and he interviewed me for my pyroluria topic) and he mentioned that both him and his wife have pyroluria.
Trudy
Thank you for the great information!
I got 32 of the questionnaire. And most of them are VERY ME. But, there are some pyroluria symptoms that I don’t have.
For example, I remember dreams very well and always have.
I also have a very large appetite.
I am pale, but not naturally. I just choose to avoid the sun.
I have a pretty good memory of past events and people.
I don’t dislike protein, though I much prefer carb meals.
Other than these, this list fits me exactly. But I’m confused because many places use the dream recall as a major symptom of pyroluria. Have you had many clients who dream well, but still have pyroluria?
Aya
Poor dream recall or having unpleasant dreams/weird dreams/nightmares is a classic pyroluria symptom because it’s due to low levels of vitamin B6 which is a common pyroluria deficiency. It’s possible you have only have low levels of zinc or that despite remembering your dreams you are still low in vitamin B6. The best way to know is to try the protocol and see if the anxiety symptoms resolve.
Trudy
I was recently diagnosed with pyroluria through a urine test. I have so many of the symptoms but in the past they were shrugged off by doctors. I have a new doctor and she said let’s test for pyroluria, which I hadn’t heard of before. I just started taking a b consoles today but my stomach became upset after taking it. I took it with a meal. Any tips?
Hi Heather
I’d suggest discussing this with your doctor – I’m so pleased she was willing to test for pyroluria! If she doesn’t have answers for you I’d suggest starting with individual vitamin B6.
Trudy
I also have MTHFR. So I purchased a b complex by pure encapsulations that has the methylated b vitamins. I wasn’t expecting to have an upset stomach after taking them and I’m not sure what to do now.
Heather
Other than talking to your doctor, do consider an individual form of the methylated folate. Or possibly try another brand.
Trudy
Thank you I will talk to my doctor soon. 🙂
Dear Trudy,
I think it is, at this point, safe to say that the pyroluria treatment is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing. Your advice and encouragement have been, and still are, very helpful – they are the only outside professional help I have had through the process. If there is any way I can help you establish the connection between pyroluria and dystonia in your professional environment, I will certainly be glad to do that.
Thanks again,
Jay
Jay
You are so very welcome! I’ve appreciated the dialogue and the opportunity to learn about a new condition and the connection to pyroluria.
Thanks for sharing your truly wonderful results here. I am SO SO happy for you – wow – working extensively on repertoire and thinking about getting back into performing!
And I appreciate your willingness to share and help establish the connection between pyroluria and dystonia. As we have recently discussed via email, I feel an article/blog post documenting your symptoms, progress and protocol will be a great way to start sharing this information. Hopefully we can generate some interest from various dystonia organizations/groups/forums and help more musicians find symptom resolution
Trudy
Thank you for all your info on pyroluria. My question is about anemia. Will iron levels improve on the protocal or do I still need to supplement iron? My Dr has me on 1600 b6 and 400 of zinc. I still can not remember my dreams and zinc tally tastes like water. I would like your experience with anemia. Thank you
Hi Marie
Iron levels will not improve. I do hope you are not really on 1600mg b6 and 400mg of zinc. My top of the range is 500mg B6 and 60 mg zinc.
1) zinc – if it’s not tasting much worse then it’s possible your zinc levels are not changing. This could be due to high copper, copper in other supps you’re taking, or low stomach acid, leaky gut, food sensitivities like gluten etc. Mercury can also prevent zinc absorption and evening primrose oil enhances it
2) B6 – you don’t mention if you’re having pleasant dream recall. If yes, you’re good. If not, switching to P5P may be a good idea
Trudy
Hi Trudy. I am a chilean woman (36). Two years ago I graduated from the Health Coach online program at the Institute for Integrative Nutrition. During the program I heard Julia Ross and then I read her book Food and Mood. For my mood problems I tried taking amino acids, 5htp, and gaba, cromium, now foods true balance multi, etc but since I read about pyroluria, I was pretty sure that I had the condition. It made so much sense that all these different problems that I had had a connection between them. But modern medicine looks for everything in isolation. Since then I have been searching for some doctor or practitioner here in Chile that knows about pyroluria but I haven´t found anyone and there is no place where I can test for the condition. I have over 20 points in your questionary and I barely felt the zinc tally in my mouth. I have never recall my dreams, I come from a 5 girl family, I have lot of strechmarks since I was almost a kid although I have always been really skinny, I always have white spots on my nails, I´m never hungry at breakfast, I am an introvert, I have low tolerance to sound, light and stress, I have troulble with my knee, I am always tired, etc, etc. So I want to start your protocol. But I have a 6 months old baby and I am still nursing. Is there any trouble with the doses you suggest and nursing my baby? I am planning to take the b6, zinc, primrose oil, true balance multi. Anything else you suggest?
Also I have a 10 year old boy that maybe has pyroluria. What are the dosage for the kids protocol?
I would love to have a skype consultation with you. Is there any possibility?
Sorry for so many questions. I have been searching for help and guidance with these pyroluria condition for a long time. So know that I found you, I am so happy!
Hi Francisca
I suggest a good Prenatal supplement for my nursing moms. It isn’t quite enough zinc and B6 but may help. I don’t worry with testing any more and just rely on how my clients feel when they do supplement. For kids, it depends on their weight- 60lbs would be half the adult dose.
I’d be happy to do a consult. You can get details here https://www.everywomanover29.com/services.html It starts with an initial 15 minute complimentary phone consult
Trudy
hi trudy,
just writing here to say that i too have battled focal dystonia over the past 8+ years. actually started as writer’s cramp and then worked it’s way into my guitar playing. about 3 years ago i noticed symptoms lessened based on different things i ate and shortly after came across pyroluria. in all questionairs i answer yes to most if not all questions.
anyway, for the past 2 years i’ve been on zinc and b6 and have had vast improvements. for me, the muscle disorders don’t go away without retraining, but the b6 and especially zinc make retraining much more successful. however, sometimes i do hit the jackpot and my hands work almost normal without the efforts of retraining. my dose fluctuates between 25-60 mg zinc and 50-100 mg b6 which i seem to have more trouble taking. i also experimented with methyl b12 but that led to a very painful rash.
the funny thing about all of this is that i feel nowadays that focal dystonia was only the canary in the coal mine for other symptoms that paid little or no attention to because i was only focused on being a musician. as a result of taking supplements most of those other symptoms are much better and i’m soooooo close now to having proper movement in my fingers.
it’s really great to see what you and jay have posted here because it really validates what i’ve been doing. i too believe there are many that can be helped by this.
best,
dave
Hi Dave
Thanks so much for posting here and sharing your wonderful story – I am thrilled for you! Glad this blog and the other comments validates what you’ve been doing.
You’re so correct about the canary in the coalmine!
I’m trying to learn and understand this condition more and would love to know what you mean by “the muscle disorders don’t go away without retraining” ?
Thanks too for sharing your protocol. A comment about the B6. I’m not sure what you mean by having trouble taking the B6 but some people do better on the activated form P5P.
Would you mind sharing how many (and which #s if you’re ok doing that) pyroluria symptoms you did have and how many now? and what about introversion? did you consider yourself and introvert before and less so now? I’m gathering feedback about this on another blog https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/
Thanks! and here’s to beautiful guitar music!
Trudy
trudy,
focal dystonia symptoms vary from person to person. overall, it’s a kind of reflex of unwanted muscle contraction(s) associated to whatever physical task(s) it attaches itself to. in my case, my index finger would curl into my palm tightly while the others would flare outwards. in my other hand, the index would do the opposite and want to stay up. guitar playing became almost impossible as well as typing, buttoning a shirt and picking up small objects. all of this is because my brain lost the clear differentiation of which finger is which. therefore, i’ve had to spend every day for the past 8 years “retraining” the brain with finger exercises. before i treated with supplements, i had small successes only to have them taken away again or get much worse for no “apparent” reason. after supplementing with b6 and especially zinc, the connection to my hand and fingers immediately felt “stronger” and my exercises became more effective with lasting results.
as for the test, i would answer yes to 35 of the questions. of those, i’d say 9 of them have stopped or gotten much better. i have always been prone to introspection but not in a selfish way if that makes sense. psychologically speaking, i can confirm that zinc and b6 have given me a whole new understanding of myself that i could’t see or admit to before. in my “very pyroluric” moments, i interpret the world very personally with this automatic sort of negative slant to things. this is much less now but still happens in times of high copper. but when it does happen every so often, i can recognize it for what it actually is.
best,
dave
Hi Dave
Again, thanks for being willing to share! It’s wonderful to hear that after supplementing with vitamin B6 and especially zinc, the connection to your hand and fingers immediately felt “stronger” and your exercises became more effective with lasting results. I’m learning so much about this condition!
Glad the pyroluric moments are happening less. Keep in mind that high stress situations makes pyroluria worse and you may need more of the nutrients for a short time.
I’m not quite sure what you mean by times of high copper? are you routinely exposed to high copper? and from what source? From the reading I’ve been doing it seems many musicians get copper exposure from brass instruments since they are made from copper/zinc. Do you feel you could get exposure from guitar strings (also made from brass?). Ideally you would want to reduce your exposure but I’m sure you’re aware of this
Trudy
hi trudy,
“high copper” is purely conjecture on my part i’m afraid. it’s me, google and a very supportive girlfriend alone in this battle;. not to mention many wonderful people who share their personal experiences in forums like this. when i found out i had focal dystonia, the only options available to me were accepting it as incurable or getting botox injections. neither seemed like the answer for me. i’ve learned a lot since, but unfortunately have no reliable way to test for my mineral and vitamin levels. i did send out a kryptopyrrole test and it came out to a surprisingly low score of (17 corrected and 23 actual) despite the symptoms fitting like a glove. i also used zincatest, got up to 90mg and never got beyond a light chalky taste in the taste test. pairing this with all of the dangers i’ve read about overdosing, i’ve kept doses relatively modest compared to what i’ve read about others. in all of my reading we’ve changed to mostly gluten free and lots of healthy vegetables. but, a lot of these things, even if high in zinc seem equally high in copper. and nuts are really difficult for me to have just a few of. so a lot of times i think i might be getting more copper than my small dose of zinc can fully counteract and the first place i feel it is in my hand. stress does the same and i try to keep that low. ( i also have copper pipes)
so, in short, i’ve really been my own guinea pig with many many setbacks. i don’t have the formula just right as of yet, but i’m on a much more positive direction as a whole compared to where i started.
best,
dave
Dave
I suggest checking out Ann Louise Gittleman’s book “Why Am I Always So Tired” – she does a great job addressing sources of copper. Nuts and seeds are high! Pumpkin seeds are the best – they do have copper but less.
And the urine pyroluria test is often false negative so I like to reply on the questionnaire and response to the supplements
Trudy
Hi Trudy!
First off I want to thank you for helping to bring awareness of pyroluria. I’m pretty sure this is at least part of what has been plaguing my entire family for years! Both my father and sister are disabled with it (or something similar). I see these symptoms in all of us.
Anyway I’ve was already taking zinc citrate (100mg) plus another 10.5mg (zinc citrate) in my multivitamin as well as about 300mg of B6 (combined in my multi, B complex, and straight B6)when I discovered pyroluria. My naturopath put me on these dosages a few weeks back. Still no dream recall but occasionally I would add a couple more of both b6 and zinc just to experiment. I did start getting better dream recall and decreased anxiety but the dose is a little on the high side. It seems I’ve had this problem with other supplements too, like 5-HTP and L-tyrosine. For each of those I require at least DOUBLE the maximum dose to feel anything. My best guess is an absorption problem but I was just wondering your thoughts?
Hi Mike
You are so welcome!
Absorption issues/leaky gut can mean that a person needs higher doses of nutrients and the form can make a difference too. Also competing nutrients could be a factor – such as copper in a multi affecting zinc absorption. I like the Optizinc form (zinc monomethionine). The GLA helps absorption and so does good stomach acid. For B6, the active form P5P may be needed instead of B6/pyridoxine.
I suggest checking back with your naturopath
Trudy
Hi Trudy!
I’m just writing you back to share information because it helps all of us.
I’ve had a hard time absorbing zinc as the zinc tally test is still negative despite trying different forms of zinc (haven’t tried the opti-zinc yet). A hair analysis test has revealed heavy metal toxicity – lots of lead, aluminum, cadmium and tungsten.
That could explain a few things!
Thanks for sharing Mike and yes heavy metals can block zinc absorption. I would suggest trying opti-zinc too. And check the hair analysis for high copper too. You can also have hidden high copper i.e. it’s high but doesn’t show up on the test.
Hi Trudy and Dave,
I am so happy to read this dystonia related success story!
After my own experience, I still say an experience akin to rebirth as a musician and also as a person, this was the reason for me to post on this blog – to help get this out to musicians who are victims of dystonia and inadequate medical treatment.
From what you write, I should probably up the zinc (right now 40 mg) a bit and lower the B6(900 mg at present), because I am about 90% there but want 100%.
A big Thank You to you, Trudy, for your open-mindedness towards less familiar conditions and your willingness to dig into them, for continued advice and support!
Lets keep this dialogue going and share each other’s journeys –
Jay
I recently listened to your interview with Corey Schuler on the Anxiety Summit. You mentioned your work with vitamin B6. I am hoping you can point me in the right direction. I have elevated levels of B6 (standard blood test). I do not supplement. I am dealing with depression, anxiety, irregular menses, hypothyroidism and food sensitivities. I cannot find any information as to why my B6 would be high (malabsorption?). My ND doesn’t seem concerned but the more I read about B6 and it’s role in all the above, the more I wonder if my high B6 needs to be addressed. Can you offer any recommended reading or resources? Thank you. I have enjoyed the summit very much! ps. I took the pyroluria questionnaire (above) and scored a 16.
Hi Tara
So glad you enjoyed my pyroluria interview on The Anxiety Summit.
I need a little more info please – of the 16 on the pyroluria questionnaire, which relate to B6?
Trudy
Easier to list the very few #’s on the list that I didn’t check; 4, 7, 8, 10, 11, 15, 16, 23, 27, 30, 33-37, 39, 41, 42.
I supplement with zinc, using the test/protocol, but I am experiencing constipation and that is the only supplement I’ve added recently.
I understand B6 stimulates peristalsis, so the two supplements in combination might avert the tendency for constipation.
I will need to add B6 to my supplementation.
Thank you so much Trudy!
Chandra
Only 4 of the #’s I listed were deficiency related; two for B6, two for zinc.
Wow this is mind blowing. I can relate to most of the common and uncommon characteristics. I have had early childhood trauma in a hell daycare that had left me with anxiety and panic attacks for the rest of my life thereafter. I also have a gene in the family where we all go grey in late teens and now at 33 my hair is all white. I have always been very shy, intimidated, gullible, and sensitive. I thought thats just how things are. Until i did a detox and my body couldn’t handle it (with copper gold silver) and I had a very bad reaction to it with tremors and panic and the whole works that also has onset insomnia after. Funny you mention you make sure your supplemets don’t have copper! Since then, my naturopath has struggled to find the optimum formula to detox me and it seems kids doses work best with me as I react so easily. He said in his 30 yrs he has not had one patient with my reaction. It made me feel pretty lonely but the kids detox dosages for copper gold silver along with optimal liver and kidney support supplements, it worked fine. In any case…I am on a steep learning curve that biochemistry actually DOES affect one psychologically and you’re not just “broken” as I thought I was.
Hearing you speak about all this on the Natural Remedies summit gave me a HUGE “aha moment”. Thank you!
Hi Ana Maria
So pleased to give you a HUGE “aha moment”! Yes! biochemistry actually DOES affect one psychologically and you’re not just “broken”. Glad to hear you’re doing better on lower doses and have a naturopath supporting you. Thanks for sharing and here’s to more aha moments
Trudy
Thank you for responding Trudy. My numbers were: 1, 2, 3, 9, 11, 12, 13, 14, 16, 18, 19, 21, 25, 26, 30, 31, 36, 37 (I counted wrong, there are 18). The only one that mentions B6 is #3.
Tara
Poor dream recall is a classic sign of low B6
Trudy
Thank you so much for making this information public. From the common symptoms list I checked off 22. Total of 28 with the uncommon symptoms. I know I’ve have anxiety and depression from a very young age but was diagnosed when I was 17. The social anxiety is what bothers me the most. I can sometimes mask the anxiety and depression but the social anxiety makes the other 2 even worse. I feel like I cant be myself in most situation and I find myself getting more and more anti social and have to force myself to do things outside of home watching tv. The social anxiety has gotten better with the years but the anti social behavior is getting worse. I just was weaned off zoloft after taking it for 2 1/2 years. I’m 28 now but have been on and off meds since 17. I stopped bc I really want to take another approach without the chemicals. They helped but not that much. I will be ordering your book after this post but would like to know exactly how you determine how much of which vitamin to take. And if they should be taken once a day, twice a day, with or without food, etc. I read some of the comments and saw some make comments about how fish oil is bad to take if you have pyroluria. I started taking fish oil not long ago in attempt to improve my memory and concentration, which is terrible. I think I may have some form of ADD. Is there another alternative that will help treat memory and concentration issues? I am also taking doctors choice magnesium 200 mg elemental and nature’s way alive B complex + C. Should I continue to take these and add the zinc and B6? Is a multivitamin necessary? I just bought GNC brand 100mg B6 and 50mg zinc. Do you have suggestions? Sorry for all the questions I just feel like there might be some hope for me after all and I’m excited to start trying these supplements but want to make sure I’m doing it correctly.
Hi Marie
I’m glad you’re excited and hopeful but try not to get too overwhelmed! I use this questionnaire and others (plus testing) to help figure all of this out. You’ll see the general guidelines here on this post – the comments have a wealth of information. Some people do ok on fish oil and some don’t need it – the ideal is to do a fatty acid test to find out. Concentration issues can have many causes: a need for omega-3s, sugar, gluten, low zinc etc.
I can’t give you specifics on what you should take but typically a multi, magnesium, B complex and C are very useful too.
I will say make sure the zinc and multi does not have copper.
Please come back and share how you’re doing
Trudy
If my B6 was low then why does it test high? malabsorption? I have elevated levels of B6 even though I do not supplement. I am dealing with depression, anxiety, irregular menses, hypothyroidism and food sensitivities. I cannot find any information as to why my B6 would be high? (especially since I have signs of low B6.
Thanks Trudy
Hi Trudy!
I have almost all the symptoms of pyroluria you’ve listed above but i live in Finland and i couldn’t find here a place where they would test for this condition. So i started yesterday the treatment by myself and took 400 mg of b6 in two 200 mg tablets and 30mg of zinc. In the evening i got horrible tingling sensation in my arms and feet and a little numbness and i still have it in the next morning. Then i read about the side- effects of too much b6 that it can cause nerve damage and got a little bit scared. Could this mean that i don’t have a pyroluria because i got such a bad side- effects.
I’m still looking for a cure for my lifelong anxiety. I’m now 30 years old woman. I had also a severe hyperemesis gravidarum during my pregnancy and i’m looking for answers why i had it. Pyroluria makes sense to me because i’ve had those kind of symptoms all my life. I’m dreaming to have a hg free pregnancy next time if we try again.
Thank you for your wonderful page!
Elise
Hi Elisa
Too much vitamin B6 can cause tingling/peripheral neuropathy which reverses when you stop. I start my clients on 100mg vitamin B6 and build up slowly each week. Some people do better on P5P – I start my clients on 25mg. And yes hyperemesis gravidarum may be related to low vitamin B6.
There are Dutch labs that offer pyroluria testing if you do want to test.
So glad you enjoyed my page!
Trudy
PS for my other blog readers, hyperemesis gravidarum is a complication of pregnancy characterized by intractable nausea, vomiting, and dehydration
Hi Trudy – I have bought L-Optizinc 30 mg; but it was with 0.3 mg of Copper – but you had mentioned to get it without Copper. Any comments?
Also, I tried Tryptophan 500 mg – but had an adverse reaction – so based on what I have heard you say, that must mean I don’t need it (right now anyway), and that my serotonin levels are fine right now. Is this correct?
I tried Gaba – and realized that I did need it though.
Thank you for all of the work you do and looking forward to hearing back from you 🙂 Melanie
Melanie
If someone has pyroluria I recommend opti-zinc with no copper as copper can negate the effects of the zinc.
When someone has an adverse reaction to tryptophan it could be that: they don’t need it or that it was too much or that it was not good quality (I only recommend Lidtke brand of tryptophan)
You’re welcome!
Thanks Trudy;
The only Opti-zinc I can find so far has that little bit of copper. Can you let me know some brands that don’t have it?
Also, the Tryptophan I tried was pharmaceutical grade – as we can’t buy Tryptophan over the counter in Canada (only 5HTP).
Hi Trudy:
First off, thanks so much for all the valuable info you share with the world, I know I appreciate it!
So, I’m pretty sure I’m pyroluric, and I’m waiting on test results. I decided to try out the the pyroluria protocol in the meantime from Depression-Free Naturally, and I’m having the following symptoms – insomnia, more anxiety/panic during the day, some nausea, migraines.
Could this be related to copper elimination and excitotoxicity? How long must I endure this pain until I start to see some relief (is there an average)?
I also get very sneezy/stuffy on regular B6 as I have the CBS c699 snp mutation (along with MTHFR, MTRR, COMT, etc.) CBS causes more sulfur breakdown products, ammonia production, which I think slows detox.
Oh my, how this gets confusing. Thanks for your input.
– Irv
Hi, Trudy! Thank you so much for all your valuable information here. I have your book too and have found it a real eye-opener! I score high on the Pyroluria questionnaire, but you say you don’t typically test for Pyroluria. Would it make a difference to my family if I had a definite diagnosis? I have 6 daughters, and yes, people tell me they are remarkably similar in looks (though I see their individuality mostly). I also have two sons, so not an all-girl family. I see many of the Pyroluria symptoms in my mother and her mother too. As it can be genetic, this is the main reason I was considering testing myself – my daughters. How would it impact them if I tested positive for Pyroluria? What would I do differently for them? Would supplementation save them from needless years of struggle? That’s what I’m considering. I have already ordered the liquid zinc to do that test. I am happy to take zinc and Vit B6 for myself, but it’s really wondering ‘what about my children’ that has me looking in to testing for myself initially. Could you comment on that, please? Thank you so much for your time. Shael.
Hi Shael
You’re welcome – glad my book is an eye-opener! The reason I don’t test is because you may get a false-negative when you could still benefit from the supps AND because it’s so simple to get on the supps and see if you feel better. If you do do better and your children also have symptoms of pyroluria (nightmares is a classic one with kids) and then you can have them try lower amounts of the supps right away. There is no place for needless years of struggle for anyone 🙂
Trudy
Thank you, Trudy. I have a nine-year old daughter who displays a number of Pyroluria sypmtoms, including being plagued by nightmares. I’m so glad you mentioned that, because we’ve tried so many things to try and help her deal with the nightmares. What dosage on the supplements do you recommend for her age group? Thank you. Shael.
Shael
I like to start low for children and and base it on weight
Trudy
Hi Trudy
I have been reading your book (The anti-anxiety food solution) and wondered if you would mind answering a question for me? I believe I have Pyroluria (I agreed with 31 of the statements in the Pyroluria Questionnaire). I have arranged to see an integrative GP in Australia for Pyroluria testing, but I can’t get an appointment for a few more weeks. In the meantime, I am seeing a renal specialist because I consistently have high protein levels in my urine (however my blood tests and ultrasound shows no kidney problems).
So my question is, could Pyroluria cause protein to show up in urine tests? (i.e do kryptopyrroles, zinc or vitamin B6 show up as protein?).
By way of background, I am a 35 year old woman. I had my second child 8 months ago. I have been suffering from postnatal anxiety since the last trimester of my pregnancy (insomnia, panic attacks and anxiety). I have been on zoloft for 4 months and am now sleeping better and less anxious, but still not feeling 100%. I have been taking zinc fix for 2 months, but the zinc taste test still tastes like water. Thanks for your advice, Bridgette.
Hi Bridgette
I’m sorry to hear about your postnatal anxiety – glad you’re doing better.
As far as I am aware, there is no connection between pyroluria and protein in the urine. Here is some info on elevated protein in the urine: “Protein in the urine is a warning sign. It may indicate kidney damage or disease or it may be a transient elevation due to an infection, medication, vigorous exercise, or emotional or physical stress. In some people, it may be present during the day and absent at night when the person is lying down (orthostatic proteinuria).” (http://labtestsonline.org/understanding/analytes/urine-protein/tab/test/).
As far as nutritional approaches for postpartum anxiety and depression here is a recent blog post on the topic https://www.everywomanover29.com/blog/nutritional-interventions-postpartum-depression-and-anxiety/
Zinc can be very beneficial. I’m not sure what zinc fix is so can’t comment on why the zinc sulfate still tastes like water. Can you please share who much zinc and the form? and if you are getting any copper in any of your supplements?
I know you didn’t ask for my thoughts on Zoloft during pregnancy and breast-feeding but I’d be doing you a disservice if I didn’t say something. I am not in favor of SSRIs during pregnancy and breast-feeding. Here is a study that Dr. Prousky shared during our interview on the Anxiety Summit season 2 http://humrep.oxfordjournals.org/content/early/2012/10/31/humrep.des383.abstract. Here is a link to information about our interview https://www.everywomanover29.com/blog/anxiety-summit-tapering-psychiatric-drugs-dont-ruin-life/
Zoloft may be a factor in the high urine protein levels too – if it correlates with when you started the Zoloft, I’d suggest looking into this too.
Trudy
Thanks Trudy. I will certainly have a look at the links you provided. Zinc Fix includes 62mg of Zinc sulfate monohydrate (equiv. elemental zinc of 23mg). Apart from this I have only been taking magnesium and probiotics (no cooper in them). The proteinuria started during the last trimester of pregnancy, and I didn’t start zoloft until 4 months after my sons birth. Also, I stopped breastfeeding shortly after starting Zoloft. The renal specialist has suggested a kidney biopsy if my condition doesn’t improve by March. Also, my mother has Lupus and the renal specialist mentioned I could have that, even though my blood tests were negative (ANCA and ENA negative). Thanks again for your advice. Bridgette
Hi again Bridgette
I typically start my pyroluric clients on 30 mg zinc and go up to 60mg if needed. I also like Opti-zinc.
Thanks for the clarification – I’d look for other causes of proteinuria – gluten is just one http://www.glutenfreesociety.org/gluten-free-society-blog/gluten-damages-the-kidneys/
Trudy
Dear Trudy,
thank you so much for opening my eyes. i have been to dozens of doctors over the years trying to get treatment for my fatigue bad skin and a whole host of other complaints including anxiety. none of the drugs they gave me ever worked mainly do to intolerance. i cant take anything with out horbal side effects i have 32 of the 40 symptoms listed. my doctor thinks i’m a hypochondriac. have you noted a resistance in other healthcare professionals?. regarding this. its a shame the only reason im not on prozac is that i cant tolerate it. i would like to find a new Doctor in Reno were i live any advice thanks. Paul
Hi Paul
You are so welcome. I’d suggest looking for an integrative or functional medicine doctor. Or you could consider working with a nutritionist, naturopathic doctor or chiropractor.
Trudy
Trudy, have you heard of B6 and/or zinc causing people to become ill due to detoxification? Or can it signify too large of a dose? I stopped after just 2 weeks on a combo pill of zinc picolinate 25mg, vit B6 pyridoxine 50mg and P-5-P 25mg because my anxiety skyrocketed and I began having stomach/epigastric/chest pain, a pounding heart, clumps of hair falling out, weight loss, and a tingling tongue with a metallic taste. After a couple days off the pills, the symptoms resolved. Any insight would be appreciated.
Hi K
These are not even very high doses: 25mg zinc, 50mg vitamin B6 and 25mg P5P and yet this is a very severe reaction. I have not heard of anyone having a reaction like this but anything is possible. I would work with your doctor and get copper and ceruloplasmin levels tested as these could be related to copper toxicity. I’d also look at the quality of the products and possibly contamination.
Trudy
I wrote on this why didn’t you approve my comment?
Hi Ross
Perhaps you are referring to your comment/question on this pyroluria blog? https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/ Please see my answer there
There is no other comment from you on this blog – if you’d like to post it again feel free to do so
Trudy
Trudy, thank you so much for your work with pyroluria. I have nearly ALL of the symptoms, as do many members of my family! My uncle on my mother’s side was schizophrenic, and all of the siblings in that family had trouble with alcoholism and anxiety. There were five look alike sisters in my mother’s family as well. I’m supplementing as you’ve suggested and looking forward to a brighter future! 🙂
Thanks for commenting Katooshie – I’d love to hear about your brighter future 🙂
Hi Trudi,
thanks for sharing this info. I have a feeling I have pyroluria and should get myself tested but I am concerned that my 6 year old daughter also has it. She often has nightmares, is shy in groups. has white spots on nails, seems to get stressed out easily etc… Despite always being fed an organic whole foods home cooked from scratch diet.
Could I just give her some supplements at her age or is it better to test her first.
Claire
I have seen the pyroluria protocol in kids to be very successful. I tend not to test but you could if you feel more comfortable doing so. Just be aware that you may get a false negative
Trudy
What is a good pyroluria test? Could one test for zinc deficiency perhaps?
I’m not sure how much I should give of the supplements to a young child. Wouldn’t want to overdose!
Claire
I use the pyroluria questionnaire and response to supplements. Many people get a false negative on the test. The best test for zinc levels is the zinc taste test and alk phos below 70.
I start really low with children
Trudy
Trudy, What would you recommend to person has many symptoms of P. (13) and his zinc test is low but he has low cortisol.
He was told Zinc reduce cortisol so he can`t take it much?
Hi Lisa
I’d like to know what the source of this is – zinc reducing cortisol – as I’m not aware of this. In fact quite the contrary.
Here are a few examples:
Prenatal zinc reduces stress response in adult rat offspring exposed to lipopolysaccharide during gestation. http://www.ncbi.nlm.nih.gov/pubmed/25445220
The Role of Nutrients in Protecting Mitochondrial Function and Neurotransmitter Signaling: Implications for the Treatment of Depression, PTSD, and Suicidal Behaviors. http://www.ncbi.nlm.nih.gov/pubmed/25365455
Effects of zinc on the expression of metallothionein isoforms in hippocampus of stressed rats http://www.ncbi.nlm.nih.gov/pubmed/15952664 “The impairment of stress on body may be involved with the nutrition status of zinc, and zinc deficiency can lower the body’s resistibility to stress.”
Zinc: a multipurpose trace element. http://www.ncbi.nlm.nih.gov/pubmed/16187101
To give you peace of mind ask your doctor to test zinc, copper and ceruroplasmin. You could also look at alkaline phosphatase (<70 can indicate low zinc). Or do a Spectracell zinc test.
Trudy
I have two younger sisters, no brothers. One sister has two girls, and the other sister has one girl – no boys. (I don’t have children.) How does this scenario relate to anxiety disorder, which I have had all my life? I am now a senior citizen. Very curious about this! Thank you.
Hi Suzanne
If you score high on the pyroluria questionnaire I would consider addressing it with the protocol. This cluster of females in your family would mean a “yes” to the all girl question.
Trudy
How does the all girls iin family relate to pyroluria? Is there evidence behind this? It’s intesstning as my family are very girl heavy
Claire
This was something Carl Pfeiffer observed and it appears to be related to males being miscarried
Trudy
Very interesting as I am from a nearly all girl family. I did hear my mother did miscarry. I only have 1 sister. I myself have only girls and 1 miscarriage (sex was not identified)…
I wonder if that is because boys in the womb would need more zinc than girls?… I ended up with huge amounts of stretch marks from my pregnancies. Now I can see that this could have been zinc deficiency. Frustrating that doctors/midwives don’t give any help seeing deficiency signs!
Hi Trudy,
This information is awesome, I have previously or currently ticked off all of these symptoms. I was diagnosed with Adrenal Fatigue at the start of 2014. I was extremely withdrawn for almost the whole year until my new FMD put me on a bioactive form of Zinc a month ago. I noticed a change straight away. I have started P5P today & hope to notice more positive changed in my anxiety so I can spend more time in group situations. How long does this normally take to kick in? Is this a condition we will have all our lives?
Thanks again!
Hi Alexandra
It’s wonderful to hear you so quickly noticed a change with the zinc. The pyroluria protocol typically takes a week or so before you start to see improvements (assuming you have the right combo and amounts of nutrients). And yes, if you have pyroluria you do need to supplement always. Do let us know how you do going forward
Trudy
Am wondering what you think of this Thrive craze. Everyone around my area are trying it. I checked off way to many symptoms on your list, and this really pertains to me.
Thank-you
Hi Karen
Thanks for sharing about your symptoms – all the best with addressing this. Please do share more about the Thrive craze and I’ll comment
Trudy
Hi Trudy,
I relate to most of these signs (as well as to the signs of introversion you mention in another post), and they have become extreme over the past 3-4 years. However I worry about B6 – I have been warned that it can cause peripheral neuropathy. I have severe autoimmune polyneuropathy in my hands and feet, so I have been told to not supplement with it.
I don’t see any cautions about B6 in your work. Do you have any thoughts on this?
Hi Fay
Yes too much vitamin B6 can cause peripheral neuropathy – which reverses when it is stopped. I would follow the recommendations from the doctor (I assume) who said not to supplement with it or get some testing done to find out if you are low in vitamin B6. I typically don’t do pyroluria testing but for you this could be good + a Spectracell test and GGT blood test. Also, do you remember your dreams as this a is big clue for low B6.
Also, addressing the autoimmune polyneuropathy may allow you to take vitamin B6 if you do need it.
