Pyroluria: The Unknown Disorder
Pyroluria, also called Malvaria, is a unique metabolic condition that is very rarely recognized in both the medical and natural health world. Some researchers in the orthomolecular medicine and orthomolecular psychiatry believe that up to 10% of the population has this metabolic condition (1). It is considered by many in the functional medicine world the most common unknown disorder. Pyrolurics need a specific diet, lifestyle and supplementation program to get well.
Pyroluria is a genetic condition that is typically related to familial alcoholism and/or environmental toxicity. If an individual has a family history of alcoholism they may very well have this genetic mutation. It can be induced with childhood trauma or a chronic infection early in life. The onset usually begins in the late teens and is often triggered by a traumatic life event.
The Symptoms Associated with Pyroluria:
It is estimated that as many as 50% of those with autism, 40% of alcoholics, 70% of schizophrenics, 70% of depressed individuals and 30% of people with ADHD have pyroluria (2, 3). When this goes undiagnosed and untreated it becomes very challenging for these individuals to ever get well despite the use of holistic therapies. Most will struggle with their health throughout their life and never find any long-term answers.
The symptoms of pyroluria include chronic anxiety, poor stress tolerance, digestive issues, poor immunity, joint pain, acne or eczema, mood swings and poor short term memory. These individuals often have difficulty digesting and absorbing protein and they are easily wrecked by increasing stress (4, 5, 6).
Diagnosing Pyroluria:
Pyroluria can be diagnosed through a specific Kryptopyrroles urine test. Normal amounts of kryptophyrroles in the urine should be less than 20 ug/dl. Numbers greater than 20 ug/dl would be a positive test for the diagnosis of pyroluria (7). Many clinicians have found that this number should be less than 15 ug/dl.
The lab that I use for this test measures kryptopyrroles in mcg/dl and the number should be less than 9 mcg/dl. Anything between 10-15 is considered mild pyroluria, 15-19 is moderate and anything above 20 mcg/dl, we consider a severe case.
Other warning signs you may have this disorder include an inability to remember dreams, hair loss, light, thin pale skin that is prone to stretch marks, white spots on the fingernails and poor tooth enamel (8).
What is Pyroluria:
There are several waste products that are produced when the body makes hemoglobin for the red blood cells. These waste products are called kryptopyrroles which are technically called hydroxyhemoppyrrolin-2-one (HPL) which are typically excreted by our body. Individuals with pyroluria are unable to clear the HPL effectively and they build up in the system (9, 10).
The HPL binds strongly to zinc, biotin and vitamin B6 which are critical nutrients for cellular metabolism. Over a period of time, the body becomes very deficient in these critical nutrients and symptoms arise. These people will often go years suffering the effects of this disorder despite a clean diet, supplementation and holistic therapies.
Nutrition & Supplementation:
Pyrolurics have a greater need for omega-6 fatty acids than most in our society (11, 12). They need both arachidonic acid (AA) and Gamma linolenic acid (GLA). A diet rich in pastured eggs, pasture-fed butter, grass-fed beef and wild game and organ meats supplies the body with significant amounts of essential fats. These foods are also rich in zinc.
GLA is found in borage oil, evening primrose oil, black current seed oil and hemp oil. This is typically supplemented with one of these sources as it is hard to get enough in our diet.
These individuals need to supplement with zinc and co-enzymated form of vitamin B6 called P-5-P (13, 14). A general methyl donating supplement with P-5-P and other methyl donors such as trimethylglycine, methyl-folate, methyl-B12 and riboflavin 5’phosphate sodium is quite effect with this process.
Vitamin B6 is found in seafood, meat and green leafy veggies among other things. However, the number one way we get B6 into our system is through fiber that our gut microbes break down and produce B6 as a byproduct of their metabolism of the fibers. Probiotics and fermented foods are also necessary for these individuals to reduce inflammatory gut related stress and heal appropriately.
