Pyroluria

Pyroluria, also known as Pyrrole disorder is a little known genetic condition that involves an abnormality in haemoglobin synthesis (the protein that holds iron in your red blood cells). People with Pyroluria produce excess amounts of a byproduct of haemoglobin synthesis which is known as pyrrole (or hydroxyhemopyrrolin-2-one (OHHPL)). Normally this is an unimportant waste product but when the levels of pyrroles are elevated then they bind excessively to zinc and vitamin B6 which renders them unable reach their targets in the body and unavailable to be used.  The omega-6 fatty acid GLA is also depleted.

Pyroluria is diagnosed by testing for excessive amounts of pyrroles in the urine. Although this disorder is relatively unknown and likely under diagnosed, it is estimated to affect 10 – 11% of the general populations with significantly higher rates in those with mental health diagnoses. Some studies have shown rates to be as high as 70% for individuals with diagnoses of schizophrenia and depression with significantly higher rates also seen in individuals with diagnoses of bipolar disorder, autism and ADHD.

Pyroluria is associated with a large number of mental health disorders including depression, anxiety disorders, tourette’s, autism, bipolar disorder, ADHD and schizophrenia as well as other issues such as eczema, immune problems, chronic acne, psoriasis and substance abuse. People with pyroluria also tend to be fairly intolerant to stress and research has shown that stress increased the levels of pyrroles in the blood which worsens symptoms.

Poor diet and digestive health has also been shown to increase pyrrole levels and leaky gut syndrome is common among people with this disorder.

The signs and symptoms that may be associated with pyroluria are too numerous to mention in this post but a detailed explanation and list of symptoms can be found here. There is also a good chapter on this disorder in the book Primal Body, Primal Mind by Nora Gedgaudas. Certainly anyone experiencing mood swings, anger outbursts, anxiety or panic, depression, poor dream recall, frequent colds or infections, reading difficulties (such as dyslexia), fatigue, white spots on fingernails, unusual smelling breath, eczema, sensitivity to light and difficulty coping with stress should get themselves tested for pyroluria.

Treatment for pyroluria is lifelong supplementation with zinc, vitamin B6 and sometimes GLA (an omega-6 fatty acid). In this populations diets high in omega-3 fatty acids are less well tolerated. Useful treatment also includes improving gut health and diet and reducing stress levels or learning better stress management strategies. Depending on the degree of pyroluria, improvements may be seen fairly quickly or may be more gradual over time in more severe cases.

As pyroluria is often undetected or misdiagnosed by the medical profession and is clearly a possible factor in so many mental health disorders, it would be a good idea to get tested before embarking on any change in diet. If you have been undergoing treatment for any of the issues mentioned above and have not seen improvements then this simple urine test could possibly provide some answers. If your regular GP does not acknowledge this as a potential issue then look for an integrative or holistic GP to do the testing and ongoing treatment for you.

Obviously all mental health problems will not be a result of this disorder but ruling it out can be just as informative when looking into ways to improve your wellbeing.

If you have a diagnosis of pyroluria and would like to share your story I would love to read about it in the comments below.

 

 

100 thoughts on “Pyroluria

  1. My husband was diagnosed with it last year, and it really does explain a lot. I recently had my kids checked and was pleasantly surprised that they got the all clear!

  2. Hi Monique, thanks for writing this post. We have a daughter with Pyroluria and it has been challenging getting a clear understanding of what it actually is! I am hearing of more and more diagnosis so hopefully there will be more research and more information available soon. Kristin x

    • I hope so too Kristin!
      I have heard of a few GPs refusing to test for it – way more education is needed.
      I hope your daughter is doing well with the right treatment. x

  3. Myself, my mum, my 6 brothers and sisters and at least of my nieces and nephews have all been diagnosed – all at different levels. Our family history includes extensive mental illness including depression, schizophrenia, an do the illnesses including eczema, psoriasis, ADD and autism. Not to mention the gut problems that run rampant as well. The supplementation helps but it is the clean eating and diet that has helped me the most. It is nice to see a simple article educating others about this disorder.

