Do You Know What Pyrrole Disorder Is? No! Keep Reading!
I hear you asking what on earth is Pyrrole Disorder. That is exactly what I thought when my daughter was first diagnosed and as it is not known much in the general medical world your GP might ask the same. It is now a real part of family life as all four of us have been diagnosed with P and also Undermethylator’s. It is sometimes referred to as the Mauve Factor or Pyrrole disorder.
“Many great people in history have shown the signs of Pyrrole disorder. Among them are the poet Emily Dickinson and the scientific philosopher and discoverer Charles Darwin. Their life stories reflect many of the character traits associated with this condition. Pyroluria—the reason for adult withdrawal and seclusion? Reflections on the meaning of life and death were the two major influences in the life works of both Emily Dickinson and Charles Darwin.”– Dr. Carl C. Pfeiffer
What is Pyrrole disorder?
“Pyroluria,” “Pyrroluria,” “Pyrolleuria,” “Pyrrole Disorder,” “Elevated Kryptopyrrole,” “B6 Deficiency” are all in use to describe variants of the same basic condition: Most commonly called Pyroluria, the root cause is the production of too much “kryptopyrrole” (KP) or “hemepyrrole” (HP) in the blood.
Pyroluria is a epigenetic chemical imbalance involving an abnormality in hemoglobin synthesis. Hemoglobin is the protein that holds iron in the red blood cell. Individuals with this disorder produce too much of a byproduct of hemoglobin synthesis called “kryptopyrrole” (KP) or “hemepyrrole.” Kryptopyrrole has no known function in the body and is excreted in urine.
Signs, Symptoms And Conditions Associated with Pyroluria
Characteristics commonly seen are: white spots on fingernails, unusual fat distribution (larger mid section), increased incidence of stretch marks, pale skin that burns easily, sweet, fruity breath and body odour, overcrowded teeth, coarse eyebrows, poor appearance of tooth enamel, creaking knees, cold hands and feet, stunting of growth.
Anxiety, nervousness, pronounced mood swings, low stress tolerance, depression, panic attacks, motion sickness, general loss of appetite, social withdrawal, memory loss, episodic anger/temper outbursts, severe inner tension, insomnia, seizures, tremors, migraines, acne, irregular menstruation, impotence in males, disordered perception, eosinophilia, dyslexia, hallucinations, delusions, paranoia, loss of reality, increased sensitivity/intolerance to sound, light, smell and touch, frequent unexplained nausea, joint pain – specifically knee/leg pain, restless leg syndrome, fatigue, poor dream recall, stitch in side, digestive disturbances (abdominal tenderness, constipation), Irritable bowel syndrome, gluten intolerance, glucose intolerance/hypoglycaemia, anaemia, food/environmental allergies, delayed onset of puberty, suicidal tendencies, sensitivity to medications, pessimism, hyperactivity, emotional lability.
Schizophrenia, Bipolar disorder, ADHD, Alcoholism, Autism, Dissociative Identity Disorder, Epilepsy, Aspergers, Obsessive Compulsive Disorder, Multiple Sclerosis, Parkinson’s disease, Lyme disease.
There are varying degrees of Pyrrole disorder; expression of this condition can be mild to severe or borderline, depending on genotypes, level of toxic environmental exposure, and complicated by the presence of other genetic defects, such as Histadelia, Histapenia and Hypercupremia. Signs and symptoms will vary between individuals.
Diagnosis of Pyrrole disorder
Upon consultation with a qualified practitioner, a thorough investigation into patient history along with a simple urine test for HPL, will form the basis for diagnosis of Pyrrole disorder. Differential diagnosis is vitally important as many of the symptoms of Pyrrole disorder present similarly to those of methylation disorders – Histadelia (high histamine/undermethylation) and Histapenia (low histamine/overmethylation).
We are Undermethylating Pyrroles and once we started to take the supplements tailored for Pyrrole Undermethylation we saw a reduction in the defiance that Erykah had towards school work. The difference in our family from treating the Pyrrole disorder is huge. We are a much calmer family, with much less anxiety. I didn’t realise how bad I felt until I started to take the zinc and B6, I used to feel all knotted up inside full of anxiety and used to get stressed out over the smallest thing. My memory was getting worse and I suffered from brain fog most of the time.
I am glad to say this has reversed I can remember things much more clearly in my short term memory. I feel much calmer and a lot more at ease with daily tasks. If I feel like that I can only imagine how my kids are feeling (they are too young to be able to communicate how they are now feeling) and you can see it in their behaviour. There are less tantrums, no more lashing out at everyone and everything. In general we are a happier family and that is worth every cent that is costs in compounded supplements to treat. We are spending approximately $400 a month to treat 4 people and this is for life.
Treatment of Pyrrole disorder
The first line of treatment is to supplement with higher than the recommended daily average requirement of Zinc and Vitamin B6 to compensate for the deficits caused by the condition.
These essential nutrients will reduce the excretion of HPL, improving all neurobehavioral symptoms associated with these deficits. The favoured forms of these nutrients are Zinc picolinate and Pyridoxal-5-phosphate (P5P).
