Pyrrole disorder

Pyrrole disorder, never heard of it or you’ve heard the name and thought what are they on about? Don’t worry, if you had asked me a year ago I would have been saying ‘huh’ along with you…until it became my reality.

My journey with pyrrole’s started through studying Nutritional Medicine at university in which I was learning about all the illnesses and diseases one can experience in a lifetime and I started to develop the paranoia the most health students develop when they think they have ALL of these illnesses and diseases. From this stemmed self diagnosis and from self diagnosis developed a snow ball that kept tumbling and tumbling until it reached the bottom of the hill and suddenly I had every condition known to man.

My self diagnosis led me to my integrative doctor (general practitioner + naturopath) with a hand written list of all the symptoms that made me certain I was suffering from hypothyroidism (one of the many conditions I thought I could possibly have). Symptoms such as cold hands and feet, gaining weight whilst living a healthy lifestyle, low libido, irregular menstrual cycles, brain fog and to top it of a lecturer who claimed I looked “thyroidy”. That’s it I thought- hypothyroidism!! I went armed with my list of symptoms thrilled that I could have potentially found the reason for my struggle with weight and constant brain fog that interrupted my learning capabilities, to have my doctor not even give me a chance to get through my extensive list before she said “have you heard of pyrrole’s disorder?”.

Hypothyroidism (under active thyroid) symptoms can often be mistaken for a whole host of other conditions, in particular pyrrole disorder as one of the consequences of pyrrole disorder is the affect it can have on the thyroid. After looking at the list of symptoms for pyrrole disorder (they are extensive) I could identify with at least 15 symptoms and so I thought to myself maybe my doctor is onto something… A urine sample and one week later I got a phone call from the doctor’s clinic confirming I had a very high positive result for pyrrole’s disorder (bingo!).

So enough about me… what is pyrrole’s disorder you ask?

Pyrrole disorder (also known as pyroluria, kryptopyroluria, kryptopyrole or Mauve disorder) is a genetic blood disorder that can be induced by a traumatic event in your life, prolonged exposure to stress or environmental toxins. It essentially affects your bodies ability to absorb and maintain adequate levels of zinc and vitamin B6, therefore causing extreme deficiencies in both nutrients leading to a whole host of problems and symptoms. Pyrrole’s is termed a ‘blood disorder’ as it stems from an abnormality in haemoglobin synthesis. When haemoglobin is produced it creates a seemingly harmless byproduct known as Kryptopyrrole, also commonly referred to as HPL. In most people HPL is harmless and is excreted in the urine, but in people with pyrrole disorder, HPL multiples too rapidly in the body, thereby binding and blocking receptor sites to zinc and vitamin B6, forming a complex which is then eliminated through the urine. Thus causing a deficiency in zinc and vitamin B6.

Common signs and symptoms of pyrrole’s disorder-

  • White spots on nails (zinc deficiency)
  • Pale skin that burns easily
  • Sweet, fruity breath and body odour
  • Cold hands and feet
  • Anxiety, nervousness and pronounced mood swings
  • Low stress tolerance
  • Depression and panic attacks
  • Social withdrawal
  • Poor short-term memory recall
  • Irregular menstruation
  • Increased sensitivity to light, sound, smell and touch (Eg. Can’t handle sound of someone chewing food or can’t go outside without sun glasses)
  • Irritability
  • Easily fatigued
  • Joint pain- specifically knees and leg
  • Poor dream recall/ or dreamless sleeps (vitamin B6 deficiency)
  • Food allergies/ sensitivities- gluten intolerance, IBS
  • Anaemia
  • Feeling of ‘fogginess’ around eyes/ face or “brain fog”
  • Affinity (love) for spicy foods
  • Poor immune function
  • Inability to tan/pale skin

Treatment options-

The deficiency of nutrients zinc and vitamin B6 created through pyrrole disorder cannot be corrected purely through changing dietary habits and increasing the consumption of foods the contain high amounts of these nutrients (although it doesn’t hurt because they are all good foods to include anyway). The first line of action is to supplement with higher than the recommended daily intake of zinc and activated vitamin B6. This will help compensate for the deficits caused by pyrrole disorder as well as reduce the excretion of HPL, thereby improving symptoms associated with the condition. This is where a Nutritionist or holistic health practitioner is valuable to assess correct dosages and monitor your symptom improvement in order to determine the long-term treatment of the disorder. In addition to this, reducing the stress in your life, removing environmental toxins and/or dealing with the traumatic experience that may have contributed to your pyrrole diagnosis can also help improve symptoms.

Speaking from personal experience, through supplementing with zinc and vitamin B6 my symptoms of pyrrole disorder rapidly reduced within two weeks. No more brain fog, less irritability, higher stress tolerance and dreaming EVERY night, all in just two weeks!! Supplementation for pyrrole’s is generally life long due to ongoing deficiency of zinc and vitamin B6, but once you have built up your stores of these nutrients you will most likely drop down to a manageable maintenance dose that will keep your symptoms stable. If you or someone you know is experiencing similar symptoms, getting tested is simple and easy and only requires a urine sample.

Alex

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2 thoughts on “Pyrrole disorder

  1. Hi Alex
    I tested positive for pyrrole disorder last week, who is best to see for this condition im in the Uk and the GPs are clueless! 🙁

    1. Hi Lucie,
      Hope your going well! As a positive, its good that they have identified you as having Pyrrole disorder because now you can do something about it 🙂 But that is unfortunate your GP’s don’t really know what to do about it. I would suggest finding a nutritionist or naturopath that can help supplement you with the correct dosages of zinc and vitamin B6 and also support your body with any other deficiency/ excesses you may have accumulated as a result of having Pyrrole disorder.
      Hope that helps,
      Alex 🙂

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