1300 564 799

Pyrrole Disorder Review

A few weeks ago I was delighted to stumble across an article in the Telegraph discussing Pyrrole disorder (Could You Have Pyrrole Disorder?). Pyrrole disorder is a relatively unknown genetic condition which affects over 10% of the population. The article is written through the eyes of a lady (Zannie) with a young daughter recently diagnosed with Pyrrole disorder. It outlines many of the struggles encountered daily by Zannie and her daughter, prior to receiving a diagnosis and treatment. [1]

Back in 2009 I wrote a newsletter discussing Pyrrole disorder, a condition even back then we heard and saw a great deal of at Kingsway. It is very unfortunate that although Pyrrole disorder has been around for a number of years, most people are still not aware of it. So this month I would like to either attempt to spread the word (again) or just refresh your knowledge of Pyrrole disorder in the hope that people like Zannie and her daughter, will find a diagnosis and start to live a happier life.

The presence of pyrroluria can have a profound effect on a patient’s mental and physical health, as a consequence of the underlying nutritional deficiencies. Pyrrole disorder is characterised by the abnormal synthesis/metabolism of haemoglobin, which leads to the excretion of excessive amounts of zinc and vitamin B6 in their urine. [2]

Pyrrole disorder (also known as Pyrroluria, and formally as Malvaria) was first encountered in the late 1950’s by a team of Canadian researchers, lead by Abram Hoffer; they identified an unusual compound (a so-called Mauve factor) in the urine of schizophrenic patients. Advances in technology in the early 70’s allowed an American research team, lead by Carl Pfeiffer, to correctly identify this compound as hydroxyhemoppyrrolin-2-one (HPL or OHHPL) – a haemoglobin metabolite that is heat and light sensitive, and possessed a pyrrole structure. Pyrroluria patients have shown to produce excessive amount of HPL in their urine. Carl Pfeiffer went on to introduce the practice of supplementation with high doses vitamin B6, P5P (active B6) and zinc to “buffer” the physical and/or emotional stress in high-Mauve patients. This practice is still used today in the treatment of Pyrrole disorder patients. [3] [4]

The excessive amounts of HPL produced in Pyrroluria will naturally bind with zinc and vitamin B6, blocking their receptor sites and rendering them unavailable for their normal functions. The zinc and vitamin B6 molecules bound to HPL are excreted from the body via the urine, resulting in a severe deficiency of these essential nutirents. People with Pyrroluria have also shown to have associated changes in their fatty acid metabolism, which leads to lower levels of arachidonic acid (an omega-6 fatty acid). [2] [3]

The onset and severity of symptoms seen in Pyrroluria can be exacerbated during stressful/ traumatic situations and/or poor diet. Pyrroluria can also be accompanied by other conditions such as; ADD/ADHD, severe depression, Tourette syndrome, ASD, alcoholism, schizophrenia and bipolar disorder (all of these conditions are different manifestations of Pyrroluria). [1] [2]

Although there are many signs and symptoms of Pyrroluria individuals will usually only exhibit a portion of these and each may vary in severity from one sufferer to the next. Signs and symptoms include:

Physical signs

  • White spots on fingernails
  • Larger mid-section
  • Sweet, fruity breath and body odour
  • Pale skin that burns easily
  • Overcrowded teeth and poor tooth enamel
  • Creaking knees
  • Cold hands and feet, even in summer

Common symptoms

  • Anxiety
  • Low stress tolerance
  • Mood swings
  • Depression
  • Motion sickness
  • Auditory processing disorder
  • Memory loss
  • Temper outbursts
  • Insomnia
  • Joint pain
  • Poor dream recall
  • Fatigue
  • Irritable bowel syndrome
  • Delayed onset of puberty
  • Hyperactivity
  • Craving for high-sugar and high-carbohydrate foods. [1]

Interestingly, Dr Nicole Avard, GP (specialises in integrative and nutritional medicine) also explains how…“Pyrrole disorder is quite common – almost a third of patients I see have it – but not many doctors know about it. It is a marker of oxidative stress, which occurs within the body as a result of physical and emotional distress. Our current lifestyle enhances oxidative stress – processed food, lack of exercise, toxins in our environment and emotional stressors. There is also a theory that chronic low-grade infections can contribute.” [1]

Diagnosing Pyrroluria
Pyrroluria is diagnosed by measuring the quantity of HPL (or Mauve factor) in the urine:

  • Normal, healthy persons have less than 10mcg of HPL per deciliter (dl)
  • A reading of 10 – 20 mcg of HPL per dl is considered borderline Pyrroluria
  • A reading above 20 mcg per dl is deemed to definitely have Pyrroluria. [5]

At Kingsway we make up a range of supplements which contain the required high dose of zinc and vitamin B6 (including activated B6 → Pyridoxal-5-phosphate) as well as all the other supportive nutrients required for Pyrrole Disorder. High doses of vitamin B6 and zinc will help to suppress HPL and improve clinical outcomes, irrespective of behavioural diagnosis.

I hope this newsletter will help more people find a diagnosis. Pyrrole disorder can cause tremendous disruptions to people’s lives, but it can be such an easy fix. Please feel free to give us a call (1300 564 799) or email (kingsway@kingswaycompounding.com.au) if you has any questions regarding Pyrrole disorder.

Kindest regards,

Elly Smith
(Nutritionist)

 

References

  1. Hadgraft B. Could you have pyrrole disorder? The Telegaph. 26/01/2013.
  2. Newson Greg. Pyroluria. Vitality and Wellness Centre. http://www.vitalityandwellness.com.au/pyroluria (February 2012)
  3. McGinnis, WJ. Pyroluria: hidden cause of schizophrenia, bipolar, depression, and anxiety symptoms. Safe Harbor. 2004.
  4. McGinnis, WJ et al. Discerning the Mauve Factor, Part 1. Altern Ther Health Med. 2008 Mar-Apr; Vol 14(2): 40-50.
  5. SAFE Analytical Laboraties. (http://www.safelabs.com.au/)

 

Pyrrole Disorder Review

time to read: 4 min