Pyroluria is known by many different names including Pyrrole Disorder, Kryptopyrrole, Kryptopyrroluria, Pyroluria, Mauve Factor and Hemepyrrole. As many as 50% of those with autism, 40% of alcoholics, 70% of schizophrenics, 70% of persons with depression and 30% of persons struggling with ADD may have pyroluria underlying their conditions. There are lifelong symptoms associated with it that tend to worsen with age and stress.
During the synthesis of hemoglobin in the body, waste products called kryptopyrroles are generated. Kryptopyrroles are normally excreted uneventfully. In those with pyroluria, kryptopyrroles bind very strongly to zinc, vitamin B6, and Omega 6. This especially occurs when the individual encounters any sort of bodily stress, whether it be an illness, over-exertion, or mental/emotional stress. The kryptopyrroles are then excreted in the urine, taking these 3 important nutrients with them, which is a very big problem. These nutrients are critical for the functioning of your entire body and mind, including your digestion, immune system, cognitive functioning and emotions.
Symptoms of pyroluria may lead to lifelong issues with severe inner tension, ongoing anxiety, poor stress tolerance (stress of any kind makes symptoms worse), digestive issues including digestion of meat, frequent colds and infections, joint pain or stiffness, acne, eczema or psoriasis, mood swings and reactivity.
The really good news is that once diagnosed, pyroluria is very manageable. The bad news is that ongoing supplementation is needed indefinitely in order for symptoms to remain manageable long term. Without appropriate supplementation symptoms tend to return again in a week or two.
Disorders commonly diagnosed in Pyrolurics:
Alcoholism
ADD/ADHD
Autism/Aspergers
Allergies
Bi-Polar Disorder
Down Syndrome
Epilepsy
Hypothyroidism
Learning Difficulties (ie Dyslexia)
Lyme Disease
Manic Depression
Muscular Sclerosis
Neurosis/Neurotic – can become violent offenders
Obsessive Compulsive Disorder (OCD)
Parkinson’s Disease
Polycystic Ovarian Syndrome
Post Partum Depression
Rheumatoid Arthritis
Schizophrenia
Substance Abuse
Tourette’s Syndrome (Tics)
Unfortunately Pyroluria falls outside the realm of mainstream medicine due to the fact that the only way to rectify the problem is by improving nutritional status, diet, digestion and stress levels. Mainstream medicine relies on drugs to suppress a symptom or relieve suffering, and this form of treatment will not work for a person who has a Pyrrole disorder. Sadly sufferers of Pyroluria fall through the cracks and are often misdiagnosed and given medication or drugs that do nothing to rectify the underlying problem. Unfortunately these medications can lead to further deterioration of a persons health.
People with this disorder have copper toxicity. Copper is an essential trace mineral that is vitally important for both physical and mental health, as long as it is kept in proper balance. Zinc lowers copper in the body. Without it, copper builds up and depletes vitamin C, which results in frequent illness. Thyroid and Adrenal glands are extremely sensitive to copper. Copper toxicity leads to reduced thyroid function (hypothyroidism), which can be diagnosed as Hashimoto’s.
Copper Toxicity leads to headaches/migraines, fatigue, insomnia, depression, bipolar disorder, skin rashes, spaciness, detachment, learning disorders, PMS, memory loss, hair loss (especially among women), osteoporosis and addiction. It also leads to the rise of estrogen, which in large amounts, is a potent carcinogen and can cause cancer.
Copper has a huge impact on children. High-copper mothers pass on excessive copper (and often low zinc) to the fetus through the placenta. It is also passed through breast milk, which can cause a baby to stop nursing prematurely. Common conditions such as ear infections, skin rashes and dandruff usually involve an imbalance between copper and zinc in children. Other conditions include learning and developmental disorders, colic, ADD/ADHD, sleep problems and childhood cancers.
There are positive traits of high levels of copper, which include a warm, caring, sensitive, emotional nature and a child-like quality. Many traditionally feminine traits are associated with high copper levels, such as softness, gentleness and intuitiveness. High copper people are often young looking. But, if copper gets too high, negative personality traits show up. These include spaciness, poor memory, racing thoughts, living in a dream world, childishness, excessive emotions, sentimentality, tendency to depression, fearfulness, hidden anger/resentment, phobias, psychosis and even violence.
