Low levels of the mineral zinc and vitamin B6 are frequently associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. People with this problem experience varying degrees of anxiety or fear, often starting in childhood, but they usually manage to cover it up and push through. They tend to build their life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.
This constellation of symptoms is often the result of a genetic condition called pyroluria, also known as high mauve, pyrrole disorder, pyrroluria, pyrolleuria, malvaria, and elevated kryptopyrroles.
In Nutrition and Mental Illness, wonderful book written by Carl Pfeiffer in 1987, pyroluria is described as faulty synthesis of heme (a component of hemoglobin, in the blood), resulting in elevated levels of kryptopyrroles (KP) or by-products of hemoglobin synthesis that have no known role in the body. To get quite technical, it turns out that what’s elevated is actually levels of another molecule: hydroxyhemopyrrolin-2-one (HPL). This molecule attaches to zinc and vitamin B6 in the body, which are then excreted in greater amounts than normal in the urine, resulting in deficiencies. Since the body makes 2 million red blood cells per second, you can see how deficiencies can rapidly develop.
Supplementing with zinc and vitamin B6 (and a few other key nutrients) improves the many signs and symptoms of pyroluria. HPL also inhibits synthesis of heme explaining why people with pyroluria often also have low levels of iron or ferritin (the body’s storage form of iron and the first indicator of decreased iron levels) and need to supplement with iron as well.
I cover this in great detail in my book The Antianxiety Food Solution. I devote a whole chapter to it and for simplicity I use the term “pyroluria” in the book, in my blog posts, articles and presentations.
I first learned of pyroluria when I worked with Julia Ross and discovered that I have it. Joan Mathews-Larson covers it in detail in her great book Depression-Free Naturally and I consider her to be a true expert on pyroluria.
It’s not well-recognized in the mental health and medical community. This is the most recent published information on the topic: Discerning the Mauve Factor, Part 1 and Discerning the Mauve Factor, Part 2.
If this sounds like you, here is a link to the Pyroluria Questionnaire from my book. I created this using the work of Carl Pfeiffer and Joan Mathews-Larson, modifying it based on feedback I received from my clients.
Many people are surprised to discover that they now have an answer to something that has plagued them their whole lives. This was certainly the case with me. Here are Madonna’s results, posted on the pyroluria blog post for the Anxiety Summit season 2: How zinc and vitamin B6 prevent pyroluria and social anxiety
I am 55 and have suffered with panic disorder since age 14. My anxiety has gotten so bad I can hardly leave the house at times. I am a woman of faith but had to even give up church, as I could not handle the people. It has been a rough road. I had already given up gluten and sugar. Somehow I stumbled on the word pyroluria. I did start zinc and b6. Also started primrose oil today. I can tell a difference in my mood and anxiety. I am ready to start living again.
I’d love to see your comments/questions if you can relate to any of this. Also, please do share in the comments if you know you have pyroluria and find the nutrients have eliminated your social anxiety and inner tension symptoms.
I only heard about Pyroluria in 2012 when I was diagnosed with the condition after a positive urine test. From memory my results was 23 or 24 and far superior to the borderline level and confirmed positive. I was surprised as I had read a bit about it and didn’t exhibit signs of mood swings and depression. It has to be said that I had also returned a very very low reading on zinc which was something like 6.7umol per litre (when the normal range is 10 to 25). My father had passed away mid 2009 as I was working in a job which was stressing me for the wrong reasons and I had just given my resignation.
In the months that followed I lost a lot of weight and couldn’t manage to regain weight for a long time. Eventually a grounding sheet and a lot of effort saw me put a bit of weight on.
In hindsight I realised I had some typical signs of pyroluria all my life. I was a bit anxious in social situations (I still don’t like them much), I had no appetite in the morning and tended towards anemia all my life. I also couldn’t sleep at night as a child as I kept thinking and worrying, signs I now recognise as anxiety. However I always seek balance and so I started writing my diary at 12 and later exercising in an effort to be tired enough to sleep. I also had a lot of nightmares as a child. As a grown up I rarely remembered my dreams and rarely sleep soundly. I seem to always be aware of what is going on around me.
When I was diagnosed in 2012 I started taking a high dose of zinc and B6 Daily. I’m currently on 60mg of zinc (picolinate) and 150mg of B6, 25mg of P-5-p and some manganese in there. I also take a B complex and 2 capsules of Evening Primrose oil per day (1300mg). I take 2 Betaine HCLplus pepsine capsule with my main meals and I also take a Vitamin D capsule (5000mg per day). Am currently following the Gaps protocol since March to try to heal leaky gut syndrome and I’m convinced there is a gut connection here.
I’d like to see if healing the gut can also change things, perhaps decrease my dependance on taking such high supplements.
I don’t think we (me and my doc) experimented enough with dosage as I rarely remember my dreams now and cannot say that I sleep soundly. He’s pre retirement and I feel he’s not as keen anymore with all that type of experimentation.
I still do need my time alone and I still don’t see opportunities to mix in large groups as fun at all. I’d often rather not go. However physically I’m better. I still have trouble with my iron and had a few blood infusions of iron over the last few years. Do you recommend them? I worry that it could be a stress on the body to have that massive amount of iron going through you veins. Yet it’s effective (and often expensive) usually and 2-3 infusions will be sufficient for 9 months to 1 year. Otherwise I would love to hear whether supplemental iron works. I don’t have great experience with that.
Many thank for this website. I love to read the articles.
Thanks Trudy
Anne
Hi Anne
Gut healing is beneficial for everything but with pyroluria you do need to be on the supps always. Since you rarely recall your dreams and don’t really want to mix in large groups, I’d say you could experiment with higher doses.
I am not familiar with iron infusions but logically it doesn’t sound ideal as it doesn’t mimic how you’d be getting it from your diet. I have good results with iron supplementation of non-constipating forms and making dietary changes (red meat is a great source) and cooking with a cast-iron pot etc
Glad you love the site – thanks for sharing your story. BTW not all pyrolurics have mood swings and depression
Trudy
Thanks Trudy.
I’ll experiment perhaps with a more B6 or P-5-P as I believe these are what cause dream recall. I’m not sure if there would be any point in increasing zinc.
