Pyrrole Disorder

What is Pyroluria, pyrrole disorder, mauve factor?

Pyrrole disorder, also known as pyroluria, kryptopyroluria, kryptopyrole or Mauve disorder is a biochemical imbalance involving an abnormality in haemoglobin synthesis that can be purely genetic or acquired through environmental and emotional stress and especially from ‘leaky gut syndrome’ and the over use of antibiotics.

Pyrrole disorder is caused by the overproduction of hydroxyhempyrolin (HPL). The HPL binds zinc and B6 preventing their use by the body and causing excretion in the urine and hair. HPL is a biomarker for oxidative stress and is neurotoxic. Stress of any kind will increases production of pyrroles/HPL which in turn decreases zinc and B6

The main biochemical features are of severe zinc and B6 deficiency. Zinc is essential for 100’s of processes in the body and is particularly important for healing, immune function, digestion, neurotransmitter activation, physical growth, memory, insulin sensitivity, and control of blood sugars, DNA replication and more….

Zinc and B6 are essential for production of neurotransmitters such as serotonin (our happy hormone), melatonin (our sleep hormone), GABA (our relaxation hormone), and acetyl choline which is important for memory. They are also involved in production of our steroid hormones such as cortisol (our anti-inflammatory, anti-allergy hormone and stress hormone) and the conversion of oils in the body (fat metabolism, liver and gall bladder issues and weight control). The oils EPA/DHA but mostly GLA are found to be low in those with pyrrole disorder and are damaged by oxidative stress/free radicals/toxins created by pyrrole.

Signs and symptoms suggestive of someone having pyroluria.

White spots on fingernails (zinc deficiency) is a strong sign of this problem. Hypoglycemia/sugar intolerance is common, as are food and environmental allergies.
Other common symptoms are joint pains (especially knee pain), fatigue, headaches (especially migraine headaches), bowel dysfunction such as irritable bowel syndrome, easy bruising, dizziness, insomnia, poor memory and difficulty concentrating. Poor stress control, nervousness, anxiety, mood swings, severe inner tension, episodic anger, poor short-term memory and depression are other common symptoms

Obviously, such symptoms are common, and not everyone who has them will have pyroluria and not everyone with this disorder will have all of the symptoms and may even have only two, but have difficulty treating these symptoms with the usual methods.

The treatment to correct the imbalance seems surprisingly simple. It involves taking zinc, vitamin B6 and/or pyridoxal 5-phosphate (activated B6), GLA, an essential omega 6 fatty acid found in evening primrose, borage and black currant oil, Vit E and magnesium.

However, just because the treatment seems relatively simple to describe does not mean that it is easy to do. As people start to take these needed nutrients they may feel terrible as heavy metals and other toxins are released into circulation and their immune system is activated, causing microbial toxins to also be released.

These nutrients should be introduced gradually with the supervision of a qualified practitioner and often need further support on an individual basis. It is not advisable for people to self medicate as B6 & zinc toxicity can also be an issue for some people if their body still can’t utilise these nutrients properly and so close observation by an experienced practitioner is important.
Adding the nutrients that will correct the pyroluria will not make all of the patients problems go away, as those who have this tend to have chronic microbial infections, a sea of accumulated toxins and a history of emotional wounds to still deal with. Correcting the pyroluria, however, will allow them to respond appropriately to other treatments that would have been previously ineffective and help them to finally move down the road towards true healing.

Unfortunately pyroluria is not a recognized condition by many health practitioners. It is wide-spread and mental health experts estimate as high as 20% of all psychiatric patients and 40% of people with schizophrenia and 5% of ‘normal’ people have pyroluria. I personally am seeing this statistic a lot higher in my clinic in ‘normal’ clients. It seems to affect women more than men but unfortunately most people with pyroluria go undiagnosed.

Diagnosis of pyroluria / pyrrole disorder

Pyroluria is diagnosed by a simple urine test which detects KPU in urine. Most persons have less than 10mcg/dL of KPU. Persons with 10-20 mcg/dl are considered to have “borderline” pyroluria and may still benefit from treatment. Persons with levels above 20 mcg/dl are considered to have pyroluria. Some have levels in the hundreds.

Treatment of pyroluria / pyrrole disorder

Pyroluria is managed in part by restoring vitamin B6 and zinc.  The type of replacement therapy is very important as zinc must be provided in an efficiently absorbed form. Vitamin B6 is also available in several forms. Other nutrients may assist include niacinamide (B3), pantothenic acid (B5), methylcobalamin (B12), manganese, vitamins C, E and magnesium. Food sources and nutritional supplements containing copper and red/yellow food dyes should be avoided. Copper is commonly high in people with pyroluria and needs to be detoxified. It is advisable to have mineral and metal levels, ratios and balnces performed by a Hair mineral analysis to get the treatment correct. I prefer to use a lab in the United Sates as they have an excellent reporting system that is usually around 38 pages long. The cost is only $155 plus postage of kit and postage of sample to the lab (minimal). Kits can be obtained from the True Vitality Clinic. see Heavy metal and Mineral testing for more info.

People with mild-moderate pyroluria usually have a fairly rapid response to treatment if no other chemical imbalances are present. People with severe pyroluria usually require several weeks before progress is seen and improvement may be gradual over 3 – 12 months. Features of pyroluria usually recur within 2 – 4 weeks if the nutritional program is stopped.  Thus, the need for treatment is thought to be indefinite, but with good management and healthy lifestyle and emotional balance I feel that it is possible to need no supplementation once the correct balance is created and a fairly stress-free life is sustained.

The history of pyrrole discovery

Pyroluria, was first noted by Abram Hoffer MD, PhD and Humphrey Osmond, MRCS, DPM in the early 1960’s in their research on metabolic imbalances in people with schizophrenia This condition has been found to be relatively common in people with schizophrenia and bipolar disorder (manic depressive disease) by orthomolecular psychiatrists (psychiatrists who focus on nutritional therapies); they have found approximately 20% of schizophrenics have this condition, and they tend to respond well to treating it. But Dr. Klinghardt and others have found that not everyone with this condition suffers from such extreme psychiatric problems (though many may have some tendency towards anxiety and/or depression). Indeed, the breakthrough Dr. Klinghardt has made is in recognizing how common this condition may be in other people with chronic illness.

In the early 1970’s Carl Pfieffer MD PhD found evidence of kryptopyroluria in 5 % of normal people he tested (people without serious psychiatric illness). This may represent the percentage of the population with a strong genetic tendency to kryptopyroluria, but it is possible the number of people with this problem has increased due to our increasing exposure to environmental stressors (microbes and toxins) as well as increasing emotional unrest (stress increases pyrroles) and the higher use of electronic devises (positive ions) which also leads to less ‘natural living’ and less exercise and fresh air.

Testing for pyrrole disorder

Pyrrole is extremely sensitive to light and heat and so a urine sample must be collected in an environment with the least exposure to light as possible, in a container with a preserving agent such as vitamin C, wrapped in alfoil upon sample collection, snap frozen and then sent to the testing laboratory on dry ice, so for this reason it is not advisable to send your urine sample in the post even if frozen first. Many a person has been misdiagnosed this way and then missed out on appropriate treatment, not to mention the loss of cost of the test.

Testing laboratory – Applied Analytical Laboratories – Brisbane

There are a few testing laboratories in Australia, but the most accurate and reliable one I have used is a lab that is dedicated to only testing for pyrroles and nothing else, so they are specialists in this field and dedicate all of their time to this testing, research into pyroluria as well as research and development of better collection systems. They are AAL. For a list of places around Australia that a collection can be done and for your practitioner request sheet, please email me via my ‘contact’ page, not the ‘comments’ section below, so that I can then speak to you directly and give you the right details and sheets. Note please give me your area that you live in so I can give you the place closet to you.  Brett from AAL has written a post to answer questions on why correct collection procedures are important and the science behind it all. Very well worth a read. You can find this post by clicking here.

Important notes to read before getting tested for pyrrole disorder

Please note, that it is super important how the collection of the urine sample is taken and even more important that it is handled correctly to get to the lab without the pyrroles in the sample deteriorating. The sample must be collected in a dimmly lit room if possible, in a special container that has a preservative. The urine must not be pre-collected, but done directly into the specimen container and then immediately wrapped in aluminum foil, as pyrrole levels are affected by light and heat. Then the sample must be snap frozen and delivered to the lab with dry-ice, not just frozen and posted as some labs do, or there will be a false negative or low reading. see above link.

The best time of day to do the test is from the second morning urine sample of the day onwards, so when booking your time with the collection center please take this into account when booking your time. You do not have to be fasting, only off B6 and zinc, unless retesting to check if your dose is working.

It is best to not have taken any B6 or zinc for at least two weeks prior to collection as this too will give a potential false  reading. If you have been taking B6 supplements for longer than 6 months already, then you will need to get your B6 levels tested first after a few days ‘clean out’ of no products, to see if you have elevated B6 which will block the test from working. If you have elevated B6 levels then don’t do the testing till your B6 is back into reference range or again the test will potentially have a false negative reading or a lower reading. However, for follow-up pyrrole testing, you must stay on your B6 and zinc regime to show that the dose that you are on is correct for your level of pyroluria.

It is also important to note that even though B6 and zinc are used as part of the treatment of pyroluria, taking these products doesn’t always work if they are the wrong types, but can still accumulate to toxic levels in the body and be causing more harm than good. Many people with pyrrole find that because their body doesn’t utilise minerals well, they can still have toxic levels showing up in the blood.

Important also is to not just be on the treatment without monitoring of your B6, zinc and copper levels or you could risk getting toxic levels or further imbalancing other things. In short, pyroluria needs continued observation with a good practitioner.

Please know that I can offer any tests needed (via pathology request sheet), but there is no medicare rebate with Naturopaths pathology requests.  If you would like the rebate then you will need to find a good GP that tests for nutritionals. Medicare generally does not cover vitamin testing (except iron), but it is not expensive to do. Please note that pyrrole screening is not covered by Medicare even if requested by a GP. The pyrrole screening also needs  a request sheet which I can also offer and then we can have an in clinic, phone or skype consultation. To organise this please contact me via my ‘contact’ page and NOT on the comments below. Comments below are for sharing of experiences of pyrrole with others or you can visit the Pyrrole Australia Face Book page and have discussion and comments with others with pyrrole disorder by clicking here.

