Pyroluria is a social anxiety condition that is not well recognized in the medical community. It responds really well to a few key nutrients. I cover this in this blog post: Pyroluria, high mauve, pyrrole disorder, malvaria, elevated kryptopyrroles and social anxiety
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.
If this sounds like you, here is a link to the Pyroluria Questionnaire from my book The Antianxiety Food Solution. I created this using the work of Carl Pfeiffer and Joan Mathews-Larson, modifying it based on feedback I received from my clients.
I encourage you to do this questionnaire and see how you score (before starting on the supplements and once you are on them).
This is a collection of past blog posts on the topic of pyroluria in preparation for my season 3 interview on the Anxiety Summit: “Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results”
During the Anxiety Summit season 2 Dr Corey Schuler interviewed me on the topic: How zinc and vitamin B6 prevent pyroluria and social anxiety
I review the questionnaire, the protocol and discuss how I’ve discovered a pyroluria-introversion connection. Here is the blog post I wrote in response to the Huffington Post article, written by Carolyn Gregoire and called “23 Signs You’re Secretly An Introvert”: Am I an anxious introvert because of low zinc and vitamin B6? My response to Huffington Post blog
I encourage you to also do this questionnaire and see how you score and see if a high score correlates with a high score on the pyroluria questionnaire. Do this before starting on the supplements and then once you are on them. Many anxious introverts no longer feel anxious in social settings once they get on the pyroluria protocol. Many say they no longer see themselves as introverted!
In that season 2 interview I also share about the connection between Pyroluria and focal musician’s dystonia or musician’s cramp
Here are some more recent blogs on pyroluria and related conditions:
- Pyroluria and chronic fatigue syndrome: is there a link?
- Oxytocin and social anxiety, pyroluria and depression?
- Oxytocin, social anxiety, pyroluria and autism
For most of my clients getting on the pyroluria protocol is life-changing! It certainly has been for me!
Unfortunately not everyone responds as expected. Some people:
- Cannot get their zinc levels to increase
- Feel too nauseas when taking any zinc
- Never seem to remember their dreams
- Continue to have social anxiety despite everything they do
My troubleshooting interview will be addressing the above scenarios and other related pyroluria questions that come up. PLEASE ASK YOUR QUESTIONS in the comments section below.
PS. If you’d like me to try and troubleshoot for you, please answer the questions I posed to Nancy below
If you’re not already signed up do join us here: season 3 of The Anxiety Summit
AFTER MONTHS OF ZINC @ 60MG AND 250 MG B6 THE ZINC TEST IS NOT DIFFERENT. A VERY SLIGHT TASTE IS ALL I EXPERIENCE. I AM NOW TRYING LIFE EXTENSION ZINC AND 50MG PTP. SOCIAL ANX. IT IS NOT WORSE, MAYBE BETTER BUT OTHER SYMPTOMS ARE THE SAME
Hi Nancy
Please share more specifics so I can address all of these This is what I’d ask if you were working with me one-on-one
1) what form of zinc were you on and what form is the Life Extension you’ll be starting?
2) have you been taking evening primrose oil and if yes, how much?
3) did you test your fatty acid levels? results?
4) what is your alkaline phosphatase (blood test)
5) did you test copper and ceruloplasmin, and if yes, results?
6) did you do the pyroluria urine test? results?
7) what’s your pyroluria score? and which are the low zinc symptoms that you have? [give me numbers on the questionnaire]
8) dreams before and now? how high did you go on the vitamin B6?
9) on a scale of 1-10, what was your social anxiety before and now (10 is worst)
10) what symptoms are still the same [give me numbers on the questionnaire]
11) what is your stomach acid like? and have you trialed Hcl supplements? tested total protein (in blood)
12) do you eat grass-fed red meat?
13) do you eat sugar? refined and “healthy” sweeteners? what?
14) do you eat nuts and how much how often?
15) do you have a copper IUD, copper pipes, copper post?
16) have you done a hair analysis and found high copper or high hidden copper?
17) how much and how often do you exercise? what about bikram/hot yoga?
18) have you used any of the amino acids? good results?
19) do you eat gluten? have gluten sensitivity? if yes, have you healed your gut?
20) do you eat other grains? what?
