Pyroluria is a genetic condition that is 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.
Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing these symptoms.
You can read more about pyroluria, sometimes called high mauve or pyrrole disorder here
Pyroluria is far more common that we realize and is not considered a real condition in conventional medicine or mainstream mental health.
I’d like to share the prevalence of pyroluria and the many related conditions/syndromes (other than those we have listed on the current Pyroluria Questionnaire from The Antianxiety Food Solution
I discussed some of this in my interview on the Anxiety Summit season 3: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results and in my Closing call 60+ Nutritional & Biochemical Causes of Anxiety and Recommended Supplements so here it is all in one place.
This is an excerpt from my book The Antianxiety Food Solution:
Joan Mathews-Larson is someone who I consider an expert on the subject of pyroluria. In her book Depression-Free Naturally, she reports the prevalence as follows: 11 percent of the healthy population, 40 percent of adults with psychiatric disorders, 25 percent of children with psychiatric disorders, 30 percent of people with schizophrenia, and 40 percent of alcoholics.
Abram Hoffer worked primarily with schizophrenic patients, but he found pyroluria was also present in 25 percent of his nonschizophrenic patients, including adults with anxiety, depression, and alcoholism, and children with learning disorders and behavioral disorders.
According to McGinnis, pyroluria is also present in about 46 percent of people with autism spectrum disorders and 71 percent of those with Down syndrome.
I work primarily with adult women who are anxious, depressed, or both and have found that at least 80 percent of my clients with moderate to severe anxiety have a large number of pyroluria symptoms.
I thought it would be useful to summarize the above percentages for some clarity. I used some educated guesses to get some ranges we may expect to see. Keep in mind that the differing percentages are because of the different populations each practitioner works with:
- the healthy population : 11% (Joan Mathews Larson)
- adults with psychiatric/mood disorders like anxiety and depression: 40% (Joan Mathews Larson)
- children with psychiatric/mood disorders like anxiety and depression: 25% (Joan Mathews Larson)
- children with learning disorders and behavioral disorders: 25% (Abram Hoffer)
- schizophrenics: 30% (Joan Mathews Larson)
- alcoholics: 25% (Woody McGinnis and Abram Hoffer) to 40% (Joan Mathews Larson)
- autism spectrum disorders: 46% (Woody McGinnis)
- Down Syndrome: 71% (Woody McGinnis)
- adult women with anxiety and/or depression: up to 80% (Trudy Scott)
There are other related conditions where there have been reports of improvements in both conditions (when on the pyroluria protocol):
- Introversion – see my blog Am I an anxious introvert because of low zinc and vitamin B6? My response to Huffington Post blog. As of now 100s of people score high on both the pyroluria and introvert questionnaires and report feeling less introverted when on the pyroluria protocol (just read all the comments in this blog).
- Dystonia – see my blog that shares Jay’s story: Pyroluria and focal musician’s dystonia or musician’s cramp. As of now we have 2 people reporting resolution of dystonia and pyroluria when on the pyroluria protocol.
- Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy). Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD. She shared that the pyroluria protocol helped with her TBMD symptoms.
Other factors/conditions to consider:
- Miscarriage – Carl Pfeiffer observed that pyroluria is more common in girls and that girls in the family often look alike. It seems that boy babies are more frequently miscarried
- MTHFR defects – I have been hearing that many people with pyroluria also have one or both of the MTHFR polymorphisms. We know that methylation polymorphisms are a factor in miscarriages and it would be interesting to know if more boys are miscarried.
- Low histamine (histapenia) or high histamine (histadela) – many pyrolurics also have one or the other. I’m not sure of the prevalence but I’m sure Dr. William Walsh has some numbers which I plan to find.
- Chronic fatigue syndrome/CFS – the common issues with CFS and pyroluria seem to be low zinc and low iron, plus inflammation. You can read more here: Pyroluria and chronic fatigue syndrome: is there a link?
- Low oxytocin and social anxiety and autism – the common factors seem to be oxytocin receptor gene (OXTR) defects, low serotonin and low zinc
Other conditions that have a social anxiety aspect, a possible neurotransmitter imbalance with a likely pyroluria connection. These came up as questions during season 3 of the Anxiety Summit and I’ll report back as I find out more:
- Alice in Wonderland Syndrome. I don’t know if there is there a connection between pyroluria and Alice in Wonderland Syndrome (where the person sees large or small objects/people and often has migraines). I had never heard of this condition but my quick search had me wondering about the word “hallucinations.” The original work by Carl Pfeiffer was with schizophrenics who had pyroluria so it’s possible that there is a connection.
- Selective mutism I also don’t know if there is a connection between pyroluria and selective mutism. We do know that selective mutism often goes hand in hand with anxiety and social anxiety.
Both young girls with the above conditions did score high on the pyroluria questionnaire and it will be wonderful to hear if the pyroluria protocol helps them. I really do hope so!
Update: August 23, 2024
Osteopenia/osteoporosis – I’m exploring a possible connection to pyroluria given the role of zinc and vitamin B6, oxidative stress, anxiety and homocysteine in both.
One example are B vitamins (folate, B6 and B12) which help to reduce homocysteine. Elevated homocysteine increases anxiety/panic attacks and it also increases the risk of fractures. Also, vitamin B6 and the B vitamins are key for pyroluria and for helping to ease anxiety in general.
Another factor may be low zinc leading to low stomach acid production, thereby contributing to poor protein digestion and reduced calcium absorption – both important for bone health.
Other possible links include: celiac disease or non-celiac gluten sensitivity, MTHFR polymorphism, oxalate issues, collagen/joint issues, perimenopause/menopause and liver/gallbladder/bile issues.
I will be publishing an in depth blog with all the supporting research links and some case studies, so stay tuned.
If you’re new to pyroluria
If you’re new to pyroluria you can find the current Pyroluria Questionnaire from The Antianxiety Food Solution here.
There is an entire chapter on pyroluria in my book, The Antianxiety Food Solution, where I cover more of the back story, the exact protocol and nuances (for example using vitamin B6/pyridoxine vs P5P/pyridoxal-5-phosphate), testing and much more.
There are many blog posts on the site that address additional aspects of pyroluria – feel free to use the search feature when on any blog post or use this link to find the posts.
Wrapping up and your feedback
Now I’d love to hear from you – do you have pyroluria (or suspect you have pyroluria) and do you have any of the above conditions or do any of them run in your family?
Has addressing your pyroluria with the pyroluria helped you feel more social and helped any of the related conditions?
If you’re aware of any other conditions related to pyroluria please do share in the comments.
With the newest update on osteopenia/osteoporosis I’m particularly interested in your feedback on this aspect as I gather information for a more in-depth blog post.
If you’re a practitioner working with clients/patients with pyroluria I’d love to hear your insights too.
Feel free to share and ask your questions below.