Important Note: I am very often asked if I know of a practitioner or G.P that I could recommend for treatment. I do not keep a list of practitioners, but I do however have a list of places to get your sample taken, but you will need to contact me via the ‘contact page’ not the comments below and let me know here you live, so that I can direct you to the correct collection center. Thank you.

Questions

I had a question asked of me below in the comments but I felt it was important to share this up here where everyone can see as it was a good question…here’s my response

A question was recently emailed to me that I will abbreviate to the following: If B6 and zinc bind to pyrroles to help get pyrroles out of the body then why do we need to stop taking B6 and zinc before testing…shouldn’t this help to show pyrrole excretion and not actually interfere with the test results. And also, if you have a deficiency of B6 and zinc would this in turn increase pyrroles in the body.

Yes it is true that pyrroles bind to B6 and zinc in the body and so thereby creating a deficiency of these nutrients in the body and that the use of B6 and zinc can help to both replete the deficiency and also help to reduce the pyrroles, but it is how it reduces the pyrroles that is important.

Just having a deficiency in these nutrients doesn’t in itself cause an increase in pyrroles but rather a faulty enzyme pathway in the liver causes them to increase.

Every single person makes pyrroles as a by-product of the conversion of iron into haemoglobin (in less technical words), but if the livers P450 enzyme pathway is faulty then there is a higher amount of these toxic metabolites/by-products produced.

These toxic metabolites then bind to B6 and Zinc, or rather, the liver binds B6 and zinc to the pyrroles to make them safe to leave the body. It is the livers job to bind (conjugate) toxins of all sorts to help them safely out of the body. Toxic metabolites are often bound to particular amino acids but for this toxin the liver uses B6 and zinc. In the bound state this substance is no longer detectable as pyrrole because it is a different substance altogether than it was before and so therefore is undetected.

If a person has been taking B6 and zinc then the test can show a negative reading or lower reading than if not taking the supplements as the pyrroles will be bound and in a non-detectable form.

The higher the pyrrole level, the higher the need to take B6 and zinc to bind and clear it safely from the body as well as replete the deficiency state that can cause many symptoms.

Doses needs to be monitored and adjusted for the individual as some cannot tolerate high levels of B6 or zinc as there is still the underlying issue of poor conversion of vitamins and minerals in the first place (remember the P450 pathway is faulty). Having a faulty P450 pathway means that there are other vitamins and minerals that the liver cannot convert to the active form properly but because this doesn’t form toxic by-products (that we are aware of) then that is not looked at, but in general there is commonly other vitamins and minerals and fatty acids that can and are deficient or improperly utilised by the body effectively.

When the blood is tested for nutrient levels it will often show adequate levels but if the liver is not converting them properly or they are not being utilised properly then it is as though the body is still deficient. This is something that has many practitioners scratching their head as they think “I was sure that person was B12 (eg) deficient but their levels show to be fine: But this is another story….to be continue…

For a link to the Pyrrole Australia Face book page click here

Important Note: I am very often asked if I know of a practitioner or G.P that I could recommend for pyrrole treatment. I do not keep a list of practitioners, but am happy to help you any way I can personally either via in clinic consultation or via Skype or phone consultation. I do however have a list of places to get your sample taken, but you will need to contact me via the ‘contact page’ (see links above) NOT the comments below (please) and let me know where you live, so that I can direct you to the correct collection centre. Please note that collection centres are not laboratories, just places to collect the sample. Thank you.

For information on Common adjunctive testing done alongside Pyrrole screening click here.

For information on the food that best suit someone with pyrrole disorder and foods rich in B6 and zinc click here.

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162 thoughts on “Pyrrole Disorder

    1. sue

      Hi Alison,
      I now have all a list of places that people can go to all around Australia, but you will need to contact me via the ‘contact’ page rather than the ‘comments’ page so that I can email you the request sheet and details.

    2. Fleur

      Can someone please explain how the pyroles don’t show in the urine test after appropriate supplementation. Does supplementation somehow stop the unusually high levels of pyroles being produced and exiting the body? I’m extremely interested because I have a positive test, and I have been told my test could come back clear after treatment. How does taking the supplements produce a clear pyroles test….is exactly what is being measured? Many thanks

      1. sue Post author

        Hi Fleur, the supplementation doesn’t stop the pyrroles being produced, but actually helps to clear the pyrrole, so sometimes you will see a higher score before a lower one. do know that pyrrole is a sign of some other oxidative stress going on in the body such as leaky gut, heavy metals, chemical exposure etc etc, so just taking vitamins and minerals will never cure pyrrole. It has to be a multi faceted approach. it is the pyrrole level (aka HPL) that is being measured, which is a toxic byproduct. If you read some of the articles on the pyrrole page this migh help in understanding further. all the best, love sue x

  1. sue

    Hi Elizabeth, yes Sullivan & Nicolades are geared to be collection centers and now so is QML (and many others), but you still need a request form from me. The Pathology centers don’t do the test themselves in most cases, but send the urine sample to the lab in Brisbane that does the test. (called AAL) I now have the list for most places around Australia for collection, but people will need to contact me direct from my email contact page, rather than the ‘comments’ part of the page like here. If you do that I can then give you the request sheet also. If anyone needs a form emailed to them, please give me your area you live so I can direct you to your closest collection center. with love, sue

  2. Rachel Hall

    Hello Sue
    I am seeing more and more patients presenting with pyrolles
    Do you feel getting their heavy metal burden reduced assists with this condition as many of them have amalgam mercury fillings

    1. sue

      Hi Rachel,
      Thank you for your comment to my pyrrole article. People who have pyrrole disorder do have issues with detoxification and mineral and metal balance in general, so yes, reducing their heavy metal burden is an important aspect to assisting them but needs to be done slowly, gently and with the utmost care as I have also seen many who have had too many amalgams removed at one time only to go into toxic shock of sorts as they have difficulty clearing toxins. They first need to be sure that if they have any ‘leaky gut syndrome’ that, that is healed first or the metals/toxins will be re-absorbed back into the system. As a holistic dentist yourself how do you find these patients respond to amalgam removal?

      1. Robyn

        Im looking for a good holistic dentist. I live in east Gippsland, Do you know of any holistic dentists anywhere near this area? Where does Rachel Hall practice?

        Robyn

  3. Rachel Hall

    I find they do really well provided they have support, follow a diet that supports their gut and take supplements to aid in mercury detox. I always tread very lightly with their amalgam removal, making sure we only do one or two at a time with long periods between visits so they don’t become unwell.
    I only treat pyrolles patients if they are under the care of a good naturopath or integrative medicine GP who understands their condition.

    Some struggle as they get copper dumping as the mercury balance shifts
    What’s the best way to support them through this in your experience?

    1. sue

      Copper dumping can be a real issue and there is often hair loss and increased feelings of aggression as this happens. Copper needs to be balanced with Zinc and not just any zinc. The best form of zinc is a zinc picolinate. Also the taking of Vitamin C helps to clear the excess Copper from the blood stream as it is immobilized. Not everyone can tolerate Vit C so care needs to be taken there too. Some forms of Vit C suit better than others, but no one type suits all.
      The other thing I have noticed is a correlation between Mercury levels and candida. I read that candida protects Mercury from converting into the more toxic Methyl Mercury form and so it is best not to clear candida till the mercury is clear. Usually what happens is that those trying to clear candida find it doesn’t want to happen and then find out they have toxic levels of Mercury so it is though the body knows this and won’t let go of the candida till it is safe to do so.
      Also I have heard that Selenium which is often used to help clear toxic minerals from the body, binds to Mercury making it impossible to then clear from the body, but is bound in a form that is supposed to do no harm.
      what are your feelings and knowledge on these areas Rachel?

    1. sue

      Hi, the best way to find the contact page is to use the red tab near the top of page called ‘Contact’, if you click on that writing it will take you to the contact page. with love, Sue

  4. An

    Hello,
    Very informative article, thank you for taking the effort to give such a detailed explanation. I would like to ask you a question as I have been reading lately before testing, it will be great if there is information about it.

    If kryptopyrolles are forming rings with b6 and then with zinc and take them out of your body, why do you have to stop taking b6 and zinc before test for pyroluria?

    They should not influence the urine excretion of kryptopyrolles, because the basis of the supllementation with zinc and b6 is to replace the minerals taken out of your body. If the zinc and b6 influence the kryptopyrolles result in your urine, then actually the deficiency of both them makes your body produce kryptopyrolles, so you have to take them to stop the body from producing them…

    I suppose there is a very logical answer, and it is so good to know that something so simple can help you greatly, I will definitely try it. Once again thank you for giving so helpful information.

    1. sue

      Yes it is true that pyrroles bind to B6 and zinc in the body and so thereby creating a deficiency of these nutrients in the body and that the use of B6 and zinc can help to both replete the deficiency and also help to reduce the pyrroles, but it is how it reduces the pyrroles that is important.

      Just having a deficiency in these nutrients doesn’t in itself cause an increase in pyrroles but rather a faulty enzyme pathway in the liver causes them to increase.

      Every single person makes pyrroles as a by-product of the conversion of iron into haemoglobin (in less technical words), but if the livers P450 enzyme pathway is faulty then there is a higher amount of these toxic metabolites/by-products produced.
      These toxic metabolites then bind to B6 and Zinc, or rather, the liver binds B6 and zinc to the pyrroles to make them safe to leave the body. It is the livers job to bind (conjugate) toxins of all sorts to help them safely out of the body. Toxic metabolites are often bound to particular amino acids but for this toxin the liver uses B6 and zinc. In the bound state this substance is no longer detectable as pyrrole because it is a different substance altogether than it was before and so therefore is undetected.

      If a person has been taking B6 and zinc then the test can show a negative reading or lower reading than if not taking the supplements as the pyrroles will be bound and in a non-detectable form.
      The higher the pyrrole level, the higher the need to take B6 and zinc to bind and clear it safely from the body as well as replete the deficiency state that can cause many symptoms.