Lifestyle & Supplements Get Results:
With the right diet, supplementation and stress reduction most pyrolurics see results very quickly. More severe cases usually experience slow progressive results. Very stubborn cases are typically having issues with heavy metals or mold toxins.
They will need to remain on this lifestyle with moderate supplementation for the rest of their life or risk symptoms coming back. Typically, large doses of supplementation is used in the beginning and the individual tapers down to smaller doses as they feel better and have a return to nutrient sufficient status.
Clinically, I use high doses of zinc, methylation support, mitochondrial support (CoQ10, Lipoic Acid, N-Acetyl Cysteine), Probiotics and GLA.
Testing for Zinc and B6 Status:
The easiest way to test for zinc sufficiency is through a zinc tally test. This is a test done by tasting a liquid zinc supplement. With zinc sufficiency the liquid tastes awful but those who are deficient in zinc will not taste the liquid supplement. This is a positive flag for a zinc deficiency. Blood work could also be done to verify but most experts like the zinc tally test as it is easy and inexpensive.
The subjective test for B6 sufficiency is the return of regular dreaming that the individual can remember. They don’t have to remember the entire dream but bits and pieces is a sign of sufficiency. When they are deficient they will typically be unable to remember anything about their dreams (15).
Additional Tips to Know:
Pyrolurics also need to be sure to eat very clean and avoid phytate containing foods such as grains, nuts, legumes and soy. Phytic acids in these foods bind to major minerals like zinc and render them useless in our body (16). Soaking and sprouting legumes and nuts reduces the phytate count.
Due to zinc deficient states they are more susceptible to heavy metal toxicity from mercury, cadmium and copper. When the individual is unable to develop a zinc sufficient state despite very large supplemental usage it is most likely related to heavy metal toxicity. Special testing can be done for heavy metal levels.
Chronic stress, alcohol consumption, sugar consumption, smoking and pharmaceutical drugs will all further aggravate the symptoms and severity of pyroluria.
Pyroluria Questionnaire:
The following includes the most common symptoms associated with the condition Pyroluria. If you answer “yes” to 15 or more of these then further testing may be worthwhile:
1. Little or no dream recall
2. White spots on finger nails
3. Poor morning appetite +/- tendency to skip breakfast
4. Morning nausea
5. Pale skin +/- poor tanning +/- burn easy in sun
6. Sensitivity to bright light
7. Hypersensitive to loud noises
8. Reading difficulties (e.g. dyslexia)
9. Poor ability to cope with stress
10. Mood swings or temper outbursts
11. Histrionic (dramatic) tendency
12. Argumentative/enjoy argument
13. New situations or changes in routine (i.e., traveling) particularly stressful
14. Much higher capability and alertness in the evening, compared to mornings
15. Poor short term memory
16. Abnormal body fat distribution
17. Belong to an all-girl family with look-alike sisters
18. Dry skin
19. Anxiousness
20. Reaching puberty later than normal
21. Difficulty digesting, a dislike of protein or a history of vegetarianism
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin
24. Poor sense of smell or taste
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue
27. A tendency to overreact to tranquilizers, barbiturates, alcohol or other drugs (in other words, a little produces a powerful response)
28. A tendency toward anemia
29. History of mental illness or alcoholism in family
30. Easily upset by criticism
31. Sweet smell (fruity odor) to breath or sweat when ill or stressed
32. Prone to acne, eczema or psoriasis
33. A tendency toward feeling anxious, fearful and carrying lifelong inner tension
34. Difficulty recalling past events or people
35. Bouts of depression or nervous exhaustion
36. Prone to frequent colds or infections
I have a specific blood test that lets me know if someone is positive for the Pyroluric condition and I have a specialized nutrition and supplement protocol to help these individuals regain their health.