I do eat red meat but haven’t been cooking in cast iron pots so might try that. Will look at iron supplementation as well.
And yes I realise that pyroluria shows up in many different ways and would love to help others who might be affected (including my own family) to get what they need through diet and supplementation.
Thanks again
Anne
Yes, it’s the vitamin B6 /P5P that affect your dreams. I would also look at zinc – the zinc challenge is a very useful way to assess your levels https://www.everywomanover29.com/blog/zinc-deficiency-and-using-the-zinc-taste-test/
Trudy
Hello Trudy,
Thanks for this. I will try to do the zinc challenge test. my current blood test returned 16 for Plasma Zinc and 14 for Plasma Copper.
I checked my Gamma GT and I’m at 12. I notice some of my liver enzymes are a bit up like AST and LDH but a few liver enzymes have been out of range in the past few years just not always the same ones and not overly so. Calcium is a bit low as are lymphocytes but just a touch. ‘
My colesterol is higher since being on the GAPS Diet but also I noticed my HDL went up and my ratio of Total/HDL is 2.5 so i’m not worries about that.
I just find it hard to find the right balance with supplements. When to stop increasing B6, when to take P5P instead of B6 (I’m currenlty adding some thorne research P5P which has 33mg per capsule) to my compounded mix (150mg B6, 25mg P5p, Zinc Pico 60mg and manganese gluconate 15mg. At least the zinc test will help and perhaps trying more p5p might alert me that I need to get a compounded capsule with more B6 and / or P5P.
Thanks again for what you do. I’m currently in Australia on the East Coast (northern NSW) but have been spending time in Vancouver Canada over the past few years (3-4 months) over the summers. Do you know any practitioners here who you would recommend? Kind regards
Chlorophyll is an excellent bioavailability form of iron and almost identical to hemoglobin. Watch the source though. World Organic is very clean.
Hi Trudy I just watched your webinar on pyroluria. I first read about this in Depression Free Naturally Joan Mathews Larson. I started with Joan’s basic balanced emotions formula. My question to you is have you familiarized yourself with her formula on page 154? It seems a bit different than the webinar suggestions,Right off the bat she has both forms of b6(pyridoxal 5 phosphate 50 mg 1 at breakfast and one at lunch,it notes this is equivalent to 500 mg 56) AND regular b6 250 mg one at breakfast and one at lunch. There are many ther nutrients in her formula AND her zinc picolinate starts at 25 mg and says two at breakfast and one at lunch(75mg total).what are your tout on her formula? Do you see any harm in her approach. I’d also like to say she don’t include some of the things listed that you mention BUT some of this may be already in the balanced emotion basic formula for repair.So if you are familar with these two formulas she uses I was hoping you might give your thoughts.
Great webinar btw!
Sharon
Hi Sharon
I highly respect Joan and her work and if her protocol is working for you then I’d suggest sticking with it. There are many ways to get the same results and most practitioners will have their own approaches that they have seen work with their clients. Also, there is no one-size fits all so I would assume that even her protocol would need to be adjusted based on your response
Trudy
I forgot to mention that her balanced emotions formula (antioxidant complex ALSO includes zinc 40mg and b6 pyridoxal 5 phosphate-40mg) as I’m sure you are already familiar. But again the dosages she uses seem MUCH higher…
Hi Trudy,
I was wondering if you could lend any insight into perimenopause and pyroluria. Would hormone swings exacerbate pyroluria symptoms requiring additional B6/zinc, above and beyond the normal protocol during this transition?
I’m currently taking 350mg B6 and 50mg P5P (no dream recall even at this dose) but still feel very symptomatic on some days due to hormonal swings and I wonder if it’s possible to need additional supplementation on those days or is it strictly an issue of low hormone levels that wouldn’t be helped by increasing the B6/zinc.
Also,are there any blood markers for B6 deficiency? I have high MCV/MCH which I’m told could mean folate/B12 deficiency (likely, as I’m compound heterozygous for MTHFR). I also have low alkaline phosphatase which is suggestive of low zinc (even though I already take 45mg).
Thanks.
Hi Paula
Pyroluria is made worse by stress – any stress – and sometimes that can be worse during perimenopause because of life circumstances (kids growing up, caring for older parents, all the life-stresses catching up etc) or biochemical stresses (like nutrient depletion from the BCP – it actually depletes us of B vitamins; and hormone fluctuations). So yes, there is a connection.
It’s a two-way thing – the pyroluria protocol also helps even out the hormone fluctuations so getting this optimal should help. You may need more vitamin B6. One marker is low GGTP (<10). There are also markers on the organic acids test, and Spectracell would be an option.
You may want to consider adrenal support too (progesterone steal ie everything goes to making cortisol at the expense of progesterone) and looking into serotonin and/or GABA support (as this helps balance estrogen and progesterone). Here is the amino acid questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
I’d also look into your zinc levels and get them optimum for optimal hormone balance. Use the zinc challenge.
Herbal support for the sex hormones may help too.
Trudy
Thanks Trudy. I really appreciate your response. It’s very impressive how many posts you respond to, and so quickly and thoroughly. It’s incredibly generous of you to make your knowledge and expertise available to so many. Thanks again.
You’re welcome Paula! do come back and let us know how things go for you
It is so exciting to see how many people you help with your work! XOXO, Katherine.
Thanks Katherine – I do LOVE what I do and love that I can help to change lives! I SO clearly remember how awful my anxiety and panic attacks were – no-one should have to live with that
Thank you Trudy for always informing me and educating me on health and nutritional information.
Trudy you are a font of knowledge. Until now I had never heard of high mauve, pyrrole disorder, pyrroluria, pyrolleuria, malvaria, and elevated kryptopyrroles. What a wonderful resource your blog has become!
Thanks Heidi – just like I said to Mitch, you may find this to be of interest for the corporate folks you work with. It makes networking, office dynamics, running meetings and public speaking a breeze for those with social anxiety and/or introversion
where do you suggest getting tested for this? i would like to test myself and my 8 year old. Does tie in with MTHFR? we both have the ct1677 mutation. Thank you
Hi Susie
I use the questionnaire and response to supplements as we often see false negatives with the testing. I am hearing that more and more people with pyroluria have one of the MTHFR defects – so thanks for sharing and adding to the “database”
Trudy
I’m unable to find your recommendation for a light box or lamp. I read it earlier today and thought it was in response to this article. If you could please repeat that recommendation, I would appreciate it. I think the issue is low serotonin and just started tryptophan. I’m thinking a light source would also help.