Suggested Supplements – You must seek guidance from a qualified practitioner re individual doses as everyone has different requirements
Vitamin B6 – 200mg Pyridoxine hydrochloride and 50mg P5P. Pyridoxine and P5P are water soluble vitamins that are not stored in the body and easily depleted, particularly if you drink tea/coffee or consume anything with a diuretic effect.
Zinc picolinate – anywhere from approximately 50 – 100mg for severe adult cases, I was taking 275mg at one stage so I was a severe case and Erykah is taking 150mg a day , taken in the morning after food. You must take them after food as the high dose of Zinc makes you nauseous and if you get this feeling you can eliminate by eating more. Zinc dosages are to be built up slowly in accordance with blood labs results for Zinc/Copper/Ceruloplasmin levels, HPL results, and general vitality/adaptive ability to cope with chelation. Prolonged low zinc levels will compromise digestive function (low hydrochloric acid, increased intestinal permeability) creating a challenging situation to improve zinc levels. A multi-system approach is required to raise an individuals zinc status.
Diet & Digestion
It’s vitally important to treat Pyrrole disorder from a holistic standpoint. Addressing only the nutrient deficiencies, and copper chelation, may not be enough. Long standing deficiency, chronic adrenal stress, high copper and poor diet can contribute to digestive disorders and intestinal dysbiosis, that may further affect absorption of the nutrients required to reestablish optimum health. Investigations and corrections of diet and digestion form an important part of long term treatment success.
Diet has a profound affect on how you feel and behave. There is a tendency in Pyrrole disorder towards high consumption of sugar/refined carbohydrate foods and alcohol, to compensate for low serotonin levels. Serotonin is the body’s natural anti-depressant, inducing a sense of well-being, calm, and confidence. Serotonin is also needed to make melatonin, an essential neurotransmitter that regulates our sleep cycle which both my kids are in short supply of and now take melatonin daily to assist in them going to bed. Low serotonin levels are commonly seen in Pyrrole disorder due to the Vitamin B6 deficiency. Vitamin B6 (P5P) is a necessary coenzyme in the conversion of tryptophan to serotonin. Eating foods like cakes, chocolate, potato chips or ice-cream and drinking alcohol, are usually the first things we reach for when we are anxious, depressed or sad. These high sugar substances increase insulin production in order to lower our blood sugar levels. The high levels of insulin produced, flush out competing amino acids, allowing higher levels of the amino acid tryptophan to reach the brain. The end result is a boost of serotonin to elevate mood and reduce anxiety. There is some therapeutic benefit in treating Pyroluria with Tryptophan or 5HTP supplementation, especially if the patient suffers from depression, insomnia and craves sweets/carbohydrates. See my post on GAPS diet which is how we healed our gut.
a good video description from a nutritionist & naturopath Greg Newson. He gives a great insight into Pyroluria (aka Pyrrole Disorder and Kryptopyrroles). Pyrrole Disorder may be the hidden factor behind many Mental Health illness such as Depression, Autism, ADD/ADHD, Schizophrenia and Bi Polar Disorder, and also contribute to addictions, violent behaviour, alcoholism, epilepsy and Acute Intermittent Porphyria.
Most individuals show symptoms of zinc and/or B6 deficiencies, which include poor stress control, nervousness, anxiety, mood swings, severe inner tension, episodic anger (an explosive temper), poor short-term memory and depression. Most pyrroles exhibit at least two of these problems. These individuals cannot efficiently create serotonin (a neurotransmitter that reduces anxiety and depression) since vitamin B6 is an important factor in the last step of its synthesis. In addition, these individuals often have frequent infections and are often identified by their inability to tan, poor dream recall, abnormal fat distribution, and sensitivity to light and sound. Classic symptoms of pyrrole disorder include high anxiety, frequent mood swings, poor short term memory, reading disorder, morning nausea, absence of dream recall and frequent anger and rages.
Because pyrroles are stress intolerant, they seem to be especially vulnerable to cumulative stress over many days. Pyrroles Disorder patients are prone to relapses, especially during illness, injury, or emotional stress.
Why is B6 important?
Vitamin B6 deficiency is associated with agitation, irritability, depression and impaired intellectual function. Pyrrole elevation can also be associated with poor tolerance of physical stress, and in advanced cases, severe pain in the joints and extremities may be present. Can you imagine now why so many of us go undiagnosed or misdiagnosed?
Other nutrients may assist in Pyrrole Disorder include niacinamide, pantothenic acid, manganese, vitamins C and E, omega-6 fatty acids and cysteine.
Note that other related issues include an imbalanced level of Histamine (more to come on that), copper and zinc.
How can I get tested?
Most GP’s do not recognise this condition making it harder to get a diagnosis. You could go to your GP and ask them to conduct a Pyrrole Disorder urine sample test through Safe Labs and costs around $80 or you can ask your naturopath to get you tested or look at practitioners listed here that are trained to treat Pyrrole Disorder.
As a family we are resigned to the fact we will be taking these supplements for the rest of our lives and we are happy with that (not at the cost it is not funded by Medicare but we do get to claim for our compound through our health fund AHM) as its just another set of supplements that we have to take to ensure we live a healthy happy and hopefully a long life. It is worth taking these tablets to remove the symptoms that had become a way of life but no more.
I hope this has helped you too! Feel free to comment about your symptoms and how you manage your Pyrroles. I would love to hear from other Pyrroles folks as I know we are not alone!