21) do you have amalgams/silver fillings? did you have them removed and did a mercury detox? tested for heavy metals
This is a good start – answer these carefully and I’ll use this as a great example on the call
Trudy
I am curious why you ask about Bikram/Hot Yoga.
I have severe pyroluria (blood test). I’m having a little relief with a lot of zinc and B vitamins, but the supplements increase brain fog after I take them in the mornings.
I do hot yoga as often as I can because I feel great for several hours afterwards. Any particular reason?
I’d love to hear other strategies for helping with the pyrrole disorder because my life is still pretty much ruled by my anxiety.
My copper and ceruloplasmin are both low.
I can also get you numbers or all the tests above if it would help.
Thank you!
Hi Amy
Exercise depletes us of zinc and hot yoga can too so you may need more zinc. I am not familiar with a blood test for pyroluria so please tell me more about that and answer the questions I posed for Nancy and I can try and troublshoot.
Trudy
How reliable are the urine test for pyroluria ? can you use the zinc and copper levels in a hair mineral test for how the status are in the body ?
Kristine
I no longer recommend the pyroluria urine test as there are too many false negatives. I use the questionnaire and response to supplements plus other markers like alk phos (for zinc), GGTP (for b6), dream recall, zinc tally, fatty acid status (low omega-6, good omega-3). Sometimes copper and ceruloplasmin and yes a hair analysis can be very helpful.
Trudy
Still have trouble with Dream recall. Taking 100mg b6 before bed helps. Also have since been diagnosed with adrenal fatigue and fibromyalgia so fatigue plagues my days. I have followed a gf/df diet for some time. I still have some sweeteners in the form of gf baked goods using honey, maple syrup and dates but am about to embark on a no sweetener 10 week Paleo program I’m hoping will help further. My social anxiety and general motivation are not great…quite a homebody hermit. Exercise makes me crash for days if not weeks. Will be following with interest.
Hi Sonya
Thanks for sharing. I have my clients go up to 500mg B6. You don’t mention zinc and the sugar does deplete your zinc levels.
With adrenal fatigue you do need to cut way back on exercise and not do anything strenuous – listen to your body 🙂
Trudy
Thanks Trudy. Your information and insight is always so very helpful. Yes, been taking 30-50mg zinc daily for a couple of years now. I have on read other questions and answers that have been most helpful (running to get some l-tyrosine!). I also need to work harder on my gut health, although I am sure the 10 week program which includes fermented vege, plus the beet kvass I have daily, will benefit my gut. Fun and games…especially with 3 kids that seem to have inherited all my bad stuff!
The time of day for taking B6 and zinc can make a big difference. Take B6 and EPO in the morning as B6 sometimes makes people a bit wired. Take zinc in the evenings 1) you won’t absorb it if taken at the same time as B6, and 2) zinc may make you sleepy :). And if you’re just a touch nauseous from zinc, it’s a great time to sleep it off.
Thanks Caroline – I’d like to clarify that this is not a true statment: “you won’t zinc absorb if taken at the same time as B6” but taking zinc at night is not a problem. Also taking it in the middle of a meal helps with nausea
What if zinc and b6 or p5p are causing stomach upset? Start at the lowest possible z
Amount and work your way up? If they are supposed to be on our body, why is stomach reacting?
Joanne
Do you know if it’s both of them that are causing stomach upset? and what symptoms – pain, nausea? It’s always best to do one thing at a time so you know what the effects are.
Please answer these to give me more info: How much of each, what brand, when do you take them (which meals and when in the meal – start, middle, end?)
What is your pyroluria score on the questionnaire? which B6 and which zinc symptoms?
Trudy
Hi Trudy,
I’ve been treating myself for Pyroluria for almost 1 year, based upon your excellent information. I have something like 23 symptoms; way more than 15. I had a very positive reaction to taking zinc; I slowly upped my dose to 100mg of Optizinc and have backed off to a maintenance dose of 80mg. My sense of smell came back in spades! The taste test indicates I am close to a maintenance dose; originally the zinc tally tasted like water, now it is almost spit-outable.
However, I have had no reaction to B6; if remembering your dreams and having good dreams are indicators. I initially took up to 500mg of B6 (no results). I switched to P5P (Enzymatic Therapy) 150mg a day (no results). I then tried taking both B6 and P5P (300 mg B6 and 150mg P5P). No results. I think I even took an additional P5P at bedtime. No results.