      Doses needs to be monitored and adjusted for the individual as some cannot tolerate high levels of B6 or zinc as there is still the underlying issue of poor conversion of vitamins and minerals in the first place (remember the P450 pathway is faulty). Having a faulty P450 pathway means that there are other vitamins and minerals that the liver cannot convert to the active form properly but because this doesn’t form toxic by-products (that we are aware of) then that is not looked at, but in general there is commonly other vitamins and minerals and fatty acids that can and are deficient or improperly utilised by the body effectively.

      When the blood is tested for nutrient levels it will often show adequate levels but if the liver is not converting them properly or they are not being utilised properly then it is as though the body is still deficient. This is something that has many practitioners scratching their head as they think “I was sure that person was B12 (eg) deficient but their levels show to be fine: But this is another story….to be continue…

    2. sue

      Yes it is true that pyrroles bind to B6 and zinc in the body and so thereby creating a deficiency of these nutrients in the body and that the use of B6 and zinc can help to both replete the deficiency and also help to reduce the pyrroles, but it is how it reduces the pyrroles that is important.
      Just having a deficiency in these nutrients doesn’t in itself cause an increase in pyrroles but rather a faulty enzyme pathway in the liver causes them to increase.
      Every single person makes pyrroles as a by-product of the conversion of iron into haemoglobin (in less technical words), but if the livers P450 enzyme pathway is faulty then there is a higher amount of these toxic metabolites/by-products produced.
      These toxic metabolites then bind to B6 and Zinc, or rather, the liver binds B6 and zinc to the pyrroles to make them safe to leave the body. It is the livers job to bind (conjugate) toxins of all sorts to help them safely out of the body. Toxic metabolites are often bound to particular amino acids but for this toxin the liver uses B6 and zinc. In the bound state this substance is no longer detectable as pyrrole because it is a different substance altogether than it was before and so therefore is undetected.
      If a person has been taking B6 and zinc then the test can show a negative reading or lower reading than if not taking the supplements as the pyrroles will be bound and in a non-detectable form.
      The higher the pyrrole level, the higher the need to take B6 and zinc to bind and clear it safely from the body as well as replete the deficiency state that can cause many symptoms.
      Doses needs to be monitored and adjusted for the individual as some cannot tolerate high levels of B6 or zinc as there is still the underlying issue of poor conversion of vitamins and minerals in the first place (remember the P450 pathway is faulty). Having a faulty P450 pathway means that there are other vitamins and minerals that the liver cannot convert to the active form properly but because this doesn’t form toxic by-products (that we are aware of) then that is not looked at, but in general there is commonly other vitamins and minerals and fatty acids that can and are deficient or improperly utilised by the body effectively.
      When the blood is tested for nutrient levels it will often show adequate levels but if the liver is not converting them properly or they are not being utilised properly then it is as though the body is still deficient. This is something that has many practitioners scratching their head as they think “I was sure that person was B12 (eg) deficient but their levels show to be fine: But this is another story….to be continue…

  5. Reegan

    Hello,
    Can you please tell me which form of B6 (non-active or the active i.e., P-5-P) is better for dealing with pyrrole disorder? The active is a lot more expensive…
    Cheers!

    1. sue

      Hi Reegan,
      it is usually best to use the active P5P form of the B6, but a small number of people respond better to the old fashion regular type. Love, Sue

  6. Patricia

    Hi there, Harry,I have had a hunch, after many years of chronic ilelnss, that copper may be part of my problem. I did some heavy metal chelation with EDTA that caused the most horrendous paranoid symptoms. I seriously felt like I was developing schizophrenia, even though I knew I wasn’t.Which led me to pyroluria. And so I did the test, and just today my results have come back as positive. I’m really very relieved. It’s a great thing to know. Thanks for your posts :)

  7. carole smith

    Would you please give me the name of a couple of practitioners re Pyroluria in Sydney near Chatswood but further afield OK if in Sydney. Please nominate who you think is best for a 10 yr old boy with pyrrole level of 62. thank you very much.

    1. sue

      Hi, Just to let everyone know, that I don’t actually know of any practitioners that I can refer people to in other areas other than the Gold Coast, and if on the GC I would of course be recommending myself. :) I can however offer Skype or phone consultations to anyone all over the world and currently do this often. It is the best way I can support those that don’t live near me. Please use my ‘contact’ page to email me directly (not the ‘comments’ below) and we can set up a time that suits us both. I look forward to helping as many people as possible with their health concerns. Love, Sue

    2. Elly Vanags

      Hr. I have just taken my daughter to Dr Raniga at Castle Hill with symptoms that have plagued her for years. She suspects Pyrrole and has ordeted testing. Dr Raniga’s speciality is the gut. Her practice is called Savannah Health. 96597181. Good luck. Elly

  8. sarah

    Dear Carole,
    There is a lovely Dr in Manly, her name is Maria Mackey. She has sound knowledge of pyrrole disorder. Can’t recommend her more highly.
    Practice-Your Health Manly
    Google and view “select a practitioner” her services are extensive. She is very thorough and understanding.
    $230.00 -$60.00 back from medicare. Subsequent appts cheaper. Best money you’ll spend. I’ve checked the collection centres and the closest to you is prob bondi junction.
    Feel free to contact me if you have any Q’s meggsarah@outlook.com
    Best of luck,
    Sarah

  9. Doug

    Whole family has P disorder I am sure. Living in British Columbia Canada. Trying to locate some practitioner versed in Pyrrole Disorder in reasonable proximity to me. I suspect I’ll have to go it alone

  10. Kelly

    Hi Sue

    I started taking zinc supplements at the start of the year and since then have been experiencing the worst candida of my life. I’ve had it on and off since I underwent antibiotic treatment for Lyme disease but it’s now out of control and I can’t get rid of it. I’ve tried diet, antifungals, probiotics, etc.

    Adding the zinc seems to be the junky change I can think of. I stopped for a couple of months and it eased slightly, though was still bad. I recently went back on the zinc and it’s flared again.

    Any ideas? Is this common?

    Kelly

    1. sue

      Hi Kelly, I have heard of candida being a common issue for many people both with and without pyrrole disorder, but never seen an association with zinc. Zinc should help. If anyone else has experienced this I would love to hear from you. with love, Sue

      1. Sally

        I was diagnosed with pyrrol disorder and then developed terrible skin problems as a result of taking zinc. Turned out that somehow the zinc had changed a ‘pathway’ which affected the fishoil supliments I’ d been taking for years. I stopped the fishoil and the skin promlem went away. So now I am back to inflammation of the knees without fishoil and no solution to all my pyrrol symptoms since i can’t tolerate more than 15gms of zinc a day which is way less than i need

        1. sue Post author

          Hi Sally, thank you for sharing your reaction to zinc. It is possible that if you take zinc trans-dermally (via skin/cream) that you may not react the same way. I have found this helps with those with a sensitivity to the B6. commonly reactions to zinc are due to high levels of copper toxicity that may be hidden or visible via blood or hair analysis. I would still persevere with whatever level of zinc you can take so that eventually it may help. with love, Sue

  11. Luciana Jasman

    I have a boy with autism and aggressive tendency. I want to check if he has pyrrole. we live in Singapore. Let me know how to get started. Thank you,
    Luciana

        1. sue Post author

          Whilst it is true that you can get your sample tested via post and this can be sometimes cheaper, you do need to know that the sample is very sensitive to both light and heat and if not kept frozen on dry-ice then it will deteriorate, so therefore only the higher reading samples will survive the journey. Please read the article I have that was written by Brett from the AAL lab in Brisbane on my site in the articles section for more info on this. with love, Sue

  12. Mel

    Hi, I’ve just got my urine test result back and it was positive (23). However, my blood test results show I am not zinc deficient (at the low end of normal range) and my B6 is very high (2-3 times the normal level). I have been taking multivitamins for approximately 18 months – 2 years but stopped taking them approximately 36 – 48 hours prior to the urine and blood tests. S & N advised I only needed to stop taking supplements 24 hours prior to urine collection. I have many of the symptoms of pyrrole disorder and my Dr (psychiatrist) was not surprised by the urine test result but is intrigued by the conflicting zinc and B6 results. She is going to do some more research and is attending a couple of conferences in the near future which will hopefully shed some more light and I am also trying to find some more information. Would be interested to hear your take on this. Thanks

    1. sue

      It is really common to have high levels of B6 even with pyrrole if you have been taking supplements, as a person with pyrrole can’t properly utilise the vitamins and minerals and that’s why the activated form is often used, but sometimes if your levels are already high it is better to have a rest from the B6 till it comes down. One time I had a really high level of B6 and some peripheral neuropathy to go with it and it took 9 months to go down and symptoms took 12 months to clear. It is also common to not have terribly low zinc but that doesn’t mean that you have enough to counter the copper levels for example. Plus blood mineral levels is not a true indication of what is in the tissues/cells only what is floating thru the blood at that time. If you get any further feedback from your doctor about this it would be great if you could share this with others either on this page or on the pyrrole Australia face book page. with love, Sue

      1. Kristen Dutcher

        Sue, I have the same situation, high b6 reading 3x the normal amount, how long should you stop the b6 for, not having any significant side effects.

        1. sue Post author

          Thank you for your comment on the pyrrole article. It is hard to answer your question as this can vary from person to person as to how quickly the B6 clears from your system and how much of an issue it really is. If you have no symptoms (which you did share) and if you are not needing to test for pyrrole (if you did then you would need to stop the B6 for few weeks), then I’d say you are safe to continue using it at very low doses of say around 10mg per day in the active P5P form only. If however you had your test done under the influence of having taken the B6 within 24hrs of the blood test, then this is an artificial reading and is best re-checked at another time. If going off your dose of the B6 causes problems such as return of symptoms, then keep doing what you are doing but be mindful of symptoms of too much such as tingling and numbness esp the fingers. All the best,
          Love sue

  13. Dan

    I tested positive to Pyrrole disorder last year after trying to find answers to my anxiety and fatigue. Most Dr’s response was to put you on anti depressants after knowing you for 5 minutes. My Pyrrole results came back at 22 which is borderline.

