Pyroluria, also known as Pyrrole disorder is a little known genetic condition that involves an abnormality in haemoglobin synthesis (the protein that holds iron in your red blood cells). People with Pyroluria produce excess amounts of a byproduct of haemoglobin synthesis which is known as pyrrole (or hydroxyhemopyrrolin-2-one (OHHPL)). Normally this is an unimportant waste product but when the levels of pyrroles are elevated then they bind excessively to zinc and vitamin B6 which renders them unable reach their targets in the body and unavailable to be used. The omega-6 fatty acid GLA is also depleted.
Pyroluria is diagnosed by testing for excessive amounts of pyrroles in the urine. Although this disorder is relatively unknown and likely under diagnosed, it is estimated to affect 10 – 11% of the general populations with significantly higher rates in those with mental health diagnoses. Some studies have shown rates to be as high as 70% for individuals with diagnoses of schizophrenia and depression with significantly higher rates also seen in individuals with diagnoses of bipolar disorder, autism and ADHD.
Pyroluria is associated with a large number of mental health disorders including depression, anxiety disorders, tourette’s, autism, bipolar disorder, ADHD and schizophrenia as well as other issues such as eczema, immune problems, chronic acne, psoriasis and substance abuse. People with pyroluria also tend to be fairly intolerant to stress and research has shown that stress increased the levels of pyrroles in the blood which worsens symptoms.
Poor diet and digestive health has also been shown to increase pyrrole levels and leaky gut syndrome is common among people with this disorder.
The signs and symptoms that may be associated with pyroluria are too numerous to mention in this post but a detailed explanation and list of symptoms can be found here. There is also a good chapter on this disorder in the book Primal Body, Primal Mind by Nora Gedgaudas. Certainly anyone experiencing mood swings, anger outbursts, anxiety or panic, depression, poor dream recall, frequent colds or infections, reading difficulties (such as dyslexia), fatigue, white spots on fingernails, unusual smelling breath, eczema, sensitivity to light and difficulty coping with stress should get themselves tested for pyroluria.
Treatment for pyroluria is lifelong supplementation with zinc, vitamin B6 and sometimes GLA (an omega-6 fatty acid). In this populations diets high in omega-3 fatty acids are less well tolerated. Useful treatment also includes improving gut health and diet and reducing stress levels or learning better stress management strategies. Depending on the degree of pyroluria, improvements may be seen fairly quickly or may be more gradual over time in more severe cases.
As pyroluria is often undetected or misdiagnosed by the medical profession and is clearly a possible factor in so many mental health disorders, it would be a good idea to get tested before embarking on any change in diet. If you have been undergoing treatment for any of the issues mentioned above and have not seen improvements then this simple urine test could possibly provide some answers. If your regular GP does not acknowledge this as a potential issue then look for an integrative or holistic GP to do the testing and ongoing treatment for you.
Obviously all mental health problems will not be a result of this disorder but ruling it out can be just as informative when looking into ways to improve your wellbeing.
If you have a diagnosis of pyroluria and would like to share your story I would love to read about it in the comments below.