Sources For This Article Include:
1. Nutritional Healing – Pyroluria
2. HOFFER A, OSMOND H. MALVARIA: A NEW PSYCHIATRIC DISEASE. Acta Psychiatr Scand. 1963;39:335-66. PMID: 14078702
3. Gebel L. [Occurrence of the mauve factor in schizophrenia]. Psychiatr Pol. 1973 Mar-Apr;7(2):153-9. Polish. PMID: 4710987
4. HOFFER A, MAHON M. The presence of unidentified substances in the urine of psychiatric patients. J Neuropsychiatr. 1961 Aug;2:331-62. PMID: 13714995
5. HOFFER A. The presence of malvaria in some mentally retarded children. Am J Ment Defic. 1963 Mar;67:730-2. PMID: 13963913
6. Ellman GL, Jones RT, Rychert RC. Mauve spot and schizophrenia. Am J Psychiatry. 1968 Dec;125(6):849-51. PMID: 5698458
7. A Rapid Screening Test for Pyroluria; Useful in Distinguishing a Schizophrenic Subpopulation Link Here
8. Hoffer A. Malvaria and the law. Psychosomatics. 1966 Sep-Oct;7(5):303-10. PMID: 5912644
9. Walker JL. Neurological and behavioral toxicity of kryptopyrrole in the rat. Pharmacol Biochem Behav. 1975 Mar-Apr;3(2):243-50. PMID: 1096175
10. Krischer K, Pfeiffer CC. Biochemical relationship between kryptopyrrole (mauve factor and trans-3-methyl-2-hexenoic acid (schizophrenia odor). Res Commun Chem Pathol Pharmacol. 1973 Jan;5(1):9-15. PMID: 4686114
11. Heleniak EP, Lamola SW. A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria. Med Hypotheses. 1986 Apr;19(4):333-8. PMID: 3520252
12. Horrobin DF, Huang YS. Schizophrenia: the role of abnormal essential fatty acid and prostaglandin metabolism. Med Hypotheses. 1983 Mar;10(3):329-36. PMID: 6348496
13. Treatment of Pyroluric Schizophrenia (Malvaria) With Large Doses of Pyridoxine and a Dietary Supplement of Zinc Link Here
14. Zinc and Manganese in the Schizophrenias Link Here
15. Ebben M, Lequerica A, Spielman A. Effects of pyridoxine on dreaming: a preliminary study. Percept Mot Skills. 2002 Feb;94(1):135-40. PMID: 11883552
16. Torre M, Rodriguez AR, Saura-Calixto F. Effects of dietary fiber and phytic acid on mineral availability. Crit Rev Food Sci Nutr. 1991;30(1):1-22. PMID: 1657026
I had Pyroluria 5 years ago. It is not always genetic.
I developed the condition when I underwent aggressive heavy metal detoxification under the supervision of an orthomolecular doctor, here in Western Australia. Luckily the error was recognised quickly and the remedy (high doses P-5-P, methycobalamin injections, methylfolate) did the trick and I soon returned to normal.
Camilla, the test is done through a Sydney lab. You need to ask your integrative GP for a referral to the specific lab where they will draw your blood and then forward it to the appropriate lab for analysis.
I have pyroluia. A couple of questions:
1. There is conflicting information here. You say avoid phytates but list pumpkin seeds, almonds and cashew nuts as high zinc and therefore beneficial. Should we eat them???
2. In Australia kryptorroles of 15+ are diagnosed not 20. What’s your opinion on this?
3. As it’s genetic which SNPs are involved?
Thanks for the clear article!
Hey Tania,
It is best to sprout pumpkin seeds or purchase them pre-sprouted. Same with almonds. Sprouted pumpkin seeds are one of the best foods for a pyroluric.
Actually, we have started diagnosing anything over 9 mcg/dl as positive. I need to update this but the original research for that diagnosis was out of an older Orthomolecular report.
I am not sure what SNP’s are involved at this time. I have yet to see any studies looking into this but will continue to scan the research for it.
Hello, how about drinking various tbsp of sunflower oil, avocado oil and pumpkin seeds oil all them in the cold pressed form? maybe mixing them all before drinking It would help with pyroluria like the treating protocols? thanks.