Hi Sharon
I posted something here https://www.everywomanover29.com/blog/winter-blues-sad-holiday-stress-sugar/ but will be doing a complete blog post on the topic shortly
Trudy
I’m very excited by your blogs on pyroluria and would be grateful to know whether anyone in the UK is testing effectively for this. Or is it enough to score high on the questionnaire? My score was 20; I started suffering from panic attacks when I was 7 (now 60) and although I manage reasonably well by living a quiet restricted life it isn’t what I long for : ). It would be so wonderful to be able to enjoy more of life for whatever time is left to me. BTW have bought the book so that I can follow the protocol and also ordered some liquid zinc to test that. Also, do you know a good nutritional therapist in the UK that I could work with?
Thanks so much for all your efforts on behalf of people with anxiety.
Hi Sue
You really can do better than managing reasonably well! I rely on the questionnaire and response to the nutrients simply because I’ve found testing to not be that reliable. And I’m afraid I don’t have a UK referral for you. You should be able to follow everything in the book with no problem – it was written with someone like you in mind!
And you’re welcome!
Trudy
Clearly you have an audience you are providing
quality information to who need it and educating the rest of us. Amazing content!
Thanks Mitch – I’m pleased you find it useful. You may be interested to find that many of your coaching clients may benefit from addressing pyroluria – it makes networking and public speaking a breeze for those with social anxiety.
Hi Trudy, I got the results back for my kids pyroluria tests. One is 9.42 for both corrected and uncorrected and the other is 9.08 corrected and 13.89 for uncorrected. Does this mean they have pyroluria? It said 0-9 was the reference range from Direct Helathcare, so they said both were high.
Thanks!
Hi Lori
It sounds like this is a positive but I suggest you have your doctor review these results with you.
Do you and your kids have the pyroluria symptoms?
Trudy
I’ve heard you mention pyroluria many times over the years, what sparked my curiosity in this particular post is that you mentioned that it normally begins in childhood. Do you have any idea of how common pryoluria is among children?
Hi Tiffany
There is varying information on the prevalence as it depends what type of practice you have. I work with women and it’s more common in girls/women so I see these symptoms or a mild form with most of my anxious female clients.
Here is an excerpt from my book on this:
“Joan Mathews-Larson, considered an expert on the subject, reports the prevalence as follows: 11 percent of the healthy population, 40 percent of adults with psychiatric disorders, 25 percent of children with psychiatric disorders, 30 percent of people with schizophrenia, and 40 percent of alcoholics. Abram Hoffer worked primarily with schizophrenic patients, but he found pyroluria was also present in 25 percent of his nonschizophrenic patients, including adults with anxiety, depression, and alcoholism, and children with learning disorders and behavioral disorders. Pyroluria is also present in about 46 percent of people with autism spectrum disorders and 71 percent of those with Down syndrome (McGinnis). I work primarily with adult women who are anxious, depressed, or both and have found that at least 80 percent of my clients with moderate to severe anxiety have a large number of pyroluria symptoms.”
Hope this helps.
Trudy
I know you recommend evening primrose oil. Doesn’t that have an estrogenic effect? Is there a good alternative?
Hi Lori
Here is a great response to this question on Dr Andrew Weil’s blog – he is ok with it http://www.drweil.com/drw/u/QAA401109/Is-Evening-Primrose-Oil-Safe-After-Breast-Cancer.html
On the Sloan Kettering site “Although evening primrose oil does not have intrinsic estrogenic properties, some commercial products combine evening primrose oil with phytoestrogens. Therefore patients with hormone-sensitive cancer should use evening primrose oil products with caution.” http://www.mskcc.org/cancer-care/herb/evening-primrose-oil
If you do have concerns I’d recommend working with someone and testing fatty acid levels and estrogen levels before and after supplementing. That way you’ll know for sure
Trudy
As always, you are shedding light on a topic most people are unaware of. Thank you for all you do. I will share this so others may find it helpful.
Thanks for sharing Jessica – I appreciate it
Thank you Trudy for always sharing your expertise and how to overcome these issues without tons of prescription drugs.
Hi Trudy,
Great article. I love how you cover the subject material in both plain English and tech-speak for those that want it. There’s enough information here to get anyone that needs this help going in the right direction. I think it’s great to offer these options to people suffering from these symptoms.
Thanks for sharing! Michele
Thanks Michele – I’m so glad the plain English and tech-speak appeals to you. I do like to make sure this info is accessible to everyone and then back it up with the research
Trudy, I so appreciate you sharing so generously of your time and expertise. I recently started B vitamins after my doctor recommended it in preparation for cancer treatments. Is there anything you recommend I take to keep my body healthy through this?
Tandy
I wish you all the best with your cancer treatments. This is not my area of expertise so I’d find a cancer nutrition expert to work with. Dr Nalini Chilkov and Dr Lise Alshuler are two great recommendations.
In the meantime I’d focus on nutrient-dense real whole foods, organic produce, grass-fed meat, wild fish and things like nourishing bone broths and healthy fats. And of course avoiding the sugar.
Trudy
Trudy, I always read that we need omega3 as in fish oil but we should avoid omega 6. Isn’t evening primrose oil omega 6? Should we also take fish oil to balance or just take the EPO for a short time? I tested high on the pyroluria questionarre, and low on the zinc taste test. I am taking 50 mg of zinc and not sure how much B6 to take.
Thanks for your help. I’m fascinated by your information!
Hi Lorraine
Pyrolurics often don’t need to supplement with omega-3s but do need additional omega-6s in the form of evening primrose oil (which also enhances zinc absorption). I start my clients on 100mg B6 and have them increase to 500mg based on dream recall and symptom resolution. We may have them switch to P5P if the vitamin B6 doesn’t help
Pleased to hear you’re fascinated by this! It’s so powerful that we can change how we feel by simply taking a few key needed nutrients!