    The Dr who discovered i had Pyrrole disorder put me on the am and pm compounds but within a few days of taking the tablets i had really weird reactions like i couldn’t focus while reading and a feeling like my vision and brain were not working in sync? It turned out my B6 levels were through the roof at 750 when they should be down near 125.

    The Dr didn’t believe the B6 could be the cause until I went and had blood tests done. I then went in search of a new DR.

    I now have a great Dr who has tried all the different forms of B6 as he has a compounding lab right next door. My B6 levels went up even further to 1000 so he has now cut the B6 out of my AM tablet all together.

    I also tested positive to leaky gut and he believes I will also test positive to heavy metal toxicity. I also tested positive to H Pylori which is a nasty bug that ruins the mucosa linging in your gut and prevents you from absorbing nutrients from your food. There seems to a connection between the H Pylori, Leaky Gut and Pyrroles as they all involve low zinc levels. I think the H Pylori may have started the cascade of events?

    First step was to avoid foods that caused inflamation to my gut, secondly we treated the stomach parasites which i am waiting on the test results. My Dr is currently treating me with Amino Acid therapy which invloves sending urine tests to America every few weeks until my dopamine and seratonin levels reach “phase 3″ Once in phase 3 this should open up my detox pathways, open up my ATP production and temporarily keep my anxiety at bay until my body starts to reblance itself. There are apparently more nuerotransmitters in your gut than in your brain and if your gut bacteria is out of whack this can cause symptoms of anxiety, depression, fatigue etc.

    Our bodies are very complex but I hope we can all get our normal lives back some time soon. Good luck!

    1. sue

      Thank you so much for sharing your pyrrole travels. Yes, it can often be triggered by a strong stressor such as infection, but sometimes it can also be the other way around in that the pyrrole can affect your immune system by the low zinc and so the immune system isn’t as strong against the bugs. all the best, with love, Sue

  14. wendy

    Hi,
    I was diagnosed with this condition after seeing a wonderful doctor on the mornington peninsula Cristina Cooper, I highly recommend her to anyone. I however after taking all the zinc, b6 and magnesium don’t feel any better or different. I have seen her many times and my copper levels are still really high but zinc levels have improved. Is there something wrong as to why by copper levels wont go normal. I am due to have another blood test again but am going through a rough time with post natal depression as well and was hoping all the vitamins I am taking would help but I really don’t feel any different since diagnosis which was well over a year ago. Can you please offer any ideas? Many thanks

    1. sue

      Copper can take some time to clear from the system and as a person with pyrrole does have a harder time with detoxing heavy metals, or anything for that matter, that just makes things worse. Check to see if you have leaky gut syndrome as this will mean that the copper will just be reabsorbed on it’s way out of the system. great that your zinc levels have improved. Having a little one can be an extra stress on the body at the best of times but with pyrrole this is amplified as stress increases pyrrole levels which further depletes your special supplements. Get all the help you can to reduce stress and this may just make a difference. all the best, with love, Sue

    2. Walter Hartmann

      Did you get your iron level checked? It is the most likely in the 2 valence essential minerals, where copper is one of them. I read as well good evidence that if any disorder in the 2 valence essential minerals does not balance out within a reasonable time then underlying elevated lead and mercury levels can be the cause. Especially if fatigue and brain fog as well as digestive issues / dysbiosis with possible re-absorption accompany other symptoms.

      To quote websites on the topic: ‘The overall clinical picture is often muddy at best over time’ and ‘nobody can claim to know everything about digestive health’.

      What got me on the path to improvement is: learn a lot and try a lot. High magnesium intake was the launchpad that got me and others off square one. About 3000mg elemental Mg per day. Today it is a complex system of Vitamins, Minerals as well as Enzymes and pro-biotics and mild chelating agents.

      Even if a common start works the system becomes quickly different for each person. There are no hard and fast rules for everybody and nobody who did not take up their own case themselves and with therapeutic help and advice had any lasting success. Wishing You all the best 😉

    3. Virginia Goodall

      I just read your post. Thankyou. We live in country Victoria and the services are pretty poor around this disorder. It’s been a huge struggle for my daughter and still is every single day of her life. The disorder has been so debilitating she can’t work and she’s sick every single day of her life. She is on the compounding zinc, B6 etc which she takes regularly. I could go on for ages, so I will not bore you with her sad details of illness. Would you be so kind to give me the contact details of Dr. Cristina Cooper. It’s very difficult to find a specialist in this area as not many medicos recognise this disorder. Thankyou very much and kind regards, Virginia

      1. sue Post author

        I don’t know Christine Cooper, maybe one of the readers of this post wrote her name, but I googled her name and a few listings came up for her so if you do the same I’m sure you will find her info. The other places to look for good practitioners such as integrative doctors are the sites for MINDD.ORG and BioBalance as they both have a practitioner listings page that include integrative GP’s and naturopaths trained in this area. The other thing to consider if you can’t find someone local is to check if any offer skype/phone sessions as I am let to believe that many do. You may have to travel for a first consult and from then on can do follow ups via skype which is very handy. All the best with your daughter and look after yourself too,
        With love, sue xx

  15. Geoff Sinclair

    Hi sue my wife has pyrrole disorder with a level of 105. She also has severe leaky gut. Does her leaky gut need to be fixed first before she addresses her pyrrole? Regards Geoff

  16. Geoff Sinclair

    Hi Sue, my wife has pyrrole disorder with a level of 105. She also has severe leaky gut. Does she have to first fix her leaky gut before she can treat her pyrrole? Regards Geoff

    1. sue

      Well really both can be treated simultaneously but yes, leaky gut does need to be corrected before any true results will be seen. with love, Sue

  17. Keith

    Thanks for the article – i found it a helpful read after getting my pyrrole results back today from our (fantastic) GP in Tasmania. My wife’s level was 197 and mine was 177 – apparently both extremely high. I can’t help wondering how this compares to the average person being treated for pyrroles? Ie: Are most people being treated high like us or are we super special :) Our doctor congratulated us on staying married for 10 years (we just celebrated our 10th anniversary) – it seems we’ve have some extra challenges that we didn’t know about as well as few others that we did! Looking forward to seeing some results over the next few weeks as we start upping the dose tomorrow… Thanks again, Keith

    1. sue

      Hi Keith, yes indeed you both have very high levels of pyrrole. Great to hear that you have some good support with your doctor. with love, Sue

  18. Donna

    Hi Sue, I have Coeliac Disease and a history of depression and anxiety. How do I get tested for leaky gut syndrome and could you please let me know the price of KPU testing with AAL. Thankyou for all the wonderful information on this site.

    1. sue

      Leaky gut syndrome can be tested with a lab test with the various private labs available to us and also in clinic i like to do the live blood screening for signs of it. Price for testing pyrrole with AAL is $75 plus collection center fee of around $40

        1. sue Post author

          Yes, that is correct that different collection centres charge different amounts, so it is worth ringing around. The main difference in the collection fee can be the distance the sample has to travel with dry ice, so if you live a long way from the Brisbane lab then the fee will be higher than say the Gold Coast or similar, but two places in the same town can still charge differing amounts.

  19. Judy

    My son, my daughter and myself have all obtained a pyroluria diagnosis. We are now taking supplements. How long will it be until we see improvement? What negatives should we be aware of? I have had huge difficulty losing weight and with water retention. Will the supplement program help with both these issues?

    1. sue

      Improvement from supplements can take days, weeks or months depending on what other complications are happening. Some of the negatives can be the detoxification of copper and other minerals, stirring up of some symptoms for a while, or just feeling better than ever.

    2. sue

      Improvement time can vary greatly depending on if treated properly and if there are any other underlying health issues. Personally and in clinic I have found that mostly it is not just a simple treatment, and all is well type of disorder. Negative affects can also be varied but many can have detox type reactions and exacerbation of their symptoms, but usually I find that cutting back on the dose and doing things more slowly and gently works well. The program may well help with water retention and weight issues, but maybe more support is needed too.

  20. Dee Rowell

    just had the results back and am a little confused as there are 2 readings
    HPL (ug/dl.) 4 and
    HPL (ug/dl) Normalised 20.2
    Does tHe normalised reading indicate pyroluria as it is above 15?

    1. sue

      Yes the higher reading indicates that you do have pyrrole disorder. the lower number was the actual reading according to how much water was in the urine. The difference shows me that you must have drunk a lot of water to get the urine sample and so the reading was dilute, once normalised for water content to the ‘standard’ amount of water then second reading is then the true reading.

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  22. marlene ferreira

    I live in Perth and would like to know if there’s a Dr in Perth that I could see about this.as I take medication for depression and wanted to be tested for pyrrole.

    1. kellie

      Yes, I am undergong Pyroluria treatment through Kylie Robshaw at Wellness Perth in Wattle Grove. I also believe there is someone NOR called Kim? Herman?
      Good luck

  23. Vanessa Wood

    Hi Sue,
    Thankyou so much for all your time and effort. I’m wondering if there are any other blood tests or other testing that need to be done apart from the urine test? Also wondering if you are born with the pyrrole disorder or if it can manifest after periods of stress, or pregnancy or illness for example? Many thanx, Vanessa

    1. sue

      The urine test is the only one needed to confirm pyrrole disorder, but some practitioners like to also test for histamine, copper, zinc, iron, magnesium, ceruloplasmin, and mineral ratios. Some people are born with pyrrole, others acquire it from stress and antibiotics, illness, pregnancy etc yes.

  24. Lisa

    My 6yr old son has just been told he has Pyyroles. Finally I have got an answer why he was not fitting into Prep at school. I managed to find a Dr on the Gold Coast who taught me all about Pyyroles. We are just in the very early stages of treatment, but we are hoping that this treatment will make my beautiful son happy and has no anxiety. Im glad that I managed to find this dr because if not he just would have gone down as another ADHD child and then put onto Dex or some other awful drug. But now we can go a natural treatment.

