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Pyroluria: Is It a Real Disease or Just a Myth?

Pyroluria: Is It a Real Disease or Just a Myth?

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Pyroluria came onto my radar at the beginning of 2015 and, since I originally published this article (23 Feb 2015), interest in this diagnosis has remained relatively stable (mostly in Australia).

This article, in particular, has attracted both a lot of praise from critical thinking scientists and criticism from its marketers.

Spend a few hours reading through the comments on this article and you’ll see just how emotional and heated the debate has become.

I’ve since closed the comments section due to emotional rants and vitriolic personal attacks, not to mention having to repeat myself over and over again. But anyway….

A search of PubMed and other medical databases turns up very few results on the term “pyroluria” as a clinical entity.

A Google Scholar search shows more results, but many of these are of questionable repute and are not peer-reviewed.

A bog standard Google search reveals a huge number of alternative health sites, many of which happen to sell testing kits and claim to have the cure.

In my own sleuthing, I found the most common search queries to be “is pyroluria real?” “how do I get diagnosed?” and “can it be treated or cured?”

Before you break out your credit card in paralysing fear and start buying expensive online tests and supplements, you need to arm yourself with the facts.

Please take the time and read this article in its entirety, as it provides balance to much of the marketing hype you’ll find on the internet and social media.

Origins

Back in the 1960s, during the heyday of the psychedelic revolution, the originators of the pyroluria hypothesis (Hoffer and colleagues) figured that since the effects of LSD were similar to those with schizophrenia that perhaps they could derive some insights from “trippers.”

They looked for biomarkers in the urine of subjects on LSD, one of which was identified as kyrptopyrrole.

They assumed that since kryptopyrrole is present in the urine of those taking LSD and those with schizophrenia, then it must be a factor in the development of a host of other mental and physical disturbances (mentioned below).

What is pyroluria?

Pyroluria promoters claim that it is a genetically-determined chemical imbalance associated with haemoglobin synthesis (the molecule that carries oxygen in your blood).

People with the condition produce too much kryptopyrrole as a byproduct of haemoglobin production and it is excreted in the urine.

Proponents suggest that this excess kryptopyrrole binds vitamin B6 and zinc, renders them unavailable for their usual biological roles, and then excretes them through the urine as pyrroles.

Accordingly, sufferers may exhibit signs of vitamin B6 and zinc deficiency which could possibly account for symptoms like depression, anxiety, mood swings, nervousness, and a litany of other suggested ills.

Other names for pyroluria

Pyroluria goes by a number of names and spellings across the internet and all are used interchangeably.

  • Pyrole disease (pyrrole disease)
  • Pyrole disorder (pyrrole disorder and pyrolle disorder)
  • Kryptopyrrole
  • Kryptopyroluria (kryptopyrroluria)
  • Mauve factor
  • hemepyrole (hemepyrrole, hemopyrrole, hemopyrole)

Symptoms

Aside from those symptoms listed above, pyroluria promoters cast a massive net to include virtually every ache, pain, and sniffle imaginable.

However, I think it’s important to exercise caution when “diagnosing” yourself given that these symptoms are all quite disparate, vague, ambiguous, and nondescript, and could be attributed to virtually any trivial or serious illness.

I have extracted the following from several different sources to demonstrate how wide and far reaching the “symptoms” are.