Trudy
Thanks for informative blog. I first saw story in NaturalNews last week. After realizing I had nearly all the symptoms, I e-mailed the story to my Dr. and will get tested next week. I’m also positive for 1 gene mutation of MTHFR and frequently feel tired, get fatigued more quickly and easily than average person. So I feel a little apprehensive of not taking any supplements 1 week before the test but its for a good cause. With so many of the symptoms, I’m sure I must be positive but its good to test to see how deficient you really are. Will probably have kids tested as well since they tend to have some ADHD symptoms and 1 child has inherited my MTHFR gene mutation 🙁
Hi Maria
Thanks for sharing – please do come back and let us know how it goes. Your story and success will help someone else!
Please also do share your score and who you are doing the testing with. Just so you know, I don’t do testing and just rely on the questionnaire and response to supplements.
I’d love to hear which MTHFR gene mutations you and your son have. I’m seeing this connection more and more.
Trudy
Hi Trudy.. My name is Pixi…..I live in Dubbo Australia. I have suffered with severe anxiety and depression since I was sixteen, altthough I do recall being an ADHD type child that would get anxious when put in the spotlight.I also lived with domestic violence , my father was an alcoholic and I being the oldest became my families protector, much to my detriment.
My one gigantic wish is to finally figure out what is causing it.I have made many changes in my lifestyle, I follow a very strict paleo diet.I take many supplements, many to help try to rectify my anxious mind and others because last year I had breast cancer and now follow an anti-cancer natural regime.I have tried so many things over the years and while exercise and the many other things do help, nothing seems to be lasting.It,s the debilitating panicky feeling that just doesn,t go away. I am now 51yrs of age and it would be so nice to be able to enjoy life for once without this debilitating condition. I did both of the series of questions for pyroluria and these are my results.
The first 23 questions:2,3,5,6,8,11,14,15,16,17,18,19,20,23
the pyroluria questions:1,2,3,4,10,12,13,14,19,21,24,25,26,28,29,32,33,36,38,39,42
I am so hoping you can give me some advice, or even if I might be able to liaise with you in some way to figure out a regime that might be helpful.
Hoping to hear from you with anticipation
Pixi Vincent
Hi Pixi
I commend you on the positive changes you have made. I would suggest looking into the pyroluria protocol since you do score high on the questionnaire. Have you looked into low GABA, low serotonin? Here is the questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
I do long distance consults and would be happy to see if I can help. You can find details here https://www.everywomanover29.com/services.html
Trudy
Hi Trudy…I just came across this condition of Pyroluria this weekend. I was suspecting high copper as my zinc levels with the taste test are still undetected even when I was taking 50 mg. I answered 15 of the first set of questions and 2-3 in the bottom section. My main symptoms are creaky joints in the morning, difficulty with sleep at times, adrenal issues and Hashimoto’s, leaky gut and malabsorption issues, digestive issues with low HCI, inflammation, bacteria and parasites show under a microscope when looking at my blood. I have had anxiety and fear most of my life though it is better. I take a lot of Standard Process supplements but as you may know they are mostly glandular in nature but otherwise food based. Just not sure the B vitamin or zinc would be strong enough for what I have read here. I was going to do a urine test online for Pyroluria but from what you have written here it does not really seem necessary. Thanks so much for your thoughts.
Hi Cindy
You are correct, the urine test may be a false negative. And these supplements may not be enough for the pyroluria. I’m sure you’re aware that you do also need to address the gut issues and supporting the adrenals will help in this area too.
Trudy
So glad you say that Trudy! My daughter has so many of the signs and symptoms but after her pyrrole test was negative I did not give her the Zinc B6 or Evening primrose oil!!
Should have known there could be false negatives but you are the only one who mention it…
bless you Trudy!!
Is it ok to start her on “pure Innovation” Zinc Citrate tablets (30 mg) and a “Pure Innovation” activated B complex which contains P5P 6.85 mg and Pyridoxine Hydrochloride 16.5 mg?
Love your work!
Hi Karen
Yes false negatives are way too common and too many folks find out the hard way and then come around and supplement and see amazing results.
I like to start folks on 30mg zinc and at least 100mg B6/pyridoxine and/or 50mg P5P. The EPO also helps zinc absorption. And I like to use the zinc challenge to help assess zinc deficiency and progress
Please let me know her score and who you tested her with – I’m compiling informal data. Oh and her age.
Thanks
Trudy
ps: These are the questions I answered yes to….
1,2,3,4,7,9,12,14,16,18,19,20,21,22,24,26,29,31,39
I have lived with every single symptom listed, although I have never taken a liquid zinc supplement and I’m not aware if I am truly gluten intolerant.. I do note that, I have dealt with these symptoms, many of them so intense, that they made up who I was since I was a child. Although, more recently the less common symptoms have taken over my life. I had a period of time where I went on a whole food, and raw diet starting in 2010(about a year after a long fast that I feel saved my life at the time, although I only did it as a way to “rebel”, because I could not stand the way I felt and at 185lbs on a 105-120lb frame, with all my symptoms so intense and all alone at 16 with no food anyway, Im sure it can be understood). Where am I going? Okay, so after starting a whole food diet that included lots of bananas and real food that I never ate growing up, many of my symptoms started to get better, my perceptions, and my ability to interact with people, was better, in fact, it existed, but for the past several years I have been in another world again. It started in 2011-2012, I have some ideas of the changes that occurred in my life to lead me to the paths I’ve taken. Not getting into too much detail of the different changes, loads of stress, resulting infections, and in 2013 I got a mosquito viral infection, that caused me to “go back inside myself”, like I couldn’t speak to anyone, and my executive functions, my ability to decide a course of action and follow through with it, were shot, at first, I couldn’t reckon how I would get dressed because even that was more deciding then my brain could handle while at the same time having an obsession for perfection was also stopping me from making a choice. This same inability to make choices, kept me stark alone, I couldn’t even communicate with the 2 close people in my life, it was like I was stuck in a world inside myself (constantly cold, depressed and in a damp dark basement). My head felt like there was so much pressure in it, that I was being pulled down by gravity, I couldn’t get out of my bed, and I couldn’t respond to my low blood sugar, which always caused an adrenal response that made everything so much worse. I have not been able to fully get rid of this daily headache that I have had since, or find balance in my eating and blood sugar, and I have frequent panic attacks where I don’t know what to do, and it causes me to binge eat, and my perception gets so confused, I forget that I really needed the food, and since it makes me feel nauseous and sick to eat, I re-developed bulimia that I hadn’t dealt with since I was 13. I never went to the doctor after, as if you understand where my mind was, I’m sure you could imagine, so I don’t know how to talk about this with people. I have done a large amount of reading throughout the years, in the time between “the fog”. But my ability to take action where need be, is diminished by this cycle. And I can never find enough balance to talk to anyone about this as a whole. I am in the same boat as many drug addicts that I know, and I am not addicted to drugs, but I see the correlation, in how we feel, and how we react to these feelings, especially when I look at my older sister, my aunt and cousins who are all of a similar age to each other. So anyway, I actually have read about the connections of many of these sypmtoms to deficiencies, candida, gut flora imbalance, improper diet, and orthomolecular therapy was one of the first things that opened my eyes, turned on my consciousness again, but I let things fall away from me, when physical and emotional stress take over. (I haven’t mentioned that a large part of my stress ties in with a boy friend that has a lot of his own “stuff”, and also puts it onto me, while never understanding himself, or me) I also can’t eat when I’m in panic mode (fight or flight) and so my brain is really foggy, I know I have severe candida, and underlying imbalance that I really need to address but honestly I am so stuck inside myself, inside my subconscious mind, and my small little life that is too much for me to handle. I have been trying so hard. And some days, I’m able to find new information that really gets me on the track again, finding my way out, such as today, where I decided to read about orthomolecular medicine again, and this information about Pyrroles and their buildup in the blood causing Pyroluria, makes a great deal of sense to me, so many connections to other things I have read, like it’s coming into focus for me. Later today, after I feel better (hopefully) from my morning headache, pains and brain fog, I will continue on my path, of learning, small changes, and slowly regenerating what only I know I have lost. Thank you for being a part of that. It would be nice to talk to you, the writer of this blog, or others, any advice would be nice from people who have even a vague understanding of where I am coming from, because I feel that anyone I interact with, does not. Though, I won’t sit back and wait for that. I hope someday very soon that I might find it in me to make an appointment and follow through with leaving my house and going to it, and with that, find the ability to speak(and actually be able to get as much information out of this lock-box as I can) to a doctor with a holistic view point. But for now, I will take ease with knowing that I have the ability to get better. One step outside of my mind- and in the direction of change, at a time, I will find my health. To take back? Or to Submit Comment, well I’m no better off if I take back, so here it goes…..
Kleigh
You do have a lot going on and I’m so sorry to hear how long you’ve been suffering with this. I’m so pleased you found my blog and have discovered the nutritional /orthomolecular approach – it’s powerful! I do think you’d be well served to work with someone one-on-one but to start I’d suggest focusing on real whole food with quality animal protein and keeping your blood sugar stable. And so many people see so much improvement when they use the pyroluria nutrients.
You may need to be assessed for adrenal issues, food sensitivities, neurotransmitter imbalances, low iron and dysbiosis.
Trudy
Hi Kleigh, I don’t know where you live, I am in Australia, from reading you it looks like your gut needs healing, as Trudy said starting with the pyrroluria treatment should help lower stress levels to start with, a bad virus can trigger liver distress and subsequently many enzymes may be depleted so you start developing weird symptoms such as brain fog, fibromyalgia or chronic fatigue type symptoms.
From my experience as a fibromyalgia sufferer, anxiety is often a symptom along with pain and sleeping issues, etc, look into a low oxalate diet along with Pyrole treatment, if you have a NeurOptimal trainer near you, it would also help to get out of the emotional rut…NeurOptimal is a gentle, holistic form of brain training…it just helps your brain to make new connections/ neural pathways, and always helps other treatments work better. it simply enhances our brain’s potential at changing its old patterns.
I hope you find someone near you that can help you with the orthomolecular approach too, it is the future of mental health assessment and treatments.
Good luck!! Karen
Thanks for sharing Karen – I’m not familiar with NeurOptimal and would love to know more…
Hi, thank you so much for the amazing discussion and information sharing you’ve so generously hosted here. I went through the symptom lists and I have 30 between the two. One symptom that I didn’t see, but I’ve read about in other places is the early graying of hair. I was 75% white by the time I was 30, and 95% by the time I was 35. It was pretty weird and disappointing especially since I had really gorgeous red hair to start with. :(. I wonder if you’ve seen this symptom before. Thank you for all the help you’ve provided here!
Bonnie
Hi Bonnie
Prematurely gray hair is very common and is on the list of symptoms (see #34).
Thanks for commenting and glad to help!
Trudy
I have lived with shyness most of my life and after a schizophrenic nervous breakdown became withdrawn and my social anxiety skyrocketed. I had been subjected to plenty of stigma and vilification from people to the point where it disabled me and I just totally had nothing to do with anybody. I would not pick up the phone, leave the house or attend social events or be anywhere in public. My whole family lineage is full of alcoholism and after ticking nearly all the things on the questionnaire I decided it may have been pyroluria. My relinquished sister who was adopted by another family has family photos of her as a teenager that looked exactly the same as me. I had read by a top psychiatrist in Canada who practiced orthomolecular medicine that he treated most of his clients for this disorder and had excellent results. I started on the zinc and B6 and nearly all my anxiety has gone. I talk to people on the phone and am less reluctant to shy away. This is a major milestone for me as I have felt the heavy burden of this disorder plaguing my every waking moment in readiness to go into retreat mode. This illness was literally ruling my life, overtaking my emotional responses and stopping me from doing the things I wanted. It was literally as if I was consigned to being a recluse with no contact with the outside world. I felt as if there was no hope and extended family penalising me with a “neurotic label” because I could no longer interract with people. I sought help from a psychologist years ago and read books on social anxiety. I went into treatment with the genuine intention of being honest with myself and getting the situation remedied but the success rate of that therapy was virtually zero and I wound up feeling more hopeless and disengaged from the world. If there is people out there who are typically withdrawn and have markers of mental illness you may have pyroluria. It features disproportionately higher in the psychiatric community. If it wasn’t for Trudy I don’t know what I would have done other than becomming even more emotionally crippled and unable to face life with more strength. I am looking forward to the future with more hope and being more empowered after what has occured in my life. Its sad to say but its true that our attitudes to the mentally ill are poor and we deserve to be free of stigmatisation through education of the general public. But like most types of difference there will always be discrimination, but taking these supplements has given me more courage to face people and to bear the daily impositions I experience. Thank-you 🙂
Tara
I am so pleased with your wonderful results on the pyroluria protocol. Don’t forget to look into Evening Primrose oil too – it enhances zinc absorption and is often needed. I’m sure you’re also aware that pyroluria and addictions/alcoholism are often seen together so this ties back to your family history.
Thanks so much for sharing your heart-felt and very inspiring journey here. I know this will give others much hope! Also, your comments about stigma are so important and hopefully will ring true with some readers.
Trudy
Hi Trudy,
If someone has pyroluria and takes vitamin B6 and zinc (in sufficient quantities for regular dream recall etc.), but the person doesn’t also clean up their diet 100% or get enough sleep, can that sort of “cancel out” the benefits of the supplements—so that the person experiences very little (if any) improvement?
I’m currently gluten free, but not totally grain and dairy free. There’s no question I’m reactive to dairy, and strongly suspect to grains too. Could the grain and dairy be enough to keep me stressed and anxious, no matter what else I might be doing right?
Hi Elizabeth
Yes it can because pyroluria is made worse by stress and food reactions could be considered one such stress. The gluten and grains themselves may also be factors in your anxiety.
Trudy
Thank you Trudy, I knew what your answer would be before asking but the idea of giving up dairy and grains entirely (even ghee and rice) was painful so I was in a bit of denial. Years ago I turned vegan for awhile and remember the shock when my nose wasn’t blocked anymore, and it was actually possible to fall asleep without sitting up to breathe. Before that I’d lived on milk and cereal so it seemed obvious there was a connection.
Anyway, after reading your post I changed to strict paleo and now (after a few painful days) there’s an almost surreal feeling of physical/emotional calm that’s come over me. I know it may get worse again before it gets better, but it’s encouraging to say the least.
How wonderful to hear this Elizabeth – it’s very encouraging! Good for you!
i easily scored 15 on the pyroluria test:(
you mentioned zinc, vitamin b6 and multivitamin. please give me a specific recommendation for these supplements, the options are so overwhelming on the internet but even in a health food store.
thank you!
Hi Viktoria
I start my clients on 30mg optizinc, 100mg vitamin B6 and 1300mg Evening Primrose oil. I like a copper-free/zinc-free multivitamin too. Are you looking for specific brands?
Trudy
What multi do you recommend?
Thank you, Trudy! This is such a generous labor of love, and I am a beneficiary already. I got 29 on the questionnaire. I have lyme disease.
Two questions:
What causes the stitch in the left side? I’ve had that for 10 years almost all the time, and nobody has ever been able to tell me what it was. It disappeared with my first dose of zinc.
What caught my attention is the fact that this condition causes an inability to make GABA. I also started GABA and had a very strong healing crisis reaction to it. If I take the B6, zinc and EPO, will my body be able to process amino acids better eventually, or is GABA something I need to take indefinitely, too?
Thank you so much for this site. I bought the book, and I’m looking forward to learning more. I’ve already shared this page with several people.
Hi Monica
Thanks for your kind words! Thanks for sharing the page and enjoy my book!
I’m curious if you had also started taking vitamin B6 when you noticed the stitch disappear? My understanding is that it has to do with the spleen and vitamin B6 is what helps to alleviate it.
I’m not sure what you mean by a “a very strong healing crisis reaction” but it doesn’t sound good. You don’t ever want to take more than you need and it may be that you used too much. With GABA the form also makes a big difference. If you’d like to share more details I can offer more input: form/brand, how much, how often, swallowed or opened/sublingual?
Trudy
I had bioenergy testing done in 2006 which hi-lited krytopyrrole, that’s when I googled it. Only now am I realizing the seriousness of it, occasionally see a ND, and test myself with dosages because it seems to be trial for each individual. Taking 25mg zinc gluconate or other at times, back on 500mg b6, hit and miss with Omega 3. Also dealing with adrenal weakness and taking 4 caps of Can Prev Adrenal Pro, 500mg B5, now 3 – 1/4 tsp (3000mg) of Ascorbic Acid in smoothie. If I do not get at least 7 hours of sleep of have horrific symptoms: breathing goes wonky (anxious feeling), eyes feel sticky, and brain feeling like it is being drained (not enough fuel). How can 1 or 2 hours make so much difference? Is dopamine the issue there? Any ideas/suggestions? I do take 11 drop of Melissa Balm if I wake at 5 am (2 hrs earlier than desired). I have done much healing on a emotional level and deal with things as they present. I feel happy in my heart, by lacking motivation especially when sleep deficient. All neurotransmitters were out of whack in 2006.
Chrissy
I would focus on getting that extra sleep – your body is sending you a message. I’d suggest looking into low serotonin/low GABA now, especially since you say they were out of whack in 2006. Do the amino acid questionnaire and trials (better than urinary neurotransmitter testing)
Trudy
part 2. I have decided to cut out oats and brown rice pasta and nuts and seeds, I have a hunch they are contributing to poor elimination, and will commit to 10 pm bedtime. I have a sensitive nervous system and I am an empath, yet with adequate sleep I am able to feel grounded and continually moving toward being in a good heart space. Still looking for any ideas/suggestions/comments. Your sharing is a tremendous gift. Blessings to you.
Chrissy
Yes, the grains may be a factor especially if SIBO is a problem. Do keep us posted
Trudy
Part 3 Also dealing with dry patches and white patches on arms, and have been aware the liver is challenged as well. Had several years of high stress and much emotional processing, mostly behind me except for the physical healing now. I take apple cider vinegar 2 tblsp in water, dandelion tea recently started, and castor packs 3 days/wk. Also would like to have suggestions regarding this matter. Thank you kindly
Hi Chrissy
It’s hard to say but I’d look into low thyroid, fatty acid deficiency and a topical yeast/fungal infection
trudy
Hi Trudy,
I have enjoyed this post and read every single comment for more info! Here are a few questions/comments I did not see answered.
– We just completed urinary pyrrole testing through pyroluriatesting.com Their instructions for collection, storage and shipping of the urine are very strict and precise, and they use a lab that calibrates the test in a certain way. They are recommended by Drs. Walsh and Menseh, who are pioneers in this field (as I am sure you know). I imagine those who want to get tested would find good help here. My 5 year old son’s results were 25.
-My husband has not been tested but has many of the symptoms (some very severely) and is feeling better on the protocol. However, he is COMPLETELY extroverted. (My son is often extroverted too) He may be the minority but thinking of pyroluria as a social anxiety disorder rather than a generalized anxiety disorder might stop some people from investigating further.
– My daughter, who has not yet been tested, cannot abide the taste of the powdered zinc citrate. Is a reaction to this of the same significance as the zinc challenge test? Or do you know a zinc supplement that is better tasting for kids?
– What are your dietary recommendations for a pyroluric? I have noted obviously whole foods, good quality animal protein and careful of nut intake. Anything else specific?
– Can you explain the connection between pyroluria and thyroid problems?
– Do you have any specific labs you recommend for a good look at gut function/parasites/infections?
Thank you very much Trudy!
Hi Michelle
I don’t ever do the pyroluria testing due to false negatives (even with this lab) but a positive that correlates with symptoms is good, especially when the supplements lead to symptom resolution.
Thanks for the feedback on your husband and son and extroversion. They are the first pyrolurics I’ve heard of who are.
I don’t have experience with the powdered zinc citrate and it’s taste – I’d suspect any unflavored form of powered zinc would taste bad if your zinc status in good. A good test would be to buy the zinc sulfate and see if her reaction is similar. I don’t have a rec for a child’s zinc.
Dietary recs: watch copper in supps and water (pipes); Thyroid: zinc is needed for both; labs for gut: Great Plains OAT, Genova Gi Effects or Diagnostechs GI profile
Trudy
This is really fascinating in regards to my daughter. She has so very many of the items listed. She is 12 and 108 pounds. If I were to start her on the protocol you recommended, would it be the same for someone her age and size?
Brandy
I use half the adult dose for children of that weight. I consider 120 lbs to be adult weight.
Trudy
Thank you so much for sharing this information.
I have learned so much! Is it true that
increasing zinc can stir up heavy metals?
I have read that something to chelate is necessary, to
usher the metals out of the body so they will
not recirculate. Is this true?
Can a person with high histamine also
benefit from niacinmide?
Do you find most of your clients can
tolerate the P5P form of B6?
Hi Suzie
You are most welcome. For some people going slow on the zinc would be good, especially if they do have heavy metals. Heavy metal chelation is a big deal and need to be done carefully.
If you’re referring to histadelia, no – niacinamide is more helpful for low histamine or histapenia
Many do fine on vitamin B6/pyridoxine and some need P5P or a combo of both
Trudy
Hello Trudy! I was wondering what you think about copper “dumping” when you take zinc. I have been told that I need to be careful when taking zinc as it may release too much copper into the bloodstream causing severe emotional reactions, as well as being very hard on your liver and adrenals. Do you have any suggestions about this? I tried to take the zinc and felt terrible.
Hi Lisa
Yes copper dumping can be an issue with some people. I don’t see it very often but if you feel terrible on any supplement you’d want to back down. You don’t mention the form of zinc and how much or how it made you feel but I can say I typically start my clients on 30mg zinc and find the opti-zinc (zinc monomethionine) to be well tolerated.
Trudy
Dear Trudy,
Thanks so much for your site! I was tested for pyroluria 3 months ago and have been on supplements from my doctor’s script with the compounding chemist. I originally went to the doctor as I have insomnia. My sleep improved for the first 2 weeks but then reverted. I am still the same – awful insomnia. I have been reading your site and it seems tryptophan might be worth a try? What brand and dosage do you think is OK? I never wanted to think I had depression (my dad has awful depression and I found that so hard growing up), but now I think I have always had depression. I was diagnosed with PMS in my late 20s and have used natural progesterone for years now (I am 50 now). Have always been anxious, fearful, but extroverted as a child and turning into an introvert as a teenager (also had a big stress event when I was 15), also a late developer. I also had ovarian cysts when I was 21. And I only managed to have 1 child – I miscarried otherwise.
Do you know if rosacea is connected to pyroluria? I have rosacea. Have just found out that that is what it is (my face).
My doctor has not made recommendations about diet. I was going to try the Essylstyn diet. But being vegan is not a good diet? Esselstyn says all meat and dairy products harm our heart. Bill Clinton follows his diet.
I also groan at the thought of going gluten free. Do I really have to do this? (On the supplements my gut/toilet habits seem better). And I love a coffee in the morning…also apples (copper) and chocolate. Do I really have to cut these things out? What should I be eating?
I have a friend who stopped taking the supplements because she said they made her too depressed. But from reading your site perhaps she was ‘dumping copper’? I have had bad bouts of depression too but I am so desperate to get better generally that I have stuck with them and for now the depression has lifted. I stopped taking evening primrose oil because of the depression and felt better afterwards. But from your site it looks as if I should take EPO (my doc recommended it). Also I must ask my doctor about histamine….
In my 20s the GP/naturopath who told me I had PMS & gave me natural progesterone also said I was not absorbing my food, but she didn’t know why. This was over 20 yrs ago. Then later a naturopath teated me and said I had an autoimmune problem, but he couldn’t tell me what it was. Do you think I should get a test for autoimmune problems? Maybe in 2015 they have better testing.
I have had insomnia for 8 years now. I wish it would go.
I will see my doctor in 2 weeks for a follow up. It’s always a long wait as he is very popular & only works a few days per week.
Thank you. Sorry this is so long.
Lin
P.S I think I do feel stronger on the supplements. I’ve had times of feeling relaxed, but it’s been a rocky ride with ups & downs. My pyrroles result was: HPL (ug/dL 121.1).
Hi Lin
It is long 🙂 but you have a lot going on. I can’t give you specific advice but will share what I’d look into if you were working with me.
Insomnia: gluten (especially with autoimmune connection), coffee, low serotonin (so tryptophan and possibly melatonin), parasites, progesterone (low and high – too much can cause a reverse effect) and high cortisol (adrenal saliva test).
I would advise against a vegan diet. And address the pyroluria with supplements and stress reduction.
The rosacea is a clue to address gut health – SIBO/small intestinal bacterial overgrowth is one example.
You could test fatty acids levels to see how much EPO you need.
I see you say “have been on supplements from my doctor’s script with the compounding chemist.” I prefer to recommend zinc and B6 separately so we can go up and down as needed.
Finally, I do offer phone consults if you feel you need additional help.
Trudy
Hello again, I was also wondering what you think about negative reactions to Tryptophan. I have not had very much luck with it. I had watched Jill Carnahan’s video on the depression sessions when she talked about the IDO enzyme being activated which will cause the tryptophan to go down the wrong pathway–turning it into an excitotoxin.. Do you have any suggestions?
Hi Lisa
There are a few things to consider. Some people do better on tryptophan and some do better on 5-HTP. If you don’t have low serotonin then neither will work and/or can cause an adverse reaction. The brand is key – I only use Lidtke. And the amount is key – you may do well on the starting dose of 500mg or may need more. You may also only need a very small amount like 1/10th or even 1/20th of a 500mg capsule.
You say: “I have not had very much luck with it” – would you mind sharing what reaction you had? and how much did you use? and what brand did you use?
Finally what low serotonin symptoms do you have? you can check out the amino acids questionnaire here https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
I have not yet heard Jill Carnahan’s interview but will say that the tryptophan/IDO/quinolinic acid concerns are somewhat contraversial and it’s not something that I have seen issues with. But that being said, we are all unique and you could react badly to anything and it’s possible that this is a reason.
Trudy
Hi Trudy!
I did check positive for 18 (15 of most common) of your signs and symptoms you have listed. So I started taking B vitamin complex and Zinc for like a week and an half! Now after that period I felt really better, my social anxiety disappeared and I felt overall happier. To be honest I felt a change after one or two days!
After that one week and an half I wanted to test myself if I really do have pyroluria just to be sure! I stopped taking the B vitamin complex and Zinc for two weeks. Then I left an urine sample to a lab in the UK called Biolab! Two weeks later I did receive the results saying that it’s negative for Pyroluria! I scored 0.05/units per 1,000 mOsmol/kg and their reference interval is that all scores under 0.08 is negative.
Since I stopped the supplements I felt some of the anxiety coming back especially when around people but it’s still better than before I took the supplements!
Now should I accept the results or is it false because I took these supplements for a week and an half then stopped them due to the urine sample?
I eat a lot of oats and nuts and maybe that’s the reason i’m not having a hundred percent relapse of the anxiety!
Also my hair is thinning and I have some pimples on the scalp but according to my doctor i’m not going bald but it’s because of stress! I’m really worried because I don’t want to lose my hair I’m just 23 years old! I really want to know if it’s caused because of this condition!
Kind regards
Fredy
Fredy
I find that many pyroluria tests give false negative results. If you score high and feel better on the supps then I recommend my clients stay on the supplements.
Nuts are high in copper and may be a factor. Oats need to be gluten free but may be an issue just because they are a grain.
Trudy
Trudy,
I’ve been reading your website and youtube videos and wondering if pyroluria is my issue?
I have arguably 16-18 yes’s on the questionnaire, but I feel my primary symptoms are much more physical and emotions secondary or down stream. But truthfully, after 14 years of debilitating chronic exhaustion, I just don’t know?!
I was an ultra marathon runner and all around physically active person, plus an 80 hr/week executive. It all came to a crashing halt in my early 40s. I’m 56 now, lost my career, much of my savings, unemployed, can’t exert myself physically, mentally, or emotionally without exacerbating a laundry list of symptoms.
Sleep is a big issue. I have no problem with sleep onset, doze off in complete peace and tranquility, but wake 2-4-6 hrs later in complete full body pain, joints, muscles, whole body, tension, fully alert, and in despair. I feel like I’ve been poisoned or died and resuscitated. It’s not apnea but feels like I imagine a severe case would be. So needless to say non-restorative, and that’s the beginning of an exhaustive day, 14 years worth of them. I’ve always been an active dreamer. No amount of sleep, rest, or naps resolve exhaustion, and naps are just as painful.
Have you heard of anyone with sleep issues like this? Does this sound like pyroluria?
Thanks,
Hi Greg
I’m sorry to hear about this! With that score it may be pyroluria or at least a need for the nutrients. But I suspect there is much more going on – some things come to mind: high cortisol (like an adrenalin surge?), low GABA (muscle tension is a clue), low serotonin (affects sleep and pain too) and even parasites (which are very active at night). Low magnesium can also cause pain and anxiety.
Do tune in to the Anxiety Summit this week – toxins like mold may also be an issue and SIBO can do this too http://www.theanxietysummit.com
Trudy
HEY I think I have had this ALL my life!!!!! My question is: this is suppose to be a genetic problem what gene names are involved?????
Fred – it is considered a genetic problem
Hi Trudy!
Some concerns that I have is that my hair is getting grey and the hair is also getting thinner from the sides! My hair is not as full as it used to be and I have been getting some rash kinda like zits containing water when I squeeze them out! Could this be because I may have gluten sensitivity (don’t know yet, need to get tested) or because of some defencies in zinc or b vitamins?
I’m only 23 years old! I know I have pyroluria because I scored high on your questionaire too so I will get on the protocol soon! Just needed an expertise advice on this! Thanks in advance!
In regards
Freddy
Skin issues can be related to low zinc. Gluten may well be a factor too. With thinning hear I’d look into thyroid issues
wow. I just heard of Pyroluria last week and told my daughter I thought we had it! then when I looked at the talks for today I was like YES!!! here is help for me…thank you!!
I went to my Functional medicine dr the other day and he said he had never heard of pyroluria, but was willing to do whatever test was needed. I took the survey and have 27 out of 29 and 12 of the next group! ugh. There are 5 girls in my family and we look pretty much alike.
My mom died at 69 laying on her bed depressed/hashimotos. I was diagnosed a few years back with Hashimoto thyroid after YEARS of being sick, miscarriages, horrible PMS, hemorraging periods (had a hysta 20 years ago) adrenal fatigue, ringing ears…dizziness? Menneirres? sinus infections always, bladder/yeast infections (candida) I was misdiagnosed for years by doctors…they said I had PTSD? and put me on anti depression meds. I got shingles three times…
I lived my childhood under my desk…i was too scared to come out. I was on tranquilizers in 2nd grade for anxiety/diahrea etc. (my dad was alcoholic) I lived with panic attacks for about 20 years…thought I was going to die.
I have been sugar free, dairy free, grain free (all gluten) on the auto immune protocol for 3 years…trying to heal my gut…i have no parasites? (stool test) but was so sick in Egypt and after coming home I couldnt stay awake…this was a few years ago and thus my search for health… went to the hospital thinking I was having a heart attack, but my thyroid was out of control….and thus my hashimoto diagnosis.
I tried bone broth for months…i have constipation (it changed a few years back from diahrea) I got tested and had low copper AND zinc and calcium. I have a water purifier.
I can’t answer my phone or the door anymore. I have a block/anxiety so bad…I hang out with my kids and they all think I am wierd, although most of them struggle with anxiety too. they take drugs though where I won’t. I have a mutated gene. I have fibro and can’t exercise or it ends in migraines for days. also from a bus wreck years ago…head injury??one Doc said my pituitary is non functioning? another said I have lymes another said I have mold poisoning….
I have been having insomnia and laying awake for hours. I get foot cramps/heal pain and supplement with magnesium. I have liver pain had my gall bladder out…had attacks since I was 16.
I am on HRT but now I have too many red blood cells (testosterone?) and have had to give blood to get rid of them. I am going to a hemotologist in July to see why. I am starving all the time because most foods bloat me and make me headachy/sick…I want to feel good before I die. did I just make a joke? I don’t have any friends because they want to go to lunch..and don’t believe me…so I don’t answer the phone… I can’t tolerate anything. I don’t even talk to my sisters.
I will be 63 next month. Is there hope?
thanks for reading this…there is more but the more I wrote the more I was like…geez…is she whining?
help if you can can. THANK YOU!
oh. I just took evening primrose, zinc and magnesium B6 …crossing my fingers…. the zinc is Garden of Life vitamin code raw zinc…would that work?
the B6 is pyrodoxal 5 phosphate…for mutated gene and the evening primrose is 1300 hexane free?
thanks again
Debi
Debi
You’re not wining and yes you can have hope! You have a lot going on so I encourage you to read all you can about pyroluria and try the protocol
Since you mentioned the anxiety summit I’m assuming you’ve seen some of the many pyroluria blogs on my site (sharing here in case you haven’t)
Pyroluria, social anxiety, introversion: a summary https://www.everywomanover29.com/blog/pyroluria-social-anxiety-introversion/
My talk on the Anxiety Summit (season 1): How zinc and vitamin B6 prevent pyroluria and social anxiety https://www.everywomanover29.com/blog/anxiety-summit-how-zinc-vitamin-b6-prevent-pyroluria-social-anxiety
My talk on the Anxiety Summit (season 3): Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results https://www.everywomanover29.com/blog/anxiety-summit-pyroluria-amino-acids-acids-troubleshooting
Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results https://www.everywomanover29.com/blog/anxiety-summit-pyroluria-amino-acids-acids-troubleshooting
My book The Antianxiety Food Solution also has a whole chapter on pyroluria
I start my clients on 30 mg zinc (no copper), 100mg vitamin B6 (or 25mg P5P) and 1300mg EPO.