Trudy
Hi Trudy,
I have suffered from anxiety/ panic attacks for the majority of my life which started around the teen years and turned into full panic disorder by 20 years. Through the years of research I have done pyroluria has come up several times but I have always discounted it…..that is until I read your blog here. I did the questionnaire and checked a lot off! So the next thing I did was get tested and luckily there is one lab in the US that will ship to Canada. I just got my results and yes I have pyroluria!! Now I feel there might be hope for me. I have 2 sisters that are now going to test themselves as well. Thank-you so much for your knowledge and sharing it with everyone. Even though I am a clinical Herbal Therapist I think I could use your expertise in pyroluria treatment. Thanks again, Lori.
Hi Lori
How wonderful to be getting answers and how super of you to come back and share your insights and results. I am so glad you have hope and this comment of yours will gives others hope too! I love that you’ve shared this info with your sisters too.
Would you please share which lab you used so others in Canada have it as a resource?
And do come back and let us know how you’re doing.
If you need my expertise to help you I’d be happy to do it via long-distance consulting.
Trudy
Hi Trudy,
The lab I used for testing kryptopyrole was direct health access and the website is found at pyroluriatesting.com. I will check back in and let everyone know how the treatment is going. Thanks again!
Lori
Thanks so much for sharing Lori. It’s really good to hear the lab results correlated with the questionnaire. Many people score high on the questionnaire and then get a test done and it’s negative. It seems to be a false negative because they get on the supplements anyway and see improvements. Sadly many do the test and when it comes back negative they assume it’s not pyroluria and they don’t get on the supplements. I always say if you score above 15 why not give the nutrients a chance and try them even if the test is negative.
Hi Trudy,
I love that you continue to post about pyroluria. Thank you, from someone who has it (and found out about it from your blog)!
I have a couple questions:
1. I want to add back in nutritional yeast flakes (NYF) to my diet (they are very high in B vitamins). I took them out because I had read they are high in copper (I think that was from Ann Louise Gittleman’s book, Why Am I Always So Tired?) Can you let us know if NYF are ok and that copper is not an issue with us low-zinc people? I clearly need more B vitamins and these are such a fantastic source.
2. In continuing to research pyroluria, I came upon data that says we may be deficient in biotin (McGinnis et al articles, 2008). Since I have some of the symptoms of low biotin I want to start adding it in. Do you have any info about biotin deficiencies and pyroluria (for ex. how much do I start with? Is there a bio-active, preferred type?)
Thanks so very much for your incredible work, Trudy,
Laura
Hi Laura
Sorry about the late response…I saw this and then got side-tracked 🙂
(1) I don’t see nutritional yeast flakes being an issue at all
The ratio of zinc : copper is excellent i.e 3 : 0.1 = 30x
(http://nutritiondata.self.com/facts/custom/1323565/2)
Compare this with:
Pumpkin seeds 10:2 = 5 x (the best nut/seed in terms of high copper)
Almond 4.5 : 1.7 = 2.6 x and
Cashew 0.8: 0.4 = 2 x (typical for most nuts)
(2) I have my pyroluria clients get biotin (around 300-500mcg) in a good multi and B complex. I have not heard of excessive biotin deficiencies in pyroluria but now you have me curious to dig further! One connection I do know of is low biotin and grey hair and it could be a factor in the stretch marks we see in pyroluria (although zinc is a factor with both too)
I’d love to hear what symptoms of low biotin you have – skin, hair, nails and/or nervous system issues and/or blood sugar issues? And what improved when taking biotin?
Trudy
Dear Trudy,
In the comment section – on a different posting of your blog – I had referenced a psychiatrist whose blog I follow:
Here is a great Boston doctor (psychiatrist) who was a GAPS practicioner and has now shifted to an Auto-Immune Paleo perspective: http://www.judytsafrirmd.com/
I forgot to also mention another awesome psychiatrist whose blog I follow; she is also (coincidently) from Boston. Her name is Emily Deans, M.D. and her website is “Evolutionary Psychiatry.” She practices a Paleo diet herself and provides cutting edge info about all things mental health, food-related, vitamins, minerals, etc. In other words, her bias is towards using food as opposed to only using meds:
http://evolutionarypsychiatry.blogspot.com/
I did a search on her site and found ALL of these posts from Emily about zinc:
Zinc!
http://evolutionarypsychiatry.blogspot.com/2010/07/zinc.html
Depression 1
http://evolutionarypsychiatry.blogspot.com/2010/06/depression-1.html
Depression 2 – Inflammation Boogaloo
http://evolutionarypsychiatry.blogspot.com/2010/06/depression-2-inflammation-boogaloo.html
Zinc, Depression, and Everything
http://evolutionarypsychiatry.blogspot.com/2010/07/zinc-and-depression.html
Zinc Clarity
http://evolutionarypsychiatry.blogspot.com/2010/07/zinc-clarity.html
Zinc Revolution
http://evolutionarypsychiatry.blogspot.com/search?q=zinc
Zinc Deficiency and Children with Autism
http://evolutionarypsychiatry.blogspot.com/2012/02/zinc-deficiency-and-children-with.html
More Zinc Nitty Gritty
http://evolutionarypsychiatry.blogspot.com/2013/09/more-zinc-nitty-gritty.html
IBS, Fructose, Depression, Zinc, and Women
http://evolutionarypsychiatry.blogspot.com/2010/08/ibs-fructose-depression-zinc-and-women.html
Zinc at Psych Today
http://evolutionarypsychiatry.blogspot.com/2013/09/zinc-at-psych-today.html
I thought it would be helpful for you to, at least, know about Emily Deans …given the zinc research you are both doing!
A search for pyroluria turned up empty; but, the zinc info is quite useful and well-presented…
Laura
Thanks so much for sharing all of this – so much great information!
Trudy
I tested normal for zinc and copper. My b6 is at 100% BUT I tested positive and high for kryptopyrolles so I guess I have pyroluria. My nutritionist just put me on 120 mg. of zinc (4 tabs. per day). The brand I take also has 3 mg. of copper. Shall I switch to NO copper or do I need to be tested?
