Pyroluria is associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. If you have pyroluria you may experience varying degrees of anxiety or fear, often starting in childhood, and you usually manage to cover it up and push through. You may build your 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.
It’s not well-recognized in the medical profession and has long been considered a genetic condition. More recently some practitioners have been proposing that it may be triggered by environmental toxins and that it’s not only genetic. Either way, symptoms can start to resolve within a week when low levels of zinc and vitamin B6, together with some other nutrients are addressed. Stress management is key. This can be emotional stress and the stress of toxin exposure, infections like Lyme disease, mold toxicity and even low blood sugar and gluten issues.
We would typically not connect social anxiety/pyroluria with low oxytocin, vagus nerve function or connective tissue disorders but if you read on you’ll see there are some interesting connections.
Oxytocin, social anxiety and zinc
Research has found that oxytocin levels correlate strongly with levels of social anxiety. A paper published in the Journal of Psychiatric Research looked at how variations in the oxytocin receptor (OXTR) gene is associated with an increased risk of anxiety, stress and depression in individuals with a history of exposure to early life stress. Supporting low levels of oxytocin can ease the threats of social interactions.
What is interesting is that zinc, a key nutrient for pyroluria, is needed for binding oxytocin to its receptor. You can read more about all this here: Oxytocin, social anxiety, pyroluria and autism
Sociability improves vagus nerve function and thriving at home alone
Increased sociability helps improve vagus nerve function. It’s all good and well to recommend getting out and hanging out with more people but if you have pyroluria it’s really challenging. It’s also hard work, very stressful and the added stress makes your pyroluria symptoms worse so it becomes a vicious cycle.
You can read all about this here: Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc. There is an updated section on social isolation during coronavirus and how some people are thriving being home alone.
Pectus excavatum and Ehlers-Danlos Syndrome
Pectus excavatum is an indentation in the chest wall and is related to problems with connective tissue. When it comes to pyroluria and pectus excavatum, this is what we see in common: social anxiety and depression, low zinc and low vitamin B6, dental crowding and sometimes Ehlers-Danlos Syndrome (EDS). I write more about this here: Pectus excavatum and pyroluria: is there a connection?.
I’ve written an entire blog on Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. Anxiety, depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorders are all common with EDS. Many folks with EDS report better less social anxiety, improved mood and often improved physical symptoms/reduced pain on the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi.
Resources for you
- My book The Antianxiety Food Solution (my Amazon affiliate link) has an entire chapter on pyroluria. Read it and become a savvy health-advocate for yourself. Share a copy with your doctor and point out the references.
- Here is the pyroluria questionnaire. Here is a blog if you’re new to pyroluria and the associated conditions.
- You can find the pyroluria products in my supplement store here.
Please do share if you have pyroluria or score high on the questionnaire and have seen improvements in your social anxiety and any physical symptoms.
Hello I am a male, an artist, and I believe strongly that i suffer from Pyroluria as well as low methylation. I have all the personality traits and have seen marked improvement with b6 and zinc. I also seem to have some of the weirder anecdotal things. I have 5 sisters one of whom has the indented chest cavity. But she doesn’t seem to have the personality traits associated with the syndrome. I don’t know if this matters but my parents are third cousins. Any thoughts?
Albert
So glad to hear about the marked improvement with B6 and zinc. Re 5 sisters, many girls in the family are common – they often look quite alike. It’s interesting one sister has pectus excavatum and not the social anxiety/pyroluria. It may show up later in life for her and your other sisters – many women notice issues during perimenopause or easlier when under stress (mental or physical like Lyme, heavy metals, gluten etc).
I’m not aware of a pyroluria link with 3rd cousins.
Hi,
Great info, love your information!
Methylated B6,Zinc picolinalate helped me alot with social anxiety, general body stress! Recently introduced Lydtke L- Tryptophan on your advice from reading about different types, it has helped me more than I anticipate with anxiety and negative thoughts! Thank you!!
I have been thinking about trying GABA and was wondering which brand you would recommend!
Warm Regards,
Elizabeth
Elizabeth
Thanks for sharing your feedback on B6, zinc helping with social anxiety/body stress and tryptophan for anxiety/negative thoughts. I’d love to hear how bad things were before and how much of these nutrients have helped
You can find GABA products I use here https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/
Keep us posted
I had the test run through DHA laboratories and it came back borderline (13.53) kryptopyrrole. Should I be supplementing?