Please do come back and let us know how you’re doing
Trudy
Trudy,
I’m quite certain that my 17 year old daughter has Pyroluria. I counted 23 symptoms that she definitely exhibits. Her dream recall is so poor that she insists she doesn’t dream at all. I’m going to start her on Zinc, B6 and Evening Primrose right away. Her PMS is so severe that I had decided to see a gyno to discuss birth control pills. Of course I won’t after listening to your interview with Karla Maree.
I’m curious if you are familiar with Alice in Wonderland Syndrome (http://en.m.wikipedia.org/wiki/Alice_in_Wonderland_syndrome) and if so do you think it may also be a connected to Pyroluria? My daughter has experienced occasional lilliputian hallucinations since childhood.
Thank you for all the wonderful information. I’m hopeful that my daughter will begin to feel better very soon.
Brenda
Hi Brenda
I have never heard of Alice in Wonderland Syndrome but my quick peek at this link has me wondering about the word “hallucination.” The original work by Carl Pfeiffer with pyroluria was with schizophrenics so it’s possible she may see them disappear. Does she see large or small objects/people? And does she have the migraines.
I’m so pleased you resonate this with this for your daughter and will skip the pill. I hope she feels better very soon too
Please do keep me posted on the hallucinations so I can learn and share
Trudy
Trudy,
She usually experiences objects/people smaller than what they are but her more pronounced symptoms are sound distortions. She hears voices/noises (real, not imagined) much louder than they are in reality.
She does not have migraines, has never had mononucleosis or any of the other conditions listed as possible causes of Alice in Wonderland Syndrome. That’s why I’m thinking it may be caused by nutritional deficiencies. She is also hypothyroid.
Thanks for your response. I will keep you posted on her progress.
Brenda
Sensory Processing Disorder & Schizophrenia-like symptoms (perceptual), that can be exacerbated by (hidden) infections, nutrient deficiencies and possibly low blood sugar. That is my advice for you to look into for your daughter, after reading this “Alice in Wonderland Syndrome”.
Kass – thanks for sharing – and I totally agree – these and all the other possible causes would need to be considered https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
Hi Trudy:..thanking you again for an amazing summit..I am new for the first time and overwhelmed with all this wonderful info..I am using it for myself right now..I have a phone apt with you in June..I am working on my anxiety/insomnia but feel insomnia related to high cortisol..so using all the supplements for help on this..adrenal problem probably causing all of the above.
The tryptophan not helping getting me to sleep so still feel it is the high cortisol..taking Seriphos very slowing on tongue. 5-htp has helped to get me to sleep in the past but probably caused more high cortisol so will avoid for now.
I did the pyroluria questionnaire and show 10-12 symptoms on first part and maybe 1-2 on second..would the supplements recommended still benefit me? I also did the questionnaire on anxiety..I am low serotonin, low gaba and low blood sugar..
Waking at 5am or earlier with a pounding heart, is this from low blood sugar or still the adrenals and cortisol.
Looking forward to speaking with you.
Thank you again for sharing all this wonderful info..doctors have no clue…they just feel you need a drug..
Also, what is P5p? under the recommended supplements?
Eileen
It’s hard to know what could be affecting the sleep – high cortisol, low GABA, low serotonin, blood sugar issues. Or even parasites or SIBo or gluten issues.
Waking with pounding heart could be high cortisol
P5P is pyridoxal-5-phosphate, the activated form of vitamin B6
What’s the scoop on “look alike sisters”? How is that a factor/potential symptom? And what about mothers and daughters that look alike? Given the father’s issues, I was happy to see that she took a lot after me–happy disposition, social, and flattering to see my eyes, eye color, freckles, nose, etc.
Caroline – this was just something Carl Pfeiffer observed and is not a symptom
Thank you, Trudy. I took in much of the Anxiety Summit, am inspired by your work and feel hopeful for the first time in a while. After hearing the various Summit speakers I have decided to start on the pyroluria protocol for reasons explained below if the details would be helpful. For now, I’m asking if you have encountered anyone who has had difficulty with intereaction between EPO and hypertensive meds? I am on 120mg extended release Inderal. I have found info stating that a) EPO has BP lowering properties and b) since both are changed in the liver, caution should be exercised when combining them. Suggestions related to modifying the dosages? My 1300mg EPO capsules are on their way.
As to details, I am 57, wife, have grown children, grchildren, am perceived as healthy and successful by my peers, though I confess to a bit of imposter syndrome. 🙂 I hold a BS in psych and soc sciences and am a musician. Did 10 years of active parental caregiving, stressful family life, attended university and worked part time at the end of which I entered menopause and crashed physically. Migraines, insomnia, lethargy, brain fog, depression, etc. (23 symptoms on q.airre, poss 4 more) Migraines stalled further education, ended music career, isolated me from social life. Started betablockers (Inderal/propranalol, 10 mg, 15 years ago for performance anxiety. Increased to 60mg then 120mg for hypertension and migraine prevention. Is controlling BP but not migraines. Added topiramate 25 mg 6 mos ago. Noticing little change and more depression. A lot of watery, scratchy eyes and extreme light sensitivity. Opthamologist says eyes are healthy. Was on bio-identical HRT for several years, stopped 1 1/2 yrs ago. Period free for 3 years. Still had hot flashes, dry everything. Eliminated gluten, dairy, soy, sugar, corn, peanuts, caffeine. Lost 15 lbs, BMI is 22%, I play occasioal racquet sports… Can’t find answers. This info has restored hope of a well life once again. Thank you for whatever further light you can shed. Like many here, the health factors have limited my income-producing potential. Am doing as much as I can independently, though certainly am to the point of reaching out for additional help if I don’t see results. Thank you for making yourself and these experts available to the public.
Gwen
I have not seen an interaction between EPO and hypertensive meds but anytime a dietary and nutritional approach is implemented you need to keep your doctor informed and may need to adjust meds accordingly.
Keep us posted on how you do on the pyroluria protocol. I’d also have you look at the brain chemical imbalances (low serotonin = imposter syndrome) and histamine issues (migraines)
So glad you have hope restored!
I scored 32 on the Questionaire! This rings very near to my past and current life problems. I have hypothyroid and homozygous A1298C (MTHFR). I stopped Dr Ben Lynchs prenatal vitamin (taking because I’ve had 4 miscarriages), mostly because my anxiety was getting pretty high on the minimal dose (too much methylation I predict). I just started B6 and Zinc at your recommended starter doses. I have started answering my phone again already! That’s a huge difference, however, last night I had horrible shooting pains like sciatica down my hips and into my knees. Wondering if this is a sign that either my MTHFR is causing an accumulation of zinc and/or B6 and I’m becoming toxic or maybe it’s a deficiency in manganese or magnesium etc??? I haven’t started the evening primrose yet because we’re low on money but am eating sardines every other day. My diet is vegetarian but listened to your summit and became aware of my type A blood and need for more HCL. Drinking 3 glasses a day of water/ACV has drastically reduced my tummy issues!!!! Thank you! On pay day, I’ll look into getting your book. Just nervous about what I’ve read regarding zinc/B6 toxicity and neurological damage.
Thanks!
Amy
I’m going back to comments I somehow missed commenting on and came across this one – I’m sorry! I’d love to hear how you are doing?
my daughter has had surgeries for trigger finger. are there any supplements that would help relieve her pain?
Hi Miss Thelma
I’d suggest having your daughter do the pyroluria questionnaire and see how many low vitamin B6 symptoms she has. If low vitamin B6 is an issue, addressing this with 100mg vitamin B6 may help carpal tunnel (http://www.ncbi.nlm.nih.gov/pubmed/24312849) and trigger finger (http://wrightnewsletter.com/2012/10/01/relieving-trigger-finger/)
Hi Trudy,
thank you for your amazing book, I couldn’t put it down.
I have two questions, if you have time to answer them…
1. One theory says that a person suffering from pyroluria cannot utilise zinc and B6. So I guess even if such a person has zinc and B6 levels that are considered within normal limits, their body still might be unable to utilise these substances, leading to pyroluria. If this is my case and my body has enough zinc but just cannot utilise it, would I still “taste” the zinc deficiency in the zinc taste test?
2. My understanding is that if I have too much copper in my body, supplementing with zinc should help to reduce its levels. Is that correct?
Thanks again for giving me a hope to live a happy life!
Jan
Hi Jan
Glad you enjoyed my book! we love hope and happy!
1. I’m not familiar with this theory so can’t comment on this. If you like to share more about the theory I’ll comment then
2. Yes
Hi Trudy,
I discovered your website after receiving an email from another source about your recent Anxiety Summit. The information you’re providing is absolutely fantastic. I’m not sure if you’re responding to newer questions on this thread but I thought I’d give it a try!
I saw the pyroluria questionnaire in “The Mood Cure” several years ago and answered “yes” to most of the questions and I thought I might finally have an explanation for my symptoms over the years. I ordered a test through Bio-Center Laboratory in Kansas and my result was a “6” so I thought I was on the wrong path and I didn’t start zinc/B6/EPO supplementation. You are the first practitioner I’ve heard say that the supplementation may benefit people who rely only the questionnaire without testing or who may not even have pyroluria. If only I had known!
Although I will try the supplementation shortly, I did opt to take a second test (today) through Direct Healthcare Access in Illinois (www.pyroluriatesting.com). I found out about this lab after someone commented at the primalbody-primalmind.com website that this lab offers the most accurate results available because the lab provides an actual kryptopyrrole result and a “corrected” kryptopyrrole result. (The corrected kryptopyrrole result accounts for the concentration or dilution of the urine specimen.) I would be very interested to know whether or not you’ve heard about this lab.
I have two quick questions. First, could you elaborate on why the zinc/B6/EPO supplementation may benefit people who rely just on the questionnaire (I had 26 “yes” answers on your questionnaire) or who may not have pyroluria? Even if my second test isn’t positive for pyroluria I’d like to know more about how this specific supplementation could be helpful to me. Also, have you had clients with ADD whose ADD symptoms have improved with this supplementation? I haven’t been officially diagnosed with ADD but I’ve always suspected I might have it. I’d be curious whether or not you think pyroluria can cause ADD-like symptoms (although questions regarding focus don’t appear to be on the questionnaire). I guess I don’t know if high anxiety is responsible for my problems with focus or if it is actually ADD.
Thanks for the work that you do!
Darla
I have heard of both labs and both have false negatives unfortunately so I still reply on the questionnaire. Do let us know your results though.
The questionnaire shows you are low in these nutrients and it may be that you do have pyroluria. There is a ADD pyroluria connection and zinc helps a lot. Many people with ADD also have anxiety because they can’t focus. When you address the focus issues, the anxiety can go away. I also look at low catecholamines for ADD/focus issues (see questionnaire here https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/)
Hi Trudy,
I had to delay the pyroluria test one week so I’ll let you know the results. However, I just had an “aha moment” because I bought and read Datis Kharrazian’s book for the first time and some of my symptoms (which I thought might be pyroluria based on my score on that questionnaire) also sound like the symptoms he lists in his book for poor dopamine activity. It’s interesting how pyroluria and poor dopamine activity have overlapping symptoms such as an “inability to handle stress” and the “desire to isolate oneself from others.” Do you know why dopamine impairment would cause the specific tendency to isolate oneself from others? (I couldn’t find his explanation for that in his book.) I need to carefully figure out whether to start a pyroluria protocol or a dopamine-boosting protocol. It’s a tricky situation- I’m trying to help myself since I don’t have the money to have a thorough workup done by a professional.
Hi again Trudy,
Because you asked, I thought I’d give you a quick update regarding my second pyroluria test results from Direct Health Care Access in Illinois. My uncorrected test results were 10.98 (labeled high) and my corrected test results were 37.34 (also labeled high). It was recommended that I receive treatment for pyroluria. Regarding my previous question about Datis Kharrazian’s dopamine impairment symptoms list (i.e. “a desire to isolate oneself from others”)- does dopamine have a relationship with oxytocin in your professional opinion? I know you’ve mentioned that pyroluria may have a connection to oxytocin. Thanks!
Thanks for the update Darla!
I don’t know much about dopamine and oxytocin but there are a number of studies that discuss the connection – here is one http://www.ncbi.nlm.nih.gov/pubmed/24769402
This one Oxytocin, motivation and the role of dopamine: states “oxytocin appears to impact dopaminergic activity within the mesocorticolimbic dopamine system, which is crucial not only for reward and motivated behavior but also for the expression of affiliative behaviors” (http://www.ncbi.nlm.nih.gov/pubmed/23850525)
Hi Trudy,
I was referred to your site after posting my story on a Chris Kresser blog about gluten intolerance. It’s a long story, so I won’t post it here unless you really want it! Basically I checked all but 2 on the questionnaire. I also have idiopathic seizures, multiple allergies, chronic pain, and recently acquired chronic mono from Epstein Barr. Just learned this week that B6 and Zinc are critical in overcoming chronic EBV. That’s obviously not a coincidence! I will be trying your recommendations!!!! I had never heard of pyroluria before. I am so grateful to you for this website!
Hi Janet
Thanks for stopping by and sharing I’d love to hear your long story! and the Chris Kresser blog you mentioned.
I had not heard about B6 and Zinc being critical in overcoming chronic EBV
Please do let us know how you do with the pyroluria protocol and if it helps with EBV.
With the idiopathic seizures and chronic pain I’d suggest looking at low GABA; and also low serotonin and low endorphins for the pain https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
Thanks for what you do.
Could you explain the use of biotin as an antioxidant and its increasing pyrroles excretion. Is this a good or bad thing? Why do you believe the pyrrole testing is not reliable?
Denise
I’m going back to comments I somehow missed commenting on and came across this one – I’m sorry!
I’m going to add your biotin question to my list of topics to look into.
Re the pyrrole testing – this is based on seeing a 100% correlation with the questionnaire and positive results from the Vitamin Diagnostics lab before they changed their testing. Once that happened I started using their new test and pyroluria testing from various other labs and the correlation dropped to 50-60%.
Hi Trudy
I have Pyrolia and have been up and down with it for 1.5 years, I now have adrenal fatigue, do you have any advice around this ? Can you keep taking your b vitamins and zinc I read somewhere this can prevent the adrenal fatigue recovery? I also now have endo so am dealing with alot but believe it could be all connected?
Belinda
With pyroluria you need to be on the supps always. I have not heard they affect adrenal gland recovery. I’d suggest using this https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Hi Trudy,
I was introduced to you and your work through The Depression Summit with Sean Croxton. I loved your interview and also the Q&A…I just read above in these posts about Alice and Wonderland Syndrome and oh my gosh that sounds so much like me. I also get very frequent migraines and had mono when I was 20. I’m 45 now and have had Fibromyalgia pretty much since the mono :(. My question is really about the Pyrolauria Protocol..I answered yes to 30 of the questions and recently started taking 100mg B6 (waiting to start zinc until I get the liquid to do test). My question is about dreams. All my life I have had very very vivid dreams. I don’t remember a time waking up that I haven’t recalled at least one dream. I also have struggled with nightmares, sometimes severe, off and on for years. I am wondering if remembering my dreams so much means I’m not deficient in B6 or if I still could be, hence the nightmares. I do not have nightmares every night though. Also I take Tramadol and 1mg. Klonopin for Fibromyalgia pain and muscle tension so could these meds interfere with the B6 results/nightmares, etc..? Thank you so much..you rock, Lady!!
Nancy
Hi Nancy
You are so welcome – glad you enjoyed the interview and the Q and A. That’s interesting about the Alice in Wonderland Syndrome. Please do share more….what are your symptoms now? and I’d love to hear if any of them change once on the pyroluria protocol
Dreams should be pleasant and we should recall them every morning. Vivid dreams, especially if they are weird, and nightmares mean low vitamin B6.
Medications could potentially have an impact on dreams. If you’re looking for other options GABA and tryptophan can be very helpful for Fibromyalgia pain and muscle tension. Obviously work with your doctor before changing any meds.
Hey!
I apologize if I ask too many questions. I’ve had very good results with the pyroluria protocol, that is, 30 mg of zinc and 100 mg B6. But after a week I started to feel that my arms and fingers started tingling. I had also read in your book that if it would were to happen I should switch over to P5P instead, which I did. Said and done, I ordered a bottle of P5P by Thorne at 33.8 mg per tablet. I suddenly felt much better and began to dream more, even my social anxiety had disappeared completely. But the tingling in my arms and fingers were left. what do you think I should do to prevent this? I read somewhere that if you add magnesium as this would prevent that from happening, is that correct?
In regards
Freddy
Did you find the answer? I’m going back to comments I somehow missed commenting on and came across this one – I’m sorry!
What are the best forms of zinc to consume? (monomethionine, aspartate, citrate, chelate…) I have a b-complex that includes b6 and I’d like to include zinc on it’s own since I tried the optizinc and threw up each time (even when I tried it after meals, in the middle of meals and so on).
Thank you!
Hannah
Did you find the answer? I’m going back to comments I somehow missed commenting on and came across this one – I’m sorry!
I switch my clients to picolinate or chelate. BTW, optizinc is monomethionine
Hi Trudy,
I own your book (bought a few years ago) and it has been a great help. 🙂 Thank you! I wanted to give you some feedback and ask some research-oriented questions. So – first off – some feedback that you may find useful: I “fit” the pyroluria profile, so I ordered the exact Zinc Challenge test from amazon and tasted NOTHING. It tasted like water. So then I started zinc sulfate – 25mg each night. Immediately it was a HUGE HELP. Sense of smell returned (I didn’t know it was missing?!), I slept like a rock (lowers cortisol probably), and had a complete absense of any PMS symptoms. I also started to lean out naturally and lost bodyfat without trying while seeming to almost preserve muscle. It was unreal. I thought it was the best thing ever. But about 6 months later, I started losing hair everywhere. It wasn’t a focal hair loss, but a diffuse one. I didn’t associate the zinc, but went to the doctor. They did a full hormone panel and thyroid and everything was normal. I could “feel” the tingling in my scalp as it would happen, and I would touch my hair and come away with at least 15 strands at a time. I lost over the course of about 6 months – half my hair volume. In this same time, I started getting bone pain – it was subtle, but it was there. Still – didn’t associate the zinc. THEN, for the first time in my life, I got eczema on my hands! And I started waking up with nausea and EXTREMELY cold — like chills – for no reason. What was happening? Well – one day, in the middle of a hair-tingline episode and after having seen a dermatologist for the eczema, I took 2 TUMS (calcium carbonate) for minor stomach upset. I immediately felt the hair tingling STOP. A few hours later, the tingling started again – and so I took 2 more TUMS. Sure enough, it stopped. I started taking CALCIUM supplements with vitamin D and in 1 week, my eczema was gone. I had my vitamin D tested and it was 29ng/ml — slightly insufficient. I started taking 5000-10000iu of D EVERY time the tingling would start and began to incorporate more calcium-rich foods and STOPPED THE ZINC. The bone pain immediately ameliorated. The eczema left for good. The hair grew back. This is good feedback because zinc and calcium compete for absorption. I believe that while zinc helped me big time, I took it too long and at too-high doses for my personal needs. I used the Zinc Challenge test periodically, but I didn’t stop the 25mg of zinc when I could taste it strongly. I probably SHOULD have stopped the zinc at that point and just used dietary sources and no supplement, but I just kept taking it thinking that 25mg isn’t much zinc. It was. 🙂 So – I believe the zinc threw off my calcium absorption and also may have contributed to the overutilization of stored vitamin D3 (since zinc is a co-factor of D). I have stayed “positive” on the zinc challenge now – even though it has been over a year. In addition – the zinc may have lowered copper TOO much, as after my research, copper is important in bone building and a deficiency can contribute to bone pain. I STILL have to supplement D at 5000-8000iu a day AND take calcium because my levels are not yet “normal”. I DO also notice that after too many days of high-zinc foods, I need extra dietary calcium because the hair tingling comes back. So – I really threw off my chemistry somehow with that much zinc. That is not really “that much” zinc — not compared to the recommendations – so this is good feedback – because folks will want to monitor their status with the taste test CLOSELY. If I had not read up on this myself and put two and two together, I would likely still be having problems. I think I was easily in a state of zinc toxicity and I did that to myself. So please watch others for this effect. The eczema was a tough one – but after MUCH research, eczema CAN BE caused by hypocalcemia – which would explain why it responded so quickly to calcium supplements and why the zinc was preventing me from absorbing enough calcium from food. (I eat a great calcium diet, but the zinc got in the way!)
Next – I wanted to know a bit more about pyroluria from research. I have a background in research (M.S.) and cannot find anything on PubMed regarding pyroluria. It looks like you don’t recommend the urine test anymore – so what evidence do we have that pyroluria is a real condition? Is there other research and where does that exist? I am just curious to read more about it.
Finally – I started about 10-20mg of b6 each night (pyridoxine) just about a month ago. (I also take with 100mg magnesium glycinate) Sure enough, I’ve started having and remembering dreams. 🙂 B6 is the only “new” thing I’ve added, so I know that is the cause. It has also helped with bloating and PMS which I LOVE. That seems to be a cause/effect with B6 in the research, but I’m wondering more about “what that means” and whether it will “throw off” the other B vitamins. To this end, I’m taking half a B50 complex daily to round out the other B’s just in case. But what is your take on this? Any follow-up blood tests with clients give you any insight into the safety of B6 over a long-term basis? I wouldn’t want the excess b6 to affect other nutriets, folic acid, etc. Thank you in advance! 🙂
Meredith
Thank you for sharing. I have not come across anything like this so I suspect it’s a rare situation. But will certainly keep it in mind and am pleased to have this information on the blog for others to read.
As far as research goes you can find the 2 most recent papers here https://www.everywomanover29.com/blog/pyroluria-mauve-pyrrole-malvaria-kryptopyrroles-social-anxiety/ – they make reference to other papers that have been published.
Here is one from 1986 that makes reference to kryptopyrroles: A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria http://www.ncbi.nlm.nih.gov/pubmed/3520252
Most papers were published in 1970s and 1980s and can be found on the site of the Journal of Orthomolecular Medicine http://orthomolecular.org/library/jom/index.shtml. I’m not sure why these are not shown in pubmed and wish they were. We really do need some new research to get more acceptance in the mainstream.
Taking a B complex is always recommended when taking any individual B vitamin.
I have about 19 of the symptoms on the pyroluria questionnaire. I say 19 because those are the only ones I am sure of. I don’t really recall in childhood whether I had the shyness or not, but very possibly. I have not done the zinc challenge yet. I used to have bizarre dreams and nightmares (back in my 30s they were horrid) often but not so much since I have changed my diet drastically and began taking OptiZinc. I have just begun Designs for Health multis. I do recall more dreams now, since the OptiZinc. As far as alcohol, when I used to drink, I had horrid hangovers the next day while other people I drank with did not. I rarely drink nowadays, since about 8 years. I drank to self-medicate many times. I do have 3 other sisters, and the youngest one has social anxiety and is on benzos and SSRIs. She fits pyroluria perfectly to a T – palest in family, very pale actually. If you put the same wig on all of us, we’d all look pretty much the same – very, very similar in looks. I have 2 brothers. I also have the afternoon and evening carb cravings and sugar cravings, even though I have cut about 95% of sugar out of my diet. So, there’s work to be done yet. The symptom that bothers me the most is that I do get frequent bouts of depression and fatigue. I’ll go along just fine for a period and then, ‘boom’ I get exhausted and then some depression follows, I believe due to the exhaustion or fatigue. Rest usually picks me up. Strange! What do you suggest for me? I haven’t taken the 100 mg of B6 yet, but I do take 1 multi which has some B6, so if I’d take 2 of the multis, it would give me 50 mg B6 daily, and then the OptiZinc has 20 mg of B6. I do consider myself one of those ‘pixie dusters’ so I am afraid to overtake anything. I am sensitive to drugs, multivits, and even some over-the-counters. One more thing…. I began with anxiety and panic attacks in my 20s. Those cleared up somehow, long story, but anyway, I do feel anxiety from time to time and as I said above, the bouts of fatigue, etc., and I do tend to isolate.
Cindy
You posted this question on another blog but answering here too – I have pixie-dusters start low but even for them the typical pyroluria protocol seems to be fine – 30mg zinc, 100mg vitamin B6 and 1300mg EPO (over and above what’s in a multi and B complex)
Dear Trudy. As I learn more about Pyrrole Disorder / Pyroluria I was wondering about the usefulness of ‘white nail spots’ as a clinical sign ? Would be handy if we had some data on the sensitivity / specificity when looking for these clinical signs as I agree the urine test has a range of limitations. From your presentation as part of the MentalWellness summit it would appear that your patient cohort would present a fantastic opportunity for researching this very important biochemical anomaly. Kind regards, Werner
Hi Werner
Yes white spots on the nails are a clue for sure. I would love to do some research if you have ideas.
I’d also love to hear what you’ve heard about the urine testing limitations?
By the way, I recently came across your site pedal4pyrrole.com and have been meaning to reach out and connect. Thanks for bringing awareness to this!
Good to hear from you Trudy.
As far as the nail signs go, I’m thinking ..
.. start with observational work on new clients, screen for presence / absence of nail signs in context of your Pyrrole questionnaire and urine pyrrole if available .. then prospective observational work can be done to see how nail signs may change and perhaps correlate with nutrient therapy and scores from questionnaires ??
Urine testing ..
.. barriers include logistics e.g. being a long way away from a lab given sensitive technical / chemical requirements .. chance of having a false -ve e.g. someone may only get around to doing the test while they are on holiday .. also cost is a big factor
Pedal4Pyrrole ..
.. at present intentionally ‘low profile’ while seeking to understand the place of Pyrrole in the scheme of things .. need to keep Pyrrole Disorder away from the Insurers, also careful not to negatively impact professional careers of people with Pyrrole .. perhaps a classic example of not needing to medicalise poor lifestyle choices. All the while I’m learning about hosting a website, at times more fiddling and feeling clueless. My vision is to have a ‘not for profit’ web based resource from where people can access information as part of a wellness model, with links to practitioners when needed. Early days …
Look forward to
Sorry Trudy, forgot to mention on the topic of Research. The idea is to start with good quality Observational work with the aim of finding the right question for an Experimental study. Regards, Werner
Although this is an old thread, I’d like to comment on my experience with kryptopyrolles and white spots. My son has never had white spots, but his kryptopyrolles came back at 10, very high. He was suffering from bouts of suicidal depression which I was able to tie to food dyes (U.S. FDC dyes). Zinc supplementation raised his baseline mood and self-esteem and completely stopped the severe depression/suicidal bouts. He used to be autistic but now is not–he does struggle with ADHD and anxiety still–I will look into increasing his P5P to see if this helps. Will question him about dream recall when he gets back from camp. There is no question in my mind that zinc saved my son’s life–it did.
Rocketmom – thanks for sharing your son’s wonderful results with zinc! B6 is needed to make brain chemicals; for ADHD I look at gluten, low blood sugar, low iron/ferritin and a trial of tyrosine (the latter once anxiety is addressed); for anxiety I look at all of the above plus low serotonin, low GABA and high cortisol to start.
Hello Trudy, I am a 21 year old male. I’m very interested by a lot of the information on this page and think I very well may have pyroluria based on the questions. Have just a few questions before I start taking some of these supplements:
To give a bit of background, after a traumatic experience, I went through some very serious depression, which I have recovered fairly well mentally from, but it seems I crashed physically. I have always been prone to some depression and anxiety at stressful times. I’m feeling very foggy, inattentive, anxious, low in energy, have epigastric pain (hiatal hernia maybe), and most recently, very annoying and continual pain in my shoulders and neck. I feel entirely too young to be dealing with this. The anxiousness/fear feelings are much worse at night when all is quiet and I’m laying down to go to sleep.
I started taking a supplement called Neuro Clarity the other week, and it seems to be helping some with my list of symptoms. It contains st johns wort, glutamine, phosphatidylserine, bacopa, acetyl-carnitine, DMAE, ginko, and vinpocetine. I would like to take this for at least a few more weeks to see if it really makes a difference. If it seemed worthwhile to continue to take, would any of those ingredients be contraindicated for a regimen of zinc and b6?
Also, going along with some other commenters, I have experienced sensations similar to Alice in Wonderland Syndrome throughout my life, more so during periods of stress. The feeling of being extremely small somatically, like how you feel when in a football stadium. Interesting connection. Thanks so much in advance.
Mike
Glad to hear you’re finding some relief. I’m not aware of zinc and vitamin B6 being a problem with those nutrients. I would also look at the amino acid questionnaire and consider GABA (anxiety/fear, continual pain in my shoulders and neck), tryptophan (anxiousness/fear feelings are much worse at night) and even tyrosine (very foggy, inattentive, low in energy). Here is the questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
Thanks for sharing about the Alice in Wonderland Syndrome – interesting about the stress connection (pyroluria is worse when we’re under more stress) and I love the football stadium analogy.
Thanks so much for the response. Are you still offering the quick phone consultations you mentioned above?
Are the amino acid deficiencies downstream effects of pyroluria, assuming that that is my issue, or do you believe those are separate issues that need separate treatment? Also, I was under the impression that GABA supplements were unable to cross the blood brain barrier, hence medications like gabapentin?
Hi! How much B6 should a 21 year old girl be taking if this whole article applies to me?
Morgan
I have my clients start with 100mg and increase based on dream recall
Hi Trudy,
Thank you for your wonderful post and other very helful posts. I’ve read your book and have recently started following your blog. A lot of the symptoms I have experienced the past few years (with no help from pharmaceutical agents and possible worsening from them) are appearing on your questionnaires on GABA and Pyroluria. I am continuously feeling worse and need some guidance on a few things that can increse GABA / and what you’re mentioning here for pyroluria.
Is there any possibility we could do a consultation? My symptoms have changed my personality and I am barely hanging in there as a functional human being. Every day has been a struggle to get through and I would be so grateful for some time to chat about these remedies you speak of.
Best,
Michelle
Michelle
I’m so sorry to hear this. Right now I am not taking on new clients but please feel free to sign up here to be notified when this changes https://www.everywomanover29.com/services.html. Do scroll down on that page to find some additional resources to get you started now
Hi Trudy,
What a wonder-worker you are! Supplementing with zinc + B6 has been absolutely life-changing for me … it has improved almost every aspect of my existence. How strange that no one (dozens of doctors) ever tested me for this! I can see the effects of Pyroluria in my family tree going back generations … it is astonishing. It feels as if my eyes have been opened at last.
I’d like to help raise awareness about this highly treatable, highly common disorder. You say 40% of the population, but among artists — I am a fiction writer, myself — I feel that number could be even higher, and perhaps high copper is why creativity and madness have historically been linked. I have heard people mention Emily Dickinson and Charles Darwin as possible pyrolurics; I am thinking Glenn Gould and David Foster Wallace probably were, too. We tend to turn inward, and to be intuitive, yes. But then we often take the fruits of what we discover and bring them out into the world (that’s the part that can be disorienting!).
I am working hard on a new book of short stories after being so debilitated by this illness that I was unable to work for over a year. My point being, I cannot execute this idea myself, but I’m wondering if someone out there might be interested in establishing a charitable organization to help raise Pyroluria Awareness? And/or offer financial assistance to sufferers? I would love to contribute to it, if so. I think I could get a publisher to donate a percentage of my future book sales, if a 501© were in place.
If anyone is interested in this — you? you have loads of free time, yes? (double-wink) — or an idea of this sort, please let me know. As I say, I can’t be the main driver, but I’d love to help out.
God bless you. You are really helping people.
Alethea
http://aletheablack.com
Alethea
How wonderful to hear your fabulous results – I’m so happy for you and can totally relate since I have pyroluria too.
That’s such as interesting observation about artists. Well said… “We tend to turn inward, and to be intuitive, yes. But then we often take the fruits of what we discover and bring them out into the world (that’s the part that can be disorienting!).” I’d love to hear what percent of artists/writers you feel could be affected by this?
Great idea to establish a charitable organization to help raise Pyroluria Awareness and offer assistance! It’s on my list and I’d love to have you contribute! I’d also like to get some studies published so pyroluria is more accepted. There are some plans in the works for this.
All the best with your new book. Something to think about for a future book…as a writer you have a wonderful opportunity to share pyroluria stories too!
Hello, Trudy!
I suspect a very high percentage of writers/artists could be affected by this, and that the traditional association between creativity and madness could simply be a matter of copper imbalance (i.e. insufficient zinc to make copper bioavailable so toxic “unbound” copper accumulates in the brain), coupled with low GABA and low serotonin (from low zinc and low B6, respectively). Just think of the stereotype of the composer at work, trying to finish his symphony, being addled to the point of explosive outbursts by every little interruption … or the huge number of artists who’ve suffered from addiction, suicide … Hemingway, Fitzgerald, Sexton, Styron … the list goes on and on.
My last book was a little book of short stories, but this next book wants to be a bit bigger … and there IS a link (in terms of its content) to Pyroluria — so I will be hoping/praying and watching/waiting to see if perhaps someone can set up a 501c in the next year or 18 mos.
Thank you again for all that you do!
Hi Alethea.
Pyrrole disorder and how it is part of life for so many is getting more interesting by the day. On the topic of artists and copper imbalance, I’ve been wondering about ‘van Gough’ for some time. I’ll watch this space as the story unfolds.
Sincerely
Werner
Werner
Interesting – I’d love to hear your thoughts? I assume you’ve seen this: The Illness of Vincent van Gogh (http://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.159.4.519)
Some of my initial thoughts: obviously the anxiety and depression and the isolation; they say possible schizophrenia; he ate poorly, didn’t like meat and drank/had an alcohol addiction; he had a brother who was stillborn. I also wonder about low vitamin B3/pellagra and the paranoia connection and commonly seen in drinkers
Thank you Trudy, a very interesting article indeed with much to contemplate. By chance my wife and I met a knowledgable lady on a train while visiting Europe and so happened to visit the Kroller Muller museum near Arnhem Netherlands. Some time ago I passed information on to her in the hope that we continue to explore and perhaps better understand Van Gogh’s story. Who knows, one day the dots may connect as I think we can get it wrong when we diagnose through the glasses of our medical model, just take the DSM5 as an example.
