Pyroluria – the Stress Disorder

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About Maria from True Foods Nutrition

Maria is a fully qualified Clinical Nutritionist who runs a busy clinic in Sydney. Maria uses a functional medicine approach to find the real causes of illness. She is a firm believer in the principle of ‘food as medicine’ and focuses on diet, nutrients and lifestyle when addressing the conditions of her patients. Contact Maria for a free 15 min phone ‘strategy session’ today: 0466 802 058.

Comments (85)

  1. Great overview. I am in the U.S. and did the urine testing via mail. I have severe Pyroluria. I am in the process of having my boys tested one has autism and the other severe Dyslexia. I was just wondering if you knew how Dyslexia is related to Pyroluria? I can’t find much information on it online. I mean, supplements can’t cure Dyslexia, right?

    • Hi Sue,
      One way that dyslexia can be related to pyroluria is via mercury/other heavy metal exposures. As you know zinc is highly deficient in pyroluria, so when there is very little zinc, mercury and cadmium will ‘slot into’ it’s place as they have similar chemical properties and are below zinc in the periodic table. Many children with autism or dyslexia have heavy metal toxicity. This is just one possibility. In Australia we have a great organisation called Mindd (www.mindd.org) -they are dedicated to providing resources for families with kids on the spectrum and other developmental, immune, gastrointestinal and metabolic issues. They have a lot of info on their site that might be helpful, and most importantly lots of recovery stories. I personally believe it IS possible to improve dyslexia significantly with the right therapies. In the US, the institute of Functional Medicine is a great starting point as their practitioners are well trained in using the right diagnostic tools to identify key issues involved, please check their website for a practitioner near you. Hope that helps, Kind regards, Maria

      • My blood zinc.measurement was.very good but I was told through a hair analysis that my copper was high and.my serum.copper was high end. The fact that my zinc.is upper limit would that say I don’t have pyroliria?

        • Thanks for your comment. It’s not possible to diagnose pyroluria from copper and zinc levels. All tests including a urine pyrolle test need to be taken into account. Cheers

  2. I live in Macky Queensland and wonder if you can recommend anyone I could go to to be tested for Pyroluria.

  3. Hi, my daughter lives in Port Macquarie can you suggest someone for her to go to so she can follow this up as she falls into a majority of symptoms and I would like her to be tested for Pyroluria.

  4. I really like reading through an article that will make men and women think.
    Also, many thanks for allowing for me to comment!

  5. I am recently diagnosed with Pyrolle Disorder and rather than swallowing down more tablets I was hoping there was a list of foods or dietary recommendations I could follow in regards to it.

    • Hi Carolyn,
      Whilst eating foods rich in zinc (such as red meats) and absorbing them well is helpful, unfortunately in people with pyrolles this is not going to be enough. Your practitioner should explain why this is so. Let me know if I can be of help,
      Kind regards

      • Supplements work wonders- I dislike taking them but feel 90 percent improved after 5 months and am willing to continue with the supplements for the rest of my life.how my life would have been different if diagnosed years ago – my daughter has been tested but test was negative ……I can think of relatives who may have pyroluria too ! All the best to all and would encourage as many people with symptoms to be tested.

  6. Hi Maria,

    Can you recommend any Sydney doctors who can test for pyrrole, that are in the western suburbs? (Or not the CBD/Bondi)

    Thanks!

  7. I am working with a great GP to help my Pyroluria and currently taking P5P, Biotin, Primer50 – I just wonder if there is any eating plans available? Low copper diet? And is it okay to consume foods that do have copper in them? As there seem to be many good high Zinc foods which also contain high amounts of Copper?

    Thanks 🙂

    • Hi Kerry,
      Yes diet is important and I find that staying away from high copper foods benefits people, however supplements make the biggest difference in symptom relief. A comprehensive pyrolle treatment will involve gut repair and addressing methylation which is often impaired. Feel free to email me if you would like a consult and further info,
      cheers

  8. Hi, I’m waiting to be tested for pyrrole. I’ve been told it will take about a month for our first visit to the gp I’ve contacted. I have a 2yo and I’m concerned he might have it too. Would you know of any other gp who I could contact about getting both my son and I tested around my area any sooner? I live in Sydney, St George/Canterbury area. Also, I’ve been told that we’ll have to have blood tests, urine tests and other tests done. My little one is scared of needles. I’m wondering if a urine test would be enough to test him?
    Many thanks.