  • Abdominal pain
  • Abnormal body fat distribution
  • Acne
  • Allergies
  • Amnesia spells
  • Anger – explosive
  • Anxiety, nervous exhaustion
  • Argumentative and/or angry demeanor, mood swings
  • Cloudy thinking, poor memory
  • Cold hands and feet
  • Constipation
  • Creaking in joints
  • Delayed puberty
  • Delusions
  • Depression
  • Difficulty remembering dreams
  • Dramatic
  • Drug and alcohol intolerance
  • Dyslexia
  • Early greying of hair
  • Eczema
  • Elevated eosinophils
  • Emotionally unstable
  • Fatigue
  • Fluid retention
  • Frequent colds, fevers, chills, ear infections as a child
  • Hallucinations
  • Hyper-pigmentation of the skin
  • Hyperactivity
  • Hypersensitivity to loud noises
  • Hypoglycaemia
  • Inability to think clearly
  • Insomnia
  • Intolerance to alcohol
  • Intolerance to drugs
  • Intolerance to some protein foods
  • Joint pain
  • Knee pain
  • Lack of hair on head, eyebrows, and eyelashes areas
  • Lack of regular menstrual cycle
  • Loss of appetite
  • Low libido
  • Low tolerance to stress
  • Male impotence
  • Migraines
  • Mood swings
  • Morning nausea
  • Motion sickness
  • Much higher capability in the evening than mornings
  • Nervous exhaustion
  • Nervousness
  • Overwhelmed in stressful situations
  • Pale skin, poor tanning, sun burn easily
  • Panic attacks
  • Paranoia
  • Pessimism
  • Poor morning appetite, tendency to skip breakfast
  • Preference for spicy or heavily flavoured foods
  • Prone to stitches when running now or as a child
  • Reading difficulties
  • Seizures Sensitivity to bright light
  • Sensitivity to smells
  • Severe inner tension
  • Significant growth after 16 years of age
  • Skin rashes
  • Social withdrawal
  • Substance abuse
  • Temper tantrums
  • Tendency towards iron deficient anaemia
  • Tingling in the arms and legs
  • Tremors
  • Unusual breath and body odour

Associated conditions

Similar to the host of symptoms listed above, proponents suggest it is associated with numerous other health conditions. But all are unclear about whether or not pyroluria causes these conditions or the other way around (the chicken or the egg conundrum).

  • ADD/ADHD
  • Epilepsy
  • Autism, Aspergers, Down syndrome, learning difficulties
  • Depression, manic depression, bipolar disorder, schizophrenia
  • Allergies
  • Alcohol/substance abuse
  • Criminal behaviour/violent offences
  • Neurosis
  • Lung cancer
  • Tourette’s syndrome

Is pyroluria a real?

I don’t think there’s any question that pyrroles exist.  And yes, pyrroles can be found in the urine.

The symptoms people experience are also likely real, but whether or not these symptoms are a cause and effect result of excess pyrroles in the urine is yet to be proven.

In a critical article by Yale Professor Dr Steven Novella published on ScienceBasedMedicine.org he points out that the theory fails to stand up to scientific scrutiny.

Hoffer and associates contend that kryptopyrrole is found in the urine of schizophrenics, but other investigators failed to replicate these findings:

Referring to the pyroluria hypothesis, Novella adds:

“Studies in the 1970s, however, discredited the hypothesis and it was discarded as a failed hypothesis. The published literature entirely dries up by the mid 1970s. But the originators of the idea did not give up, and continue to promote the idea of pyroluria to this day.”

Based on the available preponderance of evidence, I’m inclined to believe that it is not a real disorder or disease.

Despite its debunking, Hoffer didn’t give up so easily. Instead, he went on the offensive. Novella continues:

“In this case Hoffer decided that he was not the victim of a failed hypothesis, but rather the victim of a conspiracy of mainstream psychiatry that was simply closed to his revolutionary ideas. He founded the journal Orthomolecular Psychiatry, now the Journal of Orthomolecular Medicine – a fringe journal in which he could continue to publish his ideas.”

Critical thinking around pyroluria

I find it concerning that there is so much pro-pyroluria information on the internet, yet the vast majority of alternative practitioners (located mainly in the US and Australia) are basing its validity on the same faulty, debunked evidence from Hoffer and colleagues.

Strong marketing in Australia

I have also noticed a telling anomaly in my analytics for this particular article. Australia has about three times the number of visits compared to the United States, despite the fact that Australia has only 7.5% of the population of the states.

