Be aware that Pyroluria has many names – Pyrrole Disorder, Pyrroles, Krryptopyroluria, Kryptopyrole and Mauve Disorder.
Please read the writings titled “Why supplement with Zinc” and “Why supplement with B6” before learning about Pyroluria, because many of the symptoms of pyrolyuria are a function of these deficiencies; People with Pyroluria have difficulties absorbing these 2 vital nutrients.
Pyroluria is a genetically inherited, correctable condition of abnormal synthesis and metabolism of the oxygen-carrying molecule called ‘Haemoglobin’. One of the by-products of haemoglobin is a metabolite called Hydroxyhaemopyrolin-2-one (HPL) abbreviated as ‘Pyrrole’. People with Pyroluria have an excess of these pyrroles, which are neurotoxins, and bind to B6 and zinc. Because the B6 and zinc are bound to the pyroles, when the pyroles get excreted in the urine, far less B6 and zinc are available for absorption creating deficiencies.
Pyroluria is most often acquired through environmental and emotional stress, and has been associated with Leaky Gut (see my writing titled ‘Leaky Gut’). Often the stress of having a baby can leave women with this condition. If a woman gets morning sickness there is a good chance she is already pyroluric.
Here are just a few reasons we need these key nutrients… Zinc and B6 are essential for the production of neurotransmitters such as serotonin (our happy hormone), melatonin (our sleep hormone), GABA (our calming hormone), and acetyl choline (our most abundant neurotransmitter). Zinc and B6 are also involved in production of our hormones such as cortisol (our anti-stress hormone) and the conversion of oils in the body (involving fat metabolism, liver and gall bladder issues, and impact weight control).
Pyroluria creates poor tolerance of physical and emotional stress, so these people are often teary and exhausted, they have poor anger control, emotional mood swings, anxiety, frequent infection, fatigue, reduced ability to tan, poor dream recall, poor short-term memory, irregular periods, allergies, sugar cravings, sugar intolerance, midline fat distribution, sensitivity to light and sound or odour, get a stitch upon running and they often experience tactile sensitivities. The Madness off King George the 3rd is attributed to Pyroluria!
Pyroluria is frequently identified in people with behavior disorders: autism (50%), ADHD (30%), Asperger’s, learning difficulties, poor mental function, anxiety, depression, bipolar disorders, aggressive behavior, schizophrenia, alcoholism and other mental and emotional conditions. 70% of people with Down’s Syndrome have pyroluria.
Approximately 10% of the Australian population has the disorder and women are more affected than men.
Physical characteristics associated with Pyroluria:
Acne, eczema, or herpes
Coarse or thinning eyebrows
Hair loss on their head
Cold hands and feet
White spots on fingernails (zinc deficiency)
Poor tooth enamel
Sweet fruity smelling breath
Morning sickness when pregnant
Reduced appetite / nausea at breakfast
The haemoglobin pathway is complicated; here are some of the ways it is affected.
Here are some of the less commonly known signs and symptoms:
- People with Pyroluria Create an excess of hydrogen peroxide, which attacks the joints causing chronic inflammation and multiple joint pain. The Hydrogen Peroxide damages to the retina of the eye causing a weakness in the ability to dilate the pupil, so reading in poor light becomes more difficult. The peripheral vision is permanently reduced so people with Pyroluria often bump into tables and chairs etc.
- People with Pyroluria Have great difficulty getting rid of mercury; so experience the symptoms of toxicity. (See my writings on Heavy Metal Toxicity).
- People with Pyroluria have difficulty excreting ammonia, which is the poisonous by-product of protein digestion, giving people with Pyroluria the sweet breath and aversion to protein.
- People with Pyroluria Have an excess of Porphobilogen (PBG), which is an excitotoxin, (like MSG) implicated in the all the behavioral disorders associated with Pyroluria.
- People with Pyroluria often have chronic Anaemia.
- People with Pyroluria Have reduced immunity, because the Myeloperoxidase enzyme loses its potency. This is the enzyme in neutrophils (white blood cells), which phagocytose (digest) microbes.
