Home » BLOGS » Are You Mad?… No, But I Do Have Pyrrole Disorder

Are You Mad?… No, But I Do Have Pyrrole Disorder

Mental illness is a disease that people don’t like to speak about. The rate of suicide is increasing but as a society, we remain in denial

… until it affects someone you love.

Today I write about a topic close to my heart – a disorder that has haunted me for many years as I have battled through many past traumas…

PYRROLE DISORDER – a little-known condition with devastating consequences if left untreated.

Let me enlightened you all today in hope that even just one life can be improved or more importantly saved.

‘Moody’.

That’s the word loved ones, friends, and co-workers usually use to describe the person in their life suffering from untreated pyrrole disorder. No one ever knows what’s going to set them off. Like a volcano about to erupt, stress continually builds inside the body until a full-blown eruption occurs.

Then the damage is done.

Bridges are burned, feelings hurt, and grudges formed. So begins the damaging road to despair and mounting reasons to check out of life.

So let’s help prevent this outcome and learn more about this debilitating condition.

What Is Pyrrole Disorder?

Pyrrole disorder, also known pyroluria, kryptopyroluria, kryptopyrrole or Mauve disorder, is a biochemical imbalance involving an abnormality in haemoglobin synthesis that can be purely genetic or acquired through environmental and emotional stress and especially from ‘leaky gut syndrome’ and the over-use of antibiotics.

It is a condition that causes anxiety and depression usually beginning in late teens and lasting a lifetime. Its degree of severity is very much impacted by stress levels and is often triggered by a traumatic event like the death of a loved one, moving away from family, domestic violence, prolonged financial strain or even school exams.

There is usually also a family history of addictions and mental health conditions such as severe depression, alcoholism, schizophrenia, autism, and bipolar disorder.

Nutrient Deficiencies Behind The Cause Of Pyrrole Disorder

Pyrrole disorder is caused by the overproduction of hydroxyhempyrolin (HPL), with stress the major trigger. HPL is a biomarker for oxidative stress and is neurotoxic.

HPL binds zinc and vitamin B6, preventing their use by the body and causing their excretion in the urine and hair. As a result, zinc and Vitamin B6 levels decrease and these deficiencies directly impact on brain chemistry and psychological health.

The Role Of Zinc And Vitamin B6

Zinc is essential for hundreds of processes in the body and is particularly important for healing, immune function, healthy gut & good digestion, neurotransmitter activation, physical growth, memory, insulin sensitivity, control of blood sugars, and DNA replication.

Zinc and vitamin B6 are essential for the production of neurotransmitters such as serotonin (our happy hormone), melatonin (our sleep hormone), GABA (our relaxation hormone), and acetylcholine which is important for memory.

They are also involved in the production of our steroid hormones such as cortisol (our anti-inflammatory, anti-allergy hormone and stress hormone) and the conversion of oils in the body (fat metabolism, proper liver/gallbladder function, and weight control).

Vitamin B6, in particular, is necessary for the creation of red blood cells. It increases energy levels and proper cognitive function.

The oils, EPA/DHA but mostly GLA, are found to be low in those with pyrrole disorder and are damaged by oxidative stress, free radicals, and toxins created by HPL.

Mental Conditions Associated With Pyrrole Disorder

If anyone is diagnosed with one of the following conditions and is struggling with treatment and exhibiting symptoms, then a urine screen for pyrrole disorder may be a good idea: 

  • acute intermittent porphyria
  • ADHD
  • autism/Asperger’s
  • rapid cycling bipolar disorder
  • depression
  • Down’s syndrome
  • learning difficulties
  • schizophrenia
  • Tourette’s syndrome
  • alcoholism
  • violent/criminal behaviour and substance abuse 

 

Signs & Symptoms Of Pyrrole Disorder 

 

  • white spots on the fingernails (a strong sign of this problem)
  • abnormal fat distribution / larger mid-section
  • bowel dysfunction such as irritable bowel syndrome
  • delayed onset of puberty / irregular periods / amenorrhea
  • pale skin that burns easily / inability to tan / thin skin / anaemia
  • overcrowded teeth and poor tooth enamel
  • joint pain / creaking knees / cold hands and feet, even in summer
  • anxiety / nervousness / withdrawal
  • low stress tolerance / severe inner tension
  • mood swings / explosive anger / tantrums / aggression / argumentative
  • depression / pessimism / disorganisation
  • reading difficulties
  • poor concentration
  • dizziness and motion sickness
  • auditory processing disorder
  • memory loss / poor short-term memory
  • insomnia
  • poor or no dream recall
  • fatigue
  • easy bruising
  • hyperactivity / irritability
  • craving for high-sugar and high-carbohydrate foods
  • poor morning appetite / tendency to skip breakfast
  • frequent infections
  • food and environmental allergies
  • impotence
  • hypoglycaemia / glucose intolerance
  • sweet, fruity breath and body odour
  • paranoia / hallucinations
  • seizures
  • intolerance to bright light, loud noises, and strong smells
  • headaches, especially migraines

The severity of symptoms is exacerbated by stressful and traumatic situations (due to higher haemoglobin metabolism) and/or poor diet (lack of nutrients in the system), and/or allergies.