Hey Guilherme, Yes that would be beneficial!
Hello, I just got my results back from DHALab and the result was 10.18
According to their diagnosis standards I would be in the optimal range, but I have a lot of the symptoms. Would you consider that positive?
Not necessarily Chase, there could definitely be other factors involved!
Pyrroles can be destroyed by to much exposure to light. Unless you can recall being extremely careful with the sample I’d test again.
Not a doc or an expert. Do have pyroluria lifelong. I’ve read that eating animal protein helps rectify the zinc deficiency which in turn rectifies animal protein digestion difficulty. Chicken and egg problem, so to speak… I don’t have trouble digesting animal proteins probably thanks to high zinc supplementation. Despite that supplementation, cannot be vegetarian or vegan (have tried conscientiously as I’d like at least substantially to lower my animal protein intake because of the carbon footprint of growing animals for food); within a couple of weeks of no meats, upped carbs, grain and lots of nuts and seeds I’m felled with pyroluria symptoms that top my high levels of supplemental P5P and zinc picolinate.
If I have most of the things on the list that says I may have it. Especially I believe I had some fetal alcohol side effects from birth. Can I just start taking supplements for this or should I get a test first?
I would recommend testing as there could be other causes and those with or without Pyroluria have very different nutritional needs.
Would you recommend DHA Laboratoy for pyroluria testing?
Yes this is the test I use Alison: https://drjockers.com/pyroluria-testing/
I have all of those symptoms and history but I cannot tolerate much b6 even coenzymemated. Would that mean I probably don’t have this condition?
That’s not really enough information to be able to make that call Dianna!
Is it necessary to stop B6 and zinc supplementation before testing? Thanks!
Hello Dr.Jockers. I have been diagnosed with Pyroluria and wanted to ask about body stress which I heard can cause the pyrrols to elevate. I would like to go to the gym and build muscle mass but of course lifting heavy weights puts an enormous amount of stress on your body, so I have been really put off from lifting weights. So is it true that physical stress on the body like lifting weights can cause the pyrrols to raise? If so what would you suggest? As I really was looking forward going to the gym and putting on some lean muscle mass on.
All the best,
Troy.
Hey Troy, I do recommend resistance training but it is important not to overtrain your body. I would suggest working with a health coach, such as my functional diagnostic nutritional practitioner Michael who can help you add in appropriate training. https://drjockers.com/michael-fdn-p/
Hello. My Pyrrole levels are in the hundreds and i’m in the process of building the most effective treatment plan possible. Is there anything i should know about the results i may get, what the rest of my life may be like, any possible serious physical/mental health concerns I should look out that i may develop (like schizophrenia)? Do you have any other points to make about severe cases of pyroluria not mentioned in the article?
I’ll take anything you have to say regarding severe pyroluria, Thanks.
Hey Chase, sorry to hear about this! The information in this article is what you will need to implement. You may also consider investigating any other underlying infections you may have going on such as Lyme, EBV, etc. as well as any issues going on in the digestive tract.
Is there a one supplement formula developed to take instead so many? My friend is already taking so many pills because he has Jack 2 mutation and he takes a lot os supplements for blood thinning. He had a one supplements for PYROLURIA but his doctor discontinued it. He said that he can’t take so many supplements because they make him very sick…
Hey Angie, I have not come across anything that is adequate for fulfilling the needs explained in this article. To keep it as simple and straight-forward as possible I designed this support pack: https://store.drjockers.com/collections/support-packs/products/pyroluria-support-pack
Dr Jockers. How does one know what supplements they need if they can’t find someone to test them for Pyroluria Or maybe need Candida support. Or adrenal. And stomach? Thank you.
Yes Anne, I would recommend finding a functional health practitioner who can work long-distance with you if you can’t find someone local. Here is how to do that: https://drjockers.com/functional-nutrition-tips-to-find-a-great-health-coach/
Remember to be careful and consult with your doctor with taking excess b6 or zinc.