  25. Lisa

    Just to add sue my poor little son pyyrole results were 405. So I would say treatment will be a little longer for him
    Regards Lisa

  26. Juli

    Hi there,

    I’m a Naturopath and actually have Pyrrole Disorder myself. I also have a client who I suspect may have this, however I’m unsure of what to look for in her blood test results.

    I got her serum copper and zinc tested and both results are within the normal ranges, however her zinc is 10.2 (range of 9-18) and her copper is 15.2 (range 10-30).

    I was under the understanding that I could use these readings to determine whether or not she should have the urine Pyrrole Disorder test performed.

    Can you please explain if this is true and how I’d interpret the results for an answer?

    1. sue

      Hi Julie,
      Thank you for posting on my comments page of my website for pyrrole disorder. You cannot ever determine if someone has pyrrole disorder via zinc and copper levels as it is much more complex than this. The urine test is the best way. Copper and zinc level testing is important but not a determining factor in if someone has pyrrole or not, as many people can have low zinc and high copper and not have pyrrole at all, in fact this is extremely common. And it is equally common for those with pyrrole to have very normal blood levels of both copper and zinc and also B6. Often a tell tale sign is in fact they may have high levels of B6. The thing is that those with pyrrole often don’t convert the vitamins and minerals into the active usable form and so therefore are in fact deficient at a cellular level. This is why it can be so tricky and confusing. Some do have low levels of zinc and high copper, but many are like the above (deficient at a cellular level). See, pyrrole disorder is actually a defect of the cytochrome P450 pathway of the liver where it isn’t fully or properly converting vitamins, minerals, hormones or neurotransmitters on the proper pathways very well and there can be some that are worse with this than others and some where only some of these pathways are interfered with and hence why some have hormone trouble, some have digestion issues and some have neurotransmitter imbalances and have issues with mental health and/or sleep problems…or all of the above if really bad. In genomic testing one can see how much the cytochome P450 is faulty, or likely to have that expression switched on. Because there is often this background genetic weakness it explains why sometimes it takes something dramatic or stressful to trigger the faulty gene expression to be ’swithced on’ so to speak. I hope this helps. Keep in touch via the Face Book for more info as it comes through. 

      With love,
      Sue

  27. Sarah

    Hello Sue, great article, thanks for sharing.

    I have a question! Hope that you may be able to shed some light for me:

    If HPL excretion in the urine increases under stress (and oxidative stress), then how does one know if an elevated level of urinary HPL (as measured by lab) is indicative of actual Pyrrole disorder, or simply a reaction to current stress?

    Would love to know thoughts on this. Thanks :)

    Sarah

    1. sue

      Hi Sarah, that’s a really good question. If a person doesn’t have pyrrole disorder their level of pyrrole might be say 1-4 and if stressed may become higher to maybe a 10, but still wouldn’t bring them into having the disorder unless they were already borderline to start with. Often borderline results are either from someone who isn’t that stressed but still has pyrrole disorder, or when the sample wasn’t handled properly or they took supplements before the test. it is those that already have the disorder that stress punches it up higher that is the most significant. I have had cases where people have been extremely stressed and their level still comes back normal as they didn’t have it in the first place. Hope this answers your question…with love, Sue Kira http://www.truevitality.com.au

  28. Joy

    Hi Sue.. this is a fantastic article – thanks for sharing. I am hoping you can help with a supplementing question please. I have been referred by my naturopath (who is currently overseas) for testing for suspected Pyroluria. The lab that runs the test in QLD is closed till Jan and I am suffering the worst symptoms I have ever had, quite scary. I don’t think I can get through the next few weeks without trying something to ease the symptoms. If I start supplementing with B6, Zinc and Evening Primose Oil will that effect the test when I can finally have it beginning Jan? I don’t want to interfere with the testing but I can’t go on like this either. Your advice most sincerely appreciated. Thank you for the work you do.

  29. Lyn

    Hi sue,My son was recently diagnosed with pyrrole disorder with a score of 94. He is currently on kids primer. His doctor has said that that he should also be taking cod liver oil, however, I have been reading that omega 3 is not good for pyrrole patients.are you able to give me any info regarding this. Thank you so much.

    1. sue Post author

      The only place I have a known contact for in the united States is the Bio-Center Lab in Witchita, KS. If anyone knows of others please let me know so I can list them for others that are searching.

  30. Michelle

    Good morning Sue

    Im being tested next Friday and have been asked to cease my supps for the week. I understand the need to cease B6 & zinc but do I have to cease magnesium? Thanks Michelle

    1. sue Post author

      Yes, it is important to stop the zinc and B6 for a while, preferable about two weeks if possible but at an absolute minimum of three days. However all other supplements and medications are safe to continue taking, including magnesium.

  31. Mark

    Hi Sue, I have had a few HTMA’s done over the last 2 yrs to check progress of detoxification protocols for heavy metals. On all of the test results it has shown low normal (bottom of range) copper levels and high normal zinc levels. Is it still possible to have a pyrrole disorder if zinc is high and copper is low on an HTMA? Thanks Mark

  32. Cathy

    Hi Sue, my son has chrones and someone suggested to look up the work of dr Dietrich Klinghart, on researching I came to this page and wondered if he has anything to do with this pyrrole disorder.
    Also from a young age my son has had learning problems and anxiety. He is 23 years of age. Since being diagnosed with chrones he has lost a lot of weight and very tired his blood tests come back with a high CPR inflammation.
    Don’t know what I should be doing or where I should go for help. Thanks cathy

  33. Annie Green

    hello Sue ,
    I have just been diagnosed , borderline.
    On supplements via a doctor , but was just wondering about diet , have some leaky gut problems .
    Do I have to give up all grains and dairy ? I think I have read this somewhere ? I have been gluten free for many years anyway.
    The other thing I have noticed is I have burning tongue syndrome , horrible !! But seems to be really active at the moment , I wonder what it is reacting too ….
    So many questions …very interesting . Many thanks in advance Annie x

  34. Jess

    Hi
    I am lucky enough to have a great GP who tested me for this a couple of years ago and the results came back at 16. I cant remember if there was a preservative in there but i do think the nurse wrapped the jar in foil. If urine deteriorates could results actually be higher? I have so many symptoms on the list still. I did 3 months on a compound as i also had fairly toxic copper levels as well. Doctor just wants to retest for zinc and copper, if zinc is low would i assume pyrroles are still high?
    Thanks
    Jess

    1. sue Post author

      Hi Jess,
      It is possible your level could have been higher than it showed, but it is still high enough to treat, as a true negative would have a score of around 1-3, but your main issue sounds like one of copper toxicity. Zinc testing is not a way to determine if pyrrole is still high as some can have high zinc and still have pyrrole as it isn’t always absorbed. Getting zinc and copper tested is good to see the ratio between the two as this is important. Look up copper toxicity by ARL labs. I also like doing hair mineral analysis for determining ratios of all minerals and metals. All the best Jess
      With love,
      Sue

  35. Michelle

    Hi, my son recently had a test done and level was 45, however it was the first urine of the day. How will this affect his result? Falsely elevate or decrease the result? I also collected at home and took into the collection centre, 5 mins away (in the preservative, wrapped in foil) He has responded to transdermal zinc/b6, copper high, zinc low. I believe he’s starting to detox now also.

    1. sue Post author

      A sample taken first thing in the morning can have a falsely elevated result as the urine is stored and concentrated overnight, but then not being frozen immediately will have dropped the reading, so it is likely to be balanced out to a correct reading. If your son is responding to the treatment then this is great and all the confirmation that is needed. If the detox is too strong the best thing is to slow it down by a lower dose or take more Vit C to support the clearance or also taking St. Mary’s thistle for the liver. All the best, Sue

  36. Amanda

    Hi Sue!
    I’ve recently done the pyrrole test and I’m waiting on results however my GP has said he is thinking it will come back positive. He said in an undermethylator and copper is high and zinc is low etc.
    What I’m wondering is what candida has to do with it? I read a post earlier about it and didn’t really understand the relationship between them?
    Also How do you treat Leaky Gut? My GP mentioned a company in Melbourne who specialises in treating your gut, will I need to do this at the same time as the zinc treatment?
    Thank you!!
    Amanda

    1. sue Post author

      Candida doesn’t necessarily have anything to do with pyrrole but many with pyrrole may have Candida but so do many others without pyrrole. The link that some may speak of will be to do with the fact that one way to get pyrrole other than genetically is via leaky gut syndrome which can be started by Candida overgrowth after an illness, antibiotics, use of alcohol, sugar and many other reasons. I treat leaky gut differently for each person individually depending on their circumstances and other issues associated with the overgrowth. For some it may be as simple as taking them off sugars and using a high strength probiotic and for others it may be using herbs and enzymes to break down and destroy Candida plus the probiotics, and some need a full leaky gut protocol using things to kill off, seal and heal the gut and then implant the good guys again. Diet is always important with any protocol used. Zinc is super important for the immune system so if it is low and particularly if copper is high then yes, zinc will be needed at the same time. I’m sure your practitioner will be able to guide you best with what is needed for you, but if you ever feel that you would like more support or extra guidance or understanding or simply to fill in the gaps if you can’t always get in to see your GP (as many integrative doctors can be often booked up for months in advance) then please feel free to set up a consultation with me which can be done in clinic (Gold Coast) or via skype or phone session at a time to suit us both.
      With love, Sue

  37. Deborah

    Hi Sue,
    My daughter recently had a urine pyrole test and I was wondering if the lab incorrectly collected it. While they did wrap the urine specimen jar in foil, the urine was collected in a larger disposable Tupperware container and then tipped into the specimen jar. The bathroom this was collected in was also very bright flourescent light (but no natural light). I was concerned about the light after reading the pyroles is light sensitive. Does light sensitivty include such flourescent light tubes? Many thanks, Deborah

    1. sue Post author

      Hi Cigdem, although this level is indeed high, it’s by no means the highest on record. I have seen dozens of readings in the hundreds. one was over 700 and he’s a child of 7yrs, so your score is not unusual. there are many reasons. Reasons for high scores are: you may have leaky gut and/or high intestinal microbe levels, adrenal gland issues, be an overmethylator, have high levels of B6 pushing out the pyrroles, heavy metal toxicity such as high copper, or high stress levels…all things that push the level high. In answer to your question, “what is it doing to my body”, well all sorts of damage really, as pyrrole is an extremely toxic substance and causes a lot of oxidation in the blood which can lead to a long list of problems with your health. You definitly need treatment support. with love, Sue

  38. Jessica Ingram

    I was on supplements like the ones you described for 6mths with no improvement and when I was re tested my zinc levels were even lower so I stopped taking them because I couldn’t afford to be taking something that wasnt helping. So now what do I do?

