What is Pyrrole disorder?

To understand what pyrrole disorder is and what it means for those of us who have it, we first need to have some understanding of what Pyrroles are. Pyrroles are metabolites that are created in the spleen during the production of Haemoglobin (the oxygen carrying molecule in our blood) and their other name (real or scientific mumbo jumbo name) is hydroxyhemopyrrolin-2-one (HPL).

A recent (5 months ago) diagnosis of Pyrrole disorder (also known as Pyroluria, HPL, Mauve Factor and Kryptopyrroles) has, for me, truly been a blessing and it has put together all the pieces of what has seemed to be a huge, never ending, forever expanding puzzle that I’ve been trying to complete for a very long time.

It has also set me on a bit of a mission to help create more awareness of this genetic disorder that is estimated to afflict around ten percent of the population.

That is way too hard to pronounce and/or remember so I’ll just stick with calling them pyrroles….

As far as medical science is aware pyrroles are simply waste products and have no other role in the body. When pyrroles are created they are excreted from the body via the urine.

Simple so far eh?

The thing with pyrroles is that they bind Zinc and Vitamin B6 rendering these essential nutrients unusable in the body and so they too pass from the body via the urine bound to the pyrroles.

Now for someone who has normal pyrrole levels this isn’t a problem. When pyrrole levels increase however, then it becomes a problem!

And the higher the pyrrole levels, the bigger the problem!

Stress causes pyrrole levels to increase, which means that someone who doesn’t have the genetic version of Pyrrole disorder can still have elevated pyrroles.

This is just one of the reasons that chronic stress can impact our health. More stress can mean more pyrroles and therefore less zinc and B6 available for use by the cells of the body.

The other thing to understand is that when zinc and vitamin B6 are deficient, then over time other nutrients are affected and other deficiencies may develop.

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The common nutritional deficiencies in those suffering with pyrrole disorder include:

  • Zinc
  • Vitamin B6
  • Biotin
  • GLA

Due to an increased stress response or reduced capacity to handle stress in pyrrole disorder, there may also be an increased requirement for other nutrients also such as Magnesium.

Symptoms of Pyrrole disorder

In cases of the genetic version of Pyrrole disorder, pyrroles may be elevated all the time, even when stress is low, and increasing when stress is being experienced. This has a compounding effect as the symptoms of Pyrrole disorder itself can CAUSE stress.

These are symptoms such as:

  • Anxiety
  • Fear
  • Panic attacks
  • Depression
  • Anger
  • Moodiness
  • Social difficulties or awkwardness
  • Paranoia
  • Low tolerance to stress
  • SEVERE inner tension

As you can imagine, these symptoms in themselves can cause a more stressful life, leading to higher pyrrole levels and worsening symptoms.

It’s a downward slide…

When pyrrole disorder is left untreated, due to worsening nutritional deficiencies and the compounding effect that the symptoms may have on the disorder itself, the mental and physical symptoms of pyrrole disorder can be many and varied.

Symptoms may include all or any of those already listed above, as well as:

  • Sensitivity to loud noises
  • Sensitivity to bright light
  • Sensitivity to smells
  • Tactile sensitivities
  • Hormonal problems
  • Delayed puberty
  • Thyroid issues
  • Metabolic issues
  • Abnormal fat distribution
  • Abdominal pain
  • Joint pain
  • Knee pain
  • Allergies
  • Memory issues
  • Explosive anger
  • Irritable bowel syndrome
  • Creaky joints
  • Absence of dream recall
  • Fluid retention
  • Emotionally unstable
  • Dramatic
  • Intolerance to drugs
  • Intolerance to alcohol
  • Alcoholism
  • Substance abuse
  • Nervousness
  • Anemia
  • Lack of hair on head, eyebrows and eyelashes
  • White skin that burns easily
  • Low libido
  • Social withdrawal
  • Leaky gut
  • Digestive issues

and many more…

This is not an exhaustive list of symptoms by any means. The fact is that due to the nature of pyrrole disorder and the effects that it can have on the body, the list of possible symptoms is huge.

I know from my personal experience, because I wasn’t diagnosed until I was fifty years old, that pretty much every part of my body is or has been affected in some way and the symptoms at times have been more than difficult to manage.