Some with high copper dislike protein. They become obligatory vegetarians and crave high carbohydrate diets. This is because too much copper impairs liver function, which is necessary to break down protein. They are no longer able to digest meat very well. Protein feels heavy or causes other symptoms. However, these individuals usually NEED to eat protein because red meat is the best dietary source for zinc, which lowers the levels of copper, and makes the digestive enzymes needed for the breakdown of protein. In fact, becoming vegetarian actually makes things worse because vegetarian proteins are high in copper, such as nuts, beans, seeds and grains. Once zinc is introduced, the taste for meat will come back, as will the ability to digest it.
Vitamin B6 is essential for dopamine production, which is an essential neurotransmitter in the brain. When the body of a pyroluric individual is stressed, Vitamin B6 is excreted, thus the loss of dopamine. Dopamine has been called the “pleasure neurotransmitter.” The body may crave sweets/carbs as a biologial attempt to increase dopamine, thus increase pleasure.
Unfortunately, Zinc is also dumped in this process, which is essential to blood sugar regulation by influencing carbohydrate metabolism, increasing insulin response, and improving glucose tolerance. There is a clinical correlation between low zinc levels and insulin resistance. Insulin resistance is correlated with obesity and body fat distribution.
Incidently, zinc deficiency is also related to the overgrowth of candida (yeast). Zinc deficient individuals may experience frequent yeast infections. They may also have a yeast overgrowth in the gut, which results in further cravings for sugar/carbs, as yeast feed and grow on these things.
Below is a list of symptoms associated with Pyroluria. If you experience 15 or more of these, it is likely that you have Pyroluria.
1. Little or no dream recall (B6)
2. White spots on finger nails (Zinc)
3. Poor morning appetite +/- tendency to skip breakfast (Zinc)
4. Morning nausea (B6)
5. Pale skin +/- poor tanning +/- burn easy in sun
6. Sensitivity to bright light (Zinc)
7. Hypersensitive to loud noises (Zinc)
8. Sensitivity to smells (Zinc)
9. Poor ability to cope with stress (Zinc and B6)
10. Mood swings or temper outbursts (Zinc)
11. Histrionic (dramatic, emotional) tendency (Zinc)
12. Argumentative/enjoy argument (Zinc)
13. New situations or changes in routine are particularly stressful (B6)
14. Much higher capability and alertness in the evening, compared to mornings (Zinc)
15. Poor memory (Zinc and B6)
16. Obesity or Abnormal body fat distribution (Zinc)
17. Belong to a family with a lot of look-alike sisters
18. Dry skin (B6)
19. Anxiousness or nervousness, fearful, lifelong inner tension (B6)
20. Reaching puberty later than normal – growth after the age of 16 (Zinc)
21. Difficulty digesting, a dislike of protein or a history of vegetarianism (Zinc)
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin (Zinc)
24. Poor sense of smell or taste; preference for spicy foods (Zinc)
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue or exhaustion (Zinc)
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 (Zinc and B6)
30. Easily upset by criticism, offended easily
31. Bad breath or body odor when ill or stressed (Zinc)
32. Prone to acne, eczema or psoriasis (Zinc)
33. Thin skin
34. Hyper-pigmentation of the skin
35. Bouts of depression or nervous exhaustion (B6)
36. Prone to frequent colds or infections (Zinc)
37. Abdominal pain; constipation, irritable bowel syndrome (Zinc)
38. Hair loss (lack of hair on head, eyebrows and/or eyelashes) (Zinc)
39. Irregular menstrual cycles, PMS (B6)
40. Low libido
41. Allergies (Zinc)
42. Tingling in arms and legs (neuropathy) (B6)
43. Migraines (B6)
44. Muscle pain (achey, flu-like tenderness) (B6)
45. Frequent yeast infections/yeast overgrowth (Zinc)
46. Reading difficulties (e.g. dyslexia)
47. Get motion sickness (B6)
48. Cold hands and feet (Zinc)
49. Codependency
50. Substance abuse/addiction (B6)
51. Creaking joints, joint pain, knee pain (B6)
52. Overcrowding of teeth in upper jaw (Zinc)