Hi Nancy
I would suggest talking to your nutritionist about finding a zinc supplement with no copper – I like Optizinc. 120mg is a very high dose of zinc – I start my clients on 30mg and slowly increase based on the zinc challenge.
Trudy
Hi Trudy, thank you for this information. For those of us that score high and would like to give the 3 recommended products a try, what dosing would you recommend initially for B6, EPO, and zinc? Do you prefer the B6 to be within a B complex or should it be just B6? Do we have to take zinc test or can we just start with lose dose and see how we feel? How long should it take before symptoms should subside. Thank you!
Hi Susan
I start my clients on 100mg vitamin B6 (over and above a B complex and good multi with no copper), 30mg Opti-zinc and 1300mg EPO.
I like to do the zinc challenge but it’s not necessary.
Many people notice symptoms reducing in a week or so. Obviously there are many factors at play (like absorption, how much you need, the form, your stress levels etc)
Keep us posted on how you do
Trudy
What a relief to find out what maybe wrong with me. Ive always suspected that many of these symptoms now associate with Pryoluria have a genetic component and are not just in your head. In my case including a diagnosis of ADHD. I went off the meds in a month. Too expensive and not as effective as street versions. which worked too effectively. stayed away from them as well.
I find this inner tension to be quite tiring. Not sure if that is typical. Made doing almost anything, especially in public, school work etc draining. I went through great effort and great rest. As I have aged these bouts became harder and harder and I was advised by my ND that my adrenals were drained.
I accidently discovered your videos on YouTube searching for additional help for my adrenal fatigue. I was already taking 200o MG Lypo C and 500 mg lypo gluthahione. B complex, John Grays Superminerals and Superfood shake that is a multivitamin. PLus 25mg Lithium oratate for stress. Gaia adrenal formula .Typical with adrenals issues is I wake up as the day goes on. Don’t sleep well. No dreams Not ready for breakfast until 10. Which is a no no with adrenal fatigue and never realized that it had a cause.
I added 30 mg of OPTIzinc, 100 mg P5P, 1300 MG OF EPO four days ago, in the with breakfast. Yesterday I bumped the Zinc to 60mg. I am removing copper foods that were daily diet like chocolate, avocado, etc. First few days I felt very little … bumping Zinc felt woozy. Then calm, like a tranquilizer effect. Similar effect today.
Adrenal fatigue is tiring so one of my goals is more energy. In the past one of the reason I gave myself for hiding from social events was they took too much out Energy wise. Will the easing of tension eventually release energy. Several other sites suggest taking a protocol several times a day? DO you suggest once a day? How important is removing copper from the diet, We need some. The John Gray Superfood shake has some in it. Breakfast is challenge as you can imagine would not like to give it up.
Thanks for your help
Kevin
Hi Kevin
It is a relief when you start to find answers and I’m so pleased you’re getting them! I hear you – the inner tension is very tiring. I remember it so well! I love hearing this: “calm, like a tranquilizer effect”
As you continue the pyroluria support you should find social events are less energy draining. This may also be related to the adrenal issues you mention so retesting here and making sure they are healed is key + figuring out what the stress was/is that wiped them out (life stresses, food sensitivities, heavy metals etc).
As my clients increase the pyroluria supps, I have them do breakfast and lunch. And copper removal from the supplements and shakes (find one with no copper) can be key for many pyrolurics. And making sure the diet is not too high in copper either.
Trudy
Hi Trudy, thank you so much for sharing your experise!! I started the protocol last weekend of B6, Opti-Zinc and EPO and am curious about sleep patterns. I typically sleep like a baby and this week I’ve been waking up more than usual. Could any of these new supplements be in the stimulating department can cause this? Many thanks!!
Hi Susan
Any time you start new supplements and get an adverse reaction (like sleep being affected) I’d suspect the supplements. With these 3, some find their sleep is better, and some people find their sleep is even better when taken at bed time. There are a few people who find vitamin B6 at bedtime is too stimulating.
You don’t mention when you’re taking them and how much so it’s hard to know for sure. Best would be to stop them all and add one back at a time
Trudy
Is there a way to test for the gene of pyroluria. e.g. i’m considering the 23andMe genetic test. I wonder if that could give a further clue (other than the symptom list you provide) for a gene connected to it?
Thank you
Claire
I like the 23andme gene testing and am now recommending it to all my clients. Many people with MTHFR so seem to have pyroluria so that’s a start. There is a DYM gene which is associated with 1.16 times higher odds of schizophrenia. The original population that Carl Pfeiffer worked with schizophenics and we know about 70% of those with schizophrenia also have pyroluria.
Trudy
I received this comment from a reader who asked that I share this:
“I read, with interest, your blog on pyrroluria.
Giving B6 and zinc is obviously helpful, and you may consider recommending high B3 as well. The original work on mauve factor and KP was done, I think, by Abram Hoffer and can be read about in his book Vitamin B3 Schizophrenia Discovery Recovery Controversy.”
I find that 500mg to 1000mg niacinamide to be very helpful for many with pyroluria, especially if they also have low histamine/histapenia.
Hi Trudy
I have recently been diagnosed with Thin Basement Membrane Disease (via Kidney biopsy) and I also have Pyrrole Disorder. My kidney symptoms (hematuria and proteinuria) have significantly improved since I started treatment for Pyrrole Disorder. I read that TBMD is a form of connective tissue disease, and I was wondering whether there may be a link between connective tissue disease and Pyrrole Disorder? I am also trying to work out if my TBMD symptoms will return during another pregnancy (as they become very high during my last pregnancy) or if I might be able to keep them under control with Pyrrole Disorder supplements.
Thanks for your advice!
Bridgette
Hi Bridgette
I am not familiar with Thin Basement Membrane Disease but am so pleased to hear that your kidney symptoms have significantly improved since you started treatment for Pyrrole Disorder.
Yes there is a connective tissue link to pyroluria – many have joint pain, joint issues and other connective tissue problems, skin issues/stretch marks – likely directly related to the low zinc.
I would suspect the pyroluria protocol would help the TBMD during your next pregnancy but don’t know for sure. I would expect you may need to monitor your pyroluria symptoms and maybe even increase the supps as the baby’s nutrient needs increase. I’d recommend working with your doctor on all of this and doing some nutritional testing to be sure all is well since this protocol has not been studied during pregnancy.