- A thyroid enzyme called Thyroperoxidase is haemoglobin-dependent and so people with Pyroluria often have associated Thyroid problems.
- People with Pyroluria have adverse reaction to rancid oils – people with Pyroluria must stay away from all rancid oils – keep all oils in dark cool places, use them when they are fresh and store in the fridge if you aren’t sure.
- Pyroluria often causes gluten and casein (the protein in dairy) sensitivity due to the problems with cytochrome P450 enzyme, which is involved in methylation and detoxification. Often people with Pyroluria are chemically sensitive. (See my writings about Methylation).
- People with Pyroluria are often sensitive to fluorescent lighting, getting brain fog at the supermarket. (Unfortunately most schools use fluorescent lighting).
If you mill your own ancient wheat, like Kamut and Spelt, many people with Pyroluria can manage these breads. Their sensitivity to gluten is sometimes a sensitivity to the rancid wheat germ oil in flour, that has been sitting for too long.
The casein intolerance is caused by poor strength of Hydrochloric acid in the stomach, which needs Zinc and B6 to create the acid. The casein intolerance should resolve as the body’s need for Zinc and B6 is met.
High kryptopyrrole can be detected in the urine in laboratory tests, which can be ordered by your doctor, though many medical doctors are only now becoming familiar with the disorder. To have the test you must not have supplemented with B6 or zinc for at least 3 weeks. In the Lab test, 10-20mcg/dL of KPU (Pyrroles) indicates borderline Pyroluria. Above 20mcg is diagnostic. Some people have levels in the hundreds, but levels above 60mcg don’t correlate with worse symptoms. In Australia the test costs approximately $150.
The good news is that if you have been diagnosed with this disorder, you may begin to feel much better even after a few days to a week after taking supplements. This disorder is reversible and is associated with adrenal fatigue, so the causes of the fatigue also need to be resolved. A year of supplementation for Pyrroles as well as recovering the adrenals gives us an approximate time frame to work with. However everybody is different. Those with severe Adrenal exhaustion need first to resolve that problem. Often Pyroluria disappears as a result.
Nutrition for people with Pyroluria
Everybody is different, so if you have Pyroluria you will need a personalized treatment plan. As your health improves your need for supplements will also reduce. The danger of having a compounded pyrrole tablet made specially for you is that the pharmacist might make a year’s worth of tablets, during which time your need for certain components will change. These supplements, although combined in one tablet making it easier to take, often have fillers and preservatives added and don’t allow for your changing needs as you recover.
For effective management of your condition please get your supplements reassessed every 3 months, or whenever you are stressed; we need more B6 and zinc at these times.
Dr Alice will assess you for the need of:
* B6 (The active form is called Pyridoxal-5-Phoshpate (P5P), this is what Alice will prescribe, normal B6 simply will not work)
* Omega 6 in the form of Evening Primrose oil (many people with Pyroluria can’t manage fish oils, and definately not the cheaper chemist bought ones that are usually rancid and have higher levels of mercury)
* Biotin (a B vitamin normally formed in the gut)
* Molybdenum (an essential mineral involved in chelating heavy metals and toxic chemicals).
* Vitamin C, Rhodiola and Cordycepts mushrooms (to address adrenal exhaustion).
* Magnesium (taking B6 in large amounts can deplete magnesium. Adequate magnesium will help you by have a calming effect, helping you sleep better, resolve constipation and reduce irritability).
* Manganese (Taking high doses of zinc can deplete manganese which is vital for neurotransmission and the metabolism of proteins).
*B2 may be needed to support the activation of B6 and support the Thyroid.
*Lutin found in leafy greens can be supplemented to reduce the effects of hydrogen peroxidide in the eyes and joints
Dr Alice will also assess you for high levels of Copper in your blood. Copper is often high in the blood and low in the cell as it has difficulty crossing the cell membrane in people with Pyroluria. Molybdenum or Selenium will draw excess copper out of the blood and Manganese will assist copper gaining access into the cell.
All that said, just the bare minimum, B6 (P5P) and Zinc at the correct dose can make a huge difference. The better you meet the challenges of Pyroluria, the faster it will resolve helping you to feel like a normal person.