Wonderful to hear about the new book and the pyroluria link – please do let us know when you publish
Stay tuned for the non-profit!
My son has serious pyroluria.
Some information that may help others. Because my son’s pyroluria is so serious, its fairly easy to see the effect of what we give him.
My son has extreme sensitivity to medication and also seizures.
You need to take the activated form of B6. The non-activated form can cause damage to your nerves but the activated form doesn’t do this.
People suggested seperating the dose of B6 and zinc by several hours. I found this to be detremental. He was seriously worse off when we did this. I tried to do this several times with the same negative result each time. The best way we found was to take the zinc and activated B6 together in six doses throughout the day.
My son was made pschotic by a neurologist keeping him on epilepsy medication who didn’t believe in side effects and when this neurologist was finished, my son was super sensitve to practically everything including things like vitamin D and vitamin C. My son’s body was left in mess by this neurologist.
We found the way to address this sensitivity was to avoid the reaction (don’t give him anything that he would react to) while giving him B6 and zinc and the reaction is improving. It went from a 4 day reaction to a 12 hour reaction. The reaction was like a stretching a rubber band. For the 4 day reaction, the reaction was much greater than the reaction on 12 hours.
For some reason glucosamine HCl (this is the only form of glucosamine that did anything – we tried glucosamine KCl and N-acetyl glucosamine but with poor results) reduced his seizures by 70%.
His sleeping was terrible. I’m assuming this was because the B6 is necessary to convert the neurotransmitter glutamate to GABA. Glutamate is excitatory and GABA is calming. Eventually, without enough B6, the glutamate will short circuit the brain and cause seizures. However when you start the B6, it takes time for the seizures to improve because I’m assuming that the GABA receptors have to reactivated or some such (I’m not sure exactly).
Also the amount of activated B6 depends on the severity of the pyroluria. For minor cases, as little as 40mg of B6 is sufficient with zinc (divided into several doses). For severe pyroluria, much more is needed. My son is on 600mg of activated B6 and this making a big difference to him. He cannot tolerate the B6 in large amounts so we have put 25mg per capsule with apple fibre as a filler which he tollerates with no issues.
Also, metabolic specialists have been no help since they do not believe pyroluria is a real metablic disorder. They may be right in a sense because the mechanism may be different to what people currently believe it to be. However, they do not investigate and are not interested in investigating the disorder since they don’t believe it exists. Head in the sand.
I hope someone finds this information useful.
Norm
Thank you for sharing. I’m so glad to hear your son is doing well. I have not come across the need for multiple divided doses so this is good for me to know.
Just a FYI in case you’re not aware: the ketogenic diet is very helpful for seizures
Hello again Trudy,
I keep dreaming about a pyroluria non-profit to advance awareness and assist sufferers. I was wondering if it might be worth writing to the executives at Soloray to see if they would donate some of their Optizinc product to such a cause. I know you suggest this product by name (as do I). This would be charitable for them, beneficial for sufferers, and beneficial for them. It could be one of the things the 501© did — give away one free bottle, as a diagnostic and therapeutic tool, to people who score high or otherwise believe themselves likely to have this illness.
As I mentioned, if a 501© were in place, I would love to ask the publisher of my next book to donate a percent of the proceeds to it. (Of course, to do that, I have to finish writing the darn thing instead of just reading about pyroluria lol! But it’s just so fascinating to finally understand what has been making me sick for decades.)
Please feel free to also write to me directly at alethea@aletheablack.com
Warmest wishes x
Great idea Alethea 🙂 I have plans in the future for this type of non-profit work and doing some studies but it’s just not something I can commit to right now as much as I’d love to.
Thanks too for the generous offer of book proceeds. I’ll make a deal with you. Finish the book and then we’ll talk!
Hello, congratulations for your work.
I have many of this symptoms and i’m considering taking Zinc, B6 and Primrise oil. My question is: I suspect that my testosterone levels are high (i have facial and body hair and loss hair in the front of my head) and i read that zinc increase testosterone. Is it safe for me to take?
Thank you for your time
Have a wonderfull day
Catarina
I’m afraid I can’t give individual recommendations on the blog. If I was working with someone who suspected high testosterone I’d suggest working with their doctor, getting tested, finding out why it’s high and addressing it
Hi there,
thank you for this blog post.
I’ve just discovered “pyroluria” 3 days ago and I have about 27 VERY clear symptoms.
I’m 280 pounds and I’ve started supplementing with 75 of zinc orotate and 200-300g of pyridoxine hydrochloride 2 days ago. I noticed an 80% reduction in symptoms from day one which is amazing.
It feels quite natural to finally have some emotional stability hence I might not seem THAT excited about it lol.
Here’s a question:
At what times should b6 an zinc be taken? And should they be taken together?
As I’ve read somewhere that they might compete for absorption if taken together and what have you…
So I’ve been taking them randomly but like 4-5 hours apart which seems to work.
What’s your experience?
Thanks,
Roman
Hi Roman
How wonderful that you noticed an 80% reduction in symptoms from day one! I have my clients take zinc and B6 together and at breakfast and lunch
Hi Trudy,
Is Opti Zinc safe to take during pregnancy? I read somewhere that it was not. I hardly think you would be recommending it to women as many could become pregnant.
Please answer as I know my daughter is taking it and she is pregnant.
Diane Sprules
Diane
This is from webmed but anyone who is pregnant or breast-feeding should talk to their doctor about any supplements they are taking.
Pregnancy and breast-feeding: Zinc is LIKELY SAFE for most pregnant and breast-feeding women when used in the recommended daily amounts (RDA). However, zinc is POSSIBLY UNSAFE when used in high doses by breast-feeding women and LIKELY UNSAFE when used in high doses by pregnant women. Pregnant women over 18 should not take more than 40 mg of zinc per day; pregnant women age 14 to 18 should not take more than 34 mg per day. Breast-feeding women over 18 should not take more than 40 mg of zinc per day; breast-feeding women age 14 to 18 should not take more than 34 mg per day. (http://www.webmd.com/vitamins-supplements/ingredientmono-982-ZINC.aspx?activeIngredientId=982&activeIngredientName=ZINC&source=2)
Congrats on your daughter’s pregnancy!
Hi Trudy I recently read about Pyroluria through you and noticed that the extreme inner tension popping joints and other symptoms matched me perfectly so although I did not get the test I started on the supplements. I began noticing some improvements even one night I felt the tension had gone away, I was so excited however shortly after I crashed due to the PsP 5. Started to get extremely irritable and very sleepy just wanted to sleep the whole day. It felt like a toxic effect. I know it was the b6 because I’ve had similar experience with b 12 in the past. Can it be that I have Pyroluria but for some reason even though my body has a need for the supplements it’s unable to process them correctly?
Chris
Glad to hear you saw some benefits – this is promising. When I see effects like this I think the form of the nutrient may be the problem or possibly too much. When I hear irritability/toxic effect I think possibly too much zinc and copper dumping.
What’s strange is that it always happens whenever I take vitamin B12 or b6 it like puts me in a rage. These last couple of months I’ve deleloped a tightness and twitching of the neck, caused from the severe tension, it’s pretty scary. I was only taking 50 mg of PsP. What would you recommend? I searched online and also other people go into a rage with B 6 and B12?
Chris
As mentioned above with strange responses I think the form of the nutrient may be the problem or possibly too much. I encourage you to find a good practitioner to test and guide you. Doing genetic testing though a lab like 23andme may be useful. And possibly Spectracell to check all nutrient levels.
What happened to the questions that help identify which amino acids worth trying?
Hi Esther
Here is the amino acid questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/ and the amino acid precautions https://www.everywomanover29.com/blog/amino-acid-precautions/
Dear Trudy,
I have recently seen a naturopth who said that if i dont have the MTHFR gene/s then my pyroluria is not genetic and can be treated as a symptom (not requiring supplementation for life) of the body being out of balance and once corrected, i wont require pyrrole supplements. I had a blood test for mthfr gene but it was negative (i am not sure id that was for both genes?). My question is: if you dont have the mthfr gene/s, pyroluria is then not genetic?, and if it is not genetic pyroluria, the can it be corrected just through diet,healing gut lining, clearing hormones and yeast/candida and supporting methyl pathways?
I am a bit lost and would greatly appreciate some insight into this line of thought?
Warmest thanks,
Angela
Angela
Based on the work of Carl Pfeiffer, pyroluria is genetic. I have heard some practitioners (like Jess Armine) saying pyroluria is not always genetic and right now I disagree but am open to having my mind changed if I see the evidence.
I can share that I am seeing a connection between pyroluria and the MTHFR gene. But this is the first time I’ve heard that if you don’t have the MTHFR gene/s then your pyroluria is not genetic and can be treated as a symptom. I would love to know where she heard it/learned about this so I can learn more. Right now I don’t believe we know enough to make a definitive statement like this.
I would say not to worry about it and base future decisions on how you feel and do when on the pyroluria supps and when off them. If they help then you’d want to continue.
May I ask how you score on the questionnaire? and if you did the urine test? and the result?
Dear Trudy,
Thank you for your reply. I will ask next time I visit my new naturopath where this came from.
Even thou i recall my Dr in the past saying I did not have the MTHFR gene, I respond really well to SAMe and inositol. I have not been maintaining my pyroluria supplements since having my third baby in April 2012 and my fourth baby 2014. I am struggling big time and saught out the advice of a naturopath so I could get back on track as I am not 100% sure of the levels to take while breastfeeding.
My Urine test for pyroluria (Australia) in 2008 was 29.7 for pyrroles and the questionnaire test from above and in your book was; most common symptoms 22 out of 29 and less common symptoms 11 out of 13.
I feel I become very agitated on b6 (take p5p) when taking it again, as in the past when I take anything that is activated B’s in a formula i get really racing, agitated and anxious (like high Adrenalin). I wonder if this happens more when my zinc levels are low and I not supplementing a high enough dose of zinc to elevate my zinc levels, while taking high level of B6 (p5p) – like the ratio is out? Is this common? especially with high blood copper levels.
Thank you for your amazing work and support in this area.
Kindest thanks,
Angela
Angela
I’m not aware of B6/zinc ratio issues and would suspect its the P5P itself
Hi Trudy, I’m sure my son has pyroluria. He has all symptoms and the test came back positive from the Direct Health Care Access laboratory. He is high in KRYPTOPYRROLE (URINE) 25.81 but he has a normal Zinc, Plasma 115 ug/dL so I wonder if I should supplement with zinc? Is it normal sometimes with pyroluria to have a high zinc status?
Flora
I don’t find plasma zinc to be very accurate and would also look at if he has low zinc symptoms (joint pain, stretch marks, poor appetite or sense of smell etc), alkaline phosphatase (< 70) and the zinc sulfate taste test.
I bought some Zinc Tally and I am gonna have the taste test done tomorrow. Thanks!
Hi Trudy.
First of all I want to thank you for the amazing information you bring to all of us who are mostly clueless about amino acids, neurotransmitters and everything else!
I know for a fact that I am zinc deficient and I’m currently taking 15mg of Ionic Zinc which is in liquid form. I meet almost all of the criteria from your questionnaire and I believe I might also be B6 deficient because I suffer from horrible chronic migraines and anxiety rules my life. I am only on b12 but I believe I should add some b6 as well. What is your recommending dosage and what brands do you like?
Annie
Most welcome 🙂
I start my clients on 30mg zinc, 100mg B6 and 1300mg EPO, plus a good copper-free multi. My favorite brands are listed here https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
He just taste it, no taste, just like water. A little taste of something afetr 30 sec. I’m gonna start supplement that will arive by mail soon.
NOW Foods P-5-P Coenzyme B6 (50 mg), Zinc Picolinate (25 mg) and Super Evening Primrose Oil (1330 mg)
He is around 175 lbs, what do you suggest, 4 times a day?
I’m afraid I can’t consult via the blog. I start my clients on 30mg zinc, 100mg B6 (or 25mg P5P) and 1300mg EPO, plus a good copper-free multi.
Hi Trudy,
I have many of the symptoms on your questionnaire, and it’s probable that I do have pyroluria. However, I feel that I probably have Aspergers as well, and many of the symptoms that you mention for Pyroluria overlap with the symptoms for Aspergers Syndrome. What are your thoughts on this? I feel like there is a common thread in both of these problems.
Mary
Yes there are many overlaps with pyroluria and ASD/Aspergers (and other conditions). I blog about it here https://www.everywomanover29.com/blog/oxytocin-social-anxiety-pyroluria-autism/ and here https://www.everywomanover29.com/blog/pyroluria-prevalence-associated-conditions/
Often addressing one condition by addressing nutritional imbalances helps with other related conditions and symptoms.
I’d appreciate hearing which symptoms on the questionnaire you have.
HI Trudy,
Could I take a B complex in place of the B6 for pyroluria?
Thank you for all of your great information!
Loren
Loren
A B complex typically has 50mg of B6 and the starting dose for most of my clients with pyroluria is 100mg, going up to 500mg and or adding in P5P, so doing both the B complex and B6 and or P5P works best for most
HI Trudy,
I am so glad I stumbled upon your blog. I have many of the symptoms on your questionnaire. Growing up very as a very fearful child. I have suffered from anxiety for about 10 years. Always seeing nightmares. I learned to manage it somehow but they still come back from time to time. One of the symptoms that I saw on another blog about Pyroluria and was always a puzzle for me was premature grey hair. When I was about 12 years old I had a lot of grey hair but over time they turned black again. What could this mean?
I’ve always been taking multivitamins which contain 25mg b6 and 9mg Zinc twice a day. I know that’s very little compared to the recommended dosage but wouldn’t it help a little bit because I haven’t really noticed any difference. I’ve been taking it for about 3 weeks.
Edit on my last paragraph I have only been taking multivitamins for 3 weeks not always.
If someone has pyroluria they need higher doses than what you’d find in a multi
Thank you so much for your response Trudy. I will try this out. Another interesting thing that I have been reading about lately is the link between mouth breathing and anxiety. Have you heard about this?
I’m not too familiar with the link between mouth breathing and anxiety – please share a link
http://www.nopanic.org.uk/important-breathe-properly-help-anxiety/
http://www.healthyplace.com/anxiety-panic/articles/the-importance-of-breathing-through-your-nose/
Hello I have a question
I have known about having Pyroluria via Julia Ross questionnaire. I now have been diagnosed with MTHFR and have been prescribed Deplin 15. Are these condition related and is there a conflict with the Deplin 15 (L methylfolate Ca) and the treatment for Pyroluria? They both have to do with vitimin B.
Debby
I know this isn’t your question but please be are that MTHFR is not a diagnosis but rather means you have one of the polymorphisms or mutations. Even with this it doesn’t actually mean it’s expressing and causing an issue ie. methylfolate may or may not be needed. Another factor: 15mg is a very high amount so please be aware that too much can cause issues (Dr Ben Lynch discussed this in this interview https://www.everywomanover29.com/blog/anxiety-summit-methylfolate-anxiety/). And another factor: there are other genes that may need to be factored in to a supplement plan (like COMT, CBS, MTRR etc). Finally I am not a fan of Deplin due to all the other ingredients.
To answer your question – it seems that many folks with pyroluria do have one of the MTHFR mutations.
I answered the questions and it turns out I have almost every symptom. I do not know if I can buy all the ones you recommend at once. So if I had to choose 3 or 4, which ones do you recommend and can you recommend any specific brands? I am sure zinc and b6 should be at the top of my list for sure.
Carol
For pyroluria, a good copper free multi, zinc (without copper), vitamin B6 and evening primrose oil. Here are supps I recommend to my clients https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Thank you for the quick reply. I am going to start these supplements as soon as possible. There is something else I wanted to ask about. When I was younger, about 12 or 13, I was told I had a severe hormone imbalance and a zinc deficiency. Are there supplements for a hormone imbalance or do I need blood work to know specific levels? I only recently stumbled onto research that highlighted some of the problems of a hormone imbalance. I wish I had known just how serious it can really be when I was younger.
Carol
My colleague Magdalena teaches about food for hormone balancing https://www.everywomanover29.com/blog/how-to-use-food-to-rebalance-your-hormones/
The pyroluria protocol does help too
I have taken zinc and B6 as P5P forever and still have all the symptoms.
Rebecca
I encourage you to read this post https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/ and all the pyroluria posts on my blog. And if needed work with a practitioner
Hi. There are no practitioners in my whole state of TN who deal with these type of problems. I am so sick I can no longer travel and have been to 30 doctors and Naturopath doctors with no luck. This has been going on now for 18 years at least.
I have mthfr, leaky gut and SIBO as well as suicidal depression and panic and anxiety and hypothyroidism as well. List goes on and on… I have given up anyway.
Rebecca
I’m sorry about this. Can you seek out practitioners who can work with you long distance so you can find answers?
Here are a few resources for you
Dr. Siebecker is a SIBO expert http://www.siboinfo.com
Dr Izabella Wentz for thyroid/Hashimotos http://thyroidpharmacist.com/
Dr Ben Lynch has a list of MTHFR experts http://mthfr.net/mthfr-resources/
Trudy,
Do you think it is a good or bad idea to practice intermittent fasting if one suffers from Pyroluria?
Thanks,
Shane
Shane
I’m afraid I don’t know enough about intermittent fasting to comment. Perhaps you can share more on the topic and why you feel it would be valuable?
Trudy, I had forgotten that I asked this here until I reread the comments-oops! There is a lot of info out there on IF but here is a quick overview.
https://authoritynutrition.com/10-health-benefits-of-intermittent-fasting/
I was curious if some of the benefits of fasting may in some way help pyroluria or exacerbate it.
Thanks,
Shane
Would you suggest giving an 8 yr old boy and 5 yr old girl the 30 mg zinc, 100 mg B6, 1300 mg evening primrose oil. Or would a child’s dose be lower. The whole family was able to check off so many on the list above so I wanted to start us all on the vitamins.
Tina
I use 120lbs as the cut-off for adult dosing – so from 60-120lbs I start with half an adult dose and below that one quarter.
I noticed that you also mentioned a multi-mineral and possible extra magnesium, do you have any specific recommendations about brands or why they would be a good idea to try? Thank you for your help.
Here are some brands I like https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
I just did the checklist and checked every statement on both lists except for a total of 3…I have never heard of this genetic issue before but by this checklist I feel like you know me better than anyone else ever has in my life. Amazing!!! is it advisable to take a B complex supplement or only the B6?
Deb
This is great: “I feel like you know me better than anyone else ever has in my life”! It’s wonderful when we find answers.
Yes it’s always best to take a B complex when taking individual B vitamins
I forgot to mention that my sister and I are mistaken for twins almost daily even though there are a couple of years between us and we have different hair and eye colors…and we belong to an all girl family…wow, I just astonished.
Yes this is very common. My younger sister and I are 11 years apart in age and we are often confused as to who is who
I have so many questions, so sorry to keep posting? I get my GLA from Black Currant Seed Oil as EPO makes me break out in cystic acne. What mg should I take of the BCSO instead of the 1300mg of EPO?
thanks of any comments.
Deb
It appears the GLA in EPO is more bioavailable so more Black Currant Seed Oil may be needed. Fatty acid testing could be done or base it on how quickly zinc improves (as GLA enhances zinc absorption) and other symptoms like PMS (GLA helps reduce these symptoms)
Hi,
I think I have Pyroluria, and wondered if purple sweat stains on undergarments could be a sign of it, or amino acids?
Heather
Heather
It’s the first time I’ve been asked this question and I’m not aware of purple sweat stains with pyroluria or anything else.
Trudy, I think the purple stains I got were from my mixture of Lemongrass massage oil for my skin. Sorry…
I should tell you that the last two weeks I have been in withdrawal of a Benzo, and I quickly had to order some items like Magnesium Citrate, L-Tryptophan, Vit D3, and B12 from Amazon.jp, three things came, but I ran out of B6 and B12! Wow, what a shock. I was doing so well until then. When I took the above supplements that came in I was greatly helped, plus the zinc etc. I am taking. It shows me how imperative it is to stick to the supplements, especially when withdrawing from such medicine. I cannot thank you enough for all the talks you have given that I was able to listen to and your book, The Anti-Anxiety Food Solution. I am truly grateful for your help in this area! Why is it that it took me so long to find this information? Anyway, I am so happy for having all your advice, in videos, and in print!
Heather
Thanks for the update on the purple stains and love hearing about your wonderful results! It’s good to hear the supps are helping. Too many people say those in benzo recovery should not take any supplements and I don’t agree with this across the board. I think it’s very individualized and if it’s helping I say why not use them.
Hi Trudy,
I have been taking zinc and vitamin b6 for about two weeks and I felt better! Now I ordered the pyroluria test because I want to be 100% sure. Should I stop taking the vitamins for a period of time and then do the test or should I do right away?
Thank you
Ibrahim
So glad you’re doing better. I would check with the lab – they typically say to stop for 24-48 hours. I like to say stop for at least 7 days to be safe
Thank you
I score over 30 on the test. I notice symptoms in my teenage daughter and 9 year old son. I can really see these symptoms as I think back to my late father and grandfather. Also, whenever I add in a lot of omega3 foods in my diet my social anxiety and depression worsen rapidly. Is this a slam dunk that I have pyroluria? Should I have my kids and I tested or just jump into the supplements? What do you think the best diet is for pyroluria? I have tried the vegan thing and it wrecked me!
Thanks,
MSH
Pyroluria does run in families. In this instance and when someone scores high I simply have them start the supplements and monitor their response since testing can be false negative.
Pyrolurics do well with omega-3s in the diet but not with omega-3 supplementation as they can extract the omega-3s from their diets. I am not a fan of the vegan/vegetarian diet for anyone with mood issues – you can read more here https://www.everywomanover29.com/blog/anxiety-anxiety-depression-vegetarian-diet/
Trudy,
Dr. Jack Kruse wrote this and I was wanting your thoughts on what he had to say. Is it possible to treat this disease with just diet and sun?
“DHA is not a problem in this condition at all. That is a meme that makes it circles every so often from bad info from paleo circles. Pyrroles bind with B6 and then with zinc, thus depleting these nutrients. When you eat an Epi- paleo diet and get in the sun these patients usually need nothing else. The disease itself has very few manifestations and tends to be a bigger deal in kids who are undiagnosed because their brains are not mature and it can affect their behavior”
Thanks!
This is the first I’ve heard of this and would need more information to be able to comment. Right now I would have to say absolutely not. Can you please share a link to where you read this as I searched his site for pyroluria and pyrroles and nothing came up. Thanks!
Thanks Trudy. It’s at the bottom of the comments section.
https://www.jackkruse.com/is-fish-oil-good-or-bad/#comment-429066
Thanks Shane – I took a quick read and still don’t agree. I’m going to go thru his blog post more carefully and will comment on it and try and get some feedback as to why he doesn’t feel pyroluria exists. It may simply be that it’s not something he’s come across very much. I do agree with some of what I read about omega-6s (but need to go back and read it all carefully). Thanks for asking the question and coming back with the link!
I’ve been doing the Vitamin B zinc and GLA protocol for a couple of weeks now. I’m having what I consider pretty good success. Here’s what I’ve been doing and in what amounts.
I’m a larger lady(200+) so the weeny doses of the starter protocol did nothing for me for the first week and a half. I took the bull by the horns and decided I would increase my supplements until I felt better and noticed a dream difference. I also added a ‘nutrient’ I guess you could call it that I used to take for what I thought was fibromyalgia a few years ago. here goes:
before breakfast: l-tyrosine 600 mg and DLPA 500 mg and 100 mg of GABA Powder sublingually.
with breakfast: B complex 50 mg; P5P 200 mg (don’t take regular B6 anymore, it always makes me feel terrible); pantothenic acid-don’t remember the dose; ATP Co-factors(Optimum Nutrition brand I believe); 50 mg amino chelated zinc (can’t find copper free Optizinc around here); 6 capsules of BCSO GLA. Also add 1 tbsp. of D-ribose to my morning coffee. This along with the DLPA I believe is allowing me to get through my entire day and evening with MUCH less joint and muscle pain, especially shoulders and wrists.
I take 4 mixed form magnesium softgels spaced throughout the day as well saving two of them for the evening hours.
in the evening I take 2-3000 mg of Vitamin C-to reduce cortisol at night and for general health. Another 200 mg or so of GABA Powder before bed and stir 1 tbsp. of d-ribose into warm water also before bed. D-ribose supplies the substrate to create ATP for the mitochondria or some such thing that I don’t fully remember right now.
with this regimen, I’ve been able to sleep better(even occasional semi-pleasant dream recall) significantly less joint/muscle pains, and even the ability to interact with large groups for many hours together without the expected anxiety and moodiness that would usually require me to hide out somewhere for a while.
unfortunately, my sense of smell and taste is still rather dull and I think that contributes to me generally overeating, so I have a large amount of fat to lose, but I feel that soon I may be able to make a serious attempt at dieting without the fatique and stress that have prompted me to quit previous diet plans. All in all, I’m pretty happy with my life for the last few weeks! thanks for all the information you provide for so many of us…
Sorry it’s Optimox ATP Cofactors I take.
Deb
Thanks for sharing and I love hearing these results: “sleeping better(occasional semi-pleasant dream recall) significantly less joint/muscle pains, and even the ability to interact with large groups for many hours together without the expected anxiety and moodiness”
With regard to the the overeating I’d suggest looking into more targeted amino acids for the cravings – here is the questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/ and how to do a trial. DPA is wonderful for comfort eating and tryptophan for afternoon/evening cravings.
I do have a homestudy program: Amazing Aminos for Emotional Eating if you feel you need some guidance https://www.everywomanover29.com/emotionaleatinghs/
Oh and I’d suggest quitting the coffee – it’s a strain on the adrenals, affects blood sugar, depletes key nutrients like zinc etc and very likely affects anxiety levels/sleep. I assume this is in place: real whole food, animal protein, eating to control blood sugar and no gluten?
I haven’t been fully onboard with the diet changes; extreme cravings for bread and probably sugar. I borrowed Julia Ross Diet Cure from the library and in the middle of reading it, I admit I got sidetracked in a very good way to your blog and the Pyroluria issue in particular. Finding a way to deal with those symptoms became top priority for me. I’m assuming that even not eating properly and still getting some acceptable results on that front; results will be even better once I can get my diet cleaned up.
I tried l-tryptophan for sleep last night and had disturbing unpleasant dreams, and don’t feel rested. 5-htp does the same thing so not sure about it…maybe take earlier in the evening?
Hi Trudy
I have been on the protocol now for 3 weeks and I have had a significant improvement in my anxiety but still have a way to go as well. I have been taking: 1 X 1300mg EPO, 2 X 250mg B6 X 3 times a day, 2 X 500mg L-tryptophan X 3 times day, 1 X 50mg zinc X 2 times day, 1 X multi vitamin/mineral X 1 times daily, 1 X magnesium (not sure of dose) X 3 times daily.
I tried GABA 125mg sublingual X 2 times daily as I felt I fitted the needs to use it but felt more anxious. Also the P5P seemed to make me feel more anxious.
I am still having no dream recall and my zinc test still tastes just mildly chalky. Should I keep increasing my B6 or am I taking too much already? Also should I increase my Zinc? I have just ordered Optizinc and being from Australia I can’t get Lidtke tryptophan.
I am a bit concerned about the safety of taking such high quantities but have not had any peripheral tingles.
I am gluten/grain/dairy free.
Thanks for guiding me and so many others through this maze Trudy.
Bev
Great to hear about the improvement in your anxiety! I can’t consult via the blog but can say that I typically don’t go higher than 500mg of vitamin B6 per day. You may find some answers here https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Thank you for the link Trudy. I have read it and still struggle to understand why I need so much B6 and my zinc tests indicate I am still low in zinc. I have to assume it is an absorption problem
Could you please send me some of the contacts for practitioners in Australia that deal with pyrolauria and you mentioned you could send. I live in New South Wales but could visit Queensland if I had to.
I need some advice on my dosages while I wait until you are able to do a consultation.
I know this is the right path so I am determined to continue but doing it alone is difficult and potentially dangerous given the high doses of B6 I am taking. I might try P5P again as whilst it made me feel more anxious it did help my dream recall.
Hi Trudy,
My urine test results came back positive for pyroluria. My therapist put me on 54.8 of zinc citrate and 200mg of Vitamin B6 (as Pyridoxal-5) => Brand Biocare
I have been taking those supplements for 4 months and still don’t have any dream recall and cannot see any improvement in my anxiety symptoms.
I met my therapist recently and she told to keep the same dosage and type of supplementation because she says that it takes time. However, I can see by this blog that people generally see results before 4 months.
Could you please give some advise?
Tim
If you have the right combo and are not taking any supplements that contain copper, plus you’re taking a copper-free multi, a person should see results in a week. I have my clients increase the zinc and vitamin B6 based on symptoms or we may switch to another form.
Keep in mind that pyroluria is just one aspect of anxiety and everything else should also be considered: diet, caffeine, sugar, gluten, and low neurotransmitters
Hi Trudy,
Thanks for your response.
To treat pyroluria I am taking this combo (zinc citrate + P5P) – 4 to 6 capsules a day depending on the stress level.
http://www.biocare.co.uk/default.aspx?GroupGuid=29&ProductGuid=23560&PageItemGroupGuid=29&LanguageGuid=EN#productAnchor
Additionally, I am supplementing magnesium taurate, vitamin C, Vitamin D, Fish oil, multivitamins,
And another combo (5htp + L-tyrosine) – 4 capsules a day
http://www.revital.co.uk/biocare-mood-food-by-patrick-holford-60-vegetarian-capsules-4585
All of those supplements are copper free.
I had a neurotransmitter panel and the results show serotonin levels within the range but low and norepinephrine levels really low (out of the range).
I don’t drink any coffee and I am avoiding sugar and gluten. I drink alcohol eventually but in small amount in social occasions.
There is one more important thing, I have been taking 0.5mg of clonazepam for nearly 10 years and became dependent. When I don’t take clonazepam the anxiety symptoms are even worse, and I feel like 0.5 mg is not enough anymore. I tried GABA (puritans pride) 500mg 3 times a day but I didn’t notice any benefit from it unless when I open the capsule and put part of the content under my tongue.
I will have a go with Gaba Calm (sublingual) that you mention in this blog and see if it can help me tapering off clonazepam. I will post here in the blog later.
As I said before I am on this supplementation for about 4 months and couldn’t see any improvements in my anxiety symptoms: agoraphobia, panic attacks, dizziness, sweating hands, pounding heart, feeling uncomfortable to talk to people etc. Plus I don’t have any dream recall still.
Question:
Do you think that my clonazepam addiction can be sort of hiding/holding back the effects from the supplements or the supplementation is not being helpful anyway?
I am asking that because I am thinking about to come back to antidepressants as I am thinking that supplementation is not working for me, I really don’t want to but it seems the only option by now.
By the way, I am reading your book and thinking it is really, really, really helpful!!!
This blog is amazing!!
Regards
Tim
Tim
I’m afraid to say that yes clonazepam can be a big factor in not getting total resolution of symptoms (here is one blog post https://www.everywomanover29.com/blog/benzodiazepines-more-harm-than-good/ and I encourage you to search the blog for many more blogs posts on benzos). If you decide to taper, it must be done very very very slowly.
That being said if you are getting benefits with 500mg GABA under your tongue that’s encouraging and I’d pursue that if we were working together – and increase it until no additional benefits (or adverse – typically too tired, too calm or breathless).
I don’t ever have my anxious clients use tyrosine until we have things calmed down. 5-HTP can be stimulating for some people too especially if cortisol is high. Tryptophan may work better. I’d also test salivary cortisol levels – if they are high it can make you feel more anxious.
I’m not sure what neurotransmitter panel you had done but if it was urine I don’t place much value on this test https://www.everywomanover29.com/blog/urinary-neurotransmitter-testing-falls-short/
I’m so pleased to hear the book is so helpful! and that you enjoy this blog! You’ve made some great changes and I wouldn’t give up yet!
Hi Trudy,
I am on my third week tapering off clonazepam with a dosage of 0.25mg daily. I have been using Gaba calm from Source naturals and it has been really helpful. At the same time I stopped the combo which contains tyrosine and I think it is helping as well. However , the anxiety symptoms are still present and definitely affecting my daily activities. Being in restaurants, meetings, cinema and talking to people is still very difficult for me.
Last week I had my first zinc taste test and it tasted like water even after supplementing zinc for more than 4 months. Just to be sure about the accuracy of the test, I asked my wife to test as well and she felt a very unpleasant taste. I suspect that the form of zinc that I am taking is not being properly absorbed by my body, therefore I decided to switch the form of zinc to optizinc from Solarray and will start next week. I will update later in the blog.
I will be thankful if you can spare a bit of your time to help me with the questions below:
1) Which dosage of optizinc I should start with, considering that for the last 3 weeks I have been taking 82.2mg of zinc citrate and before that I was supplementing 54.8mg?
2) Which dosage of B6 I should start with in conjunction with the optizinc mentioned above?
3) I have been eating fruits and nuts as a snack to help regulate my blood sugar levels, however I realized that some nuts have a high cooper/zinc ratio and considering that I am very low in zinc at the moment do you think I should keep on eating nuts in a daily base?
I am now on the chapter 4 of your book (Address problems with Gluten and Other Food sensitivities) and its reading has certainly being really helpful and I feel that I am learning a lot.
Many Thanks for your help.
Regards
Tim
Hi Trudy
Thank you for this blog.
I am coming down after a very stressful 4 years and changing from a very even temperament, happy go lucky, positive, effective person to difficult sleeping, mild depression and exhausted.