Recently, I’ve read the B2 is a co-factor in the making of B6 so if you are low in B2 it could inhibit B6 absorption. In addition, B2 is the “runt” of the B vitamins and it will not get absorbed if the other Bs are being taken. Is this accurate information? (I do usually take a B multi, 25mg, twice a day, with the activated forms of the Bs.)
I’ve been on a Paleo/GAPS/ WAPF diet for almost 2 years. I do eat red meat and do really well with it. Lots of vegetables, fermentable fibers, probiotics, bone broths, healthy fats, and fermented foods. My lifelong cravings for sweets just disappeared this spring!
I take EPO and Green Pastures fermented cod liver oil on alternating days. Not sure what a good brand of EPO is; I bought Vitamin World’s ( maybe it is not a good brand?)
I have recently added in selenium (100mg a day) and am poised to add in manganese; I don’t know a good type or dose.
I keep to a low copper diet and, in fact, I think I went through some copper detox this spring (from adequate zinc levels?) It was after this that I lost cravings for sweets.
An odd thing: this month I have been craving bananas! I can’t get enough of them-I try to limit to one a day.
My sleeping has absolutely improved since starting Pyroluria supplements.
I would also say anxiety has also improved.
I did try taking Betaine HCl; up to 6 625mg pills per meal. No burning, no reaction. Since my issue with constipation has improved it may be that I don’t need HCl?
I struggle with low energy levels and a mild kind of depression where it is hard to initiate things and complete them. …and mental fog.
I have used different amino acids: tryptophan, GABA and DLP. I stayed on the GABA as it seems to give the best results. Currently I am getting by with no amino acids, as an experiment. Doing ok…
I am hindered in that I don’t have health insurance and I don’t have a doctor (and doctors don’t believe there is such a condition anyway, for the most part.)
Your book and blog posts have been of immense benefit to me! Your website led me to understand I probably have this genetic condition. The information helped me understand I don’t react well to stress and now I can take proactive action when stress looms.
Should I continue upping the B6 dose? Experiment with B2 first and bring that online before starting B6 again? What would be sensible next steps to take, given that I can’t get any testing done at the moment?
I understand I’m working in the blind, but that is my reality at the moment and I want to keep doing all I can to improve my health
You should als know that I am pushing the envelope on pre and probiotics. Researching what foods are good fermentable fibers and eating them every day. Taking raw potato starch along with inulin and GOS and FOS foods. Making yogurt (24 hour) using single strains of B. bifidum or B. infantis (this, in particular, is supposed to create serotonin on the gut.) My hope is that I can get my “factory” of bugs online and make more B vitamins and neurotransmitters, like serotonin and GABA.
Thanks ever so much Trudy!
Laura
Hi Laura
Thanks for sharing and super that you’re doing better! Good to hear “sleeping has absolutely improved since starting pyroluria supplements.” Could you clarify “I would also say anxiety has also improved” on a scale of 1 to 10, with 10 worst, before and now? The social anxiety?
Re the B6 – no dreams or nightmares? Did you ever go higher than what you mention? Do you have lab results for GGTP (basic blood work?) I’ll come back and comment on B2
Your diet sounds great – good for you! Love the gut focus. My feedback – I’m not a fan of fermented cod liver oil and find pyrolurics typically don’t need omega-3s.
I struggle with low energy levels and a mild kind of depression where it is hard to initiate things and complete them. …and mental fog – have you looked at adrenal and thyroid? And tried tyrosine?
Trudy
Dear Trudy,
Let me immediately respond to your suggestion to up my catecholamines with L-tyrosine: it worked! Instantly! These are the (low cat) symptoms I have been struggling with (from your list):
-Depression and apathy
-Lack of energy
-Lack of focus
-Lack of drive and low motivation
-Procrastination and indecisiveness
(See: https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/ )
Within one hour I noticed a huge difference in these exact symptoms; it was like someone lit a fire under me!
Since last May I have been variously trying L-tryptophan, GABA and DLPA with great success. (I had deficiency symptoms for all three.) I had tried L-tyrosine and had a very bad reaction, so I stored it away.
I also eat 3 meals a day with good portions of protein; I had reduced my meals to 2 a day on the Paleo diet, but took your advice to really stoke up on adequate protein and missing out on ~20gr of protein a day was not prudent.