53. Poor looking tooth enamel; tendency for cavities (Zinc)
54. Delusions, hallucinations, paranoia (Zinc)
55. Emotionally unstable (Zinc)
56. Pessimism (Zinc)
57. Early greying of hair (Zinc)
58. Insomnia (Zinc and B6)
59. Prone to stitch in side when running (Zinc)
60. Hyperactivity (Zinc and B6)
61. Fluid retention (B6)
62. Obsessive Compulsive Disorder, which includes collecting/hoarding (B6)
63. Seizures (B6)
64. Hypoglycemia (Zinc)
65. Frequent ear infections as a child (Zinc)
66. Suicidal tendencies (Zinc)
67. Gluten intolerance (Zinc)
68. Prone to ovarian cysts (Zinc and B6)
69. Craving for sweets/carbs (Zinc and B6)
70. Tremors (B6)
71. Age related Macular Degeneration (Zinc)
72. Low Progesterone = miscarriage in first 7 weeks or early menopause (B6)
As noted, if you experience a combination of the symptoms above, you likely have pyroluria. This can be tested through a simple urine test, however testing your levels of B6 (urine), zinc (blood) and copper (blood) are much more important. You will want to test your plasma zinc and serum copper
Pyrolurics have a greater than normal need for zinc, vitamin B6 and omega-6 fatty acids. These can be supplemented individually or incorporated into the diet. The favoured forms of these nutrients are Zinc picolinate and Pyridoxal-5-phosphate (P5P) for B6. Vitamin B6 (P5P) is water soluble and is not stored in the body, so it’s depleted rather quickly. It may be best to supplement this every few hours. B6 requires magnesium to be effective, so one must also ensure intake of magnesium. The standard american diet is full of omega-6 fatty acids due to over-use of cooking oils, so it’s often not necessary to supplement this. The body does need dietary arachidonic acid (found in eggs, butter, red meat and liver) and the essential fatty acid GLA (found in supplements like black currant seed oil and evening primrose oil).
Here is a great link with information on the importance of zinc, types of zinc to take, suggested dosage, and side effects of over-consumption, which is rare.
Foods high in zinc, from highest to lowest:
1. Seafood: Oysters, crab and lobster
2. Beef and Lamb
3. Wheat Germ
4. Spinach
5. Pumpkin and squash seeds (also sunflower chia and flax)
6. Cashews (also pine nuts, pecans, almonds, walnuts, peanuts, hazelnuts)
7. Cocoa and chocolate (also high in copper)
8. Pork & Chicken
9. Mung beans (also baked beans, kidney beans, chickpeas)
10. White mushrooms (also Portabella and shitake)
The safe upper limits for zinc are listed below.
| Life Stage | Upper Safe Limit |
|---|---|
| Birth to 6 months | 4 mg |
| Infants 7–12 months | 5 mg |
| Children 1–3 years | 7 mg |
| Children 4–8 years | 12 mg |
| Children 9–13 years | 23 mg |
| Teens 14–18 years | 34 mg |
| Adults | 40 mg |
Zinc combined with certain foods may not be absorbed into your body, so it is important to avoid the following foods for at least 2 hours after you take zinc: Bran, Fiber-containing foods, Phosphorus-containing foods such as milk or poultry, Whole-grain breads and cereals. Zinc, Magnesium and Calcium compete for absorption, so it is best to take them separately to ensure you are getting the most out of your supplements. Unlike other trace elements zinc does not get stored in the body. For every 15mg of zinc you need to take 1mg of COPPER to maintain the correct balance.
Here is a great link with information on the importance of B6, suggested dosage and side effect of over-consumption.
Foods high in B6, from highest to lowest
1. Rice bran, brown rice
2. Chili Powder, paprika, garlic and other herbs/spices
3. Pistachios
4. Garlic (especially raw)
5. Liver
6. Yellow-fin Tuna, salmon, cod
7. Sunflower and sesame seeds
8. Pork tenderloin
9. Molasses and sorghum syrup
10. Hazelnuts
The safe upper limits for vitamin B6 are listed below.
| Life Stage | Upper Safe Limit |
|---|---|
| Birth to 12 months | Not established |
| Children 1–3 years | 30 mg |
| Children 4–8 years | 40 mg |
| Children 9–13 years | 60 mg |
| Teens 14–18 years | 80 mg |
| Adults | 100 mg |
Here is some more information, which includes testing and treatment.