I was tested as low zinc, high copper.
I am currently on 75mg zinc, 100mg B6, 100mg P5P with evening Primrose Oil and Vit C and Vit E plus 3 drops of Molybdenum for lowering the copper. I have been doing this for about 2 months and do not feel overly great. A little flat about things, tired all the time, mild headaches occasionally and very full on dreams (not scary just exhausting storylines) awakening tired. Given your suggestions to others I am thinking of lowering zinc to 50mg and raising B6 to 100mg.
I would like to fall pregnant soon for my third child. I have two healthy boys and suffered terrible hyperemesis G during both pregnancies. I have spoken to my GP and she said there is no clear answer to helpful pyroluria supplementation during pregnancy – she said some practitioners stop all supplements during pregnancy and other believing nutrients are very important during pregnancy continue with supplements.
I have done extensive search on this topic and there is almost nothing out there about what pyroluria woman should do during pregnancy.
This confuses me because (a) all the information states that pyroluria people must supplement for the rest of their lives; (b) surely pregnancy is no different to the rest of a person’s life; and (c) during pregnancy there is usually an increased need for nutrients as the baby will take nutrients from the mother to grow. Given this, it make sense to me to continue supplementation as usual.
Question 1: What are your general beliefs about continuing supplementation during pregnancy? You mentioned in a previous post that somewhere else on the web it states using no more that 40mg of Zinc for pregnant woman over 18 years.
Also, my two boys seem to also be pyroluric. My first son is on primer transdermal cream – 50mg zinc, 50mg BG, 25mg P5P and 22 mg MG. He suffers from tics as well as mild anxiety and obsessive compulsive disorder. The anxiety and the OCD has almost completely gone away but he still gets tics (mostly facial).
Questions 2: What is your experience or knowledge of any connection between tics/tourettes and pyroluria?
Many thanks for your advice.
Polly
Polly
I can’t give advice about supplementing during pregnancy simply because there have been no studies on the safety aspects, but I agree it does make total sense. If you can get a doctor’s approval and have them monitor you and the baby then that would be your best option. Just so you know low vitamin B6 is a common contributing factor in hyperemesis G.
That’s wonderful to hear about your first son’s anxiety and OCD going away on this protocol. I am not familiar with a connection between tics/tourettes and pyroluria but I will do some digging. In the meantime, this is what I do know: with tics/tourettes I think gluten and this is common in pyroluria.
You’ve probably addressed all this but just in case: I’d also look into other food sensitivities, additives, dyes, salicylates, oxalates, low magnesium, artificial sweeteners, candida, fatty acid levels. This is a great book: Natural Treatments for Tics and Tourette’s: A Patient and Family Guide By Sheila Rogers DeMare.
She doesn’t mention GABA (but does mention taurine) and based on this research paper: Reduced GABAergic inhibition and abnormal sensory symptoms in children with Tourette syndrome http://www.ncbi.nlm.nih.gov/pubmed/26041822 I feel a trial of GABA would be worth it. We do see low GABA in pyroluria all the time and the pyroluria protocol helps to make GABA (and serotonin) and this could be the reason it’s been helping.
I just found this too: Nondopaminergic neurotransmission in the pathophysiology of Tourette syndrome. http://www.ncbi.nlm.nih.gov/pubmed/24295619. It appears any of the neurotransmitters could be a factor so doing the amino acid questionnaire and a trial of each one may provide a solution.
I’d love to hear how he does! And thanks for asking the question! I just learned about the neurotransmitter/Tourette’s connection!
Trudy, do you find that with your pyroluria patients that along with supplementing with zinc, B6, and GLA, that you often have to supplement with tryptophan or gaba as well to stabilize ones anxiety and/or depression?
Thanks
Shane
Yes this is often the case
Hi Trudy I’m improving with my protocol; 1500 mg of tyrosine in the am is making a difference in my daytime energy levels and I believe that adding in niacin up to 500 mg of immediate release niacin is also helping with sleep. I actually had a funny dream last night that I have remembered all day. Have you ever heard of any one remembering a vague dream the next night when they go to bed and falling back into the same dream the next night? I’ve had that experience few times. I will sleep and dream something but won’t fully remember it when awake. The next night I will be drifting off when I remember the dream and I will sort pick up dreaming where I left off.
I’m also curious about something else. Will I get back my light olive skin tone I had as a child? I used to be able to tan darkly in just minutes but have gradually paled so much that I’m a rather sickly shade. I’m unable to really determine what my skin tone actually is other than kind of a pasty colourless one. I’m hoping I can start making melanin more on the B vitamins. The GLA I’m now taking from borage oil and the flakyness is drastically reduced. I just use a dusting of mineral powder now and feel confidant my skin is smoother.
Thanks for any thoughts you might have on my questions.
Deb
Yes dreaming like that is not uncommon. Pale skin can be related to low zinc levels
Could you tell me which form of zinc is the best one to take? I am confused because there are so many different types of zinc. Also, should it be taken in liquid form?
Thank you
The reason I was asking about the zinc form is that I had been reading that zinc was best taken in the liquid zinc sulphate form.
Sorry about all the questions, and thanks for all your help!
Mary
I find the optizinc form (without copper) is very well absorbed. I use the zinc sulfate for doing the zinc trial. You can find both on my supplements blog https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Thank you for the information and the link! I will order it asap.
Trudy,
Thanks so much for the blog and all your work! A few questions for you:
1. I score over 35 on the assessment and would have to pay for the test out of pocket. Given the amount of symptoms I have is there necessarily direct benefit in getting tested or just start supplements?
2. Given that it runs in families and our 3 children have multiple symptoms including OCD/Trichotillomania in our youngest (3 y.o) and Autism in our middle (5 y.o.) and our 2 girls (3 and 7 y.o.) look exactly alike, would it be advisable to start them on supplements as well?
3. If so, are doses the same for children as adults and are there liquid or cream forms of each supplement?
Thanks so much!
Jenny
Jenny
I don’t do the urine test and just rely on the questionnaire and response to supps. I can’t give advice re your kids via the blog but I will say that I have many moms start the protocol with their kids and they find it’s easier once they have seen the results themselves they know what to expect and what questions to ask.
With your youngest (OCD/Trichotillomania) I’d look at tryptophan, GABA, inositol and NAC too (although I recently heard from a mom whose child’s OCD was much improved on the pyroluria protocol, likely because the nutrients are co-factors for making serotonin).
Pyroluria is very common in autism so if he/she has the social anxiety then it’s likely the pyroluria protocol will help.
Adult dosing for 120lbs, half that for 60lbs and so on. I don’t have the liquid supps as a blog post but am in the process of gathering some options and can share later.
I am working on a pyroluria questionnaire for kids and would love your feedback on their symptoms (as they relate to the current questionnaire)?
I assume you have all the dietary aspects in place: real food, organic, blood sugar control, quality animal protein esp at breakfast, wild fish, healthy fats, no gluten, no sugar, no caffeine, gut health addressed etc
Dear Trudy, thank you so very much for this article. Someone asked me yesterday if I suffered with pyluria. I’d never heard of it, but as I read the symptom list, so much of my life made sense. I’m so happy that it’s such an easy problem to fix. It explains why my 2 sons and 1 of my granddaughters suffer with anxiety when their upbringing was particularly designed to give them confidence, inner strength and knowledge of how loved they are. I’d always thought my anxiety was through my troubled upbringing. How wrong I seem to have been! Oh, and does coconut flour count as a ‘nut flour that will increase copper’? I don’t eat a lot of baked goods – even the gluten free ones – but it’s nice to have one option if that’s possible. Many thanks again!
May
I love it when people like you find answers. A troubled upbringing can play a role for sure and a stress like this can make the pyroluria worse. I wish you and your family much healing!
Coconut flour is perfect! and I just came across tigernut flour and will be looking into this one – it’s not a nut http://www.glutenfreeliving.com/blog/what-is-tigernut-flour/
Bless you Trudy <3 Your generosity in sharing all of this information, and taking the time to answer so very many comments sets you apart from most. May you be richly rewarded!
Hello dear Trudy, I just have a question if I may? I have been taking 3 Evening Primrose Oil capsules a day. They are Blackmores’ brand, providing 1g of EPO with 100mg GLA per capsule. My lips started to be really badly dry and I was picking at them (a life-long habit). My lips had been really good since I cut the sugar and most grains starting 18 months ago. I’ve since dropped the EPO to 2 capsules a day and this has helped immensely. I’m wondering if dry lips is a symptom of pyroluria, and was interested that it happened when adding (obviously too much, for me) EPO. I know how much you love researching pyroluria and thought this observation may be interesting to you. I’m doing really great with the B6 and zinc and it’s all thanks to you!
May
Thanks for sharing – it’s not something I’ve come across but good to know. Glad you figured it out!
If taken several forms of zinc and almost always feel nauseous or throw up – does this mean anything as far being or not being deficient?
Laura
It’s typically the form, too high a dose, not needed or not taken in the middle of a meal.
Hi Trudy, this question may have already been asked…sorry if it has. I answer yes to over 25 questions…stopped at that point. had muscle testing done to see if I was stronger with the zinc, B6 and primrose oil (tested individually) and tested yes to all counts… so started them 1 1/2 weeks ago. Feel so much better.. My Dr gave me a form to get the urine test done but may need to go private. Thought it would be nice to have an actual diagnosis..Question : Is it necessary to stop supplements for 1 week or 1 1/2 weeks to get an accurate reading ?
Maria
I would check with the lab. Typically they say a week. I think 2-3 weeks is best. Please come back and let us know who you used (lab name) and your results.
Hi Trudy,
First, I really want to thank you for your help! The amino acids (started 2 weeks ago) have really been helping.
I’m pretty sure I have prylouria because of my health issues including social anxiety, but the treatments you have recommended (started 1.5 weeks ago) do not seem to work for me. The primrose oil doesn’t harm me, but I dont think I feel any benefits from it. Same for the B6 although it may be helping my l-tryptophan/5-htp in converting to serotonin. The problem is manganese and zinc; I am taking optizinc and a vitamin shoppe manganese brand. Even after taking either zinc or manganese with a meal and water, I get horrible side effects. My skin will get worse, I get muscle tension (which I never have usually), stress symptoms, much worse sleep (usually sleep great), not as much energy as usual; so pretty much all the symptoms of toxicity. I even tried taking a microdose, less than 1/8 of the recommended dose and it still hurts me (although not as much). The thing is, regardless whether I have pyroluria or not, Im pretty sure im deficient in zinc because i dont have lunulas on my nails and the other conditions I have including leaky gut syndrome (so I couldnt have absorbed much zinc at all for years). I am really stumped and not sure what to do.
Do you have any ideas Trudy?
Kenneth
The zinc could be causing copper dumping. I’m not sure that manganese would do this but anything is possible. I like to isolate the offending nutrient and then proceed from there. If it is the zinc, I’d consider another form, very low amounts, once a week and possibly adding molybdenum.
Also check out this blog https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Actually, to put it better, the zinc and manganese cause me anticholinergic symptoms like dry mouth and some constipation, and the severity changes linearly with the dose I take.
Blessings,
Kenneth
It’s the first time I’ve heard this! interesting! it sounds like they may be having an effect on the vagus nerve
Hi,
I was wondering if we MUST take B6 and Zinc separately or can they both be taken as part of a multivitamin and mineral supplement?
http://www.lifeextension.com/vitamins-supplements/item02014/two-per-day-capsules
This is the one I am thinking about taking. It has 75mg B6 per serving and 30mg Zinc (as zinc citrate, OptiZinc® zinc monomethionine
Thank you in advance,
have a wonderful day
Kathy
For folks with pyroluria or the symptoms, the zinc and vitamin B6 in a good muulti is typically not enough. Many multis often contain copper, although this one doesn’t.
Hello Trudy
can I still ask a question on here?
Jim – please do
thank you
could I only have vitamin B6 deficiency and not be zinc deficient or pyroluria people must be deficient in both?
I do not have any white spots on my nails which is why I believe I do not have Zinc deficiency however I have around 15 of the symptoms you listed
and would 75mg of B6 be enough?
Hi thank you so much! I think this may be the missing link for us and especially my husband. He is taking Effexor daily and occasionally will have to use diazepam or similar as GABA doesn’t always cut it. Any cautions for us before we start this protocol? He is taking selenium, iodine buy skin patch, wild salmon oil, D and Kevin. Our favorite vitamins are back ordered (nutreince) so we haven’t had them in a while.
Heather
The pyroluria supplements are fine to take with medications. I encourage you to check out the wealth of benzodiazepine information on my blog – here is the most recent one https://www.everywomanover29.com/blog/benzodiazepine-informed-consent/
I’m not clear what these are? iodine buy skin patch and Kevin
Hi Trudy,
I stumbled upon your blog a couple of weeks ago and I love it!
I believe I have pyroluria and I have been on B6 and Zinc for two weeks now but see no improvement. Is it usually a longer process for healing? how long do you think before I start to notice improvement?
Katherine
Glad you’re enjoying the material here. With the right combination and assuming nothing else is going on (and there usually is lots more going on) a week or two and you should see a difference. Some things to consider: forms of the zinc and B6, any copper in any supps, how much, quality, evening primrose oils helps zinc absorption. This blog goes into trouble-shooting even more https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Hi Trudy, boy am I glad I heard you speak on ¨Winter of Wellness¨…I tested 34 out of 41 questions and then had a muscle test done to see if i was stronger with B6 and Zinc (tested simultaneously). have been taking them along with even. prim. oil now since 1 month now and what a difference. Although I did start to feel better within a couple of days of starting supplements. A HUGE thank you Trudy !!! My question is this…is phenylalanine contraindicated when you have Pyroluria ? Someone said this to me but I haven’t found this info yet. Also, I may get the testing done (privately) but am feeling so good that I don’t want to stop taking them for the 1-2 weeks required. By the way I live in Quebec, Canada.
Maria
Love to hear results like this! Many don’t want to stop to test! I am not aware of any issue with phenylalanine and have had many clients with pyroluria do well on DPA and DLPA (I use less of the latter).
Would you please share how much of each are you taking? and forms? and curious if you did the introvert questionnaire and how you scored before and now? Here it is https://www.everywomanover29.com/blog/anxious-introvert-because-of-low-zinc-and-vitamin-b6/
Hi, I’ve been taking Zinc Citrate 30mgs twice a day, Vit B6 100mgs twice a day and EPO 1,000mgs twice a day. These doses were checked with a health care professional when I had the muscle testing done and again just the other day by my personal Naturopath/Medical Intuitive so the dosages are good for/with me. I also take a low dose (long term) of liquid Vit B complex and Mg Phos Schuessler salt.
I did the questionnaire on anxious-introvert and answered as per before starting these 3 supplements: 1-7, 9,10,13,15,16,18-23 for total of 18. And now: 6-10,13,15,16,18,20-23 for total of 10.
I am telling people every day how I am feeling so much better…I have been off work on a burnout for over a year and had lost a whopping 25 lbs (too much for me) and on wonderful remedies/phytogens/gemmo and ever so slowly getting better. Slowly gaining 1 lb then another then losing, etc…and still quite fragile nervous system wise. But now…wow…have gained 3 lbs in 1 month ! So much calmer, I am so so pleased.I could go on and on ! I will be able to go back to work sooner than I thought possible. I have hope ! Yeah ! Ok I’ll stop now but you get the picture right ?
One more thing, do bouth of our parents have to have had Pyroluria or just one ?
Thanks,
Maria
What fabulous results! thanks for sharing! Both or one parent can have pyroluria
Hi Trudy –
My 22 year old daughter has ongoing acne, anxiety, fatigue,
cold feet and at times digestion issues. Not sure if it was Hormonal-so many doctors later, an integrative Doctor diagnosed her positive for Pyorlauria after testing in July 2015.
Urine pyrrole are 33.28
Lab results normal B12 and magnesium came back fine.
Low zinc – high copper
And very high % free copper – high copper/zinc ratio – 2.5.
ZINCPlasma 70
ZINC RBC 951 low
COPPER, S 179
D 18.8. Low
Alkaline Phosphate 26 low
Candida marker 1.3
SUPPLEMENTS her Dr. SUGGESTED & taking —
B6/P-S-P 275mg in AM ( During stressful times increase the B6)
ZINC PICCOLINATE – 30mg in PM with meals
SH also takes – Probiotic and D3
Her Dr suggested **Mineral 650 without copper (by Encapsulations) 3
capsules in AM together ( she hasn’t started this )
**Hasn’t done primrose oil
I would appreciate any guidance as a mom wanting my daughter to feel her and look her best.
Thank you sooooo much for your wonderful ongoing work in this field.
Hi Carrie
I’m glad you are working with an integrative doctor and suggest you continue to work with this doctor. I can’t provide specific advice here via the blog but can say the zinc and B6 is what I recommend. I like the plan to use a copper-free mineral (magnesium and manganese are important) but I typically recommend a copper-free multi too. I do use evening primrose oil to help with copper absorption.
The zinc can often help the acne.
With the fatigue, cold feet and digestion issues I’m sure the doctor will be checking her thyroid health.
Trudy –
Greatly appreciate your feedback.
So you would recommend manganese and magnesium along with a multi vitamin to be added to her protocol ? Trying to bring cooper down and zinc up.
Thyroid testing came back perfect…
Trying to connect the dots and your input is definitely helpful
Thanks again ,
Carrie
Trudy Scott Reply:
May 9th, 2016 at 2:18 pm
Hi Carrie
I’m glad you are working with an integrative doctor and suggest you continue to work with this doctor. I can’t provide specific advice here via the blog but can say the zinc and B6 is what I recommend. I like the plan to use a copper-free mineral (magnesium and manganese are important) but I typically recommend a copper-free multi too. I do use evening primrose oil to help with copper absorption.
The zinc can often help the acne.
With the fatigue, cold feet and digestion issues I’m sure the doctor will be checking her thyroid health.
[Reply]
– See more at: http-questionnaire-from-the-antianxiety-food-solution/#comment-12942
Thought-provoking article . I am thankful for the specifics ! Does someone know where I would be able to acquire a blank a form example to fill in ?
Micha
Feel free to print it and fill it in
Hi Trudy,
I have social anxiety and may of the symptoms listed above. My problem is there are no PKU tests done here so would it still be fine to test my B6 and Zinc levels separately instead to determine if I have low levels of them?
also I am taking b100 complex which includes b6 in 100mg. will that be enough or do I have to also take more B6 separately?
Thanks for taking your time to read
Have a wonderful day
Casey
There is no easy way to test zinc and vitamin B6. I have my clients start the pyroluria protocol and see their responses. 100mg of vitamin B6 is the starting dose and I would use separate 100mg supplement if more is needed.
Hello Trudy! I just had to write and tell you that your information about pyroluria was an ah hah moment for me!!!! I have suffered with so many of the symptoms on your list at one time or another some more consistently. Especially social anxiety and depression. I have self medicated with alcohol and sugar which probably only made everything worse for me.
I have been dealing with chronic acid reflux and more recently bladder issues and someone in a support group shared the integrative women’s health website which is where I found your information and read more about pyroluria. I haven’t started any zinc or b6 yet even though I really feel I fit the criteria but I’m having trouble with supplements worsening my bladder symptoms at the moment so am a little nervous. :-). BUT I am so excited to lean that possibly taking some supplements could help what I have perceived as a life long issue with anxiety and inner tension.
I do wonder though if the fact that my mother was schizophrenic would have any bearing on whether I might have pyroluria? And I apologize if this question has already been asked and answered.
Ps I also checked back through my blood tests over the last 12 years and ground that my alkaline phosphates have always been below 70 and mostly in the 40s and 50s.
Thank you so much for adding me to your Anxiety Summit for June!
Gillian, Do start the B6 and zinc as soon as you can. It will make all the difference in making your life good. It did absolute wonders for me!
Trudy, I have your wonderful book which enabled me to overcome severe panic/anxiety. I also suffered terribly from histamine issues/allergies and so much more. I am just so grateful to you for the information I learned from your book. One question, Do you find that addictions in general are a problem? I was never an alcoholic but I did ‘party’ in college. I see where I was more of a sugarholic as I look at my past eating patterns. So I am wondering if addictions in general but especially sugar addicts are desperate pyroluria suffering people. I see SO MANY people whose diets are horrible due to their high intake of sugar be it from grains/too much high sugar fruit/processed high sugar foods/juices and such. Thanks for all your wonderful information.
Alice
So pleased to hear this. Yes addictions are very common with all brain chemical imbalances and pyroluria. The drug of choice can be alcohol or sugar or a street drug or a prescription drug.
Hi there
I very much enjoyed reading your anxiety solution and it has helped add a few finishing touches to my pyroluria supplement regime, so thank you. I answer yes to most of the questions on the questionnaire. I have been supplementing with 50-100mg per day of Solgar’s zinc and 100-150mg of p5p by Swanson and 2mg o evening primrose oil with occasional manganese, B2 and magnesium supplement over the course of around 4 years and with each day I have noticed a little improvement from being a complete mess to functioning nearly normally (apart from 7 days before my period then my symptoms worsen). I have recently moved on to Zinc Picolinate by Swanson. I don’t feel sick taken the picolinate and I take from 44-66mg per day. I have noticed a return of my symptoms. I’m scared as hell – I’ve tasted normality and now I feel it’s being taken away from me and I don’t know what to do. I am hesitant to go back to Zinc by solgar, as it makes me feel so sick and I have noticed all the white flecks have stopped on my nails since taking the picolinate. I’m guessing either these picolinate supplements are not working or that I am detoxing copper at a faster rate, which is giving rise to the lapse. Please please, if there is anything you can suggest I do, I would be so grateful. I”m UK based.
p.s. thank you, I’ve re-read the book and re-read your website and found that you recommend Optizinc. I realised the lapse must have been due to the change in my zinc supplement. I discontinued zinc picolinate by Swanson whilst I waited for my optizinc. I am currently on day 2 of taking Optizinc and no inner tension, I’m speaking fluidly, the knotted feeling in my heart has gone and feel confident again. Thank you so much. I wonder if this swanson one has copper in it without them labelling as such. I haven’t felt that bad in a couple of years.
KT
Thanks for the update and glad to hear you are doing well again. And in just 2 days!
I’d love to hear if it did contain copper (this one doesn’t http://www.swansonvitamins.com/swanson-premium-zinc-picolinate-body-preferred-form-22-mg-60-caps) or if it was simply that you do better on optizinc than you do on picolinate.
Hi Trudy
Thank you for your response. Yes the Swanson one in the link was the one I ordered and it doesn’t appear to have copper on the label. I have had to stop with the Optizinc also, as the inner tension was returning on that too. First two days it seemed really good. So currently, I haven’t taken the Optizinc for a day and no inner tension. Do you think I should go back to my normal Solgar Zinc or persevere with the Optizinc? Could you shed light at all on why my symptoms are returning on more absorbable forms of zinc?
Kind regards
KT
My 12 year old daughter and I seem to have many of the symptoms. Would zinc and b6 be safe for her age?
Natalie
I use 120lbs as the adult cut-off and have great results with young girls on the pyroluria protocol
Hi Trudy,
I have a lot of the symptoms on the questionnaire 25/42. I have high alkaline phosphatase since I did heavy antibiotics for a few years. I haven’t been on antibiotics for 5 years but the alk. phos. stays high. Wondering if it’s bad to take zinc in this case?
Since I lost most of my taste 15 years ago when I had sinusitis (I was happy to learn that this could be helped with zinc), I figured I needed zinc even if my alk. phos. is high. I can still smell though. I have a lot of the low zinc symptoms.
I did start zinc 30mg (without copper) and B6 100mg about 1 week ago. Can these cause digestive issues such as sore stomach, heartburn, bloating etc? I don’t have nausea.
I feel more tired & worn out. Worse in general. A lot of vibrations in my body.
Thank you so much for what you do.
Nancy
Alk phos can be high for many reasons. If we were working together I’d have you do a zinc challenge and one new supplement a week to rule out which one may be contributing to digestive issues.
Dear Trudy,
We had just identified this lady as having elevated HPU as she realised she was pregnant. She also has a raging dysbiois (not unexpected).
We havent done anything other than give her B6 for the nausea and reduce her stress levels at the moment.
She has had some testing for the possibility of Downs syndrome and here are the results
Nuchal fold being thickened and bloods came back which now predict a 1 in 8 chance of having a baby with downs . We are awaiting exact hcg & Papp-a readings but obviously this lady is extremely concerned, which will affect her HPU levels.
In the first trimester i would be afraid to add in the Zinc for obvious reasons. As you have been dealing with Pyrroles for many years I wondered if you would mind me picking your brains here.
Many thanks in anticipation.
We had just identified this lady as she realised she was pregnant. She also has a raging dysbiois (not unexpected).
We havent done anything other than give her B6 for the nausea and reduce her stress levels.
She has had some testing for the possibility of Downs syndrome and here are the results (her words):
So as well as the nuchal fold being thickened my bloods came back which now put as at a 1 in 8 chance of having a baby with downs . I’m waiting for them to give me my exact hcg & Papp-a readings but obviously they must be showing low Papp-a & high hcg for us to get a high risk result like this
Even if our amnio at 15 wks confirms we’re not having a downs baby I’m going to worry about these blood readings for the rest of the pregnancy . If I can’t absorb nutrients properly then surely baby can’t either? Growth & heart etc looked fine on 12 week scan by the way.
My words:
In the first trimester i would be afraid to add in the Zinc for obvious reasons. As you have been dealing with Pyrroles for many years I wondered if you would mind me picking your brains here.
Many thanks in anticipation.
Anne
I’m afraid I have no experience with this and wish there was an easy answer.
I would suggest seeing if you can do a consult with one of the pyroluria labs (like Dr. Tapan Audhya at HDRI http://www.vitamindiagnostics.com/) or Dr William Walsh (http://www.walshinstitute.org/).
Based on the answer, her doctor may be willing to do additional testing and give the approval for the extra zinc and vitamin B6 later in the pregnancy, and continuing to monitor things.
Thank you Trudy,
I really appreciate your reply and will follow up on that. I will share what I uncover.
Best
Anne
Hi,
thanks for the info.
I did a fat index test and this is my results: (the GLA is pretty low i think?). do you think it’s may point to pyroluria? thanks.
Linoleic (LA) 18:2 ω6 11.39%
γ-linolenic (GLA) 18:3 ω6 0.03%
Dihomo-γ-linolenic (DGLA) 20:3 ω6 0.99%
Arachidonic (AA) 20:4 ω6 17.34%
Docosatetraenoic (DTA) 22:4 ω6 2.18%
Eicosadienoic 20:2 ω6 0.16%
Docosapentaenoic-n6 22:5n6 ω6 0.46%
Amir – it’s hard to know without ranges 🙂
Hi Trudy, I did have many of the low B6 and kow zinc signs. So I did start taking daily zinc, B6 and evening primrose oil, I didn’t really notice a difference at the time (I was going through a tough time though with bad reaction to antibiotics-trimethoprim, cystitis and other strange symptoms though). But strangely I noticed that my joints were clicking far more than ever- I had noisy hip joints in the mornings after starting the protocol! One day, after a few months, I decided to stop all my supplements (including a few others) and suddenly felt better, my joints went back to their previous amount of clicking, still there but less, and I started getting more dreams! The opposite of what was meant to happen! Very strange. It might not be the pyroluria protocol. I did later discover that I was reacting to a seaweed supplement, so it may have been stopping that that relieved some stress in my body. I have now been feeling much better these last few months I wonder if I should pluck up the courage to try the pyroluria protocol again. I just feel scared taking supplemts without having a test to check where I am deficient first.
I have heard there is a good test called Spectracell that can identify nutrient levels. Have you had experience with that one?
Interesting Claire and unusual. Why not do the test and see what happens. I don’t use Spectracell – just haven’t found it very useful
Trudy,
I have read that one can have nose bleeds if high amounts of omega-3’s are taken. I have in the past gotten nose bleeds when only taking a small dose for a few days. I was wondering if this could be because I have Pyroluria and didn’t need the extra omega 3’s. Do you think this is possible?
Thanks
Shane
Doing fatty acid testing would be the best way to know. I have not heard of any pyrolurics reporting nose-bleeds
Hello Trudy, I recently came across your site whilst reading through posts on the ‘Uncommon Knowledge’ forum.
Having looked through your questionnaire points I can identify with a large number of those ‘symptoms’ though some may not be as relevant now as they once were.
It would be fair to say that I am extremely hopeful that your supplement regime may be the answer for me as it seems to have been for many others.
I have also ordered your book yesterday and look forward to reading through it soon.
If I may ask you some questions though please.
Is this as much of an issue in males as well as females firstly?
Some of the brands you speak of are not available in the UK or at least I have been unable to source them so far.
I am still awaiting delivery of the EPO 1300mg supplement but have today received the following items (all from Phoenix Industries);-
Vitamin B6 100mg
Zinc Picolinate 15mg which contain Magnesium Stearate (anti adherent). Couldn’t find a single tablet 30mg dose.
Pure Inositol powder (raw series).
Unfortunately I have no digital scales that will measure the recommended dose by weight 500 – 1000mg daily.
Is there a volume equivalent in terms quantity that I can aim for or are scales absolutely necessary?
I do have a capsule filling platform and some 00 capsules if that would be suitable?
I have also bought a multi vitamin / mineral too which I was assured has no copper.
Its a UK retail outlet (Holland & Barrett) branded one a day product by the name of ‘Radiance’.
When should these be taken?
AM or PM?
All in one go with food?
I rarely ever feel like eating before 11 AM if I’m honest but will force myself if it is important.
My maternal grandfather struggled through most of his life with anxiety and or depression to my understanding. One of his sons has also suffered terribly too for most of his short life and did become alcohol dependant too.
My personal battle has been almost lifelong too if your symptom list is applied to me though the effects have become more severe over the years.
Maintaining relationships is very difficult, only platonic ones survive the test of my erratic moods and tempers to mention just the tip of the iceberg.
Anti depressants have always been the GP’s answer but they have never helped and some brands have exacerbated my struggle.
My doctor recently prescribed me Buspirone (Buspar) at a dose of 2.5mg twice daily though today he has increased the dose to 5mg twice daily as the effects have not been what we both hoped. Getting him to accept that anti anxiety are more appropriate for me was a huge struggle but I am not a pill popper and prefer natural medicine.
My fitness levels are now better than they have been for around 20 years and my weight is now pretty much bang on that advised in the UK too.
Your thoughts please?
Many thanks
Simon
I neglected to mention that a major part of me experiencing recurring difficulties is made possible, at least in part, by obsessive thinking.
There is no nasty or scary element to those thoughts, purely a never ending re running of things said and a kind of rehearsal of conversations that I feel the need to have in order to explain my behaviour.
For want of a better explanation, a conscience of unbelievable power I suppose. The conversations will almost certainly never happen but should they I would almost certainly ‘wing’ any response anyway.
These rumination have been relevant on and off for about 18 years now.
This aspect is my reason for purchasing the Inositol.
My order of liquid zinc arrived today too, it tastes awful!
Simon
Men have pyroluria too but once addressed relationships become easy and antidepressants are no longer needed. I can’t offer specific advice for you via the blog but once the book arrives you’ll have all that you need there.
I’m really not sure what you’re asking about the scales so can’t help there
Hi, would this test tell me anything helpful? It’s the only one available in my province. I can’t afford to pay for testing that isn’t covered. I know it’s aimed more at porphyria. If it would be helpful, how long should we be off of our supplements prior to the test? Thank you so much for the help. http://www.calgarylabservices.com/lab-services-guide/lab-tests/AlphabeticalListing/P/Porphyrin-Quantitative-Urine.htm
Heather
I’m not familiar with this lab but Genova has a porphyrins test that is used to assess the effects of heavy metals (amongst other things) but would not be helpful for pyroluria.
I have clients do the questionnaire and if high get on the nutrients and observe the response as pyroluria urine tests are often false negative anyway
Thank you. We scored high on the questionnaire and I have physical characteristics as well. I reserved your book at the library and am picking it up tomorrow so hopefully the extra detail will help us. I feel the supplements are helping me but my husband is on Effexor so it’s more complicated for him.
Hi Trudy,
The past 2 weeks I’ve tried sprinkling 3-5 mg of Designs for Health P-5-P on my breakfast and after a while felt better the first day! Before trying the P-5-P I did the liquid zinc challenge with a tiny bit and it didn’t taste – was like water and later that day felt better so I think I definitely need the zinc. With the P-5-P I had dream recall the 2nd night and have had it every night except one night. Should I stay at this very little core dose for a while and try adding the zinc soon?
I felt some depression later on in the day the past few days and wonder if it’s detox, lyme and/or co-infections or maybe since it’s a very small amount the B6 is out of my system? I’ve had nasal congestion, sneezing, itchy nose, eyes and ears, runny nose which I have had before trying the B6 but more so lately and wonder if my immune system is waking up a little with the B6? I believe I’ve had some histamine issues (started before starting the B6) and tried some sodium ascorbate vit. c before trying the B6 and I had more energy, skin on face less dry and better bowel movements but it seemed to cause the itchy, stuffy, runny nose and sneezing and when I stopped it, it got better. Have read if have problems with histamines vit. c that’s derived from fermentation (corn) can cause problems. I’m trying to find out what the source is from the sodium ascorbate I took. Could the reaction have been a detox reaction? I’ve had vit. c IV’s in the past and during the first one I had this reaction and blew my nose the whole time and also the back of my head was itching like crazy. My Dr. said I was detoxing but wonder if it was histamine problems. That only happened with the first vit. c IV and had several after that and didn’t have a problem. Do you know of any type of vit. c those with histamine issues can tolerate? I may try camu camu powder. If I do have histamine issues I hope the B6, zinc and hopefully vit. c, if I can find one I tolerate, will help.