Thanks
Kallie
Urine tests are often borderline and unfortunately false negatives are common. I have clients do the protocol if they score >15 and then monitor their response.
I still have all those symptoms despite having tried the pyroloria protocols religiously! I’m an introvert, and if I do go out and socialise (which I love on occasion), I prefer one to one interactions with my kind. Hate groups of more than 3. Always have, aLways will. 🙂
Drew
It really can get easier when it’s addressed! I know you’re not the kind of person to give up! This is how we tackle things when someone isn’t responding to the pyroluria protocol https://www.everywomanover29.com/blog/pyroluria-protocol-why-arent-i-getting-results-trouble-shooting-checklist/ Notice mold is on the list – if I recall you have been dealing with mold toxicity/exposure?
Thanks Trudy. Yes, re the mold – will be interesting to see the changes after finally moving home in the summer to greener, brighter, healthier and more peaceful pastures…! 🙂
Trudy, I appreciate that you are bringing these issues up for all of us to learn.
As one who has … tackled a lot of “mystery” health issues and symptoms for years (sought help from both traditional and alternative arenas with frustrating progess); a confirmed positive test result for pyroluria; confirmed mutations in methylation genes and suspected multiple types of EDS (ehlers danlos syndrome, awaiting a geneticist consult) … I feel strongly that there is an inter-relationship between all of these … and that it starts with genetics.
I would encourage anyone who has landed on this post/page, to seriously consider the tie in with Ehlers Danlos and to do tons of research and reading … because EDS is sooo much more than a hypermobile joint health condition (that’s what it’s famous for). At it’s core, it is a dysfunction of collagen thru the entire body, all organs, vessels etc. and thru this dysfunction, it creates “secondary” disease conditions that we’re all familiar with (and I’ve been diagnosed with)… candida, leaky gut, gut dysbiosis, mast cell/histamine, digestive issues, the list goes on and on. There are 13 or more versions of EDS, each very unique.
My personal, non-medical guess as to the tie in to some of the anxiety aspect is two fold … first, that EDS impacts the myelin sheath of nerves, affects the function of the vagus nerve … for me, one issue is that it also affects the spine (think dowager’s hump, forward head position) which I believe will affect the communication function of the vagus nerve … and secondly, that the impact of EDS on the gut messes with our neurotransmitter production big time.
Still learning … obviously, I’m on my “soap box” about EDS because once I recently started to read about it, I realized that I have shown symptoms my entire life … and that my Mom did … they say EDS is a rare disease, I believe it’s just rarely diagnosed.
Pam
Thanks for sharing your insights. I agree totally with all of this! And leaky gut/gut issues also leads to leaky brain and other “leaky” organs. And big impact on microbiome and neurotransmitter production and other nutrients produced in the gut.
The connections to myelin sheath of nerves/affecting the function of the vagus nerve is an interesting one I’d like to explore. The spine/forward head position/vagus nerve impact makes sense too. Of course we’re seeing a lot of this with cell-phone use too!
You may find this helpful – Vagus Nerve summit is happening right now https://www.everywomanover29.com/blog/the-vagus-nerve-impacts-mood-anxiety-immune-response-digestion-and-heart-rate/ I am now interested to see if any of the experts talk about EDS!
Please keep us posted on your geneticist consult results. Sadly it often takes many years and consults and testing to get a confirmed diagnosis. It should not be so difficult.
Depression, thyroid, chronic fatigue, autoimmunity, anxiety and use of LDN (low dose naltrexone. We are in the middle of moving so your awesome book is packed away. Do you ever use this medication in your treatment?
Patti
I am a nutritionist and can’t prescribe medications so no. For someone looking for endorphin support I recommend DPA/Endorphigen by Lidtke.