Here is another great site for information
Testing can be done inexpensively, without a doctor, at the following labs:
$235 – DHA Laboratory (includes zinc/copper testing)
$80 – Direct HealthCare Access
$79 – RiordanClinic
Doctors who treat Pyroluria
Videos
Facts & Myths About Pyrrole Disorder
In related news, Vitamin B6 (P5P) is becoming very controversial as the drug company, Medicure Pharma Inc, is petitioning to have the substance banned from OTC sale. The company plans to market it in their form of a vitamin/drug (named MC-1) after recent research is finding that it is effective in reducing injury associated with Ischemia. It has also been shown to reduce the risk of colon cancer.
http://www.ncbi.nlm.nih.gov/pubmed/12020872
http://www.ncbi.nlm.nih.gov/pubmed/23467420
All this means is that we will no longer be able to buy P5P over the counter. Instead, we will have to get a prescription for it and pay a higher price to the pharmaceutical companies.
References:
http://www.ncbi.nlm.nih.gov/pubmed/18062169
http://jn.nutrition.org/content/133/5/1473S.long
http://www.ncbi.nlm.nih.gov/pubmed/20097602
http://www.ncbi.nlm.nih.gov/pubmed/2761676
http://www.ncbi.nlm.nih.gov/pubmed/18383989
http://www.ncbi.nlm.nih.gov/pubmed/9659710?dopt=Abstract
http://www.mothernature.com/Library/Bookshelf/Books/10/116.cfm
http://www.mothernature.com/Library/Bookshelf/Books/10/116.cfm
http://www.riordanclinic.org/research/articles/89024739.pdf
http://www.biobalance.org.au/_downloads/discerning-the-mauve-factor-part-ii-galley.pdf
- The Relationship Between an Unknown Factor (US) in the Urine of Subjects and HOD Test Results. J Neuropsychiatry 2:363-368, 1961. (by Abram Hoffer MD, PhD & Humphry Osmond, M.D.)
- The Presence of Unidentified Substances in the Urine of Psychiatric Patients 2:331-362, 1961 (by Abram Hoffer M.D, PhD, et al)
- The Presence of Malvaria in Some Mentally Retarded Children. Amer J Ment Def 67:730-732, 1963. (by Abram Hoffer M.D, PhD, et al)
- Malvaria: A New Psychiatric Disease. Acta Psychiat Scand 39:335-366, 1963. (by Abram Hoffer MD, PhD & Humphry Osmond, M.D.)
- Malvaria and the Law. Psychoso-matics, 7:303-310, 1966. (by Abram Hoffer M.D, PhD, et al)
- Mauve spot and schizophrenia. American Journal of Psychiatry 125(6):849-851, 1968.
- Biochemical relationship between kryptopyrrole (mauve factor and trans-3-methyl-2-hexenoic acid schizophrenia odor). Res Commun Chem Pathol Pharmacol 1973 (by Carl Pfeiffer MD, PhD, et al.)
- Studies on the occurrence of the mauve factor in schizophrenia [article in Polish]. Psychiat. Pol., 7(2):153-9, 1973.
- Treatment of pyroluric schizophrenia (malvaria) with large doses of pyridoxine and a dietary supplement of zinc. J. Orthomolecular Psychiatry3(4):292 1974 (by Carl Pfeiffer PhD, MD & Arthur Sohler PhD)
- A rapid screening test for pyroluria; useful in distinguishing a schizophrenic subpopulation. J. Orthomolecular Psychiatry 1974 3(4):273 (by Arthur Sohler PhD)
- Neurological and behavioral toxicity of kryptopyrrole in the rat., Pharmacol Biochem Behav 3(2):243-50 1975
- Ward, J.L., Relationship of Kryptopyrrole, Zinc and Pyridoxine in Schizophrenics,Journal of Orthomolecular Psychiatry, 1975.
- Irvine, D.G., Pyrroles in Neuropyschiatric and Porphyric disorders: confirmation of a metabolite structure by synthesis, Life Sci, 1978.
- Zinc and Manganese in the Schizophrenias. J. Orthomolecular Psychiatry 12(3):215 1983 (by Carl Pfeiffer PhD, MD and Scott LaMola, BS)
- A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria., Med Hypotheses 19(4):333-8 1986
- Pfeiffer, C.C. and Holford, P., Mental Illness and Schizophrenia: the Nutritional Connection, Harper Collins, 1987.
- Pyroluria – Zinc and B6 deficiencies. Int Clin Nutr Rev 1988 (by Carl Pfeiffer MD, PhD, et al.)
- Pfeiffer, C.C., Mailloux, R., and Forsythe, L., The Schizophrenias: ours to conquer, Biocommunications Press, 1988.