So, so far I think I’m tolerating the P-5-P and hopefully will continue to – I’m so sensitive and it seems if I don’t tolerate anything I’ll get gut pain and constipation and thankfully haven’t had that. Have you had patients have such a small core dose at first – will I possibly need to increase it over time once my body gets used to it? Thanks for any help!
Michelle
Michelle
I commented on your question on the other blog (https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/) so hopefully you’re set
Trudy, I’ve heard that taking b6 and zinc at the same time is not a good idea and can make you very sick. Should these two be taken at different times of the day at least 10 hours apart? What is your experience?
Thanks!
Alan
I’m not aware of any such issue – if you can share a link with additional information I’d be happy to read it and comment
Wow, I’ve read up on several different sites about this after finding an article this morning. I basically match every item listed in major accept 2 and all of the less common accept maybe 1. Now I’m just worried my doctor won’t listen to me. I know for a fact that I’ve been protein deficient in the past because I’m not allowed to donate plasma again. Specifics they couldn’t say. I’m also always vitamin d deficient but this doesn’t mention that one.My aunt is too. I had to have my thyroid removed because of large nodules so I have hyperthyroidysm. I also have suffered unexplained ibsd issues for years and e en with treatment I only get minimal relief. I’ve never liked breakfast, always been very pale, white specks on nails, brutal hair but it’s not thin but I did start having a few grey early. Also the thing I’ve never ever seen in a diagnosis that I’ve looked for for years. That makes me feel this is it. My joints all hurt, are stuff and the biggest part ( my mind is blown it’s listed as a symptom, I’ve never found it before.) My joints all pop like crazy. I like the cereal, accept it not cute and not fun. I have tones of the other symptoms too like memory. Makes it horrible for studying. I definitely dont deal with any amount of stress. Imm like coral or a starfish, I start to blow up and get sick. I get stressed just thinking about test since I can’t memorize and out things in long term memory as easy.anyways any recomadations? How should I talk to my doctor so she doesn’t shrug it off as me just finding something on the internet?
Rebecca
Unless your doctor is nutritionally trained it’s very possible she will not be aware of pyroluria and you’ll need to educate her about it.
Based on what I’m reading here I’d also suggest looking into gluten and Hashimoto’s thyroiditis and finding someone to help you with figuring out if your IBS is due to SIBO https://www.everywomanover29.com/blog/sibo-small-intestinal-bacterial-overgrowth-questionnaire/
Thank you so much for the suggestion. I’ll have to mention tgese,to my doctor next time I see her. I’ve already met with an allergist and through the rast (skin prick) and 4 blood test I was not positive for wheat/gluten. However interestingly (sadly for me) corn did show up. When I see my regular doctor agin August these are all things I can remember to bring up. They normally have been good at at least looking into whatcsomething is if I bring it up. Again thanks much.
Rebecca
The skin prick test and other testing done by your allergist is not enough for most people – more here
https://www.everywomanover29.com/blog/gluten-anxiety-testing-conundrum/
Oh also recently I met with an allergist and while I don’t have a gluten sensitivy corn did show up. Along with onion and several other foods on a lower scale of we sensitive. My air born were off the chart. I read somewhere that corn is similar structured to gluten but I for sure was negative in testing for that. My T3 levels also laitly since they got mentioned a bit above have been difficult to stabilize? So I’m doing what they say (doctors) on ibs meds, including a round xxifaxan, and of course my meds for thyroid. All tgese things for sure are worsened with stress and its like ive been on a rovky slope going fast down hill and theyre only patching my tires. Sorry i love using metaphors. That’s my basics.
please see above
In the last year , but specifically in the last 6 months when I am socializing
I get very amped up and when I get home I’m very anxious and shaky inside and can not sleep , I’ve always been an extroverted person and enjoy both entertaining and being with friends but lately becouse of my reactions after I’m starting to dread it . This also happens if I’m FaceTimeing or talking on the phone . I have been trying to moderate my emotions by purposefully trying to not let my self get animated or excited but it’s not completely working , is this related to pyloria? I did identify with 19 of the symptoms . If so why is it just now manifesting? This is all so strange and distressing to me .
Kelly
I would look back and see if there has been anything stressful in the last 12 months as stress can trigger pyroluria symptoms
Yes I have moved to a new countryAnd am trying to learn a new language as it is a non English speaking. And thinking about it , really the last year and a half has been a lot of changes , my two oldest moved out of home and got married and then we made this big change . I never associated those things though with how I feel now. Is it just one of those things that will take time? I really dislike how I feel
Kelly
Those type of life stressors can trigger pyroluria and it’s then that people with pyroluria start the protocol and start to feel better
Hi,
I have low zinc but every time I take supplements I get infected in the lower abdomen area. I also develop intense testicle pain on supplements…
I don’t seem to tolerate supplements. B12 supplements.., same thing… What gives?
Is there any way to take in more zinc without supplements? I do have food sensitivities.
Thanks
Ken
Ken
I’m sorry to hear this. Good sources of zinc are grass-fed red meat and oysters. I suggest working with an integrative practitioner to figure out your sensitivities and nutritional deficiencies.
Geo Espinosa, N.D., L.Ac, C.N.S., RH (AHG) is a renowned naturopathic and functional medicine doctor recognized as an authority in urology and men’s health. He’s the author of a really good book for men “Thrive Don’t Only Survive: Dr.Geo’s Guide to Living Your Best Life Before & After Prostate Cancer”
Hi,
Thanks… I will definitely do that. It seems that especially dairy and wheat aren’t for me.
Best regards
hello, I have just been diagnosed with Pyrolless my result was 0.11
how much B6
P-5-P
Zinc
do I start on , does anyone know please, I am from the UK but there is not alot of information out there
thank you
Poppies
I would suggest discussing this with your practitioner. I have my clients start on 30 mg zinc, 100mg vitamin B6 and 1300mg evening primrose oil, together with a copper-free multi. My book “The Antianxiety Food Solution” has a whole chapter on pyroluria.
Hi there,
I have pyroluria and my daughter has been recently diagnosed although i would say asymptomatic apart from stitches while running. Would you perhaps think these stiches will be relieved if she takes her prescribed primer? She otherwise won’t taje it
Hi Trudy,
Thank you for your wonderful work! I thought my daughter had Lyme-Bartonella as she is very symptomatic but was so happy to hear you talk about Pyroluria with similar stretch marks! She was negative to the Bartonella test, but I’m absolutely sure she has pyroluria (and myself) with your assessment test. My only question is can you recommend a good multi-vitamin. I am taking GlucoBalance by Biotics Research formulated by Dr.Jonathon Wright and I thought it was perfect–but it has 2 mg copper. Any suggestions appreciated and many thnks for your incredible work and generosity in sharing:)
Hi Trudy, I was wondering if you could help me. I believe I have pyroluria, I always feel very tense inside and I can’t handle anything. I mean everything is stress for me. I tried zinc citrate 30mg and b6 5-phosphate plus the Primrose oil and I felt better with less anxiety and then I was back to feeling a lot of anxiety and tense inside. I stopped the supplements because I wasn’t sure what to do, or if I was doing something wrong. I was wondering if you could help me understand why I was feeling better for the first 3 days and back again to feeling a lot of anxiety.
Thank you for trying to help people that are struggling each day of their lives.
Trudy! Holistic GP you could recommend in Miami, FL? I’m starting zinc and b6 now.
Thank you for your work.
I’m afraid not
Hey, I came up with another question – any guidelines for when to take the zinc and b6 in context of the day and in context of food.
Thanks and Cheers!
Charlton
I have my clients take with meals at B and L. I highly recommend reading my book “The Antianxiety Food Solution” so you have a good handle on pyroluria. It has a whole chapter on the topic
I asked this question somewhere on this website but can’t find it. I bought you book. Did pyroluria quiz? I was positive. Bought your recommended solaray optizinc. Tried for 2 weeks but it burns my stomach. Have gastritis, duodenitis, hiatial hernia,hashimoto, systemic mastocytosis. I do take zinc carnosine. Should I take optizinc with zinc carnosine? Are there some people that either have enough zinc so it burns, burns because of conditions already have or just can’t be taken by some people?
Cheryl
Cheryl
I have not heard this feedback and have my clients stop immediately if a supplement causes an adverse effects.
Hello Trudy,i’d like to ask you about pyrolouria in kids!I am a 40 y.o. male that recently found out that i am a pyrolouric and i have already started supplementing with zinc,B6 and evening primrose oil.What are the recommended dosages by you for my 6 y.o son..?Thank you in advance..Kind regards Nikos
Nikos
I use weight for kids amounts with 120lbs being the adult weight and use half doses for 60lbs
Trudy,
Thank you for replying.
Cheryl
I’m curious as to why you labeled this a social anxiety disorder? If low levels of zinc and B6 causes the symptoms listed, than why isn’t it just referred to as a vitimin deficiency?
Mechi
I have not labeled this – this is based on the work and research of Carl Pfeiffer https://www.everywomanover29.com/blog/pyroluria-mauve-pyrrole-malvaria-kryptopyrroles-social-anxiety/
It’s not well recognized in the medical community so saying it’s a nutrient deficiency works too
thank you for your work, trudy. i plan to order the supplements you recommend. yo listed several B6. Is that just to provide options or are some better suited for certain issues? Im considering supplementing for my daughter as well, who is 11. would you recommend the same supplements or are their other dosages for children?
also, would you recommend all products from this site? I’m looking for CBD oil and a good chewable probiotic for my children. There are a couple listed on this site.
thank you in advance…..
Laura
Laura
I use half an adult dose for an 11 year old. I actually use a variety of products from different companies but do like the DFH probiotics – they have a powder (I’m not aware of any chewable).
Hello Trudy, I am experiencing most of the above mentioned symptoms. I am going to take zinc and B6. Do I have to take it for rest of my life to reduce pyroluria?
Also, please suggest me when and how to take them for better results.
Many thanks in advance.
My name is Grace and I am 25 years old. I am new to your website and am drawn to your compassionate and dedicated human nature, made evident by your thoughtful comments to readers. I had a few questions, if you wouldn’t mind taking some time to assess my conditions and concerns.
I have suffered from depression/anxiety (social), brain fog, poor word recall, difficulty articulating my thoughts, slow processing, etc for years. I have had times of reprieve on Prozac and after a good amount of neurofeedback sessions, but the symptoms always find their way back. At this point, I don’t know if these symptoms are normal and are inherent to my being. I have had periods of feeling good and confident, which are the only reference points I have for knowing, deep down, that the way that I feel now is not okay. I have been working with a naturopath and she has put me on a number of different supplements. I am currently taking Garden of Life’s Mood probiotic, vitamin D3, an adrenal tonic, Deproloft HF, Methylguard, fish oil, and Cognifactors. We have made an educated guess that I have MTHFR considering my blood work of high homocysteine (13) and normal levels of B12 and folic acid. I also have some inflammation in my system (tested positive for the Scleroderma antibody) and have low levels of progesterone. I have been working with her for just over a month, and my symptoms have been so inconsistent. I am in law school at the moment, and am seriously considering dropping out. I cannot keep pushing forward.
I know I gave you a very general over-view of what’s going on, but any insight would be greatly appreciated. I don’t think I have pyroluria (only had 5-7 symptoms listed in the questionnaire) but I started the pyroluria protocol. I am taking ionic zinc (which 2 mgs of copper and 50 mgs of zinc sulfate, among other nutrients). I think I am in category 3. Thank you so much for your time and consideration.
Grace
I can’t give you specific advice unless you’re a client but if we were working together I’d have you do the amino acid questionnaire, review the precautions and do a trial of the respective amino acids – one at a time. You can read more here https://www.everywomanover29.com/blog/anxiety-amino-acids-overview/. I also have everyone read my book “The Antianxiety Food Solution” which outlines my 9 -step approach.
You don’t mention diet but this is equally relevant – real whole food, animal protein at breakfast (for blood sugar control), no gluten (very important with any autoimmunity – in factor the AIP diet would be key), no caffeine and addressing gut health.
Also be aware that some of the combo products you mention can potentially make things worse. For example I like to use tyrosine after we’ve calmed things down and too much methylfolate can make you more anxious (https://www.everywomanover29.com/blog/anxiety-summit-methylfolate-anxiety/)
Thank you, Trudy. Are you taking clients? I am on the Whole 30 – eat eggs every morning, do not consume gluten nor do I consume caffeine.
Hi Trudy,
I hope you are well. It has been confirmed that I the MTHFR gene defect, I also seem to have pyroluria (scored high on the questionnaire after having thought deeply about the symptoms and their application to my life and scored in the second category on zinc challenge), low T3 syndrome (low TSH, low T3, normal T4, and normal rT3), and low blood sugar. I am on a treatment protocol that includes a B complex, adrenal support, Crave Arrest (for mood), fish oil (one with a higher EPA concentration and on with a higher DHA concentration, Dr. K’s Neurofeedback Flam, evening primrose oil (1000 mg), zinc (60 mg), B6 (200 mg). I’ve been on the protocol for 5 days and am already noticing a difference in my sociability and mood. The weird thing is that I have greater general anxiety and am unable to pinpoint the cause. My social anxiety, while it still exists is not as inhibiting and has largely decreased, I thought it could maybe be attributed to the methylation, but am wondering if it could have anything to do with copper dumping. I started on 60 mg of copper right away. Oh and my dream recall has improved and I’ve noticed that my dreams are very pleasant. What do you think? Thank you!
Grace
So pleased to hear the sociability and mood has improved so quickly! Wonderful! My first thought is that the tyrosine in the Crave Arrest is causing the greater general anxiety. It’s for this reason I like to use individual amino acids and save tyrosine for last (except the GABA calm which only has 25mg tyrosine). You may also want to check the adrenal support product, too much folate and Neurofeedback Flam (which I can’t find online so can’t comment on)
I think you mean you started 60mg zinc right away (and not copper).
Oh, yes, 60 mg of zinc. Here is the link to neuro** flam: https://www.apexenergetics.com/neuroflam. The adrenal support consists of 150 mg of rhodiola and 100 mg of ginseng – I take two tablets a days. Do you think I should continue on the protocol for a couple weeks to see if the anxiety subsides? Thank you for the prompt response!
Grace
I cannot consult and give you specifics via the blog. I don’t have clients push through and wait for anxiety to subside if it’s a new thing – we rather remove suspect nutrients and add things back one at a time. Tyrosine and folate are top culprits for worsening anxiety, ginseng and rhodiola can be too stimulating too, zinc less so.
There is a waiting list for one on one consults https://www.everywomanover29.com/services.html (we hope to be expanding the virtual consulting in the very near future)
And one last question! Do you think I should drop my zinc dosage to 30 mg?
Hi Trudy,
I suspect that I have Pyroluria and about a year ago I started taking B6 and zinc along with a b complex. At the time I was withdrawing from Paxil and these supplements helped my mood as well and I highly contribute them to getting off the drug successfully. (I was put on a low dose of Paxil 8 years ago for social anxiety, not depression). I’ve been completely Paxil free for 3 months now and managing the anxiety quite well. However, over the course of the year I have developed neuropathy-like symptoms in my legs and feet. I’ve been dealing with sciatica from a running injury but this is different. It feels like I’m having small vibrations in both my legs and feet and just an overall weakness in both my legs. I can’t stand for too long. I was wondering if I could have a b6 overdose since I’ve heard that too much can cause nerve damage. I currently take 230mg in all my supplements combined. I am normally very sensitive to supplements and usually take the lowest dose possible. I would appreciate your input.
Thank you,
Andrea
Andrea
Glad to hear you’re doing well anxiety-wise. I would suspect the B6 and stop it immediately and observe symptoms, adding back less if social anxiety increases again. I find some people do better on P5P and some on a combination
I have practically all of these symptoms on this list. Crazy!
I have been trying to find a cure for my anxiety and sleeping problems for years. I already take 30mg of zinc a day and a B complex plus from pure encapulations. It only has 16.7mg of vitamin b6 in it though. Is it ok to just start taking a 100mg vitamin b6 daily? Also the zinc I take has 2mg of copper in it. Is it better to take one without copper in it?
Janine
I start my pyroluria clients on 100mg vitamin B6 and recommend no copper in zinc or multi
I understand. Thank you, Trudy!
Hi, Trudy!
I recently learned about pyroluria after reading William Walsh’s book, “Nutrient Therapy…” in an effort to help my son (diagnosed ADHD, but also has mood swings, anger, & sometimes self-loathing — doctors are quick to prescribe stimulants, but I’m looking deeper). We consulted a doctor with extensive knowledge of this approach & will be getting some lab tests done for him that will guide his supplement protocol. He’s only 6, & it’s so challenging. Not only does our son suffer greatly, but it’s disrupting our whole family (we have 2 other kids as well). I’m really praying that this is the answer for him, as so many other things we’ve tried haven’t been successful.
Anyway, in learning what I’ve learned regarding pyroluria, I now highly suspect that I have it! I’ve had many of the symptoms in your checklist for as long as I can remember, with worsening symptoms in recent years that I chalked up to child-bearing/rearing, working nights, getting older, & a high level of stress related to my family situation. I also know that I have MTHFR mutation (homozygous C677T), borderline/sluggish thyroid & a large thyroid nodule, low blood folate (but high b12, which I found odd), & started to suspect adrenal fatigue & possibly iodine deficiency. I’ve been trying to address my issues with better nutrition & a few key supplements, with minimal success. Granted, I just recently began a concerted effort, but was hoping a definite difference would be noticeable within a few weeks & that hasn’t happened. If I could afford to do the testing we’re doing on our son on myself I would, but I can’t so it has to be trial & error. The fatigue/low motivation has been the most debilitating, however I also find that I score high on your introvert checklist, as well as a few of the neurotransmitter checklists as well.
I’ve been gluten-free for about 14 years already (I believe I have Celiac disease as my son has the genes & symptoms, but I eliminated it based on self-testing/symptoms, I have never been “offically” tested). I cut out caffeine completely for about a month & felt that I actually had more energy, but then couldn’t sustain that while working night shift (which for now is something I can’t change, though I realize the adverse effect on circadian rhythms & cortisol, among other things), so I’m back to a cup of coffee on each of those 3 nights per week.
I know you can’t give specific supplement advice, but my question is, if one has symptoms from multiple areas like I do, which should you target first? Obviously it’s unwise to start too many supplements at the same time, not to mention that after adding supplement after supplement I can easily imagine I’ll end up with 20 pills a day! If I address the pyroluria using your protocol, is it possible the symptoms from the neurotransmitter checklists will decrease? Are there any targeted lab tests you would recommend to help me prioritize where to start?
I appreciate any feedback you can give me. Congrats on your move to Australia, I hear it’s a beautiful country!
Thanks,
Kelly
Kelly
I always start with the amino acids and pyroluria protocol so my clients gets results and relief from day 1 – while having my client make diet changes like eating for blood sugar control, quality protein at breakfast, organic, no sugar and no caffeine and for gluten-free folks watching the nut-flours (high copper effects). With nightshift work and low energy/low motivation I think adrenal support and low catecholamines and would use tyrosine instead of coffee (it’s also nourishment for the thyroid). And making sure sleep is sufficient/deep (the tryptophan and GABA would help here). Of course with fatigue I’d also always look at the thyroid and anemia.
Apologies for the delay in my response – this one somehow got missed during my move to Australia – we are loving it and it is a beautiful country!
Hi,
I read once that evening primrose oil can increase histamine in the body, for someone who have both pyroluria and high histamine, do you recommend supplementing with evening primrose oil?
Thank you,
Abe
I have not heard that and not had an issue with EPO when someone has high histamine. Best would be to do a fatty acid test to confirm if you have concerns. If you have a link to the article I’d like to read it
One such misconception of anxiety is in relation to its origin or cause.
Another misconception about panic attacks is the threat that its symptoms are physically harmful to the person.
Imran
You are correct – there are many possible causes – I list over 60 here https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
I would have to disagree with you on the second point about the “misconception about panic attacks is the threat that its symptoms are physically harmful to the person.” They are very harmful – there is much research linking anxiety and panic attacks to heart disease and stroke.
Hello Trudy!
I’m not sure I have pyroluria, but I am almost positive I have a b6 deficiency and a zinc/copper imbalance. What tests should I get done to accurately evaluate zinc, copper and b6.
Does the organic acids test by Great Plains accurately test b6?
Hi Lia
I use the questionnaire and response to supplements as the best tool. I also use the zinc challenge (for zinc) and alk phos < 70 (also for zinc) and dream recall for B6. The urine test for pyroluria is not always positive so be aware of this if you decide to do it. Serum B6 and zinc are not accurate. Go back to the pyroluria chapter in my book "The Antianxiety Food Solution" for some info on OAT tests too.
Can I use these dosages for my 8 year old daugher?
Tanja
I use weight as a guide – 120lbs being adult weight and full dose and halving it for 60lbs etc. I find liquids work well with kids and have some listed here https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Just to add to many comments regarding all of the B
vitamins. The human body does NOT store any of the B vitamins, nor does it store vitamin c. The B vitamins are all water-soluble, meaning they are excreted in your urine and not stored in your body. So you can’t overdue those mentioned above.
Now vitamins A, D, E, and K are fat-soluble, meaning they ARE stored in the human body… so toxicity is possible if you are taking TOO MUCH of the supplement(s) for your own body’s particular requirement. The same goes for a depletion margin could be there if you are not taking enough of the fat-soluble vitamins. The best way for nutrition is NOT supplements, but instead, it is as simple as retraining your taste buds to enjoy that which is natural and healthy… variety is the spice of life. You’d be surprised at how you’ll crave healthful fruits and vegetables, whole wheat bread, full fat cottage cheese… yes fat does not make you fat. It is calories. the correct mg range for your body. This is something best approved by a physician because of the delicate balance required.
It is almost yin for yang… potassium for sodium, magnesium for zinc and also selenium. You have to be very diligent when it comes to ‘listening’ to advice, opinions, and conjecture… especially when it comes your health and/or your families/friends.
I admire those who utilize their resources. So be bold and make the best decision for you. :0)
Gwen
Too high doses of some of the B vitamins can actually cause issues. For example too much B6 can cause peripheral neuropathy (which reverse when the B6 is stopped), too much methylfolate can make some folks more anxious (also reverses when methylfolate is stopped – I cover this in my interview with Dr. Ben Lynch https://www.everywomanover29.com/blog/anxiety-summit-methylfolate-anxiety/)
Hello Trudy,
SO glad, i found your blog. It seems like lots of experience put together on one page, such a great service to humanity. I am a biochemist professionally, have worked in the area of Nutrition and cancer. I have my own story to share, hopefully I can get some help. I agree with you on testing unreliability especially light sensitive testing.
I am positive on 26 points in questioner, I have 3 sisters, youngest looks like me and has some sort of getting along well issues in society, she stays at home most of the time.
I don’t have specifically depression, but I am going through a tons of health issues which flared up last year in January and since then I barely can leave my home, My main issue is being cold all the time and getting really sick ( migraine, nausea). the moment i am exposed to cold weather. I used to be a sharp minded person with exceptional memory, but now since last year, I can’t recall simple things. however, Reading your blog about pyroluria, I can easily relate I avoid picking up phone, going to social events etc, although I have presented scientific papers in international meetings without getting nervous.
In last year, lots of testing has been done- I was borderline in low side of Zinc, my ferritin was going down, and my TSH creeped up this year, it was ok last year, now why i doubt my Vit b6 is low, because first I am so cold all the time, and plus I am not tolerating any protein food. I, My Mom and one sister has this problem of catching cold with little exertion and also, we all got grey hair by the age of 30 (100%).
Also, I would like to add, liver enzymes ALT/AST are on extreme lower side, I know clinically Drs only look for elevated side to see liver damage, but after all these enzyme has some role to do, in this case, they are important in amino acid metabolism, i have low GGT too, surprisingly, when I researched more, I found out all 3 when low, are linked with Vit b6 deficiency,
You might check and would want that too to the list, I found out a couple of people with pyroluria on some other forum also, had low of these although they dint mention it, I just looked at their chart.
I am already on Zinc and iron supplementation. My main concern is i have low bp, 90/57 (norma)l and when I get dizzy spells, it goes down, I have heard Vit B6 lowers the BP, do you have any experience in this regard?
I have constant heavy pulse beating/throbbing/twitching all over body, which tends to increase with some food, I have been diagnosed with leaky gut and high histamine, so I don’t know If vitamin B6 would help. I am taking glutamine which seems to help.
I would love to hear from you.
Thanks again
Inom
Inom
I have not had issues with vitamin B6 affecting blood pressure but would start low. With good amounts of B6 and zinc leaving the house shouldn’t be an issue. Vitamin B6 also helps with nausea and good zinc allows you to enjoy animal protein again. With the cold and low blood pressure I’d look into adrenal health and thyroid health.
Keep a food mood log and monitor “heavy pulse beating/throbbing/twitching all over body” so you can remove problematic foods. I’d consider IgG testing too.
And yes thanks for the tip about adding those additional markers to the pyroluria questionnaire – great idea!
Hi Trudy,
I suffer from Social Anxiety. Please can you take a moment to read my story and if you can, offer a couple of pounds.
Thank you for all of your support. I want to recover and your support will help me to support the people around me.
My story is on the link below and you can donate to help me and I have also pasted it beneath the link for readers.
thank you for taking the time to listen to me.
https://www.justgiving.com/crowdfunding/anna-shy
Hi, I want to reclaim my life. I want to reconnect with my friends and family. I want to connect with my loved ones and enjoy their company. For me love and connection are the most important things in my life and without that sense of authentic connection I don’t see any other point in being here on planet earth.
I want to serve everyone and and anyone. I believe that I have the ability to do this but I am looking for some support. I believe I was put here to help others and I am looking for your help, in order for me to make the progress required to help my community and world.
I have suffered from social anxiety since I was around 11 years of age. I wonder if you have or anyone you know have ever been diagnosed with this condition and if so, would you be willing to help a fellow shy gal? Over the last 15 months I have been out of work. I am very keen to work with an amazing naturopathic doctor in Glasgow. I imagine the total costs will be around £400.
I understand that this may seem a little cheeky, but I have no alternatives really. I also know that your good karma would go a long way by helping a hopeful stranger.
Thank you for taking the time to read my story. I will keep you posted in relation to my journey that lies ahead. Wish me luck!
ps. my name is under an ‘alter ego’ but I promise when I am better to give each and every one of you the recognition you deserve for supporting me.
Thank you so much.
Anna
Thanks for reaching out. I’m sorry to hear about your social anxiety but unfortunately I won’t be contributing to your fundraiser. I’ve found that my clients do better working with me when they are financially committed. Plus you’ll need money for food and supplements too.
Until you are in a better financial position my blog is a wealth of information so I encourage you to get reading 🙂 Sign up for my newsletter and tune in to the no-cost webinars and summits I share. This tapping/EFT summit is coming up and you can listen to a preview video right away here https://rd117.isrefer.com/go/TWS-ENO-VS1/trudyscottcn
If you can get $20 together then I encourage you to get a copy of my book “The Antianxiety Food Solution” or at least get a copy from the library and start with the basics. Once you’ve make food changes and are able to work again, you’ll have money to purchase some supplements if the food changes aren’t enough. If the social anxiety is due to pyroluria then supplements will be necessary and your money will be better spent on this.
I hear from people all the time who have used my book and talks to completely transform their lives and I know you can do it too! I wish you all the best!
Hi Trudy.
I think I have Pyroluria, I have suffered from social anxiety since I was around 11/12.
I don’t have any money – I am on government benefits as a result of lack of confidence to work.
I am not confident about self-diagnosing and supplementing. I have bought vitamin b6 and zinc but I wasn’t sure what type to buy. They are in tablet form as opposed to capsule and I don’t think the b6 is active. Will this lead to malabsorption? What makes are best to buy?
I purchased a copy of your book. I wonder is it ok to start with 25mg of zinc and 100mg of b6 per day? (Both in tablet form). I also bought evening primrose oil.
I really feel like the symptoms you described is what I have but unfortunately I am not in the financial position to receive the professional help that would benefit me.
I look forward to hearing from you.
Warm wishes and thanks again,
Emma
Emma
You’ve made a great start by buying the book. I’d like to encourage you by saying many people use the book and follow the recommendations on their own and see much success. One of the big reasons why I wrote it is for people who don’t have the financial means to see a health professional or can’t find someone in their area.
A few others things to consider with the lack of confidence:
– I find that starting with the food changes is often easier
– often just trying one thing at a time (food change or nutrient addition) feels more manageable
– keeping a detailed food mood log helps with seeing the results
– know that the pyroluria protocol will help with lack of confidence as they are raw materials for making serotonin
– lack of confidence is classic low serotonin and once this is addressed (with tryptophan) confidence is boosted
Dear Trudy,
I think I may suffer from pyroluria however its party to several other issues apparent.
Do you think there may be a connection between oxalate and pyroluria connected by b6 difiency (cause and effect)?
https://goo.gl/images/JJgRJq (beyond MTHFR oxalates). Where in absence of b6 glycine and glyoxalate are converted to oxalates.
Also if so do you think that pyroluria pehalps in conjunction with oxalates could cause osteoporosis?
Could low b6, elevated copper and low zinc cause severe bone loss in a premenopausal subject?
Christine
Low vitamin B6 is a factor in pyroluria and can contribute to oxalate issues. Low vitamin B6 can also be a factor in osteoporosis together with other low B vitamins (https://www.ncbi.nlm.nih.gov/pubmed/25335377) and zinc.
This is an excellent article on Beyond MTHFR http://www.beyondmthfr.com/side-high-oxalates-problems-sulfate-b6-gut-methylation/ – thanks for sharing
Dear Trudy,
I want to thank you very much for raising public awareness of pyroluria, and I wondered if I could ask some questions about it.
I am a 26 year-old male, and have been taking about 50mg zinc and 25mg P5P since about Jan 1st. I also added in EPO under a week ago. The following problems I used to have are FIXED:
1 – Perfectionism with high inner tension
2 – TMJ (the jaw pain thing)
3 – Headache-prone with bad headaches from mild tiredness
4 – Angular chelitis – touch wood. I got it bad when I first started the supplements, then it vanished. I used to get it periodically.
Additionally, my anxiety is not fixed but improved.
OK, some questions:
1 – I tried adding in a magnesium supplement (two forms tried), but it gave me headaches, brought back my TMJ and gave me insomnia. I also tried adding in a multivitamin/mineral (with low magnesium, also it has just a little copper) and it gave me insomnia. What gives? Are my minerals totally out of whack?
2 – I have a bunch of symptoms all of which seem to be related to male sexual health/sex hormones etc. These include frequent urination, having a real baby face and lack of bodily hair, lots of belly/hip fat with skinny arms, inability to gain any muscle mass through working out (I have tried pretty hard), and facial blushing/flushing very easily, sometimes with no apparent cause at all. This stuff has not improved. Any clues what might be going on?
Thanks again Trudy.
Fred
Thanks for sharing your great results – I’m happy for you
I’m not sure about the magnesium – maybe a filler? The copper in the multi may be too much
Re the male sexual health/sex hormones question/symptoms I’d suggest working with a ND or functional medicine doctor and get your sex hormones tested. Make sure to get free testosterone and all the estrogens, plus PSA.
Dear Trudy,
I have a 3 year old with slow language development and just found out he has low thyroid. Also, on Organic Acid Test found out he is very low B6 and Biotin. He is a sweet, affectionate boy but can be very rigid and doesn’t like strangers approaching him. He and his father are also EXTREMELY sensitive to light. My son also is borderline anemic. I am suspecting Pyroluria in my son, and I am pregnant again with another boy.
I believe I also have Pyroluria myself. Since taking my whole food prenatal, with 500% of the daily recommended B6, I feel much better. I suspect I have copper toxicity, am prone to panic attacks and was on Zoloft for 8 years in my teens and early 20s.
My son is getting B6 in his multivitamin. Should I give him extra? His multi also has very low zinc, so with the social anxiety and light sensitivity, I believe he is low zinc. How much should I give a 30 lb child? 15mg Zinc Picolinate?
We are addressing his iron with 10mg elemental iron a day, and will be getting Lugols Iodine drops to hopefully address the thyroid issue (With the help of his naturopathic dr).
He is also gluten free.
Do you think I am on the right track with my son? I just want his language to blossom and I want him to feel comfortable around people, as I know the feeling when it’s uncomfortable.
Also, should I be taking a little extra zinc being that I’m pregnant and my prenatal only has 30%?
Thanks so much.
Abbie
For pyroluria I recommend over and above what is found in a multi for both zinc and vitamin B6. I use 120lbs as the adult cut off and halve the dose for 60lbs so would use 1/4 the dose to start for a 30lb child. I’d also look at adrenal issues (often seen with thyroid issues + light sensitivities) and the gut (dysbiosis and leaky gut) and other possible nutritional and fatty acid deficiencies.
Do you have any successful treatment experience with people that have Borderline Personality disorder?
I have an 9 year old daughter that is presenting with possible pyroluria, she has dyslexia, some signs of Aspergers mostly mood, sensory issues and social anxieties. Most of it is still minor since we homeschool.
I have had her on b6 zinc and B12. Will start EPO soon and was wondering how much tryptophan I can give her. She comes in every single night and sleeps on our floor because of anxiety. 500 mg before bed did not seem to do it. Can I give her 1000 mg? Thanks so much. I am reading your book and its great.
Hi Trudy,
For the vitamin b6, you say the doses depend on dream recall? I have been suffering from nightmares for 20+ years (I can usually recall them). There seems to be no rhyme or reason to the nightmares (no history of trauma, no abuse, nothing like that). So would you say that the nightmares may be a deficiency in b6? And how would I go about dosing?
Thank you so much!