  4. I’ve only just learned about this recently but am thinking both myself and my partner should be tested. It would explain a LOT!! Is there any way to DIY urine test or does it need to be ordered through a doctor of some description?

    • I think it depends where you are in the world. There are DIY tests in that link in the blog post but I can’t remember where they are. It shouldn’t be a difficult test to do via a doctor though. If your GP refuses then find an integrative or holistic one.

    • It is a very specific test that only a few collection labs can take – must be protected from daylight, snap frozen and kept frozen. Just did mine this week!

  5. My Son aged 6 was diagnosed with Pyrrole Disorder by our Naturopath. He has also had challenges with reading and writing at school. This has been helped since he started the reading recovery program as well as being assessed by a Behavioural Optometrist that found he had tracking challenges due to muscles in his eyes being weak, he wears glasses for anything close up (interestingly I took him to our regular Optometrist first and he gave my son the all clear!). He also takes zinc & b6 vitamins every day, I also try to include foods that contain these vitamins, I’m also looking into making our own water kefir to help with good gut health, I find probiotic supplements can be very expensive for good quality ones. As Pyrrole it is hereditary I am going to get myself tested. My daughter aged 8 tested negative.

  6. I tested positive to Pyrole disorder. However my blood tests showed really high levels of B6 and high Iron even though neither of these are in my Pyrole compounds. Zinc did drop but is lifting since starting tablets. I’m confused why my B6 is high when it should be low? My dr has no idea why?

      • Blood level of B6 is a very inaccurate test- very sensitive to light & temperature- drs trained in biomedical Rx don’t bother testing it for these reasons- also remember that the blood is a conduit between cells- not the only indicator of intracellular metabolism & the urine pyrrole test is a better diagnostic tool with plasma zinc the best monitor (and symptoms) of treatment success

    • People with pyrolle disorder ( like myself ) have difficulty with absorption of B6 , the problem often shows as elevated B6 in the blood as it is not activated and can’t get into the cells , or removed efficiently and remains in the blood, the answer is to make sure there are no supplements with B6 , but rather activated B6 instead ( P-5-P ) this will help with the utilisation and removal

      • Hi Patricia,
        I love your comments! Thank you. I am always happy for extra information and for links to naturopaths.

        Cheers,
        Monique

      • LOVE the information I am finding here. I was tested years ago and given multiple supplements to take but after years of not having access to the holistic treatments and testing as my local M.D. doesn’t use this in her practice. Will try to explore avenues with her for testing. I know when I was treated with the supplement s I did a lot better. Thanks for the responses now I may know why the supplements worked so well in the seventies.

        • Thanks Mona!
          Try going to an integrative or holistic GP or a naturopath for testing and proper supplementation. It is so important.
          Cheers,
          Monique

      • Actually it’s because the enzyme that is responsible for getting the B6 (in P5P form) into the cells that is not functioning correctly since it’s zinc dependent. Hence when you start supplementing with zinc your B6 level should go back into the normal range.

        To get Pyridoxal-5-Phosphate (= P5P = active form of B6) into your cells the phosphate ring needs to be removed and once it’s inside the cell the phosphate ring is reattached.
        The enzyme alkaline phosphatase is what removes the phosphate ring from P5P. Alkaline phosphatase is dependent on zinc to do it’s job. So low zinc = high B6 in blood = same as having low B6 since it can’t get into your cells.

        Kind regards,
        Bart

        • Wow thanks Bart, you just solved a longstanding mystery for me – I have so much excess B6 that my skin is yellowish … but at the same time, I’m so DEFICIENT in B6 that I have been experiencing neurological defects and fasciculations similar to ALS. (All ALS patients should be tested for pyroluria, btw.) I guess this is the same thing as what happens with copper toxicity/deficieny — you have too much of the form that can’t be used. And copper toxicity, of course, is also very common with pyroluria.