- Cutler, M.G., Graham, D.J., and Moore, M.R., The Mauve Factor of Porphyria, 3-ethyl-5-hydroxy-4,5-dimethyl-delta-3-pyrrolline-2-one: effects on behaviour of rats and mice,Pharmacology & Toxicology, 1990.
- The Discovery of Kryptopyrrole and its Importance in Diagnosis of Biochemical Imbalances in Schizophrenia and in Criminal Behavior J. Orthomolecular Medicine 10(1):3 1995 (by Abram Hoffer M.D, PhD)
- Fatty Acid Profiles of Schizophrenic Phenotypes, 91st AOCS Annual Meeting and Expo San Diego, California 2000 (by William Walsh PhD of the Pfeiffer Treatment Center)
- Urinary Pyrrole (Mauve Factor): Metric for Oxidative Stress in Behavioral Disorders, presented to the Linus Pauling Institute, 2003 (by Woody R. McGinnis MD)
- Campbell-McBride.N., Gut and Psychology Syndrome, Medinform Publushing, 2004.
- Forsgren.S., 2010, Kryptopyrroluria (aka hemopyrrollactamuria): A major piece of the puzzle in overcoming Lyme disease, Public Health Alert, vol. 5, no. 5, viewed 23rd January 2011. http://www.publichealthalert.org/Articles/scottforsgren/2Klinghardt.htm
- McGinnis, W.R., 2004, Pyroluria – Hidden Cause of Schizophrenia, Bipolar, Depression and Anxiety Symptoms, International Guide to the World of Alternative Health, viewed 24th January 2011.http://www.alternativementalhealth.com/articles/pyroluria.htm
- Grundy SM. Hypertriglyceridemia, insulin resistance, and the metabolic syndrome. Am J Cardiol 1999;83:25F-29F.
- Chen MD, Lin PY, Lin WH. Investigation of the relationships between zinc and obesity. Kao Hsiung I Hsueh Ko Hsueh Tsa Chih 1991;7:628-634. [Article in Japanese]
- http://www.drugs.com/cons/zinc-supplement-oral-parenteral.html
The River to Recovery 
This is a very good article on pyroluria, extremely thorough. I have pyroluria myself. Getting diagnosed is one of the best things to happen to me. It explained a lot about different health problems I have. However, I would like to add that because these nutrients are constantly being removed from the body, people with pyroluria need to take much higher levels than normal of Zinc, B6 and GLA. The levels listed for normal people just WILL NOT do the job.
I personally take 150 mg of zinc, 350-400 mg of B6 with 10 mg. of P5P and about 600 mg of gamma linolenic acid along with other supporting nutrients. I have always craved fat and foods with high levels of arachidonic acid. We eat a lot of dark meat chicken and duck in our house. You can’t get anyone to suffer through eating chicken wings or chicken breasts in my family, too dry and tasteless (less arachidonic acid). I don'[t know the specifics of the uses of arachidonic acid in the body, but I was diagnosed at the Pfeiffer Treatment Center when Dr. Willam Walsh was the senior scientist there. I was informed that taking the gamma linolenic acid mitigates the problems of arachidonic acid deficiency because it is used to make prostaglandins in the body. I was also told that P5P, pyridoxal 5 phosphate, is a derivative of B6; it is the more activated form, and is often necessary to give the B6 a “jump start.” Although I have heard of some people recently just taking P5P, they say that 1 mg of P5P is equal to 10 mg of B6. I tried it and it didn’t work for me, so I don’t know how valid this is.
Try again P5P with enteric coating, I also had no effect with normal P5P. Seems to be destroyed in stomach acid.
This is a fantastic blog post. Thank you so much for the level of detail and referencing. I was wondering if you could direct me to some more information on the relationship between zinc, B6 and blood sugar regulation. My son who is 6 seems to have so much difficulty with this and it is the symptom that shows up first and seems to then lead into moods swings, aggressiveness, anxiety etc. my sister says he gets the worst case of hangery she knows. I’m wondering if you think this is just the first way that we are able to see the development of his symptoms.
Cheers. You seem like a major hero – mum on a mission!
Charlotte.
Hi Charlotte,
While I’m unable to direct you to any specific site stating the relationship between pyroluria and blood sugar regulation, there is a lot of information out there stating that Type 1 and Type 2 diabetics tend to be deficient in both zinc and B6. Stress can cause low blood sugar, which causes the anxiety and irritability. Eating protein at breakfast can help. You might also look into Glutamine. It is an amino acid that helps to regulate low blood sugar levels and is calming, among other things. Here are a couple of links:
Glutamine for low blood sugar
Glutamine – Brain Food for Autistic Children
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Hi, could you in theory eat about 10 oysters a day to get sufficient zinc and B6 to treat pyroluria?