Diagnosis Of Pyrrole Disorder

The only definitive test for pyrrole disorder is a urine screen which a GP or natural medicine practitioner can order.

The diagnosis for pyrrole disorder is as follows:

  • Less than 10 µg/dL of HPL is normal
  • Between 10 and 20 µg/dL of HPL is considered borderline
  • Over 20 µg/dL is considered positive for pyrrole disorder

When I was diagnosed with Pyrrole disorder in May 2016, my level was 34 µg/dL.

That explained a lot I must say.

Pyroluria is genetic for many people also, and therefore symptoms are likely to be seen in the family lineage. Symptoms can be anywhere from mild to severe and manifest in any number of combinations, so it can be very difficult to pin a preliminary diagnosis on anyone without a definitive urine test.

But if one member of the family has tested positive then it would be prudent to test other members who are genetically related.

Treatment Of Pyrrole Disorder

The treatment to correct the imbalance seems surprisingly simple – just supplement with the nutrients that are deficient.

However, just because the treatment seems relatively simple to describe does not mean that it is easy to do.

As people start to take these needed nutrients they may feel terrible as heavy metals and other toxins are released into circulation and their immune system is activated, causing microbial toxins to also be released.

These nutrients should be introduced gradually with the supervision of a qualified practitioner and often further support is needed on an individual basis.

Pyrrole disorder is managed in part by restoring vitamin B6 and zinc.  The type of replacement therapy is very important as zinc must be provided in an efficiently absorbable form (such as zinc citrate) and vitamin B6 should be in an activated form (such as pyridoxal-5-phosphate or P5P) – both allowing for maximum benefits.

Generally, treatment involves taking zinc, vitamin B6, GLA (an essential omega 6 fatty acid found in evening primrose oil), vitamin B5, vitamin C, vitamin E, and magnesium.

Taking vitamin B6 in large amounts can deplete magnesium levels; adding magnesium can reduce irritability and hypersensitivity to light and sound.

Magnesium is also important for normal brain function and deficiency results in both neurologic and muscular symptoms. Inadequate intake of magnesium may also result in a chronic state of inflammation, which can potentially amplify depressive symptoms.

Food sources, red/yellow food dyes and nutritional supplements containing copper should be avoided. Copper is commonly high in people with pyrrole disorder and needs to be detoxified. Both copper and zinc are antagonistic to each other, meaning the more of one element you retain, the less of the other you will have in your body. The ratio between copper and zinc is a fine balance and one that is commonly being tipped toward copper in modern society to the detriment of our health.

It is not advisable for people to self-medicate as vitamin B6 & zinc toxicity can also be an issue for some people if their body still can’t utilize these nutrients properly (due to poor detox pathways).

Under/over-methylation issues need to be investigated as a priority by a qualified practitioner and close observation essential.

Outlook

Adding the nutrients that will correct the pyrrole disorder will not make all of the patient’s problems go away, as those who have this tend to have chronic microbial infections, a sea of accumulated toxins and a history of emotional wounds to still deal with.

Correcting the deficiencies, however, will allow them to respond appropriately to other treatments that would have been previously ineffective and help them to finally move down the road towards true healing.

Health practitioners often prescribe medications such as SSRI’s and antipsychotics to treat symptoms of this disorder. These patients tend not to respond well to these prescribed medications, but they do show improvement with nutrient therapy.

People with mild-moderate pyrrole disorder usually have a fairly rapid response to treatment if no other chemical imbalances are present. People with severe pyrrole disorder usually require several weeks before progress is seen and improvement may be gradual over 3-12 months.

Features of this condition usually recur within 2-4 weeks if the nutritional program is stopped.  Thus, the need for treatment is thought to be indefinite, but with good management and healthy lifestyle and emotional balance, I feel that it is possible to need no supplementation once the correct balance is created and a fairly stress-free life is sustained.

Unfortunately, pyrrole disorder is not a recognized condition by many health practitioners. It is wide-spread and mental health experts estimate as high as 20% of all psychiatric patients, 40% of people with schizophrenia and 5% of ‘normal’ people have pyrrole disorder.

I personally am seeing this statistic a lot higher in my clinic in ‘normal’ clients. It seems to affect women more than men, but unfortunately, most people with pyrrole disorder go undiagnosed.

I am living proof that you can manage pyrrole disorder and live a fulfilled life.

If you are struggling, please reach out and connect with a professional since you are precious.

**If you’ve got this far – thank you for reading and I look forward to bringing you more information in the future.

Now, enjoy some much needed inspirational music…