          Also thank you sweet Monique for a terrific post. Some believe the pyroluria rates in the population are closer to 40%, and I have to say, I agree. (Though I’m a writer so maybe my “sample pool” is slightly skewed as high copper — and the attendant high creativity / madness — is so prevalent among artists.)

          I am hoping someone will establish a non-profit someday to help raise awareness and perhaps help sufferers. If one were in place I’d like to donate a portion of the proceeds of my next book to it. If such a thing ever happens, please contact me alethea@aletheablack.com.
          Warmest wishes x

          • PS Dogs can suffer from Pyroluria, too. If you have a pooch with social anxiety — especially common in the dachshund breed but occurs in other breeds as well — you might consider supplementing with zinc + B6. I’m using Zinpro (zinc supplement made specifically for dogs) and 1/8 capsule (powdered) B6. My dachsie is recovering more swiftly than I am!

          • I hope someone starts that up too Alethea.
            Good luck with your treatment and your dog’s too.
            x

    • Hi Dan! My son and I have pyroluria! Our b6 levels fluctuate really high! We don’t know why either but when we cease all tablets and food with b6 for 2-3 months the b6 level drops! Meaning we eat junk to bring the levels down! I eat junk 1 week and healthy the next! It seems to be levelling out our levels. If you are getting cramps it could well be the b6! If b6 is too high or low it causes excruciating cramps! Try 2 capsules of Apple cider vinegar mixed in a glass of water twice a day. Cramps subside! 🙂

  7. I was diagnosed earlier this year. After 3 bouts of depression in my life I is such a relief to know I will never suffer again! I wish more people knew that depression is caused by nutrient deficiencies and gut issues.

    (Highly recommend everyone reads Nutrient Power by Dr William Walsh.)

    I have also cut gluten out of my diet and have seen my energy bounce back enormously. I follow a paleo diet, but still have dairy.

    I’m now on a mission to help others cure themselves of depression… I can’t sit by and watch others suffer anymore.

  8. i was diagnosed with Pyrolles four months ago now and it explained a lot for me in relation to my mental health. I’ve found lifestyle to be the most important factor and creating space to relax and reduce stress. Yoga has made an incredible impact for me. I also wrote about my diagnosis on my blog after I found out and was really thrilled that the post enabled many others to seek testing and receive a diagnosis. Even though it’s a lifelong condition, management can make a world of difference. Thanks for sharing this article and for spreading the word about Pyrolles 🙂

  9. I was diagnosed with Pryroll disorder about 2 years ago now.
    I am taking B6 200mg x 2 each day Biotin 1000mcg x 2 B2 50mg x 2 B1 10mg x 2 vitamin E , D, Iodine and Pryidoxal-5Phopshate.
    I can not even begin to tell you the difference it has made to me! Plus I take Magnesium every day and good quality fish oil tablets as I have fibromyalgia, psoriasis (an uncomon type with psoriatic arthritis) & fatty liver, a lot of which you mentioned in your article, I find that I still do not handle stress that well, however my short fuse and temper with the stress has reduced considerably, my depression still comes from time to time, but is manageable now.
    I would be lost without the help of my doctor, I had never heard of it before her.

    • Hi Donna, do you take zinc as well? Zinc is very important, just as important as the vit B6.
      If you don’t have enough zinc, copper will be abundant in your body and causes a copper toxicity, which creates the same symptoms you want to get rid of. Copper toxicity and Pyroluria goes hand in hand.

  10. After battling depression on and off for over 15 years, and alopecia for the last few, I was finally diagnosed with pyroluria early this year. Makes so much sense. Now I understand stress triggers, and how important it is for me to reduce to stress and look after myself better.

