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 grown considerably.
This post, in particular, has attracted both a lot of praise and criticism from its proponents. 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 had to close the comments section due to emotional rants and vitriolic personal attacks by pyroluria promoters, 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 A Google Scholar search shows more results, but many of these are of questionable repute and are not peer-reviewed.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, some of the more common questions among purported sufferers include “is it 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.
Pyroluria goes by a number of names and spellings across the internet and all are used interchangeably.
- Pyroluria (pyrroluria or pyrroleuria)
- Pyrole disease (pyrrole disease)
- Pyrole disorder (pyrrole disorder and pyrolle disorder)
- Kryptopyroluria (kryptopyrroluria)
- Mauve factor
- hemepyrole (hemepyrrole, hemopyrrole, hemopyrole)
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 it?
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.
Aside from those listed above, I’ve highlighted a number of other symptoms I found listed across a variety of websites.
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 these from several different sources to demonstrate how wide and far reaching the “symptoms” are.
- Abdominal pain
- Abnormal body fat distribution
- Amnesia spells
- Anger – explosive
- Anxiety, nervous exhaustion
- Argumentative and/or angry demeanor, mood swings
- Cloudy thinking, poor memory
- Cold hands and feet
- Creaking in joints
- Delayed puberty
- Difficulty remembering dreams
- Drug and alcohol intolerance
- Early greying of hair
- Elevated eosinophils
- Emotionally unstable
- Fluid retention
- Frequent colds, fevers, chills, ear infections as a child
- Hyper-pigmentation of the skin
- Hypersensitivity to loud noises
- Inability to think clearly
- 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
- Mood swings
- Morning nausea
- Motion sickness
- Much higher capability in the evening than mornings
- Nervous exhaustion
- Overwhelmed in stressful situations
- Pale skin, poor tanning, sun burn easily
- Panic attacks
- 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
- Unusual breath and body odour
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).
- Autism, Aspergers, Down syndrome, learning difficulties
- Depression, manic depression, bipolar disorder, schizophrenia
- Alcohol/substance abuse
- Criminal behaviour/violent offences
- Lung cancer
- Tourette’s syndrome
Is it a real disorder?
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.
Hoffer and associates contend that kryptopyrrole is found in the urine of schizophrenics, but other investigators failed to replicate these findings:
- Gendler PL, Duhan, HA, Rapoport H. Hemopyrrole and kryptopyrrole are absent from the urine of schizophrenics and normal persons. Clin Chem. 1978 Feb;24(2):230-3.
- Jacobson SJ, Rapoport H, Ellman GL. The nonoccurrence of hemo- and kryptopyrrole in urine of schizophrenics. Biol Psychiatry. 1975 Feb;10(1):91-3.
- Irvine DG. Hydroxy-hemopyrrolenone, not kryptopyrrole, in the urine of schizophrenics and porphyries. Clin Chem. 1978 Nov;24(11):2069-70.
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 pyroluria 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.”
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.
Despite evidence (or lack thereof) that suggests this condition isn’t even real, there are still a large number of websites offering online testing kits ranging in price from $80 to $150.
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!).
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 opinion, I think this sort of marketing is deceptively biased and leverages on people’s fears and insecurities.
I also noted that many practitioners 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.
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 a few 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 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).