Tina
Low B6 can cause poor dream recall OR nightmares/weird dreams. I typically start with 100mg vitamin B6 and go up from there
hi Trudy, wow good info. I have nearly all those symptoms, I do recall dreams but have nightmares a lot of the time too. I take multi and occasion zinc and other supps. I must get my copper tested, is there a way to tell if we are high in copper?
thanks
bec
Bec
Serum copper and ceruloplasmin can be tested; hair testing is another option.
Ok cool thanks
Hello Trudy! It’s crazy to see that after 6 years, engagement in the comments of this post are still going strong!
I today just learned of Pyroluria. Thought, “Huh, never heard of that one,” and then did more research. I’m having an “oh crap!” moment right now, because if this really is indeed a *thing* it could have huge implications in the medical community. So many of the side-effects from this deficiency have huge markets in the pharmaceutical world. And because those medications don’t treat the root cause, they could start a cascade of other side-effects & need for medications.
One thing I am especially interested by is the potential connection between the side-effects of Pyroluria with the traits of a “Highly Sensitive Person” (HSP). Have you ever come across that term? It is also sometimes referred to as “Sensory Processing Sensitivity” (SPS). Many of the emotional and physical sensitivity aspects of Pyroluria’s side-effects share similarities with HSP/SPS. I’d like to know your thoughts on this.
I’ve been a hypochondriac in the past (fortunately, not so prominently anymore) so I am hesitant to dub myself “Pyroluric” but I really believe Knowledge Is Power, so I will keep these side effects in mind and pay close attention to them. I’m just not sure how to approach a physician with the intent of finding out if I really do have this deficiency.
It is also possible people with other psychological disorders could really just be deficient in Z/B6. Bipolar Disorder, BPD, ADHD… they all share symptoms of Pyro’s side-effects. Do you have thoughts on this as well? I know you’re hesitant to make medical claims, I’m just really interested to hear if you’ve considered this before.
Anyway, this article has definitely given me some sense of clarity. I guess a simple & safe action-step for me is to look into a low-dose Z/B6 supplement and see if that improves any aspect of these side-effects I experience. I really thank you for your time writing this and responding to commenters over the years. Looking forward to reading your response if you are brave enough to attack this “wall of text” 😉 Take care, and may you be successful in all you do!
Hi
This blog talks about prevalence of other conditions and related symptoms http://www.everywomanover29.com/blog/pyroluria-prevalence-associated-conditions/
As you can see “Highly Sensitive Person” (HSP)/ “Sensory Processing Sensitivity” (SPS) is not on the list (but some of the others are). I’d love to hear which pyroluria symptoms overlap? And then I can start to gather information from my community and possibly add it if it’s common.
My approach for pyroluria is questionnaire, supplement and monitor response to supplements. Urine testing is an option but may yield false negative.
I’m brave enough to “attack” all the feedback and questions as I get the pleasure of learning too!
Hi Trudy, I took your little quiz and this is definitely something I believe I have and will get tested for. However I wonder how I should supplement because I am an over methylater and can’t tolerate b vitamins right now. What do you do in these cases?
Emily
Keep in mind that pyroluria urine testing can be false negative. Vitamin B6 is typically tolerated if someone has pyroluria
Hi Trudy, I took your quiz and I can identify with most of the symptoms you had mentioned. I recently just had a blood test for zinc and B6 levels and my zinc level came back normal , however, my b6 level is very high. I was wondering what your thoughts are on this. Not really sure what to make of this or if I should even still supplement. Please advise.
Shawn
I reply on the questionnaire and response to supplements. Blood work of these markers are not very accurate
Hi Trudy,
In your experience with your clients. Does gluten sensitivity disappear when pyroluria is treated with zinc and vitamin B6?
Abe
Typically not
Hi, about a month ago I bought all the supplements you recommended for treating pyroluria. I haven’t been tested for it, and I had never heard of pyroluria until recently. Nor have I read your book.
I had to stop taking everything now because the EPO is causing my period to be late. I researched this, it looks fairly common, and it was said that menstruation would return once eliminating the EPO. This is exactly what happened. And then I promptly felt suicidal as well. (I have psychological problems in general that worsen with the cycle of hormones. Which was my reason for taking all these things in the first place. I didn’t feel suicidal while taking all the supplements.)
I’m just wondering if you know anything about EPO delaying menstruation?
I stopped taking everything because the EPO is important for absorption. What is the point of taking the other things if I’m not going to absorb it, you know?
I also searched through every comment here to see if anyone here asked about my problem, as to not needlessly waste your time. Thank you
Valen
I’m sorry to hear this – this is very concerning and not something that any of my clients has reported – period stopping on evening primrose oil. The pyroluria protocol typically eases period issues and normalizes the hormonal issues after 2 to 3 cycles. Here is a study using vitamin B6, vitamin E and evening primrose oil and PMS https://www.ncbi.nlm.nih.gov/pubmed/22952490 and a study on zinc and PMS https://www.ncbi.nlm.nih.gov/pubmed/28188965
For those with psychological issues related to hormone imbalances and for anyone feeling suicidal I highly recommend working with a functional medicine practitioner and having testing done: hormones and fatty acid levels and even plasma zinc and serum copper and the urine pyroluria test (even if there is the possibility of a false negative. It’s possible that EPO was not needed. Too much of some nutrients can cause opposite or adverse effects. Make sure they also look at the amounts of the supplements and possible interactions with medications.
And please make sure you have a really good support system in place. Erin Matlock shares some resources here http://www.everywomanover29.com/blog/erin-matlock-talk-about-suicide/
Hi Trudy,
What are your thoughts on copper dumping as I’ve heard that if you are taking zinc even as low as 15mg you have to take copper with it or it’ll deplete copper levels overtime and can cause copper deficiency symptoms. I’ll like to take zinc and not have to worry about any potential problems. I’m already taking a multivitamin without copper but want to add more zinc separately as the multivitamin dosent have enough preferably I’ll like 15mg extra to start off and 20mg altogether . Any thoughts?
I don’t understand. Where is the questionnaire?
Francie
The questions are listed in this blog
Hi Trudy,
I have had nightly nightmares for over 20 years, waking during the dream and it continues. I saw this info about 18 mos ago and began supplements – I had been tested about that time and showed low zinc and B6 and high copper. Iron was ok but I tend to have heavy cycles and am now anemic again.
The initial effects on the vitamins was amazing: B6 brought the nightmares out of waking stages into dream state and the zinc made them more pleasant (I was able to notice the specifics because I had to start them at different times). I was taking 25 mg Pyroxine & 100 mg timed release of B6 and 29 mg zinc glycinate (only form I tolerated – any more zinc made me nauseous 24/7). After about 3 mos the dreams were completely normal!!! I even stopped hearing music in my head all night and day and woke feeling rested. The issue is neuropathy. Numbness in my feet – up to my mid shin on both sides and second knuckle on my hands started. My B6 blood levels were super high (4x higher than range) – zinc was still on the low side but better and copper is better in balance. I had to go off the B6 and all nightmare sleep issues returned. (This alone is very depressing – good sleep is highly underrated). I have had improvements in the last 4 mos with the neuropathy BUT not completely resolved and sometimes it flares, even though I only take B6 25 mg once a week. (My neurologist told me B6 has a half life of 4 days and is excreted through the kidneys…so she suggested I take it once a week). Do you know why the B6 wasn’t absorbing enough to avoid neuropathy but hitting a good level in the brain? Do you know anything about lithium orotate supplementation as well? I see a functional medical nurse practitioner but we have been unable to crack this one.
Hi Trudy,
I heard the optizinc does not interfere with copper absorption, any thoughts on this?
Is it also wise to take zinc supplement that combines various forms of zinc (chelate, picolinate, citrate) into one capsule or only one form i.e. Optizinc is better to take at once.
Thanks
Hi Trudy,
Thank you for providing this information! It has been so helpful for me and my mum. We both believe we have Pyroluria and have started supplementing B6 and Zinc, along with the other vitamins and minerals you recommend. However I have a quick question to ask you. Both me and my mum started taking 60mg of zinc citrate about a month ago, and we do the zinc test with zinc sulphate every week. Gradually over the weeks I have improved and am now scoring a low 3, but my mum has not improved at all, she is still very much at 1. I wonder if you could shed any light on this? Is there a different form that she would absorb better? We are taking it with Evening Primrose Oil as you suggest, so I am not sure how to proceed.
Thanks again!
Hello Trudy,
The Solaray tabs already have 20mg of B6 , does this mean we should take a smaller dosage of B6? I am already taking B12, should I stop the B12 if I begin B6?
Justice
I typically adjust the B6 based on what’s in a multi and B complex. I can’t offer you specifics about B12 but can say that my clients are all on a B complex that does contain B12 and may be on additional B12 if they need it (based on symptoms and testing of B12/MMA and homocysteine)
Hello. I wonder if you can help please? In a desperate internet search I came across you and your description of Pyroluria and the questionnaire with symptoms in it. Well, the list of symptoms felt like someone was just describing me. I already take evening primrose oil , but I rushed out to get some B6 and some zinc to take , I got the B6, but I was looking for something with zinc and manganese in it ( as I’m sure you said zinc would deplete the manganese) now I found some supplements but they all contain copper also, is copper not advisable ? I think I read that copper should not be taken? Is this correct? How come copper should not be taken please? And what supplements should I take with my zinc? I really hope you can help , I am serious about helping my severe social anxiety with the help of nutrients, I am going to but your book now x
Hi Lucy
I find that pyrolurics do better with zinc that does not contain copper (as zinc and copper balance each other out). I have my clients use a copper free multi too. You can find the products I use with clients here https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
My book has an entire chapter on pyroluria so be sure to read this as well as everything else as it’s an entire 9 step approach to end anxiety.
I found a supplement with the form of Zinc recommended, and the P5p, and a little magnesium all in one. Wanted to share it with you! (No copper)
Neurobalance – Brain Function Supplement with Zinc Methionine, Magnesium & Vitamin B6 – Supports Mental Performance, Mood, Sleep & Hormone Balance
Hi Tessa
Thanks for sharing. As good as this appears and something like this may work well in some instances, I find it more useful to have my clients do the zinc and B6/P5P as individual supplements so we can adjust each one up or down as needed.
I read that later on… I’m going to start with this bottle and then buy individual ones when I see how I’m doing. I haven’t been diagnosed with pyroluria, but I have almost every single common symptom and several of the less common, so I figured it wouldn’t hurt to start those supplements. And the EPO.
Keep us posted on how you do
Hi Trudy.
I’m in the UK and and need to get a referral for the pyrrole test. Whilst I’m at the doctor which other tests would you recommend getting a referral for, please? I was thinking methylation and fatty acids.
Thanks
Ed
HI TRUDY HOW ARE YOU
i have been taking dianxit for almost 15 years now till i found out about zinc power so i am now using 50mg chelate glocunate zinc and i stoped the dianxit and feeling much better with the zinc supplement but i am still worried if my dose is ok for long term can you pls help me thanks
Antoine
I’m glad to hear you’re feeling better but I can’t offer specific feedback for you.
Our family has benefited from blood/urine tests for kryptopyrroles and zinc levels. We go to mensahmedical.com. They have outreach clinics across the United States.
Dear Trudy,
I am suffering from extreme social anxiety and OCD for more than seven years. This has huge impact on my life. I have more than 20 symptoms associated with pyroluria, but in Serbia, where I live, there are no tests to determine this,neither doctors are informed about this illness, so it is impossible for me to do the test. I would also like to check my histamine level,since I think that I might have hystadelia.
I used to take medications to treat my illness, but with no significant improvement and many side effects. I started taking supplements as recommended by English professional, but I don’t see much improvement.
I am overly sensitive, very anxious in social situations, I avoid men, because I am scared that I will stare at them (so humiliating), my behavior is odd in social situations,sometimes I am so upset, that I feel my heart pounding all the time, and have chills all over my body.
I live in a fear, so hard to leave my home or office, because of other people, hardly manage to do activities that include going outside.
I am currently taking P5P 50 mg, and Optic Zinc 60 mg, Niacinamide 2g, magnesium, vitamin C,among other supplements, but I still have obsessions, social anxiety. and avoidant behavior.
I would appreciate any advice. Could all this be connected to pyroluria? And how much P5P and Zinc should I take to overcome my illness?
Thank You in advance!
Sanja Baskarad
Hi Sanja,
do you think you may have sugar sensitivity?
It’s worth googling to see.
Regards,
Ed.
Hello Ed! Thank you for commenting. I will try to google it,and see if I might have it. Best regards, Sanja
Hi Sanja
I’m sorry to hear what you are going through but I can’t provide specific advice for you via the blog but can share that I use a comprehensive approach that includes dietary changes like adding quality animal protein, removing gluten/caffeine/sugar, looking at gut health, addressing other nutritional deficiencies like low iron/low vitamin D/low B12 and much more. The amino acids GABA and tryptophan provide quick relief in many cases and inositol helps with obsessions when tryptophan isn’t enough. My book The Antianxiety Food Solution lays it all out (you could get a kindle version from Amazon here http://amzn.to/2kptFWm) and the blog contains a wealth of information.
Thank You Trudy for answering me,I truly appreciate it! I am taking Tryptofan,which helped me a great deal. Also taking inositol,but not regularly,I have to be more disciplined with this,but I think it helps.I have never tried Gaba,but l-theanine instead,which does not work very well on me. Do You think that Gaba is a better choice? I am trying to avoid sweets and caffeine,but pretty addicted to them. i haven’t tried to eliminate gluten,but have done tests on gluten sensitivity,which was negative. I am for about five or six years low in iron,hemoglobin,ferittin,and I am taking medicines and supplements to be in the normal range. Once again,thank You! Kind regards,Sanja
Sanja
Glad to hear tryptophan helps – may I ask what benefits you see?
I find GABA to be more effective for most than theanine but it’s very individualized.
The amino acids help a lot with caffeine and sugar addiction https://www.everywomanover29.com/blog/dpa-weepiness-pain-comfort-reward-eating/ and so does addressing candida if it’s an issue.
I have all my clients quit gluten even with negative tests as they are not comprehensive enough. The low iron/ferritin is classic gluten/leaky gut issue too.
Dear Trudy,
thank You for answering me. Tryptofan helps with my mood and anger, crying spells, self-confidence, and I am overall happier when I take it. When I first started with 1,000 mg, I didn’t feel much improvement, but then I read on Julia Ross webpage that I can increase it up to 3,000 mg. So, I doubled my dose, and I am taking now 2,000 mg from Now Foods. Although, I still have strong OCD and social anxiety. The main problems unfortunately didn’t disappear. I used to have two or three years ago, inflammatory bowel disease (but not chronic), and Candida in the gut, also gastritis, and constantly low blood pressure. Also, when I was pregnant, they said that the baby is smaller to gestational age, and it seems that she didn’t get enough nutrients from me. My little girl is now 7 years old, and Thank God, she is very smart, social, outgoing, learn quickly, and she is the best in her class. But I was long time worried about consequences of malabsorption.
Also, I have started again with inositol today, 18 mg a day, which I was previously taking, which helped me a little bit, but not enough with my obsessions.. Although I usually wait for another salary to order, so I had some stops in between.
I will order GABA next month. Please give me advice which one to take, and in what dosage? I stopped with SSRI 8 months ago, after 4,5 years. Although I was tapering my medications, I still have many consequences of taking them. Depression, which was not present before, constant tiredness, lack of motivation, not able to enjoy anything, premenstrual disphoric disorder, increased anxiety, and OCD. All of this were not present prior starting medications.
I will try to eliminate gluten, caffeine, and sugar, and see how that works.
Kind Regards,
Sanja Baskarad
I tried searching your site and couldn’t find what I was looking for- how much EPO do you suggest for people with Pyroluria? I have your book but I just moved and it’s packed so I can’t look it up there. Also- are you aware of Pyroluria causing other health problems? I do also have sensitivity to histamine (which I read you said can be related) and also salicylates. But my latest bloodwork shows my cholesterol to be sky high, my liver function off, and my potassium is high despite taking no potassium supplements at all (even my multivitamin is free of potassium) and I just wondered if there might be a connection?
Dena
Typically I recommend 240mg of GLA from EPO. Pyroluria is often related to other conditions especially food sensitivities because of the impacts on gut health
Why is question 22. For women, belonging to an all-girl family or having look-alike sisters.
a factor in pyroluria?
Just wondering, because I come from a family of 7 girls who look alike, and why that would affect us.
Maureen
It was initially something Dr. Carl Pfeiffer observed when he was working with his schizophrenic patients who had pyroluria. Since then we have additional information showing that boy babies are miscarried more often than girls and hence more girls with pyroluria. Do you have any brothers? And did your mom have any miscarriages of boy babies?
Yes, I have one brother, and my mom had 2 miscarriages, one of them was a boy, the other one unknown.
thanks for letting me know
Dear Trudy,
I have very high score on Pyroluria (more than 20), unfortunately in my country, treatment, or testing are not available. I don’t have enough money to afford doing all these tests, and to consult with professional about right dosage of supplements.
I plan to order Your book, but my question is, is this enough to get rid of social anxiety and OCD, or I need to be in the clinic, to have professional help? My symptoms are very severe, I can hardly leave my home or office, afraid that I will meet someone, so scared and afraid of people, who might emotionally hurt me, or spread the gossip about me. Even driving in a car is very stressful for me, I am so scared that somebody will recognize me, and that I will do something stupid as always. I got to the point where I really need help, I am not sure if I can do all of this on my own.
I have a full-job, so I could take a credit or loan from the bank for something that can really help. If You have any space in Your clinic in North California, I would find the way to come , and work with You in person with my health issues, of course, if you would be available.
I would so greatly appreciate if You could accept me as a patient.
Kindest Regards,
Sanja
Thank You Trudy for all the research You have done, and shared with us!
My results from Pyroluria Questionary are as follows:
1,2,3,4,5,6,8,9,10,11,12,13,14,15,16,18,22,24,26,28,31,32,36,42, so in total 24.
I didn’t respond yes to couple of questions that I am not certain about.
At one point, I used to take 800mg of B6 pyrodoxine for about 7 days, but still didn’t have dream recall. Now I am taking P5P instead, 100 mg, again with no dream recall,and ongoing terrible social anxiety.
I ordered yesterday EPO, to see how that works.
I think I may suffer from leaky gut and hormone imbalances.
I didn’t completely excluded gluten, sugar,and coffee, but reduced drastically. Should I be taking L-Glutamine? Honestly, I like sweets and pastry and coffee, but I don’t have such a bad cravings. The main thing is that at work i don’t have what to eat, and then I eat things that I shouldn’t. It is expensive to order every day salmon, also afraid to go out, so i am waiting for others to bring me something.
Kind Regards,
Sanja
Hi Sanja,
Dream recall came right back for me when I was having green smoothies and not necessarily taking the B6. Just a tip, if you happen to have a blender.
I also bring lunch to work. It’s cheaper and better for me. 🙂
Kind regards,
Ed.
Hey Trudy, I’ve read your book and recently found an integrative doctor to run some labs who is trained in the Walsh protocol. I meet with him via Skype on March 7th but I have a question. I’ve watched videos by Dr. Mensah and he said pyroluria can be caused by stress and not be genetic pyroluria. I tested 28 which is considered elevated per DHA labs. I feel like my struggle with OCD and recently severe depression is causing a lot of stress on my body. I was looking for pyroluria to maybe be an answer to my ocd anxiety and depression but it seems more likely it’s causing the pyroluria. So if I don’t really have it, will supplements help?
Ashley
We don’t know for sure if pyroluria is genetic or stress-related but either way the nutrients do help with the symptoms. Together with the pyroluria protocol, addressing the depression with tryptophan and/or tyrosine depending on the type if depression, and OCD with tryptophan and/or inositol, often helps a great deal. As you’ve read in my book we also need to address diet, the gut, the adrenals etc
Hello Trudy,
The problem I see these issues can range and mean anything.
For instance: Some people prefer to keep a small list of friends for being that they have little time or may simply not trust many people or have the time or energy for them. If that is your preference that should be perfectly “ok” and shouldn’t mean you have some condition.
Lost me with that one and a few others on this question are such as being pale? c’mon
Hera
There are some strange sounding questions on this questionnaire but they help to identify someone who may be having issues with anxiety in social settings and may benefit from addressing certain nutritional deficiencies. Pale skin is related to low zinc.
I have the book and am reading it and the issue on Pyroluria fits me to a t!! I ordered the test. Thank you so much for this wonderful book!!
Marilyn
Glad to hear you’re finding answers! Enjoy the book! Just be aware that false negatives are common and don’t let that put you off if it happens.
Dear Trudy,
One of the symptoms on the pyroluria questionnaire is FACIAL SWELLING during times of stress. Can you shed light on what mechanism is behind the cause of this facial swelling and what can be done to decrease it?
Are you an advocate of “STRESS DOSING” and if so what guidelines might you have for bumping up B6 and/or ZINC during times of increased stress and worsening of symptoms?
Thank you very much!
Elaine
Low zinc can contribute to swelling/edema (here are 2 papers https://www.ncbi.nlm.nih.gov/pubmed/26917080 and https://www.ncbi.nlm.nih.gov/pubmed/29581807) so this may be the mechanism.
I am an advocate of increasing vitamin B6 and zinc during increased times of stress and worsening symptoms although the term “STRESS DOSING” is new to me. Each person will have their own unique needs and we adjust up until they feel good again and then adjust down once the stressful situation has passed.
Dear Trudy,
Thank you so much for your prompt and detailed response!
Many of us are not able to find local practitioners to help us with our health issues, particularly those of us who seek natural nutrient based solutions. With your excellent book and this excellent blog, we have the resources to identify and improve so many of our health problems on our own in a safe and effective manner. I am so grateful to have you as a primary resource and expert!! Many thanks!!
Why would low ferritin or iron anemia be a pyroluria symptom? Isn’t low ferritin because of low iron. Please help.
Focus
Ferritin is the storage form of iron which tends to be low in pyroluria
Dear Trudy,
Firstly thankyou for giving me my life back – i brought your book and it’s been the answer i have been searching for.
Started zinc, b6, EPO (GLA) and manganese June 2018. I started my zinc at 30mg as directed and did p5p. As i tested with the zinc taste test i increased zinc to 45mg and introduced 100mcg molybdenum. A few days later stool changed to fibrous and fluffy and returned to good when supplements ceased. Now i have increased to 60mg and it seems worse not better however i continue to feel better (symptomwise) each week regardless of this. Have you heard of this and is it copper dumping or am i doing something incorrectly?
So much of zinc like 60 mg will make your hair turn white. Help you get wrinkles sooner, skin will sag, eyesight will be affected- blurry vision, mess up your sleep. It may also lower your iron. Can also contribute to hernias or varicose veins, hemorrhoids. In my practice i would not recommend this..
So, what would you recommend…?
Hi Trudy,
This is a very old post but I refer to it often. What is your recommendation if zinc supplements cause intense nausea (even when taken with food)? I have Progressive Labs Zinc 30mg.
Thanks!
Dina
Dina
I have my clients switch to another form until we find one that doesn’t do this. Also smaller amounts twice a day works for some people.
I’m not exactly sure how this comment page works , but it seems that we are able to ask questions and seek professional advice. I have been reading this page and the comments of others and learning a lot!
I happened upon it while researching help for my 19 year old son that has struggled with anxiety and depression off and on since he was small. Mostly anxiety and poor handling of stress. He checked 15 yes’s on the most common symptoms and several on the less common, including stretch marks on his mid back that look like a bear clawed him and
I (his mother) am the oldest of 6 girls (5 sisters), and we all highly favor each other.
His diet is extremely poor, as most of his anxiety is centered around food, so he is quite thin. He is 6’2” and weighs about 125. He will only eat a handful of things, mostly cheese, pasta, bread, potatoes, sugary sweets, and rarely protein. No veggies, no fruit. I can occasionally get a strawberry smoothie in him. He is never hungry at breakfast.
He has a hard time handling stress and will have “melt downs” associated with food, work, school, or if something is just generally not going well, because of his low ability to handle stress. Or he will make small things into big stress attacks! I would explain it as ZERO tolerance/patience.
I don’t want this to compromise his daily life anymore,
because, contrary to some of the symptoms, he is quite social and enjoys time with friends. He is very charming, loving, cute and witty, but he does also like his alone time.
I’m trying to determine if I should get the blood/urine test for him (possibly me too) or just go ahead and start him on the Zinc and B complex?
I’m hoping that you could help in suggesting the right regimen for him and what dosages and brands that you suggest.
He was put on an anti-depressant (wellbutrin) for the first time a few weeks ago and became suicidal after a couple of weeks, so we stopped that and he is now only taking Omega3 high in EPA and VitD3 10,000 IU per day, because it was suggested to me for his depression.
Thanks a bunch!
Marni
Marni
Sorry to hear about your son’s struggles but glad you’re seeking solutions here. I can’t provide individual professional advice unless someone is a client. I’d encourage you to read my book “The Antianxiety Food Solution” to get a good understanding of all the approaches I use with clients https://www.everywomanover29.com/store/aafsbook.html All of this helps with carb cravings like “cheese, pasta, bread, potatoes, sugary sweets.” The amino acids help break the addiction. I’d focus on this at the same time as looking into pyroluria. There is an entire chapter on pyroluria and you’ll see I don’t typically do the urine test because of false negatives.
According to the symptoms I have pyrolouria, but unfortunately I am not able to test for it because it is not possible in my country. I started treatment with zinc and P5P a year ago and since then my anxiety was almost gone. But recently I found out that I have very low ferritin levels, which were ok before I started zinc. So I had to take iron supplement and stop taking zinc and the anxiety came back. I found out that zinc and iron are actually competing for absorbtion, so high zinc intake is lowering iron intake. Do you have any suggestions how to take one and not affect the other too much?
Thank you.
Branka
It’s wonderful to hear that the supplements for pyroluria eliminated your anxiety. Pyrolurics need ongoing zinc supplementation and we don’t want to stop especially when we observe such dramatic results.
There is research on this: “use of a modest zinc supplement improves zinc indices, but also appears to induce a cellular iron deficiency and, possibly, further reduce iron status” https://www.ncbi.nlm.nih.gov/pubmed/12097660 but it’s not something I’ve observed with clients. I’m very curious and will ask colleagues what they see.
I’d also focus on boosting iron via the diet such as grass-fed red meat, eating sources of iron with vitamin C and using a cast iron pot for cooking.
Thank you Trudy for you quick and detailed answer. I’m so glad you do this work for all of us who don’t find help with the regular medicine. I just completed my iron treatment suggested by my doctor and will go on with my zinc. I already take care of my diet and it should be fine even regarding enough iron intake, so from now on I plan to take the zinc in the morning and a mild iron supplement in the evening and then I’ll see what happens.
Trudy, this information is so valuable! My family and I are Mensah Medical clients and the treatment for Pyroluria was an important part of recovering our son from High Functioning Autism.
Our son has really obvious reactions to dyes, flavorings, gluten and dairy. His behavior gets awful and I have no doubt that all of these “foods” cause his zinc to sink.
One of our son’s “tells” after eating offending foods is he squeezes his hands together–wringing them. He does not do this after taking zinc.
I saw this on a list on your website previously, but I don’t see the symptom listed any longer. I am writing a book about my son’s path and I would like to cite this in the book if possible. I would love to get a link to a study that addresses this.
Great website, thanks so much.
Lauren
How wonderful to hear about recovering your son and so pleased you’re writing a book about his healing path. I’m not sure what symptom you’re referring to? “squeezes his hands together–wringing them” after eating problem foods?
Yes, he clasps his hands together and squeezes hard after he has eaten food dyes or flavorings, or similar foods. It seems to be an unconscious, automatic movement, like those in Tourette’s. With my son, this always occurs together with oppositionality, argumentativeness, and serious depression if he hasn’t had his vitamins.
I thought I read on your site, although I don’t see it any longer, that hand-wringing is a less common known side effect of a lack of zinc. If you do know of a source of that info I’d be grateful.
Lauren
Zinc is mentioned in this Tourette’s Syndrome research https://www.ncbi.nlm.nih.gov/pubmed/22139323
Hi, thanks a lot for this article. I have a question about omega6 sources. Why is the primose oil always recommended for this rather than something like black seed oil? Does the primose have a higher content of bioavailable omega 6 compared to other oils?
I have ordered metaboloc pqnel plus consultation from DHA lab and i consulted Dr.Mensah 2 weeks back. They prescribed the supplements(including cal/mag, B6, P5P, Zinc, Methionine, Same, Vutamin c, Eve primrose oil) as i was diagnosed with High pyroluria(30.8) and High Histamine(79).
While waiting for the ordered Supplements to reach me, i thought to try the below supplemets at a low dose from yesterday.
B6(Now foods) – 50mg after breakfast
Zinc Gluconate – 30mg after dinner.
Today is the second day, but i felt my appetite is increased a lot(today noon and eve) and i am feeling tired and i had headache.
Can you please advice whether the above are expected? And will it reduce in coming days?
Lakshmi
Anything is possible but this is not feedback I hear. I recommend discussing this with Dr. Mensah.
Thanks Trudy. I think that was because of some infection. I also got fever. I have raised the same query to mensah medical nurse. Meanwhile i m still taking b6 and zinc and see whats happening. I ll update you after some days. Thanks for your reply.
Hi! Thanks for the informative post. I’m wondering why you recommend copper free supplements as opposed such to a copper/zinc ratio?
Heidi
It’s easy to get enough copper in the diet and most of my anxious clients have copper levels that are too high already
Hi Trudy,
I have most of the pyroluria symptoms ( over 20 of them) but i did not take the test.
I supplemented with 70 mg of B6 ( bayer b1b6) and zinc bisglycinate 15mg daily. I am gluten and dairy free.
I still have poor memory and poor dream recall and social anxiety and inner tension which are my main symptoms but i feel that the B6 supplement is giving me confusion and brain fog.
Since B6 supplementation is responsible for increased serotonin, could it be possible that too much serotonin is not good for me and I dont need that much vitamin B6 despite all of the symptoms I mentioned?
Please help
Steve
There are many factors involved with pyroluria and I use this to troubleshoot https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/ Looking at the supplement quality is also key – I would not use one manufactured by Bayer because of fillers – this itself could contribute to brain fog.
Hello. First of all, I want to thank you so so much for this information, this article has been a life changer. I had a lot of these symptoms and most of them are gone since I started taking b6 and zinc.
The only problem I have is that I have noticed that I slowly develop tolerance to pyridoxine. I’ve started taking these supplements 6 months ago and I had to cycle a few times because of this. I normally start taking 100 mg of pyridoxine chlorhydrate and 40mg of zinc bisglycinate, but after a few days I start to notice that the effects slowly banish. For example, I stop remembering dreams, I wake up tired, I feel nausea and im not hungry in the mornings, I have brain fog, etc. The effects come back once I increase the dosage of pyridoxine, but I end up taking like 800mg (equivalent to 8 pills) so I stop taking it for two weeks or so, to feel the effects again.
Is this common ? I have not found any information about it.
I have not been tested to pyroluria since in my country (Argentina) it is a totally unknown disease. I also had trouble finding P5P here.
Thank you in advance,
Nicolás.
Nicolás
With pyroluria, zinc and B6 are dumped in higher amounts when under stress and could account for a need for less and then more. Stress could be life stresses, food sensitivities (eg. accidental exposure to gluten), parasites (they have life-cycles), Lyme disease (often a rollercoaster of symptoms), Hashimoto’s (symtpoms can fluctuate) etc. I have my clients keep a food mood log and we look for patterns
Dear Trudy,
I was diagnosed with pyroluria and undermethylation many years ago. i felt immediate relief from zinc and B6 and stopping folate sups – within a week or so. Further benefits didn’t ensue though and some sups like GLA made me much worse.
I’m now going it alone as i’m yet to come across a good practitioner and have 23andme raw data results ready for someone to analyse.
I’m trying to get pregnant at 39 yrs old after 1 year trying and could really do with some support with finding a proper protocol thats right for me. Could you help? i’m in the UK. Ellie
Hi Trudy,
thanks for all the information you’ve brought us. I’ve thought for a while that I have this condition. In fact I ticked 27 of the questions.
I found when I was a youngster I had the white flecks on the nails but now since growing up I don’t get that anymore. Is that common or did it mean I was just super-low in zinc in those days?
Also, I’m starting back on the zinc/B6 protocol. How long does it take to start feeling better? I’m virtually zero-communicative at work at the moment. People are so stressful to be around.
Thanks!
Ed.
Ed
Most of my clients start to feel more social in 1-2 weeks
Thanks Trudy. I love the work you’re doing, by the way.
Hi trudy,
I’ve been taing 60mg of zinc bisglycinate and just 10mg of b6 pyridoxine daily. Is it okay to take that much zinc with just that small amount of b6 and feel better? maybe I have just zinc deficiency and not pyroluria inspite of the fact that I have more than 20 of the sysmptoms in the questionnaire?
thank you for your help and all the information
Steve
The amounts of each nutrient can differ based on individual needs and some folks with pyroluria do need less B6
Hey Trudy, thank you for your reply to my question,
I am as I told you taking mega doses of zinc (60mg a day) spread throughout the day at 15 mh every 5 hours .
it’s a zinc bisglycinate with 2.5 mg of B6. It’s working well but I still feel something is missing like my mind is not as sharp especially after I exercice or sweat alot at the sauna. I don’t think it’s a blood sugar issue. Do I need to go higher on the zinc? Could it be magnesium as I only take 200mg before bed? Or is it b6 and 10mg a day is not enough after all?
Thank you so much for all your help and kindness
Sincerely your
Steve
Dear Trudy,
I also have opaquely white fingernails but only the upper part of the nail, it becomes less opaque at the bottom. Is that a symptom of zinc deficency? I’ve been taing 60mh of zince bisglycinate for over a month now.
