The names of the diagnosis of Pyrrole Disorder have changed many times over the years!
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Starting with the initial Mauve Disorder, named after the colour the urine changed to when a testing reagent was added to it, in people with mental health and neurological conditions. Then came Malvaria, Kryptopyrrole and Haemopyrrole, Pyrrole Disorder (commonly used in Aus and UK) or Pyroluria (used in the USA), or other names!

All the names tend to suggest the relationship of the alleged pyrrole compound (ie, HPL) being found in the urine. The original doctors and scientists investigating this condition hypothesised that the HPL compound would bind to zinc and vitamin B6 and carry them out of the body to cause the chronic deficiencies of these nutrients, which in turn cause the Pyrrole Disorder symptoms. It was just a theory, and there was no evidence for this belief.

There are a number of issues I have with the concept of HPL binding to zinc and vitamin B6 in this condition, especially being in clinical practice and seeing thousands of people with this condition, including:

1. A study was conducted and shown to prove that vitamin B6 cannot actually bind to the HPL compound (Lambert, Semmler, Beer & Voisey, 2023), so that common belief is bust
2. I’ve never seen just deficiencies of zinc and B6 in those with the condition, but usually at least 6 deficiencies and sometimes 12… The more deficiencies that someone has, the more deficiency symptoms and the worse or more complex their health issues will be
3. These additional deficiencies are nothing to do with the HPL compound in the urine, but because of STRESS/trauma etc which causes increased use of these nutrients, being needed to make the stress hormones of cortisol and adrenaline, and more
4. The additional deficiencies in those with this condition are also due to reduced stomach function and digestion of foods, which causes reduced absorption of nutrients, leading to these nutrient deficiencies
5. The HPL test is very inaccurate due to being very sensitive to light, heat and time, from when the urine sample is taken to when it’s tested. All the while, the HPL level decreases and can give an inaccurate or even a negative result
6. The HPL result does not relate to severity of symptoms at all, so again it shouldn’t be used as a test for screening or even for checking on progress of the treatment plan.

Many published studies have shown that the urine test is inaccurate, inconsistent, and not related to the alleged mental health or neurological conditions that it is linked to, including of depression, anxiety, bipolar, schizophrenia and more (Warren, Sarris, Mulder, & Rucklidge, 2021). As such, these scientific studies recommend that the HPL urine test should not be used as a screening, diagnostic or treatment tool. And I agree, and why I haven’t used or recommended the HPL urine test for many years. I use a screening questionnaire as the first step, then blood tests to confirm my investigations, and further functional testing may be required too.

I believe the concept of the HPL in the urine being the cause of the nutrient deficiencies of Pyrrole Disorder is completely wrong! At best it might be a scapegoat, or perhaps because the original scientists investigating the condition were not actually clinicians or practitioners, and certainly hot holistic practitioners who use a root-cause focused approach to treating Pyrrole Disorder.

The many nutrient deficiencies of Pyrrole Disorder can be explained by the following 3 ways:

1. Stress and trauma, especially of chronic or long-term stress, causes many nutrient deficiencies due to the excess production of the stress hormones of cortisol and adrenaline, which can in turn strain the adrenal glands and cause reduced production of the stress hormones. The adrenal glands need all the B-vitamins, zinc, magnesium and more – all deficient in Pyrrole Disorder!

2. Stress and trauma affect stomach function and digestion, causing reduced digestion, which in turn causes reduced absorption of nutrients, then nutrient deficiencies and their deficiency symptoms. This causes deficiencies of all the B-vitamins, zinc, magnesium, iron, protein, and more – all are very commonly deficient in Pyrrole Disorder!

3. Many people with Pyrrole Disorder have high level of heavy metals, which can cause neuro-inflammation (of the brain and nervous system), oxidative damage, and the heavy metals can push out of the body many nutritional minerals and vitamins the brain and body needs, to cause many deficiencies including magnesium, zinc, copper, iron, calcium and more – again all very common deficiencies in Pyrrole Disorder.
Hence I believe the deficiencies of Pyrrole Disorder are NOTHING to do with the HPL compound in the urine, and also why the condition shouldn’t even be called as Pyrrole Disorder, Pyroluria, or its other names!

It’s much more important to find and treat all the root causes of the “Pyrrole Disorder” in each person, and not just use some standard protocol which is based on incorrect beliefs or outdated science. This is my approach as I specialise in mental health issues and Pyrrole Disorder – to find and treat all the root causes of all symptoms and conditions in each person. This is a real holistic approach which will give quick symptom relief, as well as the long-term resolution of symptoms, and even the long-term prevention so the issues don’t come back.

References:
Lambert, B., Semmler, A., Beer, C., & Voisey, J. (2023). Pyrroles as a Potential Biomarker for Oxidative Stress Disorders. Integrated Journal of Molecular Sciences, 24 (3), 2712. DOI: 10.3390/ijms24032712

Warren, B., Sarris, J., Mulder, R.T, Rucklidge, J.J. (2021). Pyroluria: Fact or Fiction? Journal of alternative and complementary medicine (New York, N.Y.), 27(5), 407–415. DOI: 10.1089/acm.2020.0151

I often get questioned by patients or people with Pyrrole Disorder (Pyroluria) about whether they should reduce intake of copper-rich foods, to reduce their copper levels. Or even how to reduce copper levels. My answer is usually “it depends…”.

The same answer would be given if someone asked “should I eat more zinc-rich foods?” or “how can I increase my zinc levels?”. It depends…

This is because there is a huge assumption from people with Pyrrole Disorder, or even from most practitioners who follow the “official” (and outdated or wrong) guidelines, including and especially the Walsh Institute trained practitioners, that Pyrrole Disorder (Pyroluria) is just an issue of low zinc and high copper levels. Because it’s not!

If you get diagnosed with Pyrrole Disorder from the urine test, which I no longer recommend as it’s an outdated and inaccurate test, you MUST get a confirmation of this diagnosis from the serum zinc, serum copper and caeruloplasmin tests too. Actually, you also need other tests as well, to find other nutrient deficiencies and factors which are common in this condition. More on this another time.

Sadly, people and practitioners just assume that the urine test alone diagnoses this condition and indicates that someone has high copper and low zinc and therefore needs to supplement with zinc and vitamin B6 (the official guidelines), and avoid copper-rich foods, when this is not always accurate or enough.

Having Pyrrole Disorder doesn’t automatically mean that your zinc is low and copper is high! You can have LOW serum copper but high UNBOUND copper due to low caeruloplasmin. In this case you actually have LOW copper, but low production of the copper transport protein which is the caeruloplasmin, for a number of possible reasons. In this case, do you need to reduce or restrict your copper-rich foods? Absolutely NOT! Reducing your copper in this example will make your health WORSE!

Similar with zinc. Some people with this condition can have optimal zinc levels, but copper can either be too high or too low, together usually with low caeruloplasmin. It’s the imbalance between zinc and copper which is important to know from testing, and together with the caeruloplasmin level with respect to the copper level, which is driving most of the symptoms of Pyrrole Disorder.

Many people with this condition have low zinc and low copper levels, with low caeruloplasmin. This causes the high unbound copper % level, which is an indicator of high oxidative damage in the body, which will be causing many symptoms. Further investigation and testing is needed for people with this presentation of Pyrrole Disorder.

What YOU need in YOUR treatment plan depends on YOUR unique situation, causes, symptom presentation, and test results. Having a standard protocol (such as the Walsh Institute guidelines) is not going to help you and your unique situation. A one-size-fits-all approach never works! You need a personalised plan from a detailed investigation of your health.

1. This is what I do, after specialising in Pyrrole Disorder for many years.