Pyroluria page views australia

Other countries listed below Australia and the United States represent a minuscule number of visits.

Does this mean pyroluria has been eradicated in every other country except for Australia and the US?

To corroborate this data, I did a search on Google Trends to see how the countries compared.

In the following image, you’ll see that interest in the terms “pyrrole disorder” in the United States is virtually non-existent by comparison to Australia. Interest peaked around 2013 and has since dwindled considerably.

Pyroluria Australia United States

To further corroborate these data, I decided to have a look at search volumes for these terms in Google AdWords for both Australia and the United States. In the images below, you will see that, despite pyrrole disorder being invented in the United States, monthly search volumes are quite low (100 to 1K) and the cost to buy this keyword is only $0.04.

pyroluria United States

In the image below you will see the same information for Australia. Notice the significantly higher number of average monthly searches and a suggested bid of over 10 times that of the United States.

pyroluria australia

Taken as a whole, this information suggests that there is clearly a concerted marketing effort to promote and market pyrrole disorder in Australia.

The likelihood of all this coming together by random chance is highly unlikely and would appear to be a deliberate result of human collusion.

Pyroluria testing

Despite evidence (or lack thereof) that suggests this condition isn’t a real disorder, there are still a large number of websites offering online testing kits ranging in price from $80 to $150.

Kryptopyrrole pyroluria urine test

The most common testing for pyroluria involves examining your urine for kryptopyrroles.

While kryptopyrroles are a real thing, whether or not they are the cause of your mood disorder has yet to be determined.

Testing conflicts of interest

In an earlier version of this article, I had a screenshot of a promoter’s website showing a long list of frightening symptoms next to buttons where you could click to buy the testing kit.

Though I didn’t list him by name and was only using the screenshot for educational purposes, he was convinced I was infringing upon his intellectual property.

In fact, I was not in breach of Australian copyright laws, but I thought I’d be a nice guy anyway and oblige him.

I took down the screenshot and replaced it with my own proprietary copyrighted mock-up below to give you an idea of the scare tactics being used to promote pyroluria (I know, I suck at photoshop!).

Pyroluria testing kits

The most concerning thing about this sort of advertising is that the listed symptoms are so absurdly varied and wide-reaching that they’d apply to at least 99.8% of the  population.

In my view, I think this sort of marketing is deceptively biased and leverages on people’s fears and insecurities.

Treatment

I also noted that many pyroluria promoters list symptoms on their websites next to a regimen of dietary supplements purported to cure the condition.

The way many of these sites are laid out, there is sufficient information presented (such as the image above) that can scare and convince someone they are truly afflicted with this condition.

With no other corroborating tests aside from those sold on the websites or available in Bio-Balance approved labs, I would recommend people receive further evaluation and blood tests by their GP or a specialist to ensure that they don’t have a more serious condition such as cancer or other hormonal disturbances.

Vitamin B6 and zinc treatments

The most commonly recommended treatment is a regimen of vitamin B6 and zinc.

Some pyroluria promoters recommend the B6 and zinc in combination with other vitamin and minerals (manganese, magnesium, vitamin B3, and vitamin C), which they claim will enhance the treatment response

Some push the idea that pyroluria is a chronic condition that you are stuck with for the rest of your life. The obvious implication here is that you’ll need to buy their treatments indefinitely.

Treating depression and anxiety

Depression and anxiety can be very complex clinical entities that have a multitude of origins.

I would strongly recommend that you visit your doctor for a proper work-up and, if required, a referral to a psychologist for a more detailed evaluation.

In many cases, depression and anxiety may be caused by unhelpful thinking patterns (i.e., negative thinking) that can become hardwired in your brain.

Drug-free treatment options such as cognitive behavioural therapy (CBT) or dialectical behavioural therapy (DBT) which can help you identify and short-circuit those unhelpful thoughts to develop new, healthier ways of thinking (which then get hard-wired into your brain).