    1. sue Post author

      Hi Jessica, The fact that your zinc level dropped shows me that the zinc was in fact working, but it was being used up in the process of pushing out excess copper, so it was only a matter of time that this would have completed this and then the zinc would have gone up again. When people have trouble with zinc not being absorbed at all, I use the transdermal zinc or try digestive enzymes with the zinc to make it more absorbable. Both work. If you had no change in how you felt after six months then unfortunately you weren’t on the right doses or ingredients or both. If you can afford it, it would be good for you to try again as doing nothing doesn’t get you any better either. If you would like to try again and would like my support, I do offer consultations via Skype or phone sessions if you can’t make it into the clinic. Love to help :)

  39. Shirley sos

    Hi Sue
    I have been in treatment with a Walsh (newly) trained Dr on the GC for a year. I have hidden copper but he didn’t believe pyrrols were a problem, so have not been tested. My serum copper levels after a year on the various minerals have not changed. However, I have felt fantastic! I am an under-methylator so panicky feelings have disappeared due mostly to the folic acid I believe.

    So, I had some minerals increased, magnesium and selenium mainly, in an extra attempt to bring the copper down, but have noticed cramps and arthritis type pain. Wondering if there’s a connection as I felt much better before the increase.

    I have Hashimotos and the antibodies haven’t reduced, but I’ve had to reduce my thyroid extract replacement 4 times in the year! I dont understand how, in both cases I can feel so much better without the core I issues being changed? I still have the same levels of both thyroid antibodies and copper a year down the track, but my thyroid output is obviously increasing. What’s likely to be going on?
    cheers Shirl

    1. sue Post author

      Hi Shirl, sounds like the extra minerals are being used up by the body to correct the thyroids function, but at the same time some of the increased dose may not be being utilised and causing the extra pains etc, so maybe don’t increase the dose of minerals and see how that goes. If you still have high antibodies then the immune system needs support and that may be due to gut/leaky gut issues. The reason that copper may not be going down is that more copper could be being mobilised from stores as it is being pushed out by the zinc and so the copper level is appearing to stay the same. As the stores are being released the copper level will eventually go down. It’s all about ratios, so as long as the zinc is higher than the copper then that’s not so bad anyway. with love, Sue

  40. Georgina Coalter

    HivI go tovSullivan Nic tomorrow for my Pyroluria test (amongst others) my Dr (Greg Emerson) is sending me for. Have been unwell for so long but reg GP’s cannot seem to get to the bottom off. I kept saying its stress causing my blood press to rise but all they want to do is give me a pill which I then react adversley too!!! I have had endless amounts of antibiotics which ended up with a very undesirable & life threatening reaction..
    Fingers crossed that we pin point n treat the underlying prob… Great article & thanx for making it easy to understand Georgina

  41. Deb

    I really found this site and your Q&A so very helpful, Thankyou Sue. I was diagnosed with Pyrole disorder and leaky gut syndrome around 18 mths ago, went on the gaps diet to fix the gut, eat bone broth every day and take Activated B6, Zinc Picolinate, Synergy K2, Magnesium (not oxide), cod liver oil, selenium drops and lugols iodine. I felt good after only a few months and still do. I have two questions please Sue if you don’t mind.

    I reead above that I may be able to go off all the tablets, is this something I can test myself by just weaning off them, (as I already have halved my doses) or do I need to return to have all the relative tests done again ?

    And also I’m guessing my leaky gut has been fixed, how is a person supposed to know when their leaky gut has been repaired? Is it just because I feel better or is it not actually known unless I have another test?

    1. sue Post author

      Hi Deb, Thank you for your positive feedback on the articles Q & A’s. It is definitely best to be re-tested before making any changes to your supplement regime and also not always advisable to go off or wean down unless your practitioner has suggested to do so, usually due to less stress and leaky gut etc. fixed. All of which needs to be re-assessed via testing to be sure, but having said that, the fact that you feel great is a good start. But, just feeling good is not a sign to go off all sups as many that have done this fall back into the old symptoms returning. It is different for every person and needs to be assessed individually. If you would like support with any of the above, I am happy to offer phone or Skype consultations if you are not local to the Gold Coast. All the best,
      with love, Sue

  42. Amy

    This disorder was recently brought to my attention and we had our 18 year old daughter tested. Her doctor did not know about the disorder or how to treat it but did order tests. Her results were 25 for Pyroles, 22.5 for B6, 359 for B12 and 77 for zinc. These were done by Quest Diagnostics in the US so a reputable lab. Would these results indicate a diagnosis? And if so, how would we proceed with supplemental treatment.

    1. sue Post author

      Thank you for your posting on the comments page of my pyrrole disorder article. The test results certainly do indicate that pyrrole disorder is happening. Supplementation is usually prescribed by the practitioner that requests the testing, but if you don’t have that support I am happy to help by way of skype consultation. I’m not sure where you are writing from to say if i could offer a phone or clinic consultation, but if you are in the USA then it would have to be via skype. I really can’t make recommendations via email as it is an individual process to ensure the correct supplements/types and doses are given according to age, size, symptoms etc
      With love,
      Sue Kira ND

  43. Melissa

    Hello, I have pyrrole. My level was 81.2. I have been on the tablets for about 7 months. My energy levels are much much better but I am getting cold sores worse than before I went on them. I seem to have one around each period. I am at wits end now. Before I found out that I had it, I had the shingles whilst I was selling my business. This is when my health and energy severely declined. After months of fatigue and a bit of depression I went to a nutritional doctor. and it was then I found out about pyrrole. I am wondering if the shingles medication may have done something to make my zinc levels worse that would mean I would get more frequent cold sore outbreaks? Looking for answers. I am sick of the amount of tablets I have to take just to keep on a level.
    Kind regards,
    Mel

    1. sue Post author

      Hi Mel,
      I haven’t heard of shingles meds affecting zinc but I do know that shingles and herpes are both similar viruses and both would be using up loads more zinc. maybe all you need to do is to increase your zinc levels for a while and see if that helps, plus some lysine and vit c and avoiding purine rich foods. all the best. with love, Sue

    2. Walker

      I am not a doctor, however one supplement that helps me reduce the recurrence, severity and speed healing off my cold sores is L-lysine… an inexpensive essential amino acid… 1000mg per day without fail. I also mix 2 parts Ascorbic acid powder with 1 part quapity baking soda in a glass then add some water and the reaction makes fresh Sodium Ascorbate… top up the water and drink down or bottle and sip throughout the day. I use 6ml of the C and 3ml of the soda. Hope this helps.

  44. Troy

    I was diagnosed with Pyroluria for the first time back in 2010. Since then I’ve made multiple attempts at treating it with various practitioners. The problem is that I seem to be intolerant of B6 and P5P. Do you have any idea what would cause severe muscle pain from taking B6? Initially I feel really good but then after a few days I start to lose some of the benefits (mood) and muscle pain starts and gradually worsens over time until I discontinue.

    Do you think this is likely to be an b6 activation/metabolism issue?

    1. Dr Sarah Strong, ND

      Look into CBS pathways. Up regulation can be exacerbated by B6 and cause increase ammonia, which can cause muscle pain.

      1. sue Post author

        thank you so much for sharing Dr Sarah. I have found many with pyrrole have methylation issues particularly CBS pathway issues and COMPT issues too. not to mention MTHFR. There is so much to know and understand with these biochemical pathway imbalances. feel free to add in any info you wish to share with us all

    2. Candice

      Hey Troy, did they have you taking magnesium as well? My protocol involves very high doses of magnesium citrate which of course helps with relaxing muscles. It also helps mopping up toxic bile. I am not sure if this would help.
      :) Candice

  45. Dr Sarah Strong, ND

    Thank you for your wonderful information. More info on this needs to be shared. Just wanted to add that often elevated B6 levels can be found with methylation issues so if people have that occurring and they are NOT taking P5P or other B6 supplements, they should look at their methylation pathways. This ties in so closely with the pyrrole disorder issues.

  46. Paul Mirabelle

    First, let me thank you for the effort you clearly put in to respond to people’s questions. It’s a big effort and very generous of you.

    Two questions (one general and one specific):

    1. This appears to be a widespread illness – is there a reason why it is not recognised as such by so many traditional doctors and healthcare professionals?

    2. My 17 year old son has been on medication for depression. He also suffers from anxiety and has been having a lot of counselling. He also appears to suffer from Pyroles Disorder as assessed by a chiropractor using a form of NET and muscle testing. (Should he have this confirmed with a urine test?) He will start on supplements now. Is there any research conducted showing the efficacy of anti-depressants when a patient undergoes treatment for Pryroles? I.e. Are the anti-depressants even effective if the underlying cause of his anxiety/depression are more related to Pyroles Disorder? (We would not change any regime overnight and not without proper medical guidance, but we’re just wondering if the tow courses of treatment are somehow related).

    Many thanks for your kind attention to these emails.

    Paul

    1. sue Post author

      Hi Paul, I can’t give you a reason yet as to why pyrrole isn’t more widely recognised but I’m guessing that maybe they get info on pyrrole sent to them and it could be treated like spam mail and not looked at as they are extremely busy people. Having said that, every year there are more and more doctors that are being trained in integrative therapies and are looking at pyrrole as a very real disorder, all be it part and parcel of other conditions such as genetic problem, leaky gut and the like.