  11. My Son was diagnosed with this at 6. He is now 8 and has also been diagnosed with dyslexia and Irlen syndrome. He was so unwell for around 2 years with such bad fatigue, headaches and was always at the doctors with ear and throat infections. Felt like I was beating my head against a wall with mainstream medical system. All they wanted to do was put him on antibiotics which in turn destroyed his gut. Eventually seen a naturopath when he was 6 and was diagnosed with pyrroluia and an array of gut issues and system deficiencies. He has only been sick twice since!!!

  12. Thanks for your post! If someone suspected pyroluria and started supplements such as Zinc, B6, then later was tested, would this affect the results of the test? Thanks!

      • For the initial, diagnostic Urinary Pyrroles Test, you need to stop any supplements containing Zinc and/or B6 for up to a week before the urine sample collection. Otherwise the test will return a false low result.

        Once you’ve been treating Pyrrole Disorder for a while, you may like to redo the UP test to check that you’re taking the right doses of Zinc and B6. You should continue taking supplements without stopping. If you’re taking enough Zinc and B6, this test should return a low result.

  13. I was diagnosed three weeks ago and am feeling so different I find it almost too good to be true. My husband is waiting for my next bout of anxiety to hit me but even surrounded by triggers I’m coping beautifully. Time will tell.

    My hope is for everyone who suffers from anything chronic to continue their search for healing and happiness because it’s easy to feel hopeless but there is always always hope.

    I’ve read some disbelieving comments and articles around Pyroluria which made me question the validity of the disorder but every person who has been diagnosed and commented anywhere seems thrilled by what they often describe as a transformation. Now that I’m feeling more resilient I don’t care what mainstream doctors say anyway ha ha. Slowly old patterns of fear are falling away.

    Thanks for sharing this information.

    • That is brilliant Trina!
      Good on you for taking your health into your own hands.
      Doctors know what they are taught at med school but you are the expert on what works for you!
      Cheers,
      Monique

  14. My daughter started having massive anxiety & panic attacks a few months ago. It was awful. She is 10 & puberty has just kicked in. We went to the gp for some tests & guess what? No problem…maybe we should look at antidepressants! ! I had 3 different people recommended antidepressants. My beautiful fun loving daughter cried for months non stop until I found a gut specialist who asked questions for about 5 mins & sent us off for a pyrrole test. 2 weeks for the test results felt like an eternity & I went to bed every night shattered emotionally. Mums are supposed to make everything better right?
    Her pyrrole were really high at 123! Omg. I had an answer. I pulled her out of school for the last 3 weeks of the year to try to ease her anxiety. Supplements have not been going well though. They make her really sick. I’ve had to cut right back so recovery is taking way too long. She’s better…but still a long way to go. I am so grateful to have an explaination & solution. And for having all of this information at my finger tips. I’m just waiting for the day when I don’t have to hold her until she is asleep again. & she can have friends over for a play without freaking out. It’s been stressful…& now I need to have my pyrrole tested.
    Thankyou for a great article

    • Hi Sarah,
      I am so sorry that your daughter is having such a hard time at the moment. But it is great that she has been diagnosed properly and not on antidepressants.
      If you would like some help with some information and a few techniques so that both of you understand anxiety and panic better and what is going on in her body then I do personal consultations. Have a look under work with me for details.

      Also have a read of this: http://www.thenourishedpsychologist.com/overcoming-anxiety-and-panic/

      Best wishes for both of you.

      Cheers,
      Monique

  15. I was diagnosed with this problem by vega testing through a naturopath. no urine sample done. It’s been 10 months since I started taking supplements. I no longer seem to have a fear of heights or cars, boats or anything which I always have had since childhood. I had started having panic attacks too which scared me as I don’t think of myself as a very emotional person still stress a little but usually when I don’t take enough activated b6. what im wondering is should I still have the urine test as im unsure whether vega testing is completely accurate. one of my sons was diagnosed too. his problem was very bad breath and body odour with chronic acne. apparently he couldn’t process onions and garlic and those in that family also eggs because of a lack in b6 so took him off for 6 months added supplements. body odour under control but not acne

    • That is great that you have seen results after starting the supplements.
      If things are working for you I can’t see why the urine test would be necessary but I am sure you could have it doe if you want to.