A healthy diet and exercise have also been shown to significantly improve signs of depression and anxiety – no drugs necessary.

Managing expectations

Having personally dealt with depression and anxiety at different stressful times in my life, I absolutely understand the desperation that comes with trying to find a solution.

You feel like there are no options or that you’ve tried everything. So when something like pyroluria comes along, you might think, “yeah, this has GOT to be it.”

The intention of improving can, by itself, help you improve. So when you start taking supplements thinking it will cure pyroluria, you may initially feel better due to your desire to get better.

However, I’ve received numerous emails over the past few years from people who said that, while they initially felt better after taking the vitamin/mineral supplements, once the excitement wore off, they reverted back to the way they were.

So if you do decide to take a supplement for pyroluria, monitor your moods using a mood tracking app (like Daylio or similar). In particular, see how you’re feeling two to three months later and if you are still feeling better.

Closing thoughts

Based on the available evidence, pyroluria appears to be more myth than true medical malady.

  • The available evidence does not support the hypothesis that pyrroles are responsible for all the symptoms and conditions ascribed to pyroluria.
  • Alternative practitioner websites employ terrifyingly sinister descriptions of pyroluria symptoms, but also happen to conveniently offer expensive tests and dietary supplement regimens to “correct” this disorder.
  • The cause of mental conditions like anxiety, depression, and schizophrenia are multifaceted and would likely require more treatment than vitamin and mineral supplements.
  • Modern western medicine clearly does not have all the answers but, in this particular case, the mere belief that pyroluria exists could be more anxiety-provoking and harmful to your well-being than pyroluria itself (if it were real).
  • The symptoms listed across a variety of websites are extremely broad and vague and could apply to virtually anything. My concern is that a person suffering from a real medical condition might decide to forego getting a timely diagnosis and treatment which could save their lives (i.e., early cancer detection).

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David Trindle

Friday 14th of June 2019

I test positive for high pyrolle levels, and I was treated using a combination of Zinc (to rebalance and reduce Cu/Zn ratio to keep it in the ration of 0.7-1.0. I also have been taking EPO (Omega 6 oil) along with some other less important vitamins and minerals. I was on the protocol for 2 months, and a lifetime of internalized stress, anxiety, aggression, mood-volatility simply lifted. I agree, no one knows exactly the cause and effect, and how pyrroles are involved, though some theories have been proposed and refined. The important thing is the my Cu/Zn ration was 1.4 and I was exhibiting some very aggressive behaviors, panic attacks, mood swings. And the Pyroluria protocol fixed that problem. I do still take a small dose of anti-anxiety medication. This disease is real for me (and check with the 10000 members of the Pyroluria Group on Facebook, many of whom have had the same experience as I did, and were relieved by the Zinc/B6/EPO/... protocol (which has been taught to roughly 600 Medical Doctors in US and Australia. who are actively treating the disease.

You cynically ask why pyroluria seems to locate itself in the US and Australia. How can that make sense? I will tell you. US and Australia (particularly the latter) have the largest populations of Scots Irish descendants of the Borderers and other out-law groups that have been known as extraordinarily fierce and violent historically. Australia was formed as a penal colony, mostly Scots Irish criminals. I suspect the Scots Irish (of which I am one) have genetic adaptations that improved their survival during scores of generations of guerrilla warfare, and oppression by both the Scots and the English.

T Allen

Tuesday 26th of July 2016

Dear Dr Bill- I learned about this "disorder" from someone on a Lyme Disease FB page post. Thank you for taking the time to answer these questions from people who are desperate to find a cure for their "disease". As is obvious there are a lot of very sick people who are not being helped by the traditional medical community and "medical care by FB" seems to be the only way to get help unless you are a millionaire. These symptoms mimic Lyme, PTSD, Mold and now it appears that there are hundreds of other tick-borne diseases causing these issues as well. Thank you for being the voice of reason as we search for answers, knowing who to trust is critical in the process!