      With regards to your son, it is up to you/him as to if you would like knowledge of the level to work with. it can be handy when re-testing to see if the level is coming down adequately with the treatment. with regards to antidepressant therapy with pyrrole treatment, it is not for me to say really, but the drugs generally will be having an effect on say his serotonin levels but not help with raising his serotonin naturally. you can’t fully do both together. so in other words it is unsafe to concurrently use things like SAMe to increase serotonin at the same time as a drug that is doing that or the combined effect may cause issues, but having said that, with a doc who works with a ND or similar or is happy to monitor things, it can be that he could be weaned off meds and weaned up on natural serotonin products. the goal of course with natural products is to get the body to work for itself and then not need so may products and certainly less side effects, whereas with the drugs they will usually be an ongoing thing and worse still, they usually stop working so well after a while and the dose needs to be increased. all the best. love Sue

  47. Saxon

    Hi; I recently was diagnosed with P; and I’ve taken the medication with me whilst travelling. How important is it to stay within the temperature limits (between 4 degrees and 35 degrees) as I believe it would have been lower than 4 whilst in the bulk luggage under the airplane.
    Thanks

  48. Horty

    I’ve been diagnosed with pyloria and started taking zinc a month ago. My zinc levels have come up but my copper levels are high and I feel terrible! How long does it generally take for copper to get down and for the copper detox and horrible feelings to go?

    1. sue Post author

      The time to clear copper can be variable and dependant on many factors, so that’s hard to answer that question. You shouldn’t feel terrible at all. It means that you need an adjustment on what you are taking, be it the dose, or the additional things like vit C and/or molybdenum to help clear the copper, or it could be that you have a gene defect issue called CBS which needs support. Best for you to contact your practitioner that prescribed your prescription for a review. If you have trouble with this then I can offer you a Skype or phone consultation to help you out. This info and bookings can be found on http://www.truevitality.com.au and check out the clinic tab and drop-down option of prices and bookings. I do hope you feel better soon. with love, sue

  49. Kate

    I couldn’t be more excited or relieved to read this information. I have been looking for a way to diagnose my daughter’s symptoms for much of her life. She is 16 and has nearly all the symptoms listed in your article other than the more severe mental disorders. I look forward to making contact with you, Sue.

  50. Lyn

    I have just had my test results come back from Applied Analytical Labs and my uHPL result is 64.2. I am relieved because at least I now know what is causing or contributing to the depressive periods that have been ongoing for many years.

    I was taking 45mg zinc daily to bring my zinc levels up when it was first thought I might have Pyroluria (since zinc levels were low and copper high). I also started taking 20mg Activated B6 daily. But, in April this year, my B6 levels had skyrocketed to 650 (normal 20-100) and I came off this on my Doc’s advice. And I started to get the depression again.

    With my results now confirming that I DO have pyroluria, what would I do about the B6 component of a protocol to address?

    Thank you for the wonderful info on this site!

    1. sue Post author

      Something to note with regards to the testing of your B6 levels is that if you were taking the B6 at the time of the testing or day before then it will show artificially high levels that are not true to what the level is at the cellular level (only floating thru the blood), so it may well be ok for you to take it. You will know if you have taken too much by symptoms of numbness and/or tingling of fingers, toes or lips, as high levels are neurotoxic but usually reversible in most cases. If you feel that the B6 was helping with your depression but worried about the dose then you could find a sup at only 10mg or take one of your 20mg ones every second or third day. The other alternative is to choose foods rich in B6. I have an article on my website about foods rich in B6 and zinc that you might find helpful. All the best
      With love, sue
      http://www.truevitality.com.au/articles/foods-for-pyrrole-disorder/

  51. Lyn

    Hi Sue
    Thanks for your comments about B6. I have never felt tingling or numbness in fingers, toes or lips. I think you may be right, I was taking supp up to day before that blood test so may have shown artificially high levels. Strangely, even though I took zinc the day before too (45mg), zinc levels showed as in low-mid normal range (at 45mg per day). But the B6 blood level was so high, I was told to come off it.

    I did notice my general feeling of wellbeing gradually dipped after coming off it and depressive symptoms returned. Wonder if another delivery method might help – transdermal perhaps?

    I am going back to see my Doc in 2 weeks to discuss. Meantime, I have started on Activated B6 20mg again for now until I get more advice. As I was experiencing no adverse symptoms when previously on Activated B6, think this is safe for me to do. I am more concerned about how much is getting through to the cellular level. So think I will also increase my intake of rice bran (I am already GF and DF) and pistachios!

    1. sue Post author

      Sounds like your zinc was really low prior then, so this might be a mineral to focus on. I do find that many of my clients absorb and handle both the B6 and zinc transdermal much better, so worth a try if needed, but the capsules are easier as the gel/creams can be sticky, stain the skin (temp) and expensive, so good to see if the capsules work first. the gels and creams are often a good option for those that can’t swallow capsules, like kids or for adults that the capsules make feel sick. having said that, most people experience nausea from the supplements if they don’t have them after substantial protein prior. as for how much B6 is getting thru to the cellular level, this is hard to say, but symptom improvement is a good sign of course. Glad to hear that you are gluten and dairy free as this will certainly help and adding in as many foods rich in B6 and zinc, as well as magnesium and natural folates from greens are important too, as our body knows how to absorb the nutrients from these better in most cases. all the best, love Sue

  52. Susan Cartlidge

    My 32 yr oldson was tested a few years ago for pyrroles with a result of over 800. He went on treatment from a gp who had studied biochemical medicine but found he could not afford the medication prescribed for his levels and had problems taking the large amount of capsules required each morning (15 from memory) . He has auditory processing, differential autisim and an addictive personally and was on cymbalta fora period of time. He had trouble taking both medications This was a few years ago now and he has been on nothing since but of course has experienced lifestyle problems since. My question being has the treatment improved?

    1. sue Post author

      Thank you for your post on my pyrrole page. These day’s I think that a high number score on a pyrrole reading doesn’t always mean someone needs a high dose of the vitamins and minerals required by the body to clear pyrrole. You see the higher the score, the more the body has already been able to clear pyrrole by itself. Yes, sure that will possibly mean he will be deficient in those nutrients needed to clear the pyrrole but I sometimes feel that a low score is more dangerous as the body hasn’t been able to clear the pyrrole. I have had clients with scores in the low 20’s have more difficulties than those with scores in the hundreds. The low scoring ones needed the supplements to help their body clear the pyrrole and when they took their vitamins etc they felt better but the score went up. Conversely the high score clients taking supplements score usually went up a little then quickly down. So I’m not sure about if treatment has improved or not but the way of thinking about a score may have (at least for me anyway). I can totally understand that taking so many pills is hard to do and very expensive, but my suggestion would be that SOME extra nutrients would be better than none. A naturopath might be cheaper to see than a functional doctor if you have access to one. Prescriptions can then be obtained via individual supplements such as zinc Picolinate or Pyridoxy 5 Phosphate (active B6) etc via on-line shops like iherb. His practitioner will be able to help with that. These are heaps cheaper than the compounded formulas. Al the best, love Sue Kira

  53. Ruth Robertson

    Thanks for your wonderful help and information. My daughter was tested after she developed hearing sensitivity, she would cry when I spoke too loudly. She gave up singing and playing music earlier in the year. Dr Kaverjit in Yeppoon, Queensland sent her (and I) for tests and we both tested positive for elevated pyrroles and for undermethylation. Don’t know if this is useful information for anyone in Rockhampton area. I bruise extremely easily, often have dizzy spells and later developed anxiety which fortunately is under control. My daughter is back playing in the band and singing. She is 10 so I’m very pleased her life has returned to normal.

  54. Izzy

    Hi Sue,
    I have been diagnosed few years ago with Graves’ disease, and I m on low maintenance dose now of carbimazole, but still have symptoms of nausea, dizziness, fatigue etc… I have seen a fonctional doctor who has done the pyrrole test and I m positive (20). She gave me a pyrrole primer to take made of 75md of p5p , 100mg of pyridoxine and 50md of zinc that I started and straight away had symptoms of tingling in my all body. Is the dose too intense? It also made my nausea worst.
    Thanks izzy

    1. sue Post author

      Response time can vary from person to person (child or adult) and the variance can depend on what is going on for that person and the various components and symptoms. For example, if the person has leaky gut associated with pyrrole then just taking the B6, zinc etc will not treat the leaky gut and so symptoms will remain. However if the symptoms are related to just the deficiency of the nutrients then resolve can be as quick as a few days to couple of weeks. It is important for each person to make sure that they work with their practitioner to get the best results according to their symptoms and individual needs. all the best, Love Sue

  55. Margaret geraghty

    If pyrole is a true condition how come medical practioners from Yale, Uni of Qld, etc have never diagnosed it or published any papers about it!!!!

    I think it’s a way for alternatives to make money without having any recognised qualifications.

    I recently had a hip replacement after being warn out by a husband suffering with Alzheimer’s. I fell one night at home & was on floor for 4 hours calling out for help.

    Finally ended up in princess Alexandria hospital Brisbane with a hip replacement- certainly was a real doctor,albeit Indian but qualified to Australian standards who performed operation.

    I would like to receive an answer to my query

    I’m

    1. sue Post author

      Hi Margaret, great to hear that you had very good help with your hip injury and replacement. With regards to pyrrole, this is a condition that is still being researched and there is already much done on it, but most info has not yet hit mainstream medical yet. Having said that, there are now hundreds of doctors that are now diagnosing and treating and many more are doing the same each year that passes. It took decades before smoking (initially prescribed by doctors for stress relief) was proven to be deadly and now we know it is, but science often lags behind what many therapist know to be true. I hope that helps. If you are interested, there is much research that you can read about and links on my pages to some as well as books written. All the best for your hip recovery. Love Sue

  56. Lyn

    My base reading was 64 – I’d been off any supplementation for 3 weeks. 6 months later and on substantial zinc and P5P supplements (as well as from food sources) and my results have come back at 86. I’m at a loss to explain this. Any ideas Sue?