In theory, oysters could treat a zinc deficiency. I have seen reported zinc content anywhere from 8mg to 16mg per oyster. There is very little B6 in an oyster, however.
I have not been diagnosed with PD but have many of the symptoms. I have a couple of ques tions:
Does a feeling of constant discontentment and restlessness come with this disorder?
Does being a loner come with this?
Any insights and/or thoughts are appreciated.
Discontent and restlessness seems to be able to equate to mild depression and anxiety, both of which are common symptoms of pyroluria. I believe that many people with pyroluria feel like loners, or feel as if they are on the outside of things. Many are described as being shy.
thank you so much for this well detailed blog , is there anything I should avoid during the treatment?? thank you so much ,
Hi, this page is very insightful and I’m hoping someone can help me in the right direction!?
I’m living in London, UK and don’t know where to turn for treatment. I was diagnosed with HPU in The Netherlands about 5 years ago and have been self treating with a low doses of Depyrrol supplements. I’m feeling it might not be enough and want to be checked and guided by a specialist but I don’t know if they even do this in London?
I went to the GP with this question and he basically laughed in my face, saying that he never heard of the condition and when I asked him to look at the description online, he told me disorders get “made up” all the time.
I left the doctors feeling embarrassed and clueless of how to seek further help. I have very little energy to actively search so I do hope someone here knows more?
Kindest regards,
Fenja
Hi Fenja, I saw Margo Goldspink at the Olive Tree Clinic London. Margo is Walsh Protocol trained and helped me tremendously with pyroluria and undermethylation.
Best wishes
Ellie
Thank you so much Ellie, I lost the link to this website and it took me a while to find it but I will have a look into it and appreciate your help very much!
Kindest regards,
Fenja
Hi Ellie,
I have been tested and have pyrroluria. My anxiety and OCD is quite bad and I have been given compounded tablets, these contain zinc piccolinate 10mg, p5p 2.5mg, methyl b12 1mg, magnesium 400mg, riboflavin 25mg, biotin 1mg, folinic acid 1mg. I am wondering about under/over methylation and hoping that I have been prescribed the right things, as I think the Dr said I am an undermethylater. Also what do you know about having dairy and wheat gluten in my diet, please?
Thanks,
Leisa
Leisa, how have things been going with your compounded tablets? In all honesty, it doesn’t seem like you’re getting much of the nutrients that you need, based on the doses you listed. I’m guessing they’re not doing a lot for you. I always suggest that people try going gluten and dairy free for a few months to see how they feel. If/when you re-introduce either of them into your diet, you have to really pay attention to any symptoms they may be causing. Have you been tested for the MTHFR mutation? If you have a mutation here, you really want to stay away from anything that has been fortified with folic acid, which is in most breads and pastas. This can cause undermethylation, which equates to high homocysteine, which can also aid in increased anxiety.
Thank you so much for sharing your knowledge. I was diagnosed with pyrroluria by my kinesiologist yesterday, my weakness, insomnia, bloating now make sense. I scored 15 on your questionnaire. What do you think of the ketogenic diet ?
Based on your symptoms, it sounds like your liver may not be functioning very well. I believe the ketogenic diet can be very helpful for a variety of health issues. Here is some great information for anyone considering it. http://thepaleomama.com/2016/04/the-ketogenic-diet/
I’m stunned to discover this site and this article. I was diagnosed with pyroluria ten years ago after being miserable with it since adolescence by a Doctor of Chinese Medicine who herself has pyroluria. I had a crisis of near adrenal failure in my late 40’s. I tend to need to eat a ‘Paleo’ diet, but recently, because I love to cook and am an organic veg gardener, took a vegan intensive without giving up animal protein. It led me to try to introduce a little grain (am celiac, so no gluten), and some beans into my diet and more vegetable starchy carb. By week four I was crashing, having intense pyroluria symptoms–racing thoughts, terrible tension, a flare in chest wall inflammation, weepiness, weakness, insommnia, which all topped my high P5P and zinc picolinate supplementation. Today I strictly listened to what my body said it wanted me to eat and ended up eating pork at noon and a large portion of shortrib this evening and little carbohydrate all day. The symptoms have all calmed down. Per omega six, I have a terrible reaction to evening primrose oil and other sources of plant omega 3;s and 6’s and react to too much fish oil as well. Omega 3’s seem to create an inflammatory response in my body. Since I have a very pure diet for decades, including no veg oils other than olive, no sugar, no alcohol, no processed food, no adulterated fats, 95% organic, and free range, grass fed and finished meats, I don’t get any extra omega 6’s. How could I do that without also getting the omega 3’s that seem to cause such havoc in me? I have both MRHFR mutations and histadelia and have brought down copper levels that were through the roof, to merely high levels. My homocystiene and CRP levels test very low, probably because of my diet. Thank you so very much for more and better information than I’ve ever had.