      Cheers,
      Monique

  16. I have suffered from electro sensitivity for many, many years, and since wireless technology has been introduced it had caused me further problems affecting my immune system. Many people who are being diagnosed with a mental disorder, is in fact suffering from a electro magnetic sensitivity that effects the brain blood barrier. I decided to have a Pyrrole test and I found that my HPL is 15.2 and HPL Normalised is 23.5. I don’t suffer from those normal mental disorders. I am 78 years of age, and the long-term and prolonged radiation, 24/7 over the past decade has placed me in this position.

  17. I was diagnosed a couple of years ago after suffering from anxiety and my husband and two sons were also tested positive. I was given a script to be processed at a compounding pharmacy for a variety of supplements that cost $550! With four in the family it is becoming very expensive. I just wanted to know if others are paying this kind of money or if just taking B6 and zinc is working on their own? I also didn’t realise that it was a life long treatment program. I have had 2 scripts which have lasted me 3 months but haven’t been advised I should be taking these supplements everyday for the rest of my life.
    Could explain why my anxiety and panic attacks keep returning

    • Wow Linda, that is a lot of money.
      Hopefully others will be able to tell you of their experiences.
      It is definitely supplementation that needs to be taken for life. Was the script from a GP? Maybe a visit to a naturopath would be useful to see if there is a less expensive option.

      Cheers,
      Monique

      • Linda, yes, it is expensive, but not as expensive as buying the individual supplements. You may find that with assistance from a knowledgeable Naturopath or Nutritionist that you can reduce the supplementation over time IF you adjust your diet accordingly, however you would need to do that under close guidance of the aforementioned specialists. Know your foods, and use your foods as medicine!

  18. Hey, my name is Anjan. I’m 26 yrs old and I live Mumbai India. I’m honored with an extraordinary life and marvelous companions, however it has not generally been similar to this.

    I see myself as simply a normal fellow who began having fits of anxiety and nervousness in his initial twenties, albeit I didn’t realize that is the thing that they were at the time.

    It’s been a long hard street however in the end in the wake of misery from this condition for more than 6 yrs, I am satisfied to say I am completely frenzy free. I no more have nervousness hanging over me throughout the day, however when distressing occasions happen regardless I get restless emotions like others does. That is simply piece of human instinct.

    • Hi Anjan, I live in Pune, India and I think someone I know has pyroluria too. Could you guide me about how and where you went about your treatment? I would really appreciate the help.

  19. Hi. My 4 1/2 year old was diagnosed recently and we just started on medication in the form of a cream. I show a lot of the symptoms too so will end up getting tested. Are there any articles/research that you can suggest I read with strong scientific evidence. Coming from a medical background I’m a little sitting on the fence, although it all makes sense. Thanks

    • Have a look on pubmed or check the links to some of the articles on google. I wrote this quite a long time ago so I don’t have on hand the research that I used (sorry!) but I read quite widely on the subject. I know not everyone believes in its existence. It really does make sense though and people can benefit quite drastically from treatment.

  20. Great article! Thank you. I was diagnosed about 6mths ago and am currently working through treatment with my naturopath. I’ve had a super clean diet and active lifestyle for the last 5 yes and lost 50kg. I’m in my late 20’s and have several other issues with my hormones we’re working through – I hope someday soon there is more research and information available to indicate whether there is any connections. I love being fit and healthy but sometimes I can’t help but wonder whether such a drastic lifestyle change has taken a real toll on my body. I find it sad that most general GP’s do not test for this disorder.. With the amount of mental health issues so prevelant these days, I think there would be a lot more diagnosis’ of this disorder.

    • Hi Sarah,
      I am glad you are getting your health back on track.
      Hopefully this will be a standard test soon.