Would you mind sharing how you discovered pyroluria and your symptoms? how did you score on the questionnaire before and now? is your social anxiety better too? And what has your supplement protocol been? and how quickly you saw results?
Thank you! This will help me learn more and be able to share with more people. I’d love to be able to share some of this during my interview this season 3 of the Anxiety Summit so will do some reading on TBMD and come back and post what else I find
Trudy
Hi Trudy
Thanks for your help. I appreciate any information you can find. In answer to your questions:
– I found out about Pyrrole Disorder from a colleague after my treatment for postnatal depression was not working very well. This colleague was recently in the same situation and diagnosed with Pyrrole Disorder.
– I have always had mild symptoms, but they became chronic during the last trimester of my pregnancy and continued until I started treatment for Pyrrole Disorder. I had terrible insomnia, paranoia, panic attacks, chronic bleeding noses, fatigue, night sweats, outbursts of anger, joint pain, constant thirst, IBS, and recurring infections. My social anxiety has improved slightly but is def still there.
– before I started treatment for Pyrrole Disorder (6 months ago), I rated 33 on the Questionaire. Now I rate 14 on the Questionaire. When I was diagnosed with Pyrrole Disorder I scored 13.2 (borderline) in the urine test. My serum zinc was 13 and my serum magnesium was 0.66. I was taking about 30mg daily of zinc for 3 months before being tested for PD.
– My current supplements include: 100mg daily of zinc piclinate; 100mg daily of magnesium glycinate; 100mg daily of Vit B6; 20mg daily of P5P; 600mcg daily of Biotin; 1,000mcg daily of Vit B12; Metagenics Mineral Essentials; Vit D; Vit E; and Vit C.
– I started to see results about a month after starting treatment for PD, but it has been a gradual improvement. I am now feeling better than I have ever felt in my life (in terms of energy, less anxiety and improved sleep).
– I have been seeing a doctor who has been a great help with my supplements. We have increased the zinc very gradually.
Hi Trudy! I was diagnosed with Pyroluria. Was taking P-5-P(got up to 90mg, and still didn’t remember dreams), then started to feel toxic so I stopped. When I stopped I finally remembered my dreams, but they were vicious nightmares all night. Should I keep the P-5-P in, but lower the amount? Thank you Trudy for all that you do 🙂
Carol
I would suggest working with your doctor on this since he/she diagnosed you. I’m not in favor of doing something that causes bad effects. I’m not sure what the toxic effects are that you refer to. Typically too much B6 causes peripheral neuropathy that reverse when it’s stopped. The pyridoxine form may be better tolerated by some people
Trudy
Hi Trudy,
Thank you for all that you do! I’ve had anxiety all my life- GAD as they call it. I was always very shy
as a child and no one ever thought about diet, supplements, imbalances, etc. I’ve had chronic fatigue since 2007 whereupon I basically don’t leave the house except for occasional unhelpful doctor appts. I have extreme
light sensitivity (esp to fluros) along with scents, noise, foods, mold, dust, pollen, etc.
I get neuromuscular saliva testing, which I send to California for protocols involving herbs, supplements and foods but I’m not yet well.
My questions about Pyroluria are:
1. How do you know if you need omega 3’s or not? Certain tests?
2. How do you know if you get protein from things, or if you need more protein, or just cannot digest it? Is this also related to iron levels?
3. If you take the 23andme.com genetic tests, will you know about the methyl b problems, and whether you should take any B vitamins?
4. Why don’t you like green smoothies? Is there a link to those you do like? (I know we all have different sensitivities)
5. Do histamines have any connection to this? (I know some foods are high in histamines)
Many thank you’s!
L
Laila
I’m sorry to hear you’re not well
1. How do you know if you need omega 3’s or not? A fatty acid from a lab such as Genova/Metametrix
2. How do you know if you get protein from things, or if you need more protein, or just cannot digest it? Is this also related to iron levels? Looking at iron is one way, plus zinc and neurotransmitter status (I use the questionnaire https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/). Blood markers total protein, globulin can also be looked at. Having 20-30g of animal protein per meal seems a good starting point for many of my clients.
3. If you take the 23andme.com genetic tests, will you know about the methyl b problems, and whether you should take any B vitamins? yes
4. Why don’t you like green smoothies? Is there a link to those you do like? (I know we all have different sensitivities) – too much kale can be a problem if oxalates are an issue, too much spinach can lead to high iron. Everything in moderation
5. Do histamines have any connection to this? (I know some foods are high in histamines) – yes for some people. Check out my interview here https://www.everywomanover29.com/blog/anxiety-summit-histamine-anxiety-depression-schizophrenia/
Thank you so much for responding Trudy!
Do you come across cases of extreme fluorescent light sensitivity (seizure-like symptoms: twitching eyes, foggy feeling, way too much stimulation) and, if so, what has helped them?
I listened to so many of your great interviews at the last summit but I missed that histamine one and the link above just goes to a clip. Is there a link to it?
Lola
I have not come across cases of extreme fluorescent light sensitivity but would refer you to Sharon Heller’s work https://www.everywomanover29.com/blog/anxiety-summit-hidden-causes-anxiety-drugs-illness-light-balance/
Sorry you missed it. Now that the summits are over, the calls are available for purchase https://www.everywomanover29.com/storemenu.html
Hi Trudy
Just discovered your website after hearing your talk on the recent Gut Health summit. I am currently researching what to do with my daughters anxiety which seems to be starting to manifest itself physically. She is 7 and has had a history of migraines, gut issues, and mood swings. She has just started having anxiety at school in the classroom around social situations and tells me that her hands shake, she feels tingling, feels nauseous and sometimes feels sad or feels like crying. I looked these symptoms up on the web and it pointed me to anxiety and/or panic attacks. I am not sure what to do or where to turn first. I talked with her teacher as she had put her next to a girl who my daughter has had past issues with and this is what I believe started the recent episode. She has since been moved away from that girl and I am having the school counselor meet with her too. She is fine at home and on the weekends and just has symptoms mostly at school. So just wondering where to start: perhaps with solving her gut issues (brain-gut connection) or wondering if she might possibly have pyroluria or whether to try some Zinc and B6 or GABA. I was also very shy as a child and anxious too – and have recently been working with a functional medicine practitioner to work on my gut issues (and anxiety too). My son is also very anxious – so a genetic condition might explain this. My husband was also shy as a child as well.