    • Hi, thanks for your question. You don’t need to see a doctor to be tested and treated for pyrolles, I see clients with this nutritional condition on a daily basis. Blood tests are not necessary for children, I usually use urine and hair tests. Feel free to contact me to discuss, 0466 802 058,
      Kind regards,
      Maria

  9. Hi, I’m in Bundoora in Melbourne and was wondering if you can recommend somewhere to go for pyroluria testing? Thanks

  10. Hello
    Can you please tell me who I can see in the Brisbane region
    Who knows about methylation
    Snps I have a very high SAMe & Sah.
    Compound heterozygous MTHFR.
    Pyrrole
    Thank you so much

    • hi Vanessa,
      Sorry not aware of anyone in Brisbane, but just so you know I do skype consultations,
      Kind regards
      Maria

    • Hi, I know it’s been about six months since this question was asked, but if Vanessa or anyone else is still looking for someone located in Brisbane, Dr Phillip Stowell at Mediwell in Coorparoo is knowledgeable and helpful with pyrrole issues.
      Wishing you good health.

  11. Hi there
    I feel like I’ve had this for a while now & didn’t know what or why…constantly feeling like I’m loosing my head, i had a lady at a health food store tell me about it, have read a lot of sites so now I want to get tested & get myself feeling good again, however I’m on the Sunshine Coast, can you recommend anyone near me.

    • Sorry I don’t know any practitioners in QLD, if you don’t find anyone I do skype across the country and internationally.

      • Hi Maria,

        I would love to get tested; do you know any practitioners on the Northern Beaches in Sydney? Thank you.

    • I’m on the sunshine coast. My GP told me about Pyrrole Disorder & that he offers the testing of it. Contact Dr Rafiq, Farrell Street Medical Centre, 0754468822.

  12. Hi Maria
    My 9 yr son struggles with anxiety, sensitivity and mood swings. He’s very OCD when it come to exact times, stories telling or someone else telling the story. We were seeing a child psychologist for a couple of months before she move state, since then haven’t been to another. There is not one day that goes by that we don’t have tears, melt downs or arguments. I approached our GP requesting a test for Pyrolle Disorder however he hadn’t heard of it so there for didn’t want to do the testing. I have Bi-Polar and depression. I suffered a mental break down at the beginning of this year due to many factors one including my daughter has a rare tumor. I really need to get help for my son as I think this will benefit everyone in the family. We live in Woonona (Near Wollongong). Could you please recommend some for us to see to be tested. Or Could recommend somewhere online I could buy the test.
    Many thanks
    Melissa

  13. Hi, there doesn’t seem to have been any further posts on this for a long while..I’m in Perth, do you reccommend anyone here for the testing? I went to a naturopath here and she diagnosed me me high copper after using a quirky vega machine!? Im a bit sceptical.

    • Hi Michelle,
      Yes you would need proper pyrolle testing. I do skype consults nationally if you would like more info, feel free to call me on: 0466 802 058. Cheers

  14. My daughter recently got diagnosed with pyrolles. They added drops to her urine sample and it turned a dark pink colour. I read that light affects the results and the sample should be wrapped in foil. Hers wasn’t. Do you think this test was ok?

    • It depends on where you are based Teena. In Australia the test is collected differently, it has to be wrapped in foil yes.

  15. Hi Maria,

    could you recommend anyone in Newcastle NSW? Our local compounding chemist has provided supplementation which anecdotally has helped my 5 yr old – we missed 3 days and his behaviour returned in the context of a stressful situation.
    We have not yet had formal testing – how long do we need to be off the supplements for? TIA

    • Hi Flavia,
      I do skype consults nationally. Pyrolles requires individualised treatment and i find most people who’ve been prescribed a compounded formula with multiple ingredients don’t do well on it. I can order all the testing. Need to be off supplements for 3 days prior. Hope that helps,
      Maria

  16. Maria I have two boys aged 8 and 10 who were diagnosed last year. One is quite severe, the other less so. I suspect that I may also have pyroluria, I have fibromyalgia. The boys have been tested and we were seeing a great integrated GP, we had scipts compounded and aside from real issues with getting the boys to take the supps (neither can swallow capsules) when they were I noticed amazing differences. It was like a miracle. We ran into two problems. The boys eventually refused to take the supps, nothing we could do took away the poison taste of the vitamins. And at $460 for two months supply for both boys, as a single working mum, I just cannot afford it. I’m stuck. Our Integrated GP has left and I’m trying to find someone who can really help me work out affordable and reasonable ways to help my children. My youngest is now so anxiety ridden that I’m struggling. We are in Eltham Vic and I was wondering if you could recommend anyone? preferably that doesn’t cost a fortune and would genuinely be interested in helping me find affordable ways to treat the boys. Many thanks

  17. Hi Maria – I’m seeing an integrative medicine practitioner for both myself and my son (aged 10 years).

    Both of us are being treated for pyrolles, but differently. My son is taking Pyrolle Protect and magnesium. I’m taking zinc with b6 and magnesium.