Per your book, I built up my GABA and tryptophan levels and I used DLPA when I was over-reacting to emotional pain. (Note: DLPA REALLY works for physical pain, too. I was far away from home, had some muscle aches and pains and happened to have DLPA with me. It worked.)
So, today I have confirmation that some sort of healing has happened; the L-tyrosine did NOT cause a bad reaction, as before, AND it positively effected the exact issues which are hindering me.
So, Trudy, explain this process to me, why did beefing up GABA and L-tryptophan, first, allow me to eventually try L-tyrosine and have it work?
I don’t know how to thank you. Your book has been an easy-to-follow guide and your online, interactive help has been exactly what I needed. Thank you!
Laura
PS I will respond to your other questions (pyroluria issues) tomorrow.
How wonderful Laura! and thanks for letting me know!
Our bodies are changing all the time so this is not unusual
What is typical b6 to take? I usually take a sublingual b12 and have
seen a sublingual b complex. Wondering if it’s enough?
Also I saw a GABA plus that has niacin in it is that ok to take or try to
find something else
I am looking online at vitamin world as I have a coupon there.
I have L glutamine that I was told to mix with water but should I try just
on the tongue like you say with the capsules?
I suffer from depression & ulcerative colitis and have gained 50# from
being on streroids 2 years ago. Haven’t lost the weight so I get more
depressed And then find myself comfort eating.
Thanks Trudy. I love listening to you.
shannon
Shannon
I have my clients start with 100mg B6. I like GABA alone so you can increase or decrease. Glutamine on your tongue helps intense sweet cravings but DPA/d-phenylalanine helps a lot with comfort eating
Trudy
Hi Trudy,
I am familiar with the questionnaire you use to identify possible pyroluria. Have you found any additional testing that is helpful (i.e., urinary, blood, etc.)? Thank you so much!
Hi Tamara
I rely mostly on the questionnaire and respond to supplements. For B6:I also look at dream recall and GGTP below 10. For zinc: alk phos/alkaline phosphatase below 70 and the zinc challenge. Fatty acid testing is also helpful: often there will be sufficient omega-3s but a need for GLA.
I no longer do the urine test due to false negatives.
I’ll be talking about this in my pyroluria troubleshooting interview later this week and Karla and I talk about it in her cases studies interview on the Anxiety Summit http://www.theanxietysummit.com
Trudy
I have tested low for alkaline phosphatase for over 2 years now. It was last at 22. I could not find a practitioner who knew what caused it or what it meant. Thank you Trudy for sharing your knowledge! I recently started working with a practitioner who tested me for zinc, copper, histamines and pyrolurria using DHA labs. Guess what- low zinc, high histamine, high pyrolles. Now I need help getting them back to the appropriate levels. I’m taking very small doses of zinc and p5p because I am so sensitive to most supplements. I’m sure I’m not taking enough. I’m reading nutrient therapy by Dr. Walsh and learning SO MUCH.
Thank you for such interesting information and questionnaire. How do you fit in the overlap of developmental and relational trauma? It seems to me that many of the symptoms on the checklist can be a result of early dev trauma and benefit and heal best from somatic experiencing therapy (vs nutritional therapy). I imagine nutritional therapy must help greatly too. But how you gain your enery (introvertedness) and how heightened your nervous system tends to get from social engagement tends to stay pretty stable across the years I thought. But I am willing to try the supplements. Why no copper – I noticed my multi has much less zinc and B6 and also the copper. Thanks for all you do!
Michelle
Developmental and relational trauma is a factor for many people and by addressing the “PTSD” and gut issues causes by this trauma is one way to look at it.
I’m not familiar with somatic experiencing therapy but would assume that nutritional approaches would make it more effective as it does with other therapy.
Most people believe that introvertedness is something we have and won’t change but based on the feedback I get from clients and readers this is not the case when pyroluria is addressed with the key nutrients. Please do give it a try and let us know.
Copper negates the zinc in pyrolurics. Separate zinc and B6 are needed for pyroluria, over an above the copper-free multi
Trudy
Do you recommend starting with one and then adding the others….one at a time or just go for all at the same time…
Tryptophan with GABA or one at a time?
Zinc with B6 or start with one and add the other?
I have been in tears learning these things.