Hello
I live in Brazil but here any kind of professional don’t even know or heard about the word Pyroluria. In my opinion and experiences its extremely difficult to find a therapist that goes deeply into insights like pyroluria as I almost didn’t find any content about it in portuguese so I’d like to try it myself as I dont have another way. Only Omega 3, primrose oil, zinc and b6 can do the job? If possible please could you write for me the compounds doses and types for begginers? How do you think i can start with a supplementation? Thanks.
Hi,
It sounds very much like I could have this, except that the article states that there is usually high estrogen related to pyroluria. I recently tested very low for estadiol does that mean that I probably don’t have this?
While estrogen dominance is more common, every person is different. There may be something else at play. Were your progesterone and/or testosterone levels high?
It turns out I do have pyroluria along with some other issues. Thanks for the thorough article! I have referenced back to it many times!
As you may know, the doses of B6 and zinc typically prescribed for pyroluria are much higher than the safe upper limits (100 and 40 mg respectively) you posted. In studying this subject myself recently after being diagnosed, I am having a hard time reconciling this, and don’t know what the right answer is. I myself was advised to take 300 mg of B6 PLUS 50 of P5P, and 75 mg of zinc. Any thoughts?
Hi Peter, Yes, you are correct. Dosage is truly dependent upon the individual, as well as their blood work….which may need to be repeated to find the right dosage for your body. I have learned when I need to increase my dosages based on stress levels and how I’m feeling. Truly, everyone needs to learn to listen to their body, and ask themselves “why am I feeling this way,” or “why am I acting like this?” You may come to the conclusion that you’re taking too little or too much of something. It’s always good to have a baseline, increase from there and note how you’re feeling. Your prescribed dosages do seem high, so do what is comfortable for you to start with and work your way up. You’ll find the right balance for you.
Please be careful. I was wrongly diagnosed with pyroluria and took the high dosages. Zinc depletes Copper, as you may already be aware.
I am told these doses are standard Walsh protocol and not that high. One person’s high is another’s low apparently. Separately, I have been reading about under and over methylation and I find the list of traits supposedly attributable to each highly confusing. I test as mildly undermethylated, but I have many traits on both lists, and in fact my more troublesome ones are all supposedly indicative of overmethylation. It doesn’t inspire a lot of confidence in the Walsh paradigm, I must say.
Uh — how can I take this seriously? This is Dr. Mensah taking about undermethylation.
Many undermethylated persons in the general population tend to be high-achievers and have good mental health. These people tend to be our doctors, lawyers, educators, secretaries, corporate executives, professional athletes and scientists who strive for high career accomplishment. Common to each of these is the perfectionist tendency prompted by undermethylation.
It’s so sweeping a generalization — methylation status determines who becomes a doctor or secretary?? — as to be absurd in my opinion.
He mas a similar spiel on overmethylation.
Peter, when you have access to a database of over 30K people from studies over many decades … then you too can make some “general” observations.
I have experience in this now through a family member (a recent Mensah patient), and Dr. Mensah’s comments matches my observations. Have you got any real experience? Somehow I doubt it.
Learning about and treating pyroluria has been nothing short of miraculous for us.
There are trolls out there paid by the pharmaceutical organizations. Hope you are not one of them. There is no money when patients cure themselves using vitamins instead of paying for worthless prescriptions used as tranquilizers.
I just want to thank you so much for your amazingly thorough article! Pyroluria explains the struggles of my whole life, and I’m quite relieved to know what it’s all been about. All I want in the world is to be calm and capable of positive emotions. I’m so tired. I see my Dr in November for a plan of action but I hope to get some relief before then. Thank you for hope.