Pyrrole Disorder, Pyroluria

Pyroluria ( 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 center. Thank you.

Pyrrole disorder, also known as pyroluria, kryptopyroluria, kryptopyrole or Mauve disorder is a biochemical imbalance involving an abnormality in hemoglobin 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 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 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 $160 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

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 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’ 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…

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 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’ not the comments below and let me know here you live, so that I can direct you to the correct collection center. Thank you.

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