I have struggled all my life as an only child and being terribly shy etc. I seemed to ‘grow out of it’ a bit with raising my children. Then at about 52 my life went down hill fast. I lost my father then 18 months later lost my mother. Six months later I was under a great deal of stress dealing with another problem and I instantly started with panic attacks. I have not been right since. I never dreamed or at least didn’t recall them but was told that was because I had Apnea. After being treated for that I was told to watch out for the nightmares. Now that is all I have. I wake up in the morning with anxiety and thoughts that I have a hard time controlling. I have always been a worrier but it is worse now. I am scared most of the time and hate being alone. I am now 59 and live in hell. I had a back surgery last year that has started a chain of events that just won’t stop. I was just diagnosed with Ehlers Danlos, some form of dysautonomia, TMJ, have MTHFR homo 1298 (having trouble with folate and b12) and now my neck is coming apart. I am trying to start mindfulness practice but it is difficult with this level of stress, depression, and anxiety. But I am trying. I am starting to see a psychologist this week but after our first meeting I don’t expect much. I did take some Tryptophan (broke open a capsule and took it till it calmed me down-it took about a third of the 500mg) a couple evenings and it was great but not doing regularly. I am occasionally doing some Quicksilver GABA when I am anxious in the morning. I find that I can’t take even the slightest amount of stress such as getting ready to leave the house, pressure to do chores, etc.
I know exactly the day this started. I just crashed. My PCP says that if I don’t take the antidepressant that she has prescribed she can’t help me. I don’t take pills well and don’t want to get addicted to any of it. I have had drs do things to me that would make anyone anxious to go see them. Just a mess here. I hope to try your Pyroluria program in the next week after gathering the supplements. Do you know anyone in the Cincinnati area that understands like you do as I prefer some hand holding….probably due to my fear/trust issues (oxytocin etc)?
Thanks for the summit. I look forward to the depression summit.
Candy
I’m pleased the tryptophan is helping. I have not used the Quicksilver GABA and would love to hear what you think?
I suggest doing one thing at a time unless you’re working with a practitioner – that way you know what effect each one is having
So pleased all this is helping you and so sorry to hear about all your health challenges.
Trudy
I have struggled for much of my life with these symptoms. I first learned about pyroluria when Julia Ross published her book. I’ve been tested twice and both came back negative. I learned that the urine test results were unreliable and asked every practitioner and doctor I’ve seen to help with this, but no-one seems to know about it or is willing to learn.
It is tremendously frustrating to know about something for so many years and continue to suffer with it. i got so much worse after having surgery this past fall that I became completely isolated and unable to handle even the smallest stress.
I started taking zinc and P-5-P in very moderate doses and just that has helped bring me out of the extreme depressed, apathetic, isolating state I was in. Now I am starting new with a functional medicine doctor and will bring her this article and your protocol. if she won’t help, then I’ll just do the protocol on my own.
I was thrilled to see the speakers in the Anxiety Summit talking about pyroluria and want to thank you for bringing this condition to light, and making the information available to so many.
It is terrible that medicine takes so long to treat things like this as well as chronic Lyme, mold illness, metal toxicity, and other neuroimmune and environmental illnesses. Too many people are suffering needlessly.
Grace
It’s wonderful that you are finding answers again. What super results and good for you for taking things into your own hands. And yes, do share this with your doc
And you are most welcome!
Trudy
How do I know when enough zinc is enough? And how long to recover from a zinc deficiency? I suspect I have been suffering zinc deficiency for quite a while.
I am on:
-EPO 500mg
-B6 100mg (I tried boosting w/ B-complex of 50mg B6 and felt bad/too much)
– zinc–50mg at lunch, 100mg in the evening, and if I wake at night another zinc which works better than aminos or sleep aids.
– before upping zinc, I tried 5-http which did nothing for me. And I tried GABA which was settling/relaxing, but took too many smiles and laughs away.
– I have JUST TODAY learned that too many nuts are bad. wow. I recently started eating lots of nuts when I killed off a candida infection. So, what is an appropriate amount of almonds, sunflower seeds, pumpkin seeds, and “nut granola” to eat if one has pyroluria?
Issues
– extreme stress for several years and the stressor is firing up again
– during my stress, I began taking dye-free benadryl most nights to help me sleep. I have learned that I’ve been taking something that actually BLOCKS zinc absorption for several years.