Carolyn

Monday 25th of July 2016

YES ITS REAL! Thank god I found a DR who tested me for this! After months and months and months of flues and colds reoccuring within 3 weeks where I would be so unwell unable to think clearly and function normally and feeling so unwell was becoming the normal-I was so lethargic- it was awlful, debilitating- I spoke to Drs over and over again with normal blood tests saying I'm good- "I just get the flue" I finally found a Dr who had helped others get diagnosed with uncommen conditions- I drove just over 5 hours to see this Dr that's how desperate I was to find an answer- result: I NOW KNOW WHAT IT FEELS LIKE TO FEEL WELL!!!!! To feel like you have a flue for more days than feeling well- I cannot tell you how thankful I am to have my life back. I no longer wake up to have a nap an hour or so later because I feel so tired- after 3 or 4 coffees that made NO difference- Pyrrole exists! I take prescribed (compounded) amounts of Zinc and B6 plus other natural medication to assist with digestion and vitamin/mineral absorption- I can identify several close relatives have other symptoms but all with Anxiety related symptoms- one including chronic fatigue, others very heavy drinkers to calm the anxiety- my savour was being on anti depressants for years and years otherwise I dont know where I would be now- My Dr actually commented that was in my favour in a huge way as she had said she didnt know how I would be coping.. No wonder people with Pyrrole are on anti depressants- its part of the symptoms due to lack of zinc, B6 ect ect - there is so much more to the effects of being deficient in these 2 minerals you just have to read more on pyrrole- I have found out so much information and as I said before - I have my life back. I feel so sorry for people who are not being diagnosed - Drs who are not aware of this condition- disorder, my new Dr had undertaken further studies in natural medicine and chemical toxity. Its ridiculous that if you cant be prescribed a tablet completely invented / made up by a laboratory as for heart disease, blood pressure ect then therefore it doesnt exist- Pyrrole diagnosed people need higher doses of ZInc and B6 - its that simple and within a couple of weeks- I got my life back and I was a high pyrrole person. It has given me a shake up with how important vitamins and minerals are to us all. I am over the cynics- Pyrrole EXISTS! in the words of a great jockey (and female by the way..... ) they can all get stuffed (in my case hoever, I mean cynics! ) lol

Karen

Wednesday 20th of July 2016

Dear Dr Bill, Initially I was highly indignant at this article but reading a lot of the responses I was heartened to find cases similar to my daughters. I could go on for pages about how hard her young life was but at 14, after years of struggle with everything, we stumbled across an article about this condition and whilst I was quite cynical about it at first I had nothing to lose, certainly no one had been able explain her inability to cope with life up to that point. I let the proof be in the pudding and to say her life has changed for the better is an understatement. She is now 17 and a half and the changes in her life have been quite frankly miraculous. As man of science I know it is your job to question things, thankfully as "just" a mother I only have to see her successfully managing her life as a high achieving year 11 with a part time job, friends & driving license to know it worked for us. I urge others to give it a try.

PS She was off the anti depressants ( which never worked) given to her by her paediatrician within months and has never looked back.

Alex

Wednesday 20th of July 2016

Many people leaving comments, including myself, are frustrated with your article yet you do not seem to understand why. For starters, you imply that proponents of this syndrome are simply out to make money. The fact that someone is trying to capitalize on Pyrroles (or any other condition) has nothing to do with whether or not it is a real syndrome. There is no correlation between the two which leads me to thinking you might be biased on the subject. If you are rattled by websites that use scare tactics in order to sell supplements do an article about that. Contrary to what you stated, the test is inexpensive compared to other tests and can be performed by a reputable lab. The likely treatment a professional would prescribe is Zinc and B6. Last time I checked they were very cheap. It would have been a better article had you said there is not enough evidence. Why is there not research being done? Well most likely because there is no money to be made in this condition.

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