Anyway, I plan to read your book to find out more about this condition but would love to hear any advice you might have.
Thanks
Jackie
Jackie
I can’t consult via the blog but recommend doing the pyroluria questionnaire yourself and then seeing if your daughter resonates with many of the signs and symptoms. Based on your description of her (and the family) it’s very possible. I like to have my clients start on the pyroluria protocol and amino acids while also looking deeper for gut issues etc.
Many moms I work with address their issues with the nutrients first and then feel more comfortable helping the rest of the family.
Of course, all the rest goes without saying – real food, organic, blood sugar control and quality protein, no gluten/sugar/caffeine etc. This is all covered in my book
Hi Trudy
Thanks so much for responding. I just started reading your book today. I have been taking 5-HTP for a couple of months myself and it made a huge difference to my anxiety. My husband just started trying it yesterday and his mood has improved dramatically. My husband and I are on gluten-free diets and I quit caffeine and refined sugar too and we eat mostly organic, real food. So in terms of B6 and Zinc what would the correct doses be for 7-yr and 12-yr olds? Would you base it on their weight compared to an average adult? Their multi-vitamins have minimal of both these nutrients – on the order of 1-5 mg. I have ordered some zinc sulphate solution to test our zinc status. My daughter met with the school counsellor yesterday and they made a good connection. She will meet with her every week and give her tools for coping so I am very happy about that. But I will follow your advice on the pyroluria questionnaire and follow up on that and let you know how it goes.
Thanks
Jackie
Hi Trudy
I’m through the Chapter on pyroluria in your book now. I did the pyroluria questionnaire and scored at 23! So I guess there is a strong chance that I have it and my daughter too. I also just discovered that I am not methylating well so may have MTHFR defect. I am taking a bunch of supplements for adrenal fatigue and a GI protocol for parasites so will try adding in B6 and Zinc to bring up to your recommendations.
Still trying to figure out how to add supplements for my 7-yr old. Anyone have ideas on how to get B6 and zinc into a 7-yr old?
Thanks
Jackie
Jackie
Glad you’re finding answers for you and your daughter! I have moms open up capsules or use a liquid form of the supplements.
Hi Trudy
Thanks for the encouragement. Just following up on the Zinc Taste test. I got my whole family to try it today. My daughter had the strongest reaction (probably level 3), my son and I were level 2 (furry/dry sensation after a bit) and my husband was the least affected by it (level 1 perhaps!). Interesting.
Jackie
Is it possible to have high serum zinc with this condition?
Nina
Serum zinc is not an accurate marker of zinc status so potentially yes
If serum zinc is not an adequate indicator of zinc status then what is?
Gwen
I use the zinc challenge, alk phos <70 and low zinc symptoms - and then response to zinc supplementation
Hi,
I have just been told I have Pyrrole Disorder. I have suffered for over 11years with Depression & Anxiety and been on so many different medications. Im am off all medications now. I have been giving a list of vitamins to take including Vit b6, zinc, biotin, magnesium, vit k, vit c, magnamies, b5b. Will i feel better soon, No one seems to know anything about it.
Thank you.
Laura
I’m glad you’re working with someone to help you now. The pyroluria protocol typically works in a week to 4 weeks. I would suggest also looking for other underlying causes that may be factors in your anxiety and depression https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
Is there any foods I should avoid? Cereal, breads.? Thank you
Many people with pyroluria also have gluten issues. With everyone with anxiety I look at all possible contributing factors and address them too https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
Thank you Trudy, I hope I find some relief soon.
I keep reading that pyroluria is a genetic disorder, but has the genetic basis for it in fact been identified and if so is it on 23andme? Candidly, the science here seems somewhat soft, particularly as some studies decades ago failed to find the presence of pyrolles in schizophrenics claimed by Hoffer, and there doesn’t seem to be a single placebo-controlled study in this field.
Peter
I agree the science is lacking and I’d love to see more research. I am not aware of a specific marker on 23andme. I also don’t rely on urine testing and simply see major benefits in my clients who score high and get on the protocol.
Hi Judy, I am an alternative Healthcare practitioner who had to stop working 3 years back do to health issues but mostly due to extreme anxiety, panic attacks, and social phobia that literally came out of nowhere. I’ve been doing a lot of different things and have gotten so much better but have still been dealing with anxiety and social phobia almost every day. Last year I stumbled across this disorder and decided to test myself. The test came back negative so I just forgot about it. I stumbled across this disorder again a few weeks ago and I came across your questionnaire and after doing the questionnaire it came back as 30. I decided that there really is no harm in taking b6 and zinc so I decided to start the protocol even though my test came back negative. I’ve been taking 44 milligrams of zinc and 50 milligrams of p5p. I’ve been taking this for about 2 weeks and haven’t noticed any positive improvements. In fact comma a lot of times after taking the think I feel mild depression and or agitation. I know you have never personally worked with me so you might not be able to offer a bunch of insight but I’m hoping that maybe you could shed a little light on what could be going on. Perhaps I’m just wanting resolution of symptoms too soon? Just to give you a little bit more information I eat 100% organic and gluten free, I avoid nightshades, dairy is limited. I’ve tried bio identical hormones which made me worse. I am, however,on natural desiccated thyroid since I found out about a year ago that I was hypothyroid. Thanks in advance for any insight or guidance you can offer.
Lia
With the correct combination of nutrients my clients typically notice symptom improvement in a week or two. I would suggest reviewing this list to see what else may be a factor https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Thanks, Trudy! I would say yes to a lot of those, but have also addressed most of them as well. I am not taking any primrose oil…..is that a major problem? Also, are you taking on any patients at this time?
Lia
Evening primrose oil helps zinc absorption and GLA is frequently low in those with puroluria – so yes!
I have a waiting list right now (you can sign up here https://www.everywomanover29.com/services.html) and am in the process of training other nutritionists to come on board and assist.