– I have felt some nerve and muscle contraction issues in my legs which have partially improved with stopping the anti-histamine and dramatically increasing zinc.
– I previously had brief on-off vision distortions that are gone since upping my zinc.
– While 2 in my family have ADD, I don’t. However, I was always high energy and effervescent.
Is there a limit to zinc intake? or is the satisfaction of so much zinc a sign of needing more of a precursor?
How long will it take to get over zinc deficiency? Will the muscles and nerves recover?
thanks
ooh, and I’ve just read elsewhere that calcium blocks zinc absorption. Thus, I shouldn’t be taking these evening supplements at the same time.
How much of my recent problem may be from “zinc blockers”?
Caroline
All the nuts may be an issue for you.
I find more EPO helps with zinc absorption. Fatty acid testing is helpful to know exactly how much you may need
Thank you for so much info. You are helping so many people.
My question regarding pryoluria, I checked off 15 of the symptoms on the questionnaire. Mostly the behavioral and psychological symptoms, but very few of the physical ones. I have fine dream recall, mostly undesirable dreams but not nightmares. I have strong thick fingernails, I have a full thick head of hair at age 43.(I am a man by the way). And have thick skin. All opposite of the physical signs. I believe I do sunburn easy but since I work out in the sun every day I am fairly tan. I have had social anxiety and deppression most of my life, and am overall introverted. But there were points in my life that I was extroverted, like I would almost snap out of it for a year or 2 and life was good, I was happy and content overall. then a heavy stressor would hit and I would be back to being introverted and depressed. I manage people in my job, and at work am fairly extroverted, but in my personal life am not at all. I attempted the supplements you suggested for about a month and felt no change. ordered a pryoluria test kit and will be getting tested next week, but from your experience with so many people, would I be more likely low in key amino acids or possibly pryoluric? I have tried amino acids like tyrosine and tryptophan with no success. I just recently started the paleo diet about 5 weeks ago as well and that has not affected how I feel either. Any suggestions or thoughts from you would be most appreciated. Thank you again for all the great knowledge you share with us.
Andrew
If we were working together I’d consider both pyroluria and low neurotransmitters. I say pyroluria because of the undesirable dreams (they should be pleasant), symptoms made worse by stress and introversion.
I can’t comment on tyrosine and tryptophan without knowing brand, how much and how you used them. And why – which symptoms from this https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/
There are many possible causes – here is a list for you to consider https://www.everywomanover29.com/blog/60-nutritional-biochemical-causes-of-anxiety/
Hi Trudy,
I’ve read your book the anti-anxiety food solution and it seems that I really have pyroluria since I scored more than 15 on the questionnaire and I have no dreams recall at all. Looking back I would say I have it since I was a child, with ups and downs after that. I’m 42 years old and I have a very stressful job (or I make it stressful with all the anxiety around everything I do, using the words of a friend “it’s really tiring to be me”) and it has become worst the last 5 years with panick attacks in the middle of the night, insomnia and hypoglycemia. I tried a vegetarian diet due to digestive problems and I think it made things worst.
I always had small white patches in my neck (vitiligo) that are now spreading in more parts of the body, can it be due to lack of zinc?
I live in a place where there aren’t any naturopaths so it’s impossible to discuss this with anyone or to be tested.. I bought bio zinc from Blackmores but it also has vitamin A and it doesn’t help a lot. I checked on the iherb website and they have P5P and optizinc but I really don’t know what brands to choose, is there anyway you can help me with that please?
Really thankful to you and your book for making me realize I’m not going crazy and that there might be a solution for this nightmare I’m living.
Celia
Celia
You’re not going crazy! Vitiligo is an autoimmune condition so I’d look at gluten and other autoimmune triggers – Dr Amy Myers has a great book on this.
Pick a zinc that doesn’t have copper and you’ll be fine – optizinc is well absorbed
Hi Trudy,
I write on behalve of my wife.
After several bouts of depression starting in 1998 she diagnosed pyroluric in 2010 second highest on scale. After starting treatment she was slowly improving her health untill May 2012 when she discovered she had breast cancer.
After the surgery in June 2012 followed by radiation and chemotherapy. During chemo my wife contacted an infection and had to go to the hospital. 8 january 2013 after receiving a bloodtransfusion she received her last chemo and was allowed to go home.