    Ourpractitioner wasn’t interested in urine testing us as the test is unreliable if done incorrectly.

    I’m concerned that we may not be getting sufficient dosages of the supplements. I’ve been taking them for 10 months at the ssme dosage with little improvement.

    Do you have anyone to recommend to me in Adelaide?

    Kind regards,

    Michelle

    • Hi Michelle, I do Skype consults nationally, if you prefer someone local- Rohan Smith is the best in Adelaide. Cheers

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  19. Hi Maria
    I have a 14 year old son who is on the spectrum (asd), he also has OCD, ADHD, & Tourettes(nervous ticks). He is being treated for depression with Paroxatene. We live on the Far Nth Coast (Near Coffs Hbr). We are at our witts end with our gorgeous boy as we just cant seem to find anything that is helping. My husband suffers depression ( Ptsd) from an abusive childhood. We tick so many boxes . Is there anyone in our area? Im exhausted …..

  20. I have been diagnosed with this condition with a high reading and have been placed on supplements from a compound pharmacist in QLD. They are truly gross and I can taste them for hours after taking them. I live in central west nsw. I really need some good solid advice on dietary requirements as I am completely lost when it comes to food and cooking. Vague food groups are not helpful to me I am currently suffering from depression and anxiety which is made worse as I know I am not eating properly but not sure what I should or shouldn’t be eating. Is this something you are able to help with. Kind regards, Lisa

  21. Hi Maria, thank you for taking the time to talk about this.
    I was recently tested and found to have this condition. I am writing to ask if you have seen any link with repetitive UTI’s? Rather than another round of antibiotics, I am wondering if taking the correct supplement, which I started a couple of days ago, could help me?
    Kind regards

    • Hi Angie,
      Pyrrolles is not really a condition in itself but an indicator of immune, metabolic, mental and gut health issues. UTIs occur because of gut flora imbalance as well as a run down immune system, so yes, addressing pyrroles will help address immune health and require further gut work. Feel free to book in a free 15min consult if you’d like more info: https://www.truefoodsnutrition.com.au/clinic-bookings-2/bookings/
      cheers

  22. Hi,
    Can pyrrolles impact fertility and recurrent miscarriage?

    • Hi Kylie,
      Not directly but usually recurrent miscarriage and fertility issues relate to methylation and MTHFR gene (amongst other reasons of course like autoimmune conditions and gyno issues) and many people with pyrroles tend to have methylation issues. It’s worthwhile testing for all this, let me know if I can assist further and feel free to book in a free 15min phone consult using this link: https://www.truefoodsnutrition.com.au/clinic-bookings-2/bookings/
      thx

  23. Hi Maria, I want to get my 8yr old son tested for this, do you know of anyone that I can take him to that is close to me? I live in Hoxton Park NSW 2171.
    Many Thanks, Linda

  24. Hi Maria,
    Wondering if you know any colleagues in the Canberra ACT region that specialise in pyroluria treatment for kids . If not , do you still Skype clients ?

    • Hi Karen, sorry not aware of anyone in Canberra but yes I skype nationally and have many clients from Canberra and can order testing there. cheers

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  26. Hi, I was diagnosed with Pyrrole disorder (test came back showing levels of 52) and have a supplement from a compound chemist. Feeling ok in terms of mental health but still waiting for other symptoms such as pale skin (especially on legs, shoulder and back are normal), abnormal fat distribution around stomach, poor digestion and acne (more like deep spots in cheeks rather than whiteheads) to start mending. Does this normally take longer to mend? Interested to know why you wouldn’t prescribe the compound medication? My integrative doctor back home in a Sydney said he only cautions this is free cooper serum is high but mine wasn’t apparently? Thanks.