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Living with Pyrrole disorder

From the social awkwardness and anxiety that were always there as a child, to the fluid retention, morbid obesity, recurring abdominal pain (requiring hospital admission many times) and horrendous menstrual cycle that started as a teenager; to the panic, fear, skin and digestive problems, allergies, depression and much more that have plagued me as an adult; it has seemed that one thing after another have been added to the list throughout my life, with nothing ever truly resolving, but instead being managed by self eduction, experimentation, lifestyle adjustments, attitude adjustments or by simply increasing my coping skills.

This is what has made the journey so difficult, and so confusing.

At times I’ve been too fearful to leave my house, too panicked to stand in a queue a the bank, too scared to leave power points turned on or plugged in at night time, too tired to function, too fat to live and so very close to suicidal.

At times I’ve lived in pain, both mental and physical, while smiling and trying to pretend as though nothing were wrong.

At times I’ve been convinced that I was truly crazy and I’ve wondered how I will manage to continue to live and function in any kind of a ‘normal’ fashion.

But this is what pyrrole disorder is.

Some sufferers are not so bad and some are much worse, but when diagnosed early, simple nutritional supplementation can prevent sufferers from having to live as I have, or worse, suffer the way I know many with undiagnosed pyrrole disorder have suffered: being labelled, misdiagnosed, treated with psychiatric drugs, being committed to psychiatric hospitals and having their life and their rights removed.

I’m lucky, and I’m incredibly grateful.

I’m grateful that my instincts steered me away from doctors and drugs and toward natural remedies, nutrition and lifestyle to find answers for my problems for all these years. If I hadn’t listened to my instincts I can’t imagine where I’d be now.

I’m grateful that when I was finally so desperate that I actually went to doctor, I chose a doctor who knew what Pyrrole disorder was and recognised my symptoms immediately.

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I’m grateful that I have finally found an answer.

So many haven’t.

That needs to change.

And change it will….

Love & light

P.S. I found an amazing, simple treatment that helps with Pyrrole Disorder (plus almost everything else) and the great thing is that you can learn to administer it yourself, for yourself. I’m very grateful that I came across it. Read about it here. 

P.P.S. I’ve discovered since writing this article, that copper overload is responsible for many common symptoms of Pyrrole Disorder and copper dumping is responsible for the misery that many experience once they start on supplements. You can read more about copper here.There is a lack of good information available about Pyrrole disorder. The problem I’ve found is that many websites just copy what other sites have said and there doesn’t seem to be many sufferers telling their side of the story: ie what it’s actually like to have Pyrrole disorder.

That’s why I’m currently writing a book about Pyrrole disorder – to help get the message out that it exists and to hopefully to help create some understanding of how it affects those who suffer with it. In it I talk about how pyrrole disorder has affected me over the years, from childhood until now, how I learned to manage it before I was diagnosed and found out what it was and how my life has changed since I was diagnosed.

4 thoughts on “What is Pyrrole disorder?”

  1. Thanks for the video…i am 57 and discovered pyrrole disorder when my daughter was diagnosed 1 year ago. my symptoms became worse with menopause, would have been good to have known earlier, i am mourning the life i could have had. Fortunately i was not given anti depressants like my daughter was, her life is a real mess now. Like you, i too have been searching for answers to my health problems for many years, i have never been angry either, i was painfully shy as a child, eg: if anyone visited our house i would run and hide until they went home. good luck with it all, hope you continue to get better and better. p.s… you should see the amount of people on pyrrole, pyroluria facebook pages.

    • You’re welcome Cheryl. I hope things get better for yourself and your daughter. I’m very grateful that my instincts have steered me away from allopathic medicine over the years because I think they would have made a mess of me. I’m a member of a couple of FB groups for Pyrrole disorder and it’s interesting reading other people’s experiences. Good luck with it all 🙂

  2. Hi Sue,
    Would you happen to know if someone doesnt have a spleen they could still have this disorder? Sounds like me but my spleen was removed when i was a child. I’d love your insight!

    Thanks,

    • Hi Vanessa. That’s an interesting question because even without a spleen your body must product hemoglobin. From what I’ve read, your lymph system and liver take over. Would they product pyrroles? I have no idea. Perhaps a naturopath or someone with a bit more knowledge might be able to tell you. I hope you can find out either way. Perhaps copper overload might be your problem if the answer is no?

      Sue

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