She was so weak that she could barely walk and reach the toilet.
She could not use her eyes because they were extremely dry audiobooks were her only way to occupy her when she was not resting.
In january 2013 she started the long road to recovery by taking supplements it was slow going.
April 2014 I came across the book Depression-Free, Naturally and your book The Anxiety food solution. May 2014 we started on the pyroluria protocol page 154 Depression-free, naturally and amended by the lesser amounts in your book. My wife just started to read again. The result of the increasing amounts of supplements especially zinc and B 6 was a increasing anxiety and sadness at first we thought this is like a new depression medicine but it did not go away. The end of june I thought the Vit. B 6 was not working and we switched the Vit. B 6 to Vit. B 6 P5P the outcome could not be worse she was so anxious and so deeply sad [allthough the word does not do justice to what she feld].
We simply had to break off she could not live this way.
These are the supplements she was using when we stopped:
Nicotinamide: 500 mg
Vit. B 6 HCL: 400mg replaced by 100 mg P5P
P5P: 50 mg
Zincpicolate : 73 mg [ zinc tally very weak taste]
Vit. D3: 1000 IU
Vit. E: 250 IU
GLA : 230 mg
Q10 : 30 mg
Vit. B compl.: 2 x Jarrow Bright
Multi Vit. Bio Vitaal[bioVitaal.nl] : 1 x [This Multi is recommanded by KEAC Netherlands]
Vit. C-Ester : 1300 mg
L-Glutamine : 500mg
Magnesiumtaurate : 400 mg
Vit. B 5 : 500 mg
Nac : 500 mg
Manganese : 9,4 mg
Total amounts of
Zincpicolate : 80 mg
Vit. B 6 P5P :180 mg
Hi Trudy,
Reading back I see I have forgotten to ask the question.
Why did the pyroluria protocol not work for my wife I would be grateful if you could come up with an answer.
Hi Gerard
I’m sorry to hear what your wife has been through and I’m afraid I don’t have an answer for you.
I would suggest looking for sources of copper (in any of the supps) and elsewhere.
When I hear increasing anxiety and sadness I think too much of a supplement ie. the reverse effect. The chemo and other treatment may have made her more sensitive
Hi Trudy,
Thank you for responding.
We will try to find a good dietitian here in the Netherlands.
This is great advice, but I’d like to add combining practice with low dose beta blockers which a doctor can prescribe. It is relatively safe as long as you don’t have low blood pressure or preexisting conditions. Block The Fear (blockthefear.com) is also a good source of information for beta blockers.
Thanks Chris but I’m in favor of addressing the root cause of the nutritional deficiency rather than using a medication like a beta blocker, which I consider a band-aid with side effects. With the right combination of nutrients and dietary changes social anxiety can be completely eliminated.
Hi Trudi,
My daughter is defiant,impulsive,cranky, a rule braker and can be hyperactive. She was diagnosed as having very high pyrolles (134) and high copper. She has being working with a Walsh trained dr for over a year but we have only had a small increase in zinc (which is now within a normal range but the low end) and a small decrease in copper. No change in her symptoms/behaviour. She was taking a compounded treatment with other vitamins added to it.Can you please advise me of the next steps we can try. I have stopped working with this dr as I have spent a lot of money with no results.
Hi Trudy:
I just wanted to share some of my experiences with Pyroluria and dealing with my primary care doctor.
I found out Quest Diagnostics offers a test for Urine Pyrroles (Test Code 437) in the USA, which would be covered by my insurance. It is performed by the Bio Center Laboratory in Wichita, KS.
My doctor was reluctant to test as he never had heard of it and some of his searching pointed to orthomolecular medicine, though he did eventually write up the lab request. While I was testing, I also had a vitamin D, Zinc / Copper Serum, and other blood tests.
My Results are as follows:
Vitamin D (25-OH): LOW at 27 ng/mL
Zinc: Normal at 111 mcg/dL
Zinc Tally: About a 1.25 – Almost no taste (Indicates the greatest need to supplement with Zinc)
Copper: Normal at 107 mcg/dL
Bilirubin: HIGH at 2.4 mg/dL (0.2 – 1.2 is Normal)
Urine Pyrroles: Normal/Borderline at 15 ug/dL (0 – 20 Normal)
Trudy’s Pyroluria Questionnaire: Highly Probable = 22 (15 in most common / 7 in less common)
My questions are:
Why did the Zinc Tally taste test indicate a need for zinc, where as the Zinc Serum test indicated normal levels?