    1. sue Post author

      Yes, it is very common, even ‘normal’ to see levels go up before they go down as the B6 and zinc help the body clear any excess pyrroles from the body. hang in there, it will get better. Also, as pyrrole is a marker of oxidation in the body, you may ask your practitioner to look at what is causing the oxidation, such as possible leaky gut, food intolerance or allergies etc. Pyrolurics need to be off foods such as gluten and sometimes also dairy….just a few things to look at. all the best, Love Sue

  57. Lyn

    Thanks Sue. I already am gluten and dairy free and a few other things that have addressed leaky gut and intolerance. I do better on a P5P that has a small amount of B9 in it to help absorption – I slid considerably backwards mood-wise when I changed to a straight P5P, so am wondering about methylation issues, possible MTHFR involvement. Also, I read that treatment will not work while there is adrenal fatigue and can actually worsen things. More complex for me to address I think…

    1. sue Post author

      yes, definitely advise seeking professional help to unfold the story. Great that you have found what works better for you and are already GF/DF etc as that will help. Looking into methylation issues is worth doing. with love, sue

  58. Tanya

    Hi there,
    Just wondering if Pyrrole can affect iron levels? As I have been diagnosed with Pyrrole and my doctors trying to find the reason for my low iron and suspects this could be a cause.

    1. sue Post author

      Pyrrole has a lot to do with iron levels, from two perspectives. one is that often with pyroluria there is high copper which competes with iron and the other is to do with the fact that pyrrole is to do with haemoglobin synthesis. Having said that, not everyone with pyrrole has issues with iron levels, but it is very common.

  59. Michelle

    Hi I would be interested in your thoughts on hhemochromatosis and how this effects the liver and processing if you potentially have pyrrole

    1. sue Post author

      Hi Michelle, it is very likely that the Haemochromatosis is what has elevated your pyrrole level. Haemochromatosis affects the liver by storing toxic amounts of iron in the liver. Pyrrole is a marker (albeit chemical), of oxidation in the body and iron in excess is very oxidative by nature. think of iron metal and how it rusts so easily. love sue

  60. Helen

    Hi Sue, if zinc and B6 are excreted in the urine would urine therapy be a suitable way to reabsorb these minerals back into the body, without the need for supplementation?

  61. Jo

    Thanks for the great information! I have been treated for mild pyrroles for a couple of years by my integrative medical practitioner. Have not seen her for 5 months. While mentioning some recent angry outbursts on a recent visit to my knowledgeable gp she suggested some “stress loading” some more zinc on top of my pyrrole primer. Your thoughts please?

    1. sue Post author

      Hi Jo, That can work well for some people. Can be good to do as your doc suggests and see how that goes, as you can always stop if it makes things worse or no better.

  62. Bety

    Hi Sue, it is so hard to find a doctor here in kansas that is willing to test for this. I had to go to a special clinic and pay cash. I did it and my results came back a little high. I told my doctor and she didn’t even care. Do you think I should see a doctor that specializes in leaky gut syndrome and be tested for that and go from there?

    1. sue Post author

      Thank you for your comment on my pyrrole article. Yes looking at leaky gut is a good place to start, but you can also look up an integrative doctor in your area by going to the walsh institute or the biobalance websites as they have practitioner listings for all over the world, and pretty sure there will be one close for you that at the least you could skype for guidance. All the best, love Sue

  63. michael

    pyrolle showed up when I had a live blood analysis test. Do I need to get a urine test to confirm. Is there a standard dose of b6 zinc etc or should it be customized. This is the caps that compounding chemist sells 200mg zinc picolinate (equals 42mg of elemental zinc), 30mg manganese gluconate, 100mg pyridoxine and 50mg pyridoxyl-5-phosphate

    1. sue Post author

      You cannot detect pyrrole with a live blood analysis, so if there was a suggestion that you might have pyroluria, then you will need the urine test to confirm suspicions. You are then best to have your prescription prescribed to you individually to avoid problems. All the best, love sue xx

  64. Else

    Hi,

    I have adrenal fatigue and severe pyroluria. I have no problem supplementing the zinc picolinate. However, when I try to push the p5p above 25 mg (100 mg) the symptoms of pyroluria intensify and I can the following symptoms:

    -like I cannot cope with stress at all
    -very tired wired feeling
    -foggy brain
    -find it hard to concentrate
    -apathetic but no motivation
    -sleep well
    -eventually a deep depression

    Should I build up slowly over a few weeks or months. Is it detoxing copper, is my detox pathways not working?

    It is driving me crazy. I was so hopeful that this would work.

    Thanks for your help.

    Regards,

    Illse

    1. sue Post author

      Hi Illse,
      Yes I have seen this many times. I myself cannot take more than 25mg or issues arise. In time this will work for you. it is to do with faulty gene expression of the gene that help convert vitamins. You may need to speak with your practitioner about this more to support your gut and detox pathways. I do hope you find good support and relief of your symptoms.
      With love, sue x

  65. Charlotte

    I think my 8 year old daughter may have this but her recent blood test came back with normal zinc, magnesium and B6 levels. Could she still have pyrrole disorder?

    1. sue Post author

      Hi Charlotte, looking at these vitamins/minerals in isolation tells a practitioner very little towards knowing if someone has pyrrole disorder or not. Magnesium is never accurately measured in blood as the kidneys will always regulate the amount of magnesium in the blood at any one time and so will only show low if the body is completely depleted. With Zinc, it needs to be viewed in relation to copper and caeuloplasmin levels and not on it’s own (articles on these can be found on the true vitality pyrrole page). You can in fact have all of these within the so called reference range reading as ‘normal’ but when you look at the ratios and % bound etc, it can be a different story. It seems that the doc who tested for these nutrients may not have had the extra specialised training in this area of understanding. This does not make this doctor a bad one, but not trained in this sector which is highly specialised. An integrative or Bio-balance trained doctor or naturopath trained in this is what you need, all of which can be found in the listings for practitioners in either the Bio-Balance or MINDD.org websites. Testing for pyrrole disorder is done via urine sample, so is non invasive and the best lab for this is AAL (Applied analytical lab). I and many ND’s & MD’s can give a referral sheet for this if you let one of us know your area you live as there are different places to go for pathology collection. So to answer your question, yes your daughter may still have pyrrole disorder. Hope this helps. All the best, Sue x

  66. Olivia

    Hi Sue,
    Thank you so much for the info and comments here. I was diagnosed with Pyrrol disorder 6 mths ago after years of fatigue, depression, leaky gut and stress burnout. Within two weeks of treatment I felt wonderful and didn’t need to sleep every afternoon as I had for 17 years. This continued for about two months then I started to go down hill again.
    I had previously had Helicobacter P infection three times but this time it is C. difficile toxin B. No idea where it came from.
    I’ve just finished antibiotics and am on a lectin Free diet for a while to try and heal the gut.
    It’s a long journey but there is hope. Thanks again. :)

  67. Susan

    Hi Sue
    I am particularly interested in this information. My son has had Hodgkins Lymphoma three times. He is now 21 and has ongoing psychological as well as physical demands. He is desperate to get on with life and I now wonder if he has a build up of metals etc in his body from every treatment you can imagine. His body has been through hell.
    Your thoughts please.
    Sue

    1. sue Post author

      Hi Sue, I think it is best for your son to see an integrative doctor who is trained in this area and most definitely get him tested for heavy metals, mineral imbalances as well as thinks like leaky gut and pyrrole. A list of practitioners can be found on the MINDD.org website. All the best,
      Love sue

  68. peter

    Is it fact or merely theory that HPL binds zinc and B6? I can’t find any proof beyond Dr. Pfeiffer’s theories. I myself tested borderline for pyroluria, but my zinc level is fine (even in relation to copper) and my B6 (actually the preferred test PLP) is fine as well. Towards the high end of the reference range. Also, there is an article by Hugh Riordan MD on pyroluria where he states that his clinic, Bio-Center Labs, found that people with pyroluria did not have depleted zinc or B6. People other than Drs. Pfeiffer and Walsh have actually studied this but they seem relatively unpublicized. Anyhow, it’s all confusing to me.

    1. sue Post author

      Hi Peter, there is still much research to be done on this matter and yes, I too have found that not all with pyroluria have low levels of B6 and zinc, but the higher the pyrrole score the lower the B6/Zinc so maybe the fact that yours is borderline reflects the fact that your B6/zinc are not yet depleted. There is current research going on and much completed too but not yet published that should shed more light on this down the track. Thanks for sharing your thoughts. Another consideration is that what’s in the blood doesn’t always reflect what’s at a cellular level and many are thought to be low at the cellular level because they exhibit deficiency signs even though their blood level shows to be fine.

  69. peter

    Sue I hear you on cellular vs. blood but even the Walsh people use plasma zinc not some of the more controversial tests of zinc status, so I’m not sure why plasma PLP wouldn’t be at least a general indicator of B6 status. What I find troubling based on my own personal experience after getting tested, and consulting with a couple of Walsh practitioners, is that at least with them there was a one-size-fits-all approach based on protocols and recommendation for what most would consider massive doses of supplements without any nuanced individualized approach. For instance, in my case, with a plasma PLP already high in the normal range, and no signs of deficiency other than generic anxiety ones (in other words none of the physical signs, no issue with dream recall, etc.) it seems to me taking 200 mg of B6 and 100 P5P (which was recommended) may not be appropriate.

    1. sue Post author

      I totally agree with you there Peter. I personally was put onto 200mg of B6 and 100mg P5P without having low levels of B6 in my plasma (although zinc was low in relation to copper) and that dose after 3 days gave me anxiety (which i’d never even had before, except for exam and wedding anxiety) so had to stop taking it for a while then found that taking 25mg 3-4 times per week of only P5P seemed to help with my other symptoms (hormonal mainly, plus irritated by labels – weird symptom). But there’s a lot more to this condition than just the B6 and zinc story. I have never liked their one size fits all approach either and have had many clients need to come off their prescription and do things gently according to their presenting symptoms and other test levels. With borderline pyrrole, I would be looking at different factors of blame for symptoms rather than pyrrole as stress alone will push up the levels (anxiety is a big stress on the body of course). I doubt that pyrrole is your issue (based on what you have shared), but can’t give any advise without consultation and I’m not taking on any new clients at present. Maybe seek the guidance of a naturopath experienced with treating anxiety if that’s your main issue. You could look at amino acid testing. All the best, Sue

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