    • Hi Eleana,
      Pyroluria is not just a disorder, treatment involves addressing gut issues, thyroid, methylation and many other aspects. It’s not just about taking a pyrolle supplement. Many people react to compounds as B6 is thrown in too quickly or the combination is not right for the person. I use a different approach in clinic.
      Cheers

  27. I find it very interesting that you appear to use 40 as a threshold for diagnosis. I have been told that I definitely have pyroluria based on a result of 20, which seems consistent with how the handful of U.S. practitioners diagnose. As Australia seems to be ahead of the U.S. in terms of number of clinicians in this area and research, I wonder if the U.S. will adopt this much higher benchmark. On a personal note I have to admit being skeptical about my test result given the presence of only some of the vaguer mental symptoms and none of the physical signs.

    • Hi and thanks for your comment. Yes the new 40 benchmark is what is used now by up-to-date practitioners (this research by an Australian university will be released at some stage in the near future). Diagnosis of pyroluria requires matching multiple symptoms together with the result of pyrolle test as well as hair and blood tests. I don’t really see it as a ‘condition’ as such, it is a strong marker of oxidative stress and needs to be addressed. The pyrolle testing helps monitor the state of oxidative stress.

      • Thank you and that’s very interesting. Here in the US, based on a result of 20 alone, and no physical signs just very generic anxiety symptoms, at least two practitioners have recommended taking large doses of zinc (75 mg) and B6/P5P (300mg). It seems if I consulted with Australian practitioners they might take a different view. Also, and perhaps it’s just semantics, but from what I have read of the Pfeiffer/Walsh literature, they do seem to view it as a “condition” not simply a marker of oxidative stress.

      • Data from a lab other than Pfeiffer/Walsh, finding that in their patients, high pyrroles were NOT associated with B6 or zinc deficiency. How interesting.

        http://orthomolecular.org/library/jom/1997/articles/1997-v12n02-p096.shtml

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  29. Hi Maria
    My 4 1/2 year old son was diagnosed with ASD when he was 3 1/2. I suspected he was on the spectrum before he was 18 months old. It took me 2 years to get him assessed through the public health system. I suspect Pyrrole disorder may be a significant contributing factor to many of his struggles. I am a sole parent and the sole carer of my son. I work part time and for the 4 days each week my son is not in daycare we stay at home because my son is so overwhelmed by the world he refuses to go out. Once in a while I’m able to get him to the park or a play date. He’s a runner and going out presents huge safety risks. He’s a loving child and really likes people but can’t cope with crowds (more than 2 people around him) and becomes so unsettled at all the sights, sounds and movement and can’t focus when we are out and about. He’s never had a solid stool in his life and I’m sure he has gut issues. My finances are extremely limited and I don’t have a computer or a car. I so very much want to make my son’s world bigger and help him to be able to enjoy the world more, contribute to it and interact with it. Phone calls are extremely problematic – my son won’t usually tolerate me talking on the phone and there is nowhere at my work I can have a private conversation. Please email me with details and costs about how I might be able to get my son tested. I live on the Lower North Shore in Sydney. Many thanks

  30. Hi Maria,
    Can you recommend a doctor in the Sutherland Shire that tests for Pyroluria and MTHFR gene. My regular GP is not comfortable with these tests.
    Thanks

    • Hi, I don’t recommend any GPs as I test for and address Pyroluria myself and do skype consults nationally. cheers

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  32. Hi Maria,

    I live in Ballina in Northern NSW and am pretty sure I have Pyroluria as all of my symptoms fit the profile, and have done since I was a kid.

    I have seen SO many specialists for all of the symptoms I have suffered over the years, and things get better for a while and then, any time I get really busy or stressed, get worse again.

    I have recently been put on a gluten free/dairy free diet, which I think has made things worse (too much too soon – too much stress on the body again), and have been being treated for a thyroid issue with high dose vitamins (once again, things have gotten worse).

    I’m seeing a naturopath in Lismore (Vitality and Wellness Centre – do you know of them?). Being so sensitive, my concern is further potential reactions from more high dose vitamins.

    Do you have any suggestions – the last few weeks have been unbearable….like “might need to check myself into a hospital” unbearable.