The Urine Pyrroles test indicated supplementation may be helpful, though no urine specific gravity test was preformed, so maybe this was skewed by dehydration?
Basically, it sounds like this test was inconclusive? Would the next step be to trial Zinc/B6 and see if there is improvement in my Anxiety? Or is it time to look at other anxiety triggers.
Thanks for everything you do!
Hi Trudy- Do you know if Country Life Zinc has copper? I started it today with P5P as I think I have pyroluria. I have lots of anxiety so I’m also taking GABA and Theanine and Magnesium. How long does it usually take before the zinc provides relief?
Thank you!
Lyn
I suggest checking the label. Once we find the correct combination the aminos provide relief right away and the pyroluria protocol takes a week to 2
Hello, I found your site by searching “Pyroluria support”. I was recently diagnosed and I’m really lost and confused. It’s caused more stress to find out and I’m just hoping to find some type of support from someone who may have experienced this as well. I’m really struggling and need to see the light at the end of the tunnel because I haven’t started treatment yet. Please help.
Thank you so much for your work, Trudy!! I’ve learned a lot from you over the last few years. I’m interested to see your mention of never remembering dreams as part of pyroluria. I haven’t dreamt in well over 20 years (I’m almost 46). I’ve wondered why, exactly. I also had pretty serious to severe insomnia for most of that time, so I figured I just wasn’t getting into the proper dream stages. Is lack of dreams a pretty strong indicator of pyroluria? I imagine there could be a number of causes for it?
I have a long and complicated health history, and have seen drastic improvements at various times from GABA and tryptohan. I started taking tyrosine again recently and haven’t seen much difference. I’m going to do some more digging into these topics when I have a moment. I have always wondered what exactly was wrong with me my whole life! You have definitely elucidated some things for me. Thank you!
Hi Trudy,
I began working with a functional medicine practitioner after reading your book and blog. I have been diagnosed with pyroluria. I scored over 20 on your questionnaire. My labwork showed:
Kryptopyrrole 17.92 (greater than 16 is elevated)
Ceruloplasmin 0.24
Zinc 9.3 (normal) lab range is 9.2-26
Copper 11.2 (low) N range 13-24
I have been taking the following supplements for 6 weeks:
1) Zinc supplement (7.5mg/day). It’s low. I guess the concern is that if I take a higher dose it may decrease my copper levels further. I asked my nutritionist if I should do a zinc taste test but she said there is no evidence that the taste test relates to levels of zinc.
2) 50mg P5P for 4 weeks. With no dream recall, I increased the dose to 100mg P5P for 2 weeks now but still no dream recall.
3) 400-600mg Magnesium/day.
4) I take beef liver capsules (3 caps twice per day) and am using a bitters supplement before meals to try to improve the absorption of nutrients. My nutritionist is puzzled that although my symptoms point to excess copper, lab results show I am low. My sleep had improved slightly but that is the only difference.
Should I try EPO or should I test fatty acid levels first? Would doing a zinc taste test be worth it? Should I increase my Zn supplement even with my copper levels being low? Is there a benefit to supplementing with copper and increasing my zinc? Any advice you have about the pyroluria treatment would be appreciated.
Thank you,
Robson
Robson
I’m afraid I can’t consult via the blog and offer specific feedback. I can share that I do use zinc taste test with success and also use alk phos (read more in the pyroluria chapter of my book). I also share that zinc and copper labs are notoriously inaccurate and find most of my clients do well with EPO but that atty acid testing does confirm the need and how much is needed. Also read about how some folks do well with pyridoxine vs P5P.
I am curious who you did the pyroluria test with and which lab did the the zinc, copper and cerulopasmin? (and presumably all serum)?
Thank you for your reply. I live in Canada. I ordered the pyroluria test kit through DHA Laboratory. I did the Zn, Cu and ceruloplasmin through a provincial lab.
I cannot find the Zinc Challenge by Designs for Health in Canada. Are there other alternatives for the Zinc taste test that you could recommend?
Robson
Thanks for letting me know. Serum zinc is notoriously inaccurate. Biotics Research has a product.