I took my first 100mg b6 3 days ago, and waked up 3:40 at night with strange feeling.
I contienued to vomit next 4 hours with such power it was hard to gasp air.
Everytime i tried to drink water, eat little bit of banana/apple to get energy, its was time to vomit again. I had no powers to even walk around or stay on my feet.
All I could do was to lay in bed 3 days. I also felt so damn cold even thou I had beanie, 2 blankets and clothes on.
I promised myself that if i would get through this, I would warn others.
So here we are. This is one of the first sites that come up with seach words “pyroluria B6” so I decided to share my experience to highlight that;
even thou our biology is programmed to find one-thing-solves-all -solutions to our problems and to fall into cognitive bias; taking +7142% doses of any vitamin should alway been taken with supervision of doctors.
Yes very true Julia and nausea and vomiting it is the most clear sign of a zinc overload. You most likely did not have this condition and did not need high dose zinc.
she didn’t say zinc, she said B6
B6 overload causes tingling/numbness in feet and hands. Zinc can cause upset stomach. Odds are against the B6 being the cause, but who knows.
Good news is the tingling/numbness of B6 overload goes away when you stop supplementing. I have also heard it’s possible to gauge your B6 needs by how well you remember your dreams. More you remember, the lower the dose of B6 needed.
Hello Dr Jockers. I am looking for help. In the spring of 17. Was told I had food sensitivities. Told to avoid the foods sensitive too. Also use L Glutamine to heal my gut. I was so bloated all the time. And didn’t feel that was my whole issue. January 18 I sought out someone knowledgeable about Candida. He put me on a 5 wk food plan to avoid lots of things. I lost 10#. But still never felt 100%. He also tested my blood and said I had Hashimoto’s. So started me on Naturethroid. Kept upping my done since I was so tired all the time. In August of 18. Did adrenal test and I had adrenal fatigue. Told me to take Ashwagandha. Still never felt good and in the summer started hand tremors. Sought out another physician. She told me I was over medicated. Also said she and her colleagues didn’t think I had Hashimoto’s. So is trying to talk me off Naturethroid and added Levothroxyn since TSH very suppressed. I’m doing an elimination plan and am gaining weight. Even though eliminated tons of foods. I stumbled across your info and asked my functional meds doc. She has never heard of this. Said only way to test is blood for zinc and magnesium level. I mentioned the urine test and she disagrees.
I need help!
So sorry to hear that Ann! I would advise finding a good functional health practitioner to help guide your path: https://drjockers.com/functional-nutrition-tips-to-find-a-great-health-coach/
You mentioned Hemp oil in the article. How does Hemp Oil help with Pyroluria and what should you look for when choosing a hemp oil?
Yes it is a good source of omega 6. Be sure to get a high quality organic hemp oil. Blessings!
Hi ,
I beleive i suffer from pyrroles when i went to an ayurvedic doctor he said is uffered from pitta dosha for the same symptons and suggested herbs like centella asiatica for it just wanted to know your opninion about this herb
Hi James, Centella asiatica has many therapeutic uses. I recommend checking with your primary physician to learn if it can interfere with any other herbs or medicine you are currently taking to see if it is right for you.
i also gott my fatty acids tested and i found my nervonic acid is pretty low any idea how to go about it
Hi James, Your total metabolic test gives insight into your health. It seems like there is a lot going on, I would recommend you find a functional health practitioner to customize a specific plan for them. Here is a helpful article: https://drjockers.com/functional-nutrition-tips-to-find-a-great-health-coach/
is hemp oil the same as marijuana .will it make me pschotic .is it legal to buy hemp oil in india
Hi James, I recommend checking your local laws and import guidelines for any purchase concerns you have. This article provides more information on hemp oil: https://drjockers.com/cbd-oil-benefits/
My partner battle with MND ALS (amyotrophic lateral sclerosis) when he was 69 years old 6 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for totalcureherbsfoundation com and the sensitive cure of their herbal formula he would have been not been alive today,there was significant improvement in the first 4 weeks of usage that gave us hope that he will be alive,His doctor put him on riluzole, letting us know there was no cure until we gave try on total cure herbal supplement that cure him totally form this disease after 15 weeks of his usage.