    Many thanks

    Sarah Rutten

    • Hi Sarah,
      Thanks for reaching out. Every case with pyroluria is very individual, please feel free to make a time on my home page for a free 15 min call to discuss your case. Thx

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  34. Hi Maria
    I have a 10 yr old son with autism and is very aggressive. He was tested for pyrrole which was very high at 98.6%, however the treatment my son was previously on for pyrrole was a combined supplement in a tube/stick that was expensive and we found no changes after 6 months so we stopped treatment. My son is currently on dexamphetamine and risperidone which does not help with his aggression. His diet is poor and he gets constipation issues as he refuses to eat fruit and veggies so he is also taking movicol daily. He is currently taking probiotics and daily vitamins. He has also been taking a supplement called Protandum from the US for last 14 months which is for oxidative stress however not seen any significant changes in my son so I will take him off supplements. I was also positive to pyrrole myself so definitely could be hereditary, I have an 8 yr old daughter but she has not been tested, no symptoms though. Thanks Jacquelyn

  35. Hi again Maria

    My son was previously on a standard compound that was made up for him which we saw no results after 6 months. Could you email me with costs for treatment etc as I am on a budget. Also does this mean that the treatment for pyrrole is on-going for life or can pyrrole be treated just until the symptoms clear up?

    • Hi Jacquelyn, specific treatments are highly personalised and require a consultation. How long supplements are required for is also highly individual. Thx

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  38. I am hosting a kids birthday party and there is a little boy (5 years old) who is attending that has pyroluria. I would like to try and have some food that he can eat. Do you have any suggestions on food that may be ok. I will be making the food myself so I am able to substitute different flours, diary products etc for ingredients that he may be able to eat.

    • Hi Maria, I strongly suspect my children of having Pyroluria given the associated symptoms. Do you know of anyone in Canberra who can test for this? I was also wondering if there were any links of this to Haemochromotosis? I am a carrier. I often feel like I’m about to lose my temper and it’s becoming more often!
      Thanks
      Kerry

      • Hi Kerry, I work with clients all across the country and can order the pyrolle test anywhere, feel free to book a consult through the calendar on my homepage,
        cheers

  39. hi

    My 5 year old son shows all of the symptoms of pyrolles in a recent test this is pyrol came back at 15.5 which is just on the limit but because he has had such a dramatic and violent personality changes the integrative dr want to treat him with a zinc/b6 topical cream …. what is your opinion with such a borderline count ? Thanks halena

    • gluten and dairy free would be a priority and no artificial additives

    • your integrative doctor would have made the clinical decision based on the symptom picture and test results. It’s impossible to say whether a borderline result should be treated without understanding family history, symptoms as well as data like bloods and hair mineral analysis

  40. Hi Maria, my daughter has been diagnosed by an integrative medical practitioner.
    I have MTHFR mutation and believe that she does but she has been given cyanocobalomin instead of a methyl B , does that feel wroong to you?

    • Hi Brita,
      very hard to comment without knowing individual details. Generally cyano is not the best form, it’s synthetic and difficult to absorb for anyone, cheers

  41. Hi Maria
    I was wondering if you could have any recommendations, I have gut issues such as hpylori and SIBO, hypothyroid, fibromyalgia, Pyroluria, histamine issues that causes constant lighthheadness with low blood pressure, panic Attacks, agoraphobia, chronic fatigue, reactions are instant after eating anything, I have seen several functional practitioners and naturopaths and every supplement they give me it causes reactions and so I’m left with not being able to take anything. Do you have any suggestions of what I can do to start healing.
    Thank you
    Florentina

    • Hi Florentina, I often work with highly sensitive patients like yourself, histamine issues are tricky and need to be addressed carefully first with diet and then slowly with supplements. Stress is a major factor that needs to be addressed. I work closely with Scott Allerton from Sydney Integrative Hypnotherapy, I recommend you start working with him first (he does online consults also) to address the stress related issues to calm the body down.
      http://www.sydneyintegrativehypnotherapy.com.au
      cheers

  42. Hi Maria
    I’ve read your article with interest. I’ve recently been diagnosed with Pyroluria with a urine reading of 24. Dr Woodbridge put me on “Primer Pyrrole” treatment, which consists of 3 tablets per day, with each tablet containing:
    B6 100mg
    P5P 100mg
    Vit C 1000mg
    Vit E 300iu
    Magnesium as oxide 150mg
    zinc as picolinate 50mg

    in addition to 1000mg evening primrose oil

    Do you see this as a reasonable blend to treat my condition? I’ve noticed in the last 3.5 weeks since commencing treatment, I have more energy (also diagnosed with CFS/ME) but my stomach has really been tender the past day, and I’m not sure of the cause. I’m also on the paleo-ketogenic diet. Thanks for your help!

    • Hi Donna,
      I can’t comment on any individual supplement protocols without going through your case, I suggest you go back to the Dr and discuss your reactions. You can book an online appointment with me if you would like my input.
      cheers

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