      Cheers,
      Monique

  21. Hi Monique,
    What is the actual pathology test called? My GP would be happy to order anything I ask him to.
    Many thanks,
    Jo

  22. Hi – I was diagnosed 3 years ago (at the same time as Coeliac’s Disease) through a urine test with my integrative GP. It took some time to get the combination of my Primer right. I have seen improvements in my debilitating perfectionism and depression over that time but the anxiety is still a problem. It only seems to rear its head in the second half of my cycle when my progesterone doesn’t raise and I need to take bioidentical progesterone. Without the progesterone I am a trembling nervous wreck for two weeks every months. I find it really sad that a lot of mainstream docs think Pyrroluria is a fake condition and all a bunch of rubbish. A lot of them just don’t believe it even exists. I can’t tell you the dramas I had when I was pregnant and fertility docs wanted me to stop my pyrroluria treatment!! (I lost that baby and one more anyway) … FYI – my integrative GP prescribes my pyrroluria primer by a written prescription and the Kingsway Compounding Pharmacy at Brookvale NSW makes it up and sends it to me in the post. It is $140 for two months supply and about $10 postage. I hope that info helps someone xxx

    • Hi Karise,
      Thanks for that information. I am really sorry for the loss of your babies.
      I am glad that you have found what works for you. Hopefully more doctors will begin to recognise this condition soon.
      Cheers,
      Monique

    • Hi there Karise. Thank you for your post. I have been on pyroluria supplements for 3 months now. I feel so much better (but not totally right – but my anxiety is less and I feel more confident in general). Am still confused about what I should eat. My diet has always been carb based, I eat dairy & wheat, but I know I need to make changes. I do have gut issues (also eczema, rosacea). I have used bioidentical progesterone for years. I am sure I would be extremely sick without it. It solved my cramp issues but I still have mood changes int he second part of the month. I had been wondering if the pyroluria supplements would ‘fix’ my hormonal imbalance (too much oestrogen at ovulation) but it sounds, from your post, as if I should just keep using it. Thanks again, to Monique too!

      • Hi Lin
        The GAPS (Gut and Psychology Syndrome, and Gut and Physiology also applies) protocol devised by Dr. Natasha Campbell-McBride is a way of eating highly nutritive foods to heal the gut. As Pyrolle Disorder involves impaired digestion, both causing it and being exacerbated by it, this diet is well worth investigating. She has a book, and there is plenty of info online if you’re interested. I’m hoping that with improved uptake of nutrition from food, I may need the B6 and Zinc supplements less and less over time 🙂 I hope this info is useful.

        • I have just posted a GAPS intro legal treat – I am doing it at the moment.
          The book is well worth a read.

      • Hi
        A supplement with GLA such as Borage Oil will be beneficial as it supports progesterone and GLA is known to be low in pyroluria.

  23. Hi Monique
    Thank you for posting this article. Id like to share that biobalance trains doctors in the specialised area of nutrition for brain biochemistry including this pyrrole disorder. The test can only be reliably done at two centres in australia, it needs to be transported on dry ice so please see a trainined integrated medicine doctor. (list available on their website, or see ACNEM college of nutrition environmental medicine) I dont like seeing patients spend money on incorrect tests or excessive supplements. Also to answer a previous question B6 is a very unreliable blood test we dont do it. 🙂 Rachel
    Dr Rachel Wyndham recently posted…5 Things you may not know about gut healthMy Profile

  24. I was just tested by lab in il
    Waiting for consult w dr mensah
    I’ve struggled w depression my whole life
    I’ve tried so many things to well
    I m praying w right supps I’ll feel better
    I’m in ny state

    Linda

  25. Hi Monique,

    Thanks so much for your article. I have recently been diagnosed with pyroluria – and now so much makes sense! I have had nearly all of the symptoms from over crowding in my front teeth, ringing in my ears, motion sickness, sensitivity to light, inability to handle stress well etc… I have only just started taking the supplements so not sure yet whether I am feeling better or a placebo effect… I am also having bone broth every day and fermented foods to try and heal more poor stressed tummy. I was so fortunate to ‘trip across’ a gp who has been researching this for the last 2 years and am so hopeful that this is what all these symptoms are all about – it has been exhausting trying to understand why I always felt emotionally and physically out of whack… Thanks again 🙂