There is nothing positive about cure ALS condition except for their herbal treatment .
Hey Gary, I am so sorry to hear about this! I am glad that you are finding the herbal supplements are supporting his health! Chronic inflammation is a key contributor to ALS. This article offers some guidance on ways to reduce inflammation and additional supplements that may help.
Dr. Jockers,
We are missionaries in Kenya and not allowed to fly out to the US because of International Flight restrictions. 1 week ago, our 30 year old adopted daughter living near Asheville had a severe headache and her first psychotic episode of her life. She does have ADHD and grew up in Kenya. She went in for a CAT scan and since then has been in a psychiatric ward of a hospital in Hendersonville. She refuses meds and blood tests and has basically just been being observed in the hospital. She slept for the first 4 days. Now she just sits there doing puzzles. Of course, with Covid 19 her husband just had to drop her off at hospital so she is very confused. For years I believed that she had pyroluria (as did she), but because it was difficult for her to pay for supplements she tried to manage things by eating carefully (which she did not always do). We have no contact with her doctor and I am wondering is there anything we can do to help her be treated for pyroluria? We would be happy to purchase the pack and have it sent to her but wondering if it would be allowed in the hospital. Any advice you can give in this complicated situation would be more than helpful. We appreciate your information and godly priorities.
So sorry to hear about this Kym! Yes, I don’t believe the hospital staff would give her the supplements. You would need to ship it to someone who has permission to work with her and use those. Praying for you all!!
This was meant for an earlier post in January.
Hi Dr J, just wanted to say thank you for this really good article and also for responding to so many of the comments. I know it takes time to respond to comments, but as a result even deeper knowledge sharing comes up.
thank you from UK
Thanks James!
Hi, thank you so much for this detailed article and for adding links to studies. There are so many types of Zinc available – which one should I take?
Rowan – zinc bysglycinate is the best form. https://store.drjockers.com/products/zinc-charge
I was diagnosed with Pyroluria earlier this year. Since my dx, I have been doing a lot of research on it to understand the underlying mechanisms, and would love your thoughts.
If pyrroles are created as part of the hemoglobin metabolism process, it stands to reason that perhaps one cause for excess pyrroles is hemoglobin not lasting the full 120 day lifespan it should have. More frequent creation of hemoglobin means more pyrroles. Does that sound correct? Is there research to support this?
Additional questions:
– Glutathione protects and extends the lifespan of hemoglobin. Is there research on treating Pyroluria with large doses of antioxidants and/or cysteine/glycine/glutamine combo? I typically only see NAC mentioned in articles about it, as this one has.
– Is there a good direct to consumer test for amino acid levels that you can recommend?
– Are there other known supplements or ways to protect hemoglobin, for the purpose of reducing pyrrole creation in the first place?
– Is oxidative stress the only thing that shortens hemoglobin lifespan?
– Can oxidation and inflammation in any part of the body lead to this condition?
– I have neurological issues that seem related to the Pyroluria, so I am also approaching this from the perspective of supplements like astaxanthin that reduce brain oxidation status. Are there other nutrients or supplants that directly improve oxidation status of the brain and CNS?
Thanks in advance. 🙂
Thank you for these are great questions. If you have any updates from the last few months regarding any of these questions, please share!
Thanks for the article. You mention Pyroluria can be triggered by traumatic life events. Would living under high tension power lines be on par with a traumatic life event? My family moved to a house that was incredibly close to High Tension power lines when I was a pre-teen. I was sleeping in magnetic fields of 5+ everynight whereas I believe you want them to be 0.3 or lower.
Thanks again
Yes that can absolutely be a physical trauma on your body!