Than you so much for all your help
Have you had pyrolurics talk about difficulty swallowing and low self esteem/comparing oneself to others and do the vitamins help with this?
Ashley
The swallowing issue is not something I’ve heard with pyroluria and think thyroid or vagus nerve issues. Low self-esteem is a sign of low serotonin and the pyroluria supps support serotonin production and typically help with all low serotonin symptoms
Our son had low self esteem, depression and bouts of suicidality before testing & treatment. Treatment with prescription zinc & B6 (among other vitamins) resulted in much higher self esteem, ability to see a bright future, motivation to excel, and an absence of depression & suicidality.
Lauren
This is wonderful news, thanks for sharing. I’m so happy about your son. Could you share what you mean by “prescription zinc & B6” – these are over the counter supplements? May I ask how much helped him?
Hi Trudy,
I was wondering if zinc levels in blood tests can come up as normal in pyrolurics because the zinc can be in the body but not properly utilized by the body because of the disorder? Or is there another reason for this? Thanks in advance
Dayton
Blood testing of zinc is not an accurate reflection of zinc status
Dear Trudy,
Thanks so much for alerting us that blood testing for zinc is not an accurate indicator of zinc status.
A friend and I tested our blood zinc, copper and whole blood histamine several times and found the results inconsistent and unreliable. Consequently, we became very uncomfortable having our supplement doses adjusted based on the blood test results.
We now both rely on monitoring our symptoms and take the ZINC TASTE TEST per page 134 of your superb book. Your book allows us to safely and effectively manage our intake of zinc, B6 and amino acids.
Do not know where we would be without your knowledge and guidance. Thank you!
Hi Trudy,
I just happened to stumble across a Youtube video in which you describe this solution for social anxiety. I write a blog about social anxiety and so of course this is interesting to me. I had never heard of pyroluria before and from what I can tell it has not received any research attention, especially in terms of reversing social anxiety. I’d like to write a blog post on pyroluria for my readers but honestly I’m stuck because there’s no research evidence. At the same time, it seems like what’s the harm in taking these supplements to see if it works? One question I had is whether there are any potential side effects from taking the supplements you recommend?
Hi Trudy, I see that you are still responding to comments to this year. May I ask what keeps you going in helping people?
I would love it if you could tell me if negative reaction to zinc means I should continue taking it or not? When I take Zn monomethionine with no Cu, I get heart palpitation and almost intolerable anxiety, with possibly increase in tics.
If more info helps, I am a 25 year old male with healthy physical appearance. My main targeted symptoms are: Tics, OCD, anxiety, rapid mood & state changes, and intrusive thoughts. Have had those symptoms ever since I can remember.
These issues are responsive to natural antibiotics and antivirals. So I’m assuming it’s due to PANS/PANDAS.
I scored: 1,2,3,9,11,12,13,14,16,18,19,20,21,23,24,33,36
Looking back to when I was not eating clean and not taking supplements, I had maybe five or more symptoms on the questionnaire. They come back harder than before when I eat dairy and sugar and all the junks.
Thank you
Joseph
Joseph
I don’t ever have clients take a supplement that causes adverse effects. I have clients avoid the foods that cause symptoms – diary, sugar and junk food.
Hello Trudy,
I started the B5 & zinc supplements about 1 week ago, so early days. I also purchased a multivitamin, it has natural ingredients as opposed to synthetic for better absorption. I just realized it has 1mg of natural copper bisglycinate. Would it be fine to take this multivitamin every 3rd or 4th day to keep copper intake at a minimum.
Thanks Ciaran
Ciaran
I recommend no copper for my pyroluric clients
Hi Trudy, this is a little bit weird, but since I started with the B6, Zinc & EPO, I have noticed a blue staining in my toilet bowl. Can this be related to my body getting rid of excess copper, have you ever heard of this before? I also notice a better dream recollection on the days I workout.
Thanks Ciaran
Ciaran
I have not heard of this from clients but copper (from water) can leave a blue stain in the toilet bowl, so I would suspect it’s possible. Now I’m very curious and I would love to see a picture if you have one? If you send it to support@everywomanover29.com I’ll share with colleagues to get their feedback.
Couldn’t this be from excreting high level of kryptopyrroles known as mauve factor?
Hey Trudy,
First of all thanks a lot for your extensive study on Pyroluria, Introversion and Social Anxiety.
Just came across your article while looking for a cure for my hand tremors which I believe is essential tremors (as per my neurologist). I was taking beta blockers as suggested by him. But I had to increase the dose with every passing week/month. And it started giving negative side effects, so I stopped it in a couple of months.
I am an introvert, socially anxious person since childhood and has this tremors in hands since then. It’s just getting more visible with age. It gets worse when I am nervous, when I get socially anxious and with even a bit of physical activity of hands.
I took the Questionnaires and scored as below:
Pyroluria : 1, 2, 3 (rarely), 6, 9, 14, 17, 24, 25, 26, 27, 28, 29, 34, 35, 36, 38 (hand tremors), 39
[have not performed the Liquid Zinc Test (7) ]
Introvert: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 16, 18, 19, 21, 22, 23
Do you think that my social anxiety, introversion and hand tremors are somehow related to Pyroluria?
Also, here in India, there are no tests available for Pyroluria? Can it be detected with zinc and Vit B6 deficiency test?
Also, can you please suggest me starting dosage of the 3 supplements and some good brands (if possible) for the same?
I will be more than happy if you could provide your valuable advice on the same.
Thank you so much in advance. 🙂
– Tisa (Age 29)
I found out about pyroluria years ago. As an introverted recovering alcoholic I figured I probably had it. I answered yes to almost all the questions on your quiz. But when I supplement with zinc I gain weight really fast, and B vitamins make me feel sleepy and foggy – like I haven’t had my first coffee yet. Have you ever heard of these reverse reactions to the supplements?
Thea
I have not but when I hear this I look at quality and quantity of the supplements. A full workup to assess gut health, adrenals, other nutrient deficiencies, diet, lifestyle is key as it’s seldom one aspect
Introvert Test: Yes to: 1,2,3,4,6,8,9,12-17, 19 and 22.
Pyroluria Test: Yes to 1,2,3,5,6,7,9-13,16,18,21,25,26,27,29,34,35,36,38,39
I’ll try the Zn 30mg, B6 100mg and evening primrose 1300mg
I’m a member of the SIBOSOS Facebook group and doing a lot of experiments on myself to figure out a good regimen of diet, supplements, etc. Thank you, Trudy!
Anne
Thanks for sharing – please let us know how it goes.
I’ve had some of the expected responses when I write about introversion having a biochemical aspect … “please don’t try and fix me – I’m fine the way I am – the world needs both introverts and extroverts” (https://www.everywomanover29.com/blog/why-social-anxiety-introversion-and-loneliness-can-be-lethal-and-a-simple-nutritional-solution/). I’m curious about you being open to this and wanting to to try the pyroluria protocol.
Hi Trudy,
I am total of Total of 28 yes Pyroluria Test and
No to 5,6,7,8,18, 19,20,23, 31,32,33,37,42
I have no problem striking up small talk with strangers one on one though but sometimes I’ll avoid the whole neighbourhood because I don’t want to talk to anyone , I often isolate and I like it . I only want to be around my husband, child and dog . I’m miserable in groups and depressed after attending a group gathering of any sort. I really don’t like socialising and people who talk to much exhaust me and I’m sensitive to noise , lights but have a strong sense of smell and taste .
I have dream recall but my dreams are never pleasant and I’ve had nightmares my whole life and I’m 37. I am starting off with 30mg of zinc and 40mg of pyrodoxine b6 I’m very sensitive to vitmamins and believe that magnesium wipes me out and may cause low blood pressure for me so I won’t add that and evening primrose gives me pimples which I don’t usually get . How do I know when I’m on enough b6 and when do I stop? When my dreams turn pleasant do I keep taking that dose or back it off and see what happens? They are a 40mg capsule and can’t be split. I had them compounded .
As I get older the worse pms gets . I do feel the yes answers to the tests when not pms time as well though . I’m also on a high dose iron supplement maltofer and Ester c vitamin c . I’d prefer to not take a multi because of the magnesium. Do I have to?
For the introversion test yes to most but No to 11, 22, 8 and 5 .
Thanks:)
Emma
I use the symptom resolution as a clue that we have found the correct combination of nutrients. I’m afraid I can’t give specific feedback via the blog
Thanks Trudy,
How do I go about getting feedback?
I’ve been on the b6 and zinc two days now and had the worst nightmares I’ve ever had last night and can recall them .
Also waking frequently in the middle of the night from them . I take them in the morning.
Thanks
Hi
I’ve been researching the supplements for pyroluria and found a couple that might be of interest to you, for your european clients:
The core by Biopure which has been designed specifically for pyroluria
https://biopureus.com/product/biopure-core/
https://www.nutergia.co.uk/dietary-supplement/en/nutergia-products/your-need/unwinding-relaxation-sleep/nutergia-vectiseryl_BQ.php
Hope you enjoy!
Hi Trudy,
I am taking Kirkman liquid Zinc which is Zinc from Zinc Alpha Ketoglutarate.
I have had to start off with such a low amount that liquid zinc has been the only way I can accomplish this. I take some in the morning with my breakfast and some at night after dinner or before bed. But most interested what you think of this form of zinc. The additional ingredients are listed as Purified Water, Sorbitol, Glycerine, Citric Acid, Zinc Alpha Ketoglutaruate, Natural Rasberry flavor, potassium sorbate.
Thanks Trudy I learned a lot and a great read
Hi Trudy,
I’d like to know at what stage you address adrenal and gut issues while on a pyroluria protocol.
Some research suggest starting with gentle nutrients(micro nutrients )before herbs or any glandular preparations for adrenal and thyroid issues.
Some clinicians work on this too…
It seems the nutrients for pylorulia, adrenal and thyroid are more or less the same when the multis and extra magnesium are added. If that’s so,then the foundation of the thyroid and adrenal resetting will have been built in so to say…
From what I read so far,pyroluria may be a trigger or underlying cause for adrenal,thyroid and even gut issues.
Please let me know your opinion on this on a general basis and any other information that provides more insight.
Thanks and awaiting response
Regards
Muhammad – it depends on each person
Hi Trudy and thanks for the feedback and all you do.The post on histamine and under/over methylators was very insightful. I’d like to know the average doses used for the B vitamins and vitamin C in the protocol…
This led me to the work of late Dr Nicholas Gonzalez and his book on Nutrition & The Autonomic Nervous system. He highlights the sympathetic dominant and parasympathetic and balanced.In the last interview he did on the Evolution of medicine summit via Health Talks ,he mentioned parasympathetic dominants don’t do well on B1 ,B2,B6 and B3 and high doses of vitamin C and D.Same with some minerals and describes why some people have paradoxical reactions to certain supplements everyone believes in the epidemic list(like D3,magnesium and vitamin A).
This suggests people reacting to supplements may not always be due to fillers or low quality brands. Evan Brand highlights this too but based on other parameters like parasites where he advocates stool and urinary organic acid testing…
This theory makes sense a lot.But where does this tie in with someone with clear pyroluria symptoms and signs and or thyroid problems? The theory is more or less based on environmental and nutritional factors but rooted in ancestral diet “straying” so to say when the Inuit or Masai for instance eats modern diet his ancestors never ate.
Dr Gonzalez used standard blood tests and hair analysis but not sure which. Perharps you know them since you interacted with one of his few mentees Dr Kelley Brogan?
Would like to know your views on this concept and if you use or consider it as part of a holistic regimen. It sure looks like your amino acid and pyroluria questionnaires and the histamine points and posts(ALL eye opening I must say that I am short of words because they make a lot of sense)
I have not read his book which was the last but will like your views on this where your community can learn about it as well .
He says the concept is 100 years and books have been written about it in the 1930s and more papers recently. Dr William Kelley before him used it with great success too,but it seems Dr Gonzalez further refined the protocol.
Finally we’ll be glad if you can touch on Dr Brogan for more insights on this since she worked with him directly. Perhaps you did too?
Thanks again
Regards
Hello Trudy,
Thanks so much for this amazing info. I have a pyrroles issue and have been taking BioCeuticals supplement for 2 years now with huge success. (Includes biotin 1mg) I’ve conceived and I didn’t even think to stop the Pyrrole supplements I am taking. Now I am freaked out as it might be causing damage?
Do you think there is an issue continue taking the supplement while pregnant?
Do you have a good recommendation who is an expert on Pyrroles and pregnancy that I can book a session with? Thanks in advance!
Shelly
These doses have not been studied in pregnancy so best would be to discuss with an expert on this topic.
Apologies for the delay in your comment approval and my response. We had a computer glitch where a large number of comments were hidden from view in a spam folder. It mostly affected new folks who were commenting for the first time but it’s hopefully resolved now.
Hi Trudy, I’ve just come across your information regarding Pyroluria and answered yes to lots of questions in your questionnaire, which is interesting as I have a lot of gut, mood and hormone imbalance issues. I’m looking into a Pyroluria test and in the meantime have just looked back on some blood and urine test results. My zinc (plasma) level was 9.7 umol/L last March and I wondered if this is the kind of deficiency you refer to or would you expect the levels to be a lot lower in someone with pyroluria? My B6 levels were normal in a blood test around the same time, however an OAT test the year before showed Pyridoxic levels of 3.6 nmol/mol creatinine, which was below the mean. I was wondering how accurate urine tests are in determining a B6 deficiency and whether this is any indication of Pyroluria?
Many thanks
Lucy
Lucy
Plasma zinc and B6 in blood are not reliable markers for deficiency. The B6 marker on the OAT is more accurate. I use the pyroluria questionnaire and response to supplements and the pyroluria urine test sometimes if a client wants to test. It can show false negatives.
Apologies for the delay in your comment approval and my response. We had a computer glitch where a large number of comments were hidden from view in a spam folder. It mostly affected new folks who were commenting for the first time but it’s hopefully resolved now.
Just did this questionnaire and scored 20 on the most common and 5 on the less common. I have to say, the part about not liking to sit in the middle of a room or restaurant cracked me up because I have always had that! I had no idea that could be related to my health.
Incidentally I have an appointment with a naturopath in a few days so I’m going to share this information for sure.
Just wanted to say this was helpful and interesting. Thanks!
J
Glad to hear how helpful this was. Keep in mind that not all naturopaths are familiar with pyroluria. If not be sure to share this questionnaire and my book “The Antianxiety Food Solution” (which has an entire chapter on pyroluria). More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
And keep us posted
Trudy, my 15 yr old granddaughter has so many of these symptoms. I’m forwarding this to my daughter (who may also have this) but my question is that my granddaughter also deals with Type 1 diabetes. Her sugar is very high and the 200’s is good for her. She might weigh 100+ ibs; would the diabetes affect the amount of the vitamins you recommend? Thanks.
Jill Ann
I have not seen type 1 diabetes to impact the pyroluria protocol. If she also have low GABA type anxiety (physical tension and overwhelm), be sure to also look into GABA. Research shows it’s very beneficial for type 1 and type 2 diabetes. More here https://www.everywomanover29.com/blog/diabetes-anxiety-and-gaba/ and here https://www.sciencedaily.com/releases/2018/04/180405093220.htm
If you are new to the amino acids (and other anxiety nutrition solutions like gluten/sugar/caffeine removal, blood sugar control, gut health, pyroluria etc) my book “The Antianxiety Food Solution” is a great place to start. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
It’s a comprehensive approach – amino acids AND diet. What is her diet like right now – gluten-free, sugar-free, caffeine-free, eating protein at breakfast for blood sugar control, real whole foods, grass-fed red meat, wild fish, fermented foods etc?
I like to take care of my health, both physical and mental. To avoid deficiencies, I had to adopt a balanced diet and above all use a specific food supplement. It is on this article that I found the product that allowed me to relive and enjoy optimal well-being without health concerns.
Arnold
Thanks for sharing and so glad to hear the pyroluria supps have helped you
My questionnaire score is 26. This month I finally got my test results. I’m not sure how reliable these results are but my B6 is less than 1 ug/l, my urine pyrroles are around 40 and my zinc is just barely in the reference range (which I didn’t expect).
Is it possible that taking B6 makes me even more irritable? I started taking 30mg P5P this week (nothing else, I am still waiting for my selenium etc.) and today I almost snapped at different people despite my social anxiety. 🙂
I will get myself tested again in 4 months, which tests do you recommend?
Dave
The urine test can give false negatives so I rely on the questionnaire and response to supps. I have not had anyone report more irritability with P5P.
How did you get on with it? I’m just about to start mine.
Is evening primrose oil safe to give to a tween who has just started menstruating? I’ve heard it can interfere with women’s hormones, so just want to double check before starting her on it.
Thanks!
Mary
Evening primrose oil is considered safe for 12 and older but when GLA is low on a fatty acid tests we use it younger than that and especially if someone has pyroluria.
Thank you for your knowledge, article and work :).
The daughter (12 years) has been diagnosed with KPU (urine test) and celiac disease. We try supplements.
Could pain and inflammation of the extensor tendon sheaths of the thumb (suspected as de Quervain’s disease) be related to KPU? Earlier, for about 2 years, various atypical injuries appeared and disappeared: pains in the ankles or wrists. Could these be symptoms of a deficiency, e.g. manganese?
Thank you for your answer
Leszek
Yes pyroluria can be a factor in many tendon and joint issues (and ankle/wrist/thumb) pains as it affects all types of collagen. Zinc, B6, EPO and manganese are all needed. With celiac disease nutritional deficiencies are common and all must be addressed and a leaky gut healed.
With hand/wrist injuries seeing an OTR hand therapist is recommended and a PT for ankle issues. Once pyroluria is addressed there should be no or fewer injuries.
Please let us know how she goes.
Hi Trudy
I just have a question regarding b6. Do I need to take it individually or would taking a b complex good enough. Also if I need to take it individually would I need to add b complex to avoid disrupting my b vitamins.
Thank you
Faris
With pyroluria always B6 alone and a B complex
Hi Trudy,
Do men also need EPO for pyroluria protocol? Or will omega 3 suffice.It seems women benefit more from EPO. If yes,can one generally use omega 3 and EPO simultaneously?
A different question for amino acids– some practitioners suggest to use one amino at a time and to always use alongside free form amino acid essential and non essential as stated in the Prescription for Nutritional Healing book by the Balchs… Or is this ”old hat” approach?
Thanks.
Muhammad
I have seen many males with pyroluria benefit from EPO. Fatty acid testing will confirm need for this and omega-3s.
I have not seen the need for free form amino acids except with endorphin support.
Every time I click a link to access a questionnaire, I get into another blog, but no questionnaires. I’ve just wasted 1/2 hour, and even tried facebook links, but even though it says “here is the questionnaire…” and i follow it directly, it just takes me to a new blog, one with the heading ‘Questionnaire’, but no questionnaire to be found.
Kim
These questionnaires are a list of symptoms that we use to help figure out possible root causes. This one lists pyroluria symptoms and this one lists brain chemical or neurotransmitter imbalances and which amino acids may help https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
I’m not sure what you are expecting.
Looking to get specific direction as to when to take Zinc and p5p. Together, separate am or pm? Thank you.
Mindy
I typically have clients use both at breakfast and lunch with zinc in the middle of the meal to prevent nausea. My book “The Antianxiety Food Solution” has an entire chapter on pyroluria with catying doses and combinations of vitamin B6/P5P More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
I’m so intrigued by #28! (“Being bothered by being seated in the middle of the room in a restaurant.”) And I feel seen. What is the relationship between the condition and this aversion? Thank you! I find your work inspiring and very effective.
R
Interesting isn’t it? It was something Dr. Carl Pfeiffer observed in his patients with pyroluria. I suspect it may have to do with low serotonin or low GABA causing anxiety, fear, lack of confidence (the zinc and B6 are needed to make serotonin and GABA)
Glad you feel seen!
Considering that Zinc supplementation is required lifetime to keep the pyloruria symptoms away. I wonder if such long term supplementation would not bring down serum HDL as some medical articles suggest ?
Is there a risk that this long term zinc supplementation cause the Pyrolurics more prone to cononary diseases at old age?
Thanks
Could you tell me what I can do if I can’t tolerate B6 or p-5-p and suffer from pyloruria?
Linda
I would want to know which product/brand was used, how much and the reaction before being able to provide feedback. I’d look at fillers and dosage
I’d also want to know of there are other issues with other products i.e. an overall sensitivity or MCAS (mast cell activation syndrome) where there are many reactions.
I’d also want to know about poor dream recall or if nightmares are common? (both indicate a need for vitamin B6)
And if the birth control is being used (as it depletes vitamin B6).
I have been taking b vitamins (and some other supplements) since February. Around May I started getting fatigue and I could not find a solution. Last week I read about how large doses of B12 affects potassium and can lead to fatigue. This is probably what happened to me, because when I stopped taking it and consumed potassium citrate my situation quickly improved. The B12 in the supplement I was prescribed by center I got tested in is around 10000% of the RDA.
Have you heard about this before? Thanks in advance!
Dave
This is new to me – thanks for sharing
Hi Trudy,
Does curing pyroluria cure mental illnesses (such as schizophrenia)?
Thanks,
Matthew
Pyroluria is common in schizophrenia and using a nutritional approach to address the pyroluria helps with many symptoms. But it’s seldom the only factor. Other nutritional/biochemical aspects to consider: a gluten-free diet, a keto diet, infections, parasites, histamine (high or low) and niacin (and others – this is not a comprehensive list)
Here are some links for additional reading
– Ketogenic diet: reductions in auditory hallucinations and delusions, better mood and energy, and weight loss https://www.everywomanover29.com/blog/ketogenic-diet-reductions-in-auditory-hallucinations-and-delusions-better-mood-and-energy-and-weight-loss/
– Case Study: Bartonella and Sudden-Onset Adolescent Schizophrenia https://www.everywomanover29.com/blog/case-study-bartonella-and-sudden-onset-adolescent-schizophrenia/
– Toxoplasma gondii: schizophrenia, bipolar disorder, OCD and unresolved anxiety? https://www.everywomanover29.com/blog/toxoplasma-gondii-schizophrenia-bipolar-disorder-ocd-unresolved-anxiety/
Hi Trudy, I tick off a lot of the symptoms for Pyroluria and have ordered a urine test, but wondered for how long should I stop taking zinc and B6 before doing the test? Many thanks, Saskia
Saskia
Best to check with the lab but 1-2 weeks is often best. And use the symptoms as labs can have false negative results.
Hey Trudy!
I just listened to your podcast interview with dr. Jockers. We attend the same church 🙂
What if the physical (gaba), mental (serotonin) and pyrolauria all resonated with me?
I have a lot of the symptoms in each category but am VERY sensitive to supplements.
Do I start with everything (just low dose)? Or do you suggest an order to them?
Female: age 45
Periods now every 22 days
Panic attacks in social settings (high heart rate but low blood pressure and strange gurgling in throat that seems to relieve pressure in chest/near heart)
Agoraphobia
Stop light panic attacks
Hormonal and seasonal depression
Fatigue
Ruminating thoughts
Irritability
Low cortisol
Not hungry when waking
Constipation
Sensitive to all medications … little goes a long way
Possible ehlers danlos/mild pots/ mild neurocaediogenic syncope (diagnosed .. confirmed tilt table test)
Panic attacks (grocery store check out lines, talking to people too long, feel trapped, won’t fly anywhere, barely drive where there are stop lights, gurgle all through church, etc)
Cold feet
Pain in feet
Not diabetic
Thyroid normal
Slightly estrogen dominant
Been off lexapro (which didn’t help) for 4 months now
Have passed out when I see others in pain
Low blood pressure
Migraines triggered by imbalance of potassium and sodium
Fearful
Lack of focus
Doesn’t this sound like I could benefit from all the supplements you suggest?
Which ones do I start with?
I’m okay to do every protocol but not sure if that’s wise…
Thank you
ER
Glad to hear you learned about my work from Dr. Jockers
I use the amino acid questionnaire and pyroluria questionnaire and start with either GABA or tryptophan to get a baseline /ideal dose and then move on to other amino acids as needed. I have my client pick the area that is most problematic/uncomfortable for them. Next is the addition of pyroluria supplements and everything else.
My book “The Antianxiety Food Solution” is a great place for the foundations (you don’t mention what dietary changes have been made) and has a chapter on the amino acids with dosing/timing information and a chapter on pyroluria. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
My online GABA Quickstart group program is helpful when you have questions related to GABA and need guidance (and moral support/encouragement). More here about the program and purchase info https://www.anxietynutritioninstitute.com/gabaquickstart/
With any kind of pain symptoms we also always look into dietary oxalates – more here https://www.everywomanover29.com/blog/low-oxalate-success-stories-resolution-of-joint-body-pain-insomnia-peripheral-neuropathy-and-can-walk-without-a-cane/
Hi. I think my 23 year old daughter has pyrloruia and I want to suggest she start with the zinc, P5P and magnesium but there is an interaction with Zoloft and evening primrose oil and she is on 200mg Zoloft, should I just start her on the zinc, P5P and mag to start. She also has a copper IUD that she doesn’t want to remove.
Kristie
The protocol is zinc, B6 and EPO (and a copper free multi and magnesium if needed). I’m not aware of a Zoloft interaction and additional zinc is often needed when someone is using a copper IUD.
When you’re new to pyroluria, my book “The Antianxiety Food Solution” has an entire chapter on the topic and the amino acids and diet. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Hi there! I am going to get started on the zinc & b6 protocol, however I was wondering – I tend to be incredibly sensitive to majority of supplements, herbs, vitamins, minerals etc. as they typically cause severe debilitating nausea, dizziness, low blood pressure and just an overall sick feeling. Do you have any experience or suggestions for hypersensitive people such as myself when starting this protocol? Do you typically see detox or herx reactions from B6 & zinc?
Thanks so much in advance!
Tracy
In situations like this we go low (like 1/8 a typical dose) and slow and start with one at a time. Zinc must be taken in the middle of a meal to prevent nausea. If someone has high copper I’ve hear feedback they can sometimes have copper dumping when starting zinc. But I seldom see this since my clients are typically also using amino acids.
Hi Trudy
I am 30, tick nearly every symptom. I am working with a holistic Dr for Pyroluria.
The below 2 symptoms resonate very strongly with me. When I was a teenager the stich in my side when I ran became constant. I was wondering if you could explain how these symptoms are linked to Pyroluira as I have been seeing therapists for over a decade to relieve these symptoms with only slight improvement for a short period of time.
9. pain or discomfort between the shoulder blades
13. Upper abdominal pain on your left side under the ribs or, as a child, having a stitch in your side as you ran
Thank-you!
Janelle
These were symptoms Carl Pfeiffer identified in his patients with pyroluria.
9. pain or discomfort between the shoulder blades – this one relates to low zinc levels
13. Upper abdominal pain on your left side under the ribs or, as a child, having a stitch in your side as you ran – this relates to low zinc and low vitamin B6 affecting the spleen and liver
Pyroluria symptoms typically resolve in a few weeks once the optimal dosing is found. Be sure to review the pyroluria chapter in my book “The Antianxiety Food Solution” for details. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Hi Trudy,
Thank you so much for the amazing information you provide regarding Pyroluria. I am forever thankful. I am struggling to get my supplements under control as I have no doctor to assist me. I am wondering what is considered a sever case of Pyroluria? I have tested 35 mcg/dL HPL and just wondering if the 100mg of Zinc and 180mg of P5P I’ve been taking is a good dose? I know about the dream recall and zinc tally challenge, although it just seems I am taking very large doses now and still failing these at home test. I am fearful of upsetting the mineral balance with all the supplements.
Greg
I have not seen a correlation between labs values and dosing requirements. It’s really individualized. I can confirm that 100mg zinc and 180mg of P5P are considered very high doses.
When zinc doesn’t shift we look at copper intake in supplements/diet and from environmental sources. And I’ve had success with clients using pyridoxine instead of P5P or a combination.
All sources of stress need to be addressed too – emotional stress and physical stresses like toxins, infections, food sensitivities etc
The pyroluria chapter in my book “The Antianxiety Food Solution” has additional information – more here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
I have many symptoms of Pyroluria. I have been taking B6 (100 mg/day) and P-5-P (20-40 mg/day) for over 6 yrs. This has not relieved the symptoms. Do I need to increase the amount???
Thank you.
Lois
The pyroluria protocol is vitamin B6, zinc, evening primrose oil and a good copper free multi (with manganese) and sometimes a B complex. The combination and dosing of B6 vs P5P can vary by person but once the correct nutrients in the right combinations are used, we see improvements in a few weeks to a month.
It’s way too much to share here what I cover in an entire chapter in my book “The Antianxiety Food Solution” so I’m going to point you to the pyroluria chapter. My book info https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
I would like to get my granddaughter to have a better diet, but when taking zinc she gets an allergic reaction- I think I recall she gets an “itchy metal mouth”…. What can be done to get her zinc and alleviate the problem- and could it be a problem in and of itself? Meaning is a reaction to zinc emblematic of an issue?
Wow! These comments have much info as well. I am repeating a parasite treatment protocol as soon as my liver numbers drop; the parasitologist doc wants me to take zinc w/2 mg of copper this time to hopefully eradicate Giardia cysts, along with essential oils and a bottle of 500 PPM silver.
My local practitioner, however, wants me to test for copper before starting that and is concerned about consuming that much silver, esp. the 2nd time around.
I just came off a 21-day fast and have recently started adding zinc and B vitamins back in the last couple of days as I’ve read that phosphorus and B vitamins are necessary before adding food back in to help w/digestion.
(I checked off about 24 of the Pyroluria statements as being true for myself.) So lots of questions: Should I refrain from taking any more zinc and B vitamins, since one comment made it sound like it could mess up the 24-hour copper urine test? I’ve resumed it for only 2 days now.
Also, I see that you didn’t mention the urine test for copper. Is there a reason why? Any suggestions as to how to navigate all of this?
Ka
I can’t offer specific advice via the blog. It’s really best to work with your practitioner.
For someone with pyroluria or who scores high on the questionnaire I would do copper testing. I use DHA labs for this and have not used urine testing. Which test/lab has been recommended?
Understood. I think my practitioner uses Labcorp; it is a 24 hour urine test. Thank you.
Dear Trudy,
I hope you can give me a general insight on the dream recall/pleasant or unpleasant dream. Assuming a person has pyrroluria and has strong dream recall, but the dreams are very detailed and also tiring/unpleasant. Does this indicate an imbalance in the b6/p5p ratio ? Any general insight on jow to approach this would be greatly appreciated.
One more question if you allow me. If manganese supplementation(low dosage) worsens low thyroid feelings, could that be because the zinc dosage is still not high enough and/or the zinc supplement has not been taken long enough for it to reach therapeutic levels?
Al
Low B6 causes unpleasant dreams
I don’t have an answer about manganese
I found out I have one NBPF3 gene, which is responsible for enhanced B6 clearance. Besides that I also have one MOSC1 gene, which is a gene, which homozygote, can cause Molybdene cofactor deficiency, but I think, this also is an issue in combination with my homozygote A1298C MTHFR deficiency. SAMe is needed to build this cofactor.Without this cofator, P5P gets deactivated all the time. Because of that I need to take al lot of little doses during the day, because I cannot store it. I take 50 mg capsules now from nutricost. I found out by taking the simplest 23andme test (which is the only one available in my living country Switzerland) and uploading the data at geneticgenie.org, which is for free. Ancestry is supposed to have better quality results though.
Nicolien
May I ask how you learned about the NBPF3 gene and enhanced vitamin B6 clearance? was it geneticgenie?
Sharing this for other blog readers – “The rs4654748 C allele, in the neuroblastoma breakpoint family, member 3, (NBPF3, alternate name AE2) gene had lower plasma PLP levels compared with the homozygous major allele.” – from Genome-wide significant predictors of metabolites in the one-carbon metabolism pathway https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773275/
It would be interesting to find out how common this polymorphism is in pyroluria. Do you have pyroluria or suspect you may have it?
Hello Trudy, I found out about the NBPF3 on the website of genetrace, I cannot find it on their website anymore, but I have a screenshot and found this: https://livewello.com/health-reports/vitamin-b6
I am homozygote for the C allele of the rs4654748. I take 50 mg of P5P about every4-5 hours during the day and every time I wake up during the night, which is about 2-3 times at the moment. I just have a cold and notice an increase. (note I am also homozygote for the MTHFR A1298C) I do however not need zinc anymore, I get nauseous when I take it, so I do not know If I would call this pyroluria (anymore). I also have found research which states that every inflammation depletes Vitamin B and zinc, so this maybe some sort of a vicious circle. I think I have no deficiency of zinc anymore, but still have the Vitamin B clearance problem. I ran my file through genetic genie again, but could not find anything about this gene, I found this by browsing my raw data in 23andme. So I do not know the prevalence.
Hi Trudy and community, I made a website with more information about how I resolved almost all of my symptoms of hypermobile EDS. I might have to move it to another domain, but for the time being it is: https://nicolienjanssen.joomla.com/
I will also create a facebook page
Nicolien
Wonderful to hear your results and thanks for sharing this as a resource. Thanks too for mentioning my work and book!
Hi Trudy! I’ve learned that if you supplement with zinc that you need to also supplement with copper because the zinc supplementation would deplete copper & vice versa. Do you still recommend taking zinc without copper?
Also, if you take a high potency multivitamin, do you still need to take extra zinc & B6 to help with pyluria?
Thank you so much for your response in advance!
Jen
Most pyrolurics don’t need additional copper in supplements. And yes extra zinc and vitamin B6 is typically needed.
Be sure to get my book “The Antianxiety Food Solution” if you don’t yet have it – there is an entire chapter on pyroluria. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/