Hello Trudy. I recently heard your talk on the Vagus Nerve Summit and my ears pricked up! I had never heard of Pyroluria before. I took your quiz and scored 31 my sister scored 32, another sister who is a different blood type and different personality scored 5. I have lots to learn and will use the resources you recommend in your blog to start my learning. I had already come to supplementing with Zinc and B6, plus a host of others in recovering myself from chronic fatique, hypothyroidism, EMF sensitiviity and various other lesser conditions. I also have I believe methylation problems and most of my healing is focussed on detoxing. My reaching out to you is that you mentioned that B6 can cause peripheral neuropathy and I’m now wondering whether this is the cause of mine that developed late September 2019. I had been taking P5B 50 for about 8 months or so, building slowly as I have had to with many supplements. I have also recently found out that B1 deficiency can cause peripheral neuropathy so I was just about to start taking this in the form of Benfotiamine 100mg. I am wondering whether I should stop the B6 or start the B1 or both at the same time? What would be the time span for either to have an effect? weeks or months? I am also now wondering if its caused by an imbalance between B1 and B6 ? My neuropathy is a slight buzzing feeling in both feet and ankles, sometimes the lower leg. There is a sense of fullness as if slightly swollen and puffy – but it isn’t. Initially I thought it was due to my EMF sensitivity but I’ve ruled this out now. If you feel able to comment on this I would be grateful for your input. I am in UK and 62 and am utterly amazed that how I’ve been my whole life could be down to nutrient deficiencies. I’m also wondering if you have explored blood types. as my personality is definitely the personality trait of many with Blood Type A. I am so pleased to have found out about Pyroluria, I have heard interviews with you in the past but never picked up on this. Wishing you well. Wendy x
Wendy
Glad to hear you’re learning about pyroluria. I can’t offer specific advice for you via the blog. I’ve always found neuropathy caused by excess B6 to resolve when B6 is stopped (even though some folks report it has long term effects). Low B6, low B1 and low B12 can all be factors with neuropathy as can dietary oxalate issues and gluten issues so teasing all this out is key. EMFs too.
I have not explored blood type and personality
Hi Trudy I scored very high on the pyroluria questionnaire. I also have pectus excavatum. I am now following the protocol for pyroluria a few weeks now I am starting to slowly see an improvement in my social anxiety and some light at the end of the tunnel. I have been taking the b6 and started to have dream recall again. Then I stopped the b6 and I stopped having dream recall so I have started again. And i tried it once more and the same thing happened. I was just wondering about that. I also have restless leg and numbing in the fingers.
I’m really interested in pyroluria. My son was diagnosed with high functioning aspergers age 11 (due to his social isolation/ lack of eye contact) but i’ve always felt this was an incorrect diagnosis. I’ve only recently stumbled across pyroluria after researching under and overmethylation. My son has symptoms for both which makes me think pyroluria needs to be investigated further. I was really interested to read about the Vagus nerve connection. My son was born via Ventouse after a long labour. I’ve always been convinced his vagus nerve was wrenched during the delivery which has caused all sorts of problems further down the line- -slow gut motility (ie days and days on end) jerking his neck back as if to click it in to place, scrunching his toes up when walking, (takes shoes off as soon as he is inside), limited diet, dislike of meat protein and crunchy textures, no dream re-call and of course feelings of flat mood -more so now he’s 14. I’m going to get him to have a urine test so it will be interesting to see the results
Sarah
Please keep us posted on what the outcome is – do keep in mind that false negatives are pretty common.
An excellent resource is Julie Matthews’ work with diet and ASD https://www.everywomanover29.com/blog/nutritional-and-dietary-intervention-for-autism-spectrum-disorder-a-new-study/
Also working with a functional neurologist may be worth considering. More on that here https://www.everywomanover29.com/blog/fix-the-brain-to-fix-the-gut-with-dr-datis-kharrazian-on-the-anxiety-summit-5/ and https://www.everywomanover29.com/blog/the-role-of-functional-neurology-the-cerebellum-and-brain-balance-exercises-for-anxiety-depression-social-communication-adhd-and-obsessions/.
Hi Trudy,
I have your book and follow your blog. My 16 year old daughter tested positive for pyroluria a few years ago and I’ve been giving her the pyroluria protocol. Unfortunately she had to go on zoloft a year ago (she was hospitalized for suicidal thoughts). I say unfortunately because I had wanted to address her mood problems naturally, with food and supplements, and now I have this vexing problem of considering medication interactions, which I’m not sure anyone (including doctors) really knows much about. Of late I’ve found a few mentions here and there that you can’t take evening primrose oil with SSRIs (one site said it was specifically Lexapro), but there’s really very little information. I imagine you must have some experience with this issue. Is there any help or information you can give me? And also if there’s any other contra-indications of taking any other supplement with zoloft besides 5HTP, tryptophan, and St. John’s Wort? Besides the pyroluria protocol, I also give her 4 grams a day of inositol for her OCD. I recognize your answer is not “medical advice;” my daughter’s psychiatrist is the only one responsible for that (unfortunately I doubt she knows anything about the topic). But I thought you might have knowledge of the issue, or some first-hand experience with the issue given the number of clients you’ve had.
Thanks a million!
Sincerely, Amanda