  26. Hi Monique,
    Hope its not too late to reply to this blog post but resonated with this post whilst doing some research regarding Pyrolle disorder and pregnancy.
    My nearly 4 year old daughter (58.6) and myself (252.8) were both diagnosed with Pyrolles last year. Since then and with Natropathic consultion have come off my Antidepressant and feeling the best (energetically, mentally and digestively) in at least 10yrs. I am thinking of having a second child (which previously with my mental state was out of the picture) and am looking for any advise in regards to managing my physical and particularly mental health throughout the pregnancy and post pardom. I really struggled with all day sickness for most off my pregnancy last time and in turn was very depressed through out creating no connection with my child whilst pregnant. Basically “I hated being pregnant” and really don’t want to do it again but know in the long run having a second child is what I want now I am in a good place. Anyway any advise you may have leading up to and whilst i am pregnant in regards to maintaining my mental health would be very much appreciated. Lauren

    • Hi Lauren,
      I am glad you are feeling so much better. Sorry the pregnancy was so hard.
      Pregnancy is not my area of expertise (other than my own personal experiences) but I would suggest that you might benefit from linking in with a psychologist who specialises in pre and post natal mental health before you fall pregnant again. I wonder if the treatment for pyrolles and your improved gut health will help you feel better during another pregnancy and also that your expectations of a pregnancy will be different so you may be able to cope with it in a different way. Learning strategies to help you when your mood is low and making sure you have good supports will be essential. Being pregnant when you have a child to look after already is different from the first time because you have other things to focus on but it us also more tiring.

      I would also speak to your naturopath about it and how they could support you with any sickness and energy levels during pregnancy.

      Best wishes and I really hope that a second pregnancy is easier for you.

      Cheers,
      Monique

    • Do you mean could it make people more vulnerable to developing serotonin syndrome?
      I don’t have the information to comment on that I’m sorry but it would be interesting to find out.

  27. I felt terrible in my body from adolescence on (and my childhood was one virus after another, literally), did the usual pilgrimage from doctor to doctor to alternative practitioner with no or wrong answers, lots of dead ends. In the meanwhile I perfected a whole foods, organic diet, no added sugars (terribly hypoglycemic), got toxics out of my household, ie created as wholesome a lifestyle as I could. Nevertheless I became terribly ill with the consequences of running on adrenal hormones and accumulating copper in my early fifties. Having my amalgam fillings removed and (slowly, gently), detoxing enabled me to make it into my early sixties, when finally I was diagnosed, after I spotted some info on Pyroluria imbedded in an article on adrenal fatigue in the Weston Price Foundation Journal. I contacted the author who has Pyroluria herself and is a Chinese medicine practitioner. When she asked if anyone in the family has Porphyria (my sister), I knew finally I had an answer. B6 and zinc were nothing short of a miracle. I’m still improving. I take high doses of B6 and zinc daily, a host of other supplements (prescribed), and the full complement of other B vitamins as subsequent testing revealed I have both MTHFR anomalies. What I wish I could find is a practitioner who is really informed about both these conditions. I have a a functional MD who cares, but who throws a lot of supplements, herbs and treatments regimes at me, quite a few of which I react negatively to (like most with Pyroluria, I’m hyper reactive to all sorts of things, and can’t tolerate pharmaceuticals at all), which frustrates both of us. Any resources anyone? I live in Northern California near Santa Rosa, within striking distance of Petaluma, even SF, and travel frequently to LA. Many thanks.

    • I’m so glad you found some answers.
      I am in Australia so have no recommendations for you but hopefully someone else will.