Dear Trudy,
Thank you so much for this article. I’ve actually suffered with great social anxiety and delusional thoughts that I suppressed through my teenage years. I’ve always had bad joint problems, stretch marks and other symptoms of pyroluria. After graduate school and much stress of having kids I was also hit with chronic fatigue about 2 years ago with devastating multiple varied symptoms (fatigue, eye pain, debilitating insomnia that comes in phases, episodes of dizzines, and the non-stop brain fog which is arguably one of the worse symptoms as it feels like I am living life in a dream state).
I changed my lifestyle dramatically and performed numerous amount of tests with almost everything coming back normal. For example I removed gluten, sugars, coffee, and addition of good nutrition). This overall seemed to help a bit. Gluten removal seemed to be a big factor although it was far from a cure
Only very recently I found out about pyroluria and tested positive from DHA labs where I dropped off my sample (I live close by the lab). Interestingly, my brother (late teens) suffered from a schizophrenic episode early this year. I had him go through nutritional assessment, and it turned out he was very deficient in Zinc (RBC zinc). I have a good feeling that he is also has elevated kryptopyrroles like I do. I will be starting a treatment plan very soon which will include a holistic approach (healthy food, water, exercise) with the addition of increasing amounts of zinc, B6, Omega6.
Take care
Kind Regards,
MY
My pyrolauria symptoms have increased despite’s my zinc/ b6 and epo protocol , I recognize that it is probably the added stress . I was reading that manganese and niacinamide could also help but haven’t see how much I should take . Also do you know of any places or practitioners that would be able to do consultations via internet? I live in Belo
Horizonte Brazil and i have not found any thing here and as I don’t speak the language that also makes it difficult . Any help would be appreciated
Before I lose my mind! Also I can not sleep without taking Benadryl at least half of the month is this related?
Kelly
Stress is a big factor so I’d address this if possible and consider looking at amino acids like GABA and tryptophan to help with this and sleep (https://www.everywomanover29.com/blog/anxiety-amino-acids-overview/). A good copper-free multi with manganese is often enough and if someone has adrenal issues I like to use 500 to 1000mg niacinamide.
I will be opening up my virtual consulting in a month or so. You can get on the waiting list here https://www.everywomanover29.com/services.html
In the meantime here is a troubleshooting blog https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/
Also no gluten, no sugar, no caffeine, real food, quality animal protein, eat for blood sugar control and all the basics.
Hello Trudy! I’ve commented on this thread before a few months back. I’ve also signed up for your wait list. In the meantime I have a few questions for you if you don’t mind. I explained a lot of my history in the previous post. I’ve been taking anywhere from 44-66 milligrams of zinc a day
I’ve also been taking p5p at the dose of 17mg a day. My first question is I feel like a lot of times the p5p causes a surge of anxiety with me (general anxiety and social phobia are my major concerns). I’ve always had really good vivid dreams and great dream recall so I’m wondering if I really need to take the p5p? My next question is I have a concern about causing copper deficiency. On my hair Metal’s test that I did back in 2013 it showed low copper although many things I’ve been reading say that that could just mean it was all stored and accumulating in my tissues. I’ve also been reading about how the blood tests are not very accurate in determining high or low copper levels. I’ve had a lot of horror stories about how doses as low as 15 milligrams of zinc a day have cause copper deficiency in adults. Is my concern about causing a copper deficiency warrented? Should I do some sort of screening tests before increasing my zinc? Since our last correspondence I’ve also started taking evening primrose oil at night. Although I haven’t seen great results with zinc, p5p and primrose oil I wonder if perhaps it’s because I’m still consuming High copper things such as avocado and chocolate?
Lia
I don’t have my clients take something that makes anxiety worse. Copper deficiency is a theoretical issue I have yet to see in practice with those with pyroluria since we get copper in our diets
Thank you for that! I am looking into finding a good multivitamin. One thing I have noticed is since I’ve been taking extra b6 and zinc I’ve had terrible heartburn . Is there a solution for this?
Kelly
I’d look at the other ingredients and also do one or the other to isolate which one is causing the issue.
HI,SO this explains the past 55yrs Hoping to find a doctor in Boston area?
Hi Trudy,
I’ve listened to your presentations on Youtube and they’ve been very useful.
Almost of all the symptoms apply to me.
Whilst I can get testing in the UK, I have no faith in the results because of the sample having to be sent in the post. Also, doctors here have no knowledge of it.
I find that sugar has a disastrous effect on my mood and it gets worse with age.
I’m going to go back on the zinc/b6 anyway.
Ed.
Hello Trudy!
If patients get the Kryptopyrrole test done, which test do you prefer the random or the 24 hr?
Thanks so much for all you do!
Teaching me a lot
Melissa
I’m not familiar with the 24 hour urine test for pyroluria. Do you know does this?
Health Diagnostics and Research Institute.
Health Diagnostics and Research Institute.
Hey!
Thank you for your work. I also found my way to Julia Ross a couple of years ago and William Walsh recently. Following a Pyroluria protocol is changing everything for me. I will admit I am doing it on my own (and aware of how high b6 has issues and reduces magnesium levels, potential depletion of manganese, etc.) I know it is best to work with a practitioner, but is it very risky to go it alone? After decades of feeling awful and having it grow worse recently to the point of fairly low level functioning, it is amazing how these supplements are helping me. It is hard to imagine stopping and waiting for an evolved doctor and one who takes insurance. 😉
In the United States, DHA Labs offers a reliable kyrptopyrrole urine test that you can do from home. It costs around $130. I’ve ordered it for many of my patients. About 1 in 4 people in my patient population have elevated levels. I have my patients do the questionnaire first. The ones that score very high seem to have a 60-70% chance of testing high as well. B6 deficiency and zinc deficiency from other causes is quite common as well. So I don’t think it hurts to treat empirically based on symptoms.
Michelle
I’m very familiar with DHA and have used them but unfortunately they also have false negatives – which is why I always use the questionnaire and supplements if someone scores high. I find about 50% of my clients either have pyroluria or need zinc, vitamin B6 and EPO. And yes I agree B6 deficiency and zinc deficiency from other causes is quite common.
I’m curious to hear your feedback on so many folks being diagnosed with B6 toxicity due to elevated B6 levels.