  28. Monique Im on the sunshine coast Queensland do you know of any intergrated Dr who can deal with pyroluria my level was 26 I have started on some supplements but need a follow thru with a dr as the dr I was attending and did the tests has left and I dont know of his follow up details(very annying) I would appreciate your help if possible.

    • Hi Margaret,
      Sorry for the late reply. I am away travelling at the moment.
      I am not sure of anyone on the sunshine coast but you could try asking on my facebook page?
      Or google integrative gps in your area.

      Best of luck,
      Monique

    • Dr Gary Deed. Mediwell Clinic Cooparoo Brisbane Ph. 34217488 is where my son and I go. I also live on the Sunshine Coast

  29. Please help. Last year we took in a young 15 year old girl who was diagnosed with Pyrolle. We managed to get her on some supplements and she returned to her family after 6 month of eating well, minimal stress and stability. She has recently returned to us as family life is too stressful but she is in the early stages of pregnancy. While I know a bit about Pyrolle I don’t know how pregnancy goes with it and really need some guideance on what she should be doing to support her health. Any help would be greatly appreciated

  30. I have recently been diagnosed with pyroluria, though sensed for some time that I have it. The test result was 64 (and that was when I was inadvertently still on 10mg zinc in a Vit C tab, so actual pyrrole levels could be higher). My issue is how to address very high blood levels of B6 which showed up some months back – which suggests to me an inability to metabolise this- though I’ve never had the tingling/neuropathy issues that are supposed to accompany high B6 levels in the blood. My doc (who did do some Pfeiffer training some years back) says to continue taking it anyway and we’ll look at what appropriate levels for me are over time with 3 monthly KPU re-testing.
    Can anyone make suggestions about how to assist B6 absorption?

    • Lyn, have you tried taking P5P (pyridoxal-5-phosphate) instead of B6? It’s an active form of B6 so it’s easier for your body to absorb it. I buy it from iherb online.

  31. Our son had a psychotic episode four years ago, two weeks before his 17th birthday. He was taken to the psychiatric ward at the local hospital where he was given antidepressants and tranquilisers. Eventually, he was diagnosed with a form of schizophrenia. He refuses to eat and drink or even speak. This has been going on for four years now. He’s been on anti-psychotic drugs (Liponex/Clozapin) for the whole period. We are wondering it is too late for him to do the pyroluria test. He receives his food in liquid form via tubes and a pump. Will his nutrition affect the results of the test?

    • I am so sorry to hear about your son.
      I am not an expert in pyroluria but I don’t think the nutrition would affect the results. As far as I know there are no special things that need to be done before a test but please check this with an integrative gp.
      Best wishes.
      Monique

  32. My son Shreyas is not attending college (B. Tech-Computer Science) since 2.5 years. He is just confined to his room. Addict of computer game world of war craft. Disturbed sleeping cycle. Sleeps for whole day and whole night awake on game. Always under stress. Does not like to go out in public. While reading your article on pyroluria, most of the symptoms are common. Wants to stay alone in his world. Always worrying what will happen to his future. Please advise medication.

    • I can’t advise you about medication. I would advise that you find an integrative GP or naturopath who can do the testing and prescribe the appropriate supplements for your son.

  33. I learned of pyroluria from certified nutritionist Trudy Scott out of Australia, and then listened to Dr. Walsh’s book, “Nutrient Power” and to Dr. Mensah’s YouTube videos on the topic.
    Looking at pyrroles discretely is useful, but there’s likely a lot more going on with someone’s health because of that B6 and zinc deficiency.
    It would help people to take additional tests (organic acid test, RBC minerals, non-metal toxins, genetic SNPs) to identify deficiencies in their methylation/energy and stress synthesis, gut dysbiosis, among other biomarkers.
    These tests will put the B6, zinc, GLA deficiencies in context, and “the dots” will connect.
    People can order their own tests (MyMedLab, for example) but will likely need and want some help from a trained functional medicine or similar integrative practitioner to analyze the results.

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