Pyroluria – The Stress Disorder – by guest nutritionist Maria Shaflender

What is Pyroluria?

Pyroluria or Pyrrolle disorder, also known as the ‘mauve factor’ (due to the slightly purple colour of the urine of those identified to have the disorder) – is a genetic condition first identified by Dr Abram Hoffer and Dr Carl Pfeiffer in the 1950s USA.

It’s a metabolic condition which impacts synthesis and metabolism of haemoglobin, the oxygen carrying molecule in the blood. As with all cells in your body there are waste or by-products produced and the by-product of haemoglobin is a metabolite called hydroxyhemopyrrolin-2-one (HPL) also known as Pyrrole.

Pyrroles don’t really serve any useful biological purpose and are normally excreted by most of us uneventfully.  In someone with pyroluria, however, these pyrroles don’t get excreted and build up–even more so under stress of any kind.  Pyrroles bind strongly with zinc and vitamin B6, making them largely unavailable to the body.

Zinc and B6 are nutrients critical for the functioning of our entire body and mind –including our digestion, immune system, cognitive functioning and emotions. Over time, deficiencies can really take their toll on the way you feel and function and have serious consequences.  Often people will go for years suffering the effects of pyroluria regardless of what therapies they try or how well they eat.

As great quantities of zinc become unavailable to the body, an imbalance with zinc’s partner –copper is created. Many of the symptoms exhibited by those with the disorder are due to this zinc/copper imbalance.

These nutrient deficiencies create biochemical imbalances in the body that often include:

• copper overload
• oxidative stress
• methyl/folate imbalances
• amino acid imbalances
• heavy metal toxicity

Copper overload in particular can manifest in many ways, eg: anger, irritability, post partum depression, bipolar disorder, ADHD, autism and others. Having a copper overload leads to elevated levels of oxidative stress- it’s like rusting ‘on the inside’.

Many people with pyrrolle disorder may have elevated levels of heavy metal toxicity, especially from Cadmium and Mercury as these ‘slot into’ places in the body where Zinc should normally be present.

Pyrolurics also have a greater than normal need for omega-6 fatty acids, particularly dietary arachidonic acid (AA–found readily in eggs, butter, red meat and liver) and the essential fatty acid GLA (gamma linolenic acid– found in supplements like black currant seed oil and evening primrose oil).

It’s prevalence amongst those with mental health disorders is:

• As much as 50% of those with autism
• 40% of alcoholics
• 70% of schizophrenics
• 70% of persons with depression
• 30% of persons struggling with ADD

However, pyroluria isn’t limited to these populations.  As much as 10% of the population may have this metabolic condition and not know it but may have lifelong symptoms associated with it that tend to worsen with age and stress. In fact, pyroluria may lie ‘dormant’ until a stressful event triggers individual symptoms.

What are the symptoms?

Symptoms vary widely by individual and may include but are not limited to the following. The list below may give you an indication that you may have a Pyrrole disorder, however it is not a diagnosis for Pyroluria. For a correct diagnosis a urine lab test must be completed (see below)

Many people with the disorder report having these symptoms their whole life, including childhood:

• severe inner tension
• ongoing anxiety and/or depression
• poor stress tolerance (with added stress of any kind making the symptoms worse)/ overwhelmed in stressful situations
• digestive issues and difficulty digesting protein
• frequent colds and infections
• joint pain or stiffness
• acne, eczema or psoriasis
• mood swings and reactivity
• poor short term memory
• a tendency in many to lean towards being a loner
• cold hands and feet
• constipation
• poor dream recall
• early greying of hair
• hypersensitivity to noise/bright light/smells
• tendency towards iron deficient anaemia
• poor memory
• hypoglycaemia
• much higher capability in the evening than mornings

Why has my doctor never heard of Pyroluria?

Chances are your doctor hasn’t heard of pyrolle disorder (and may not be interested in it) because there are no drugs to treat it.

The treatment is nutritional and aimed at restoring the mineral, vitamin and essential fatty acid levels.

How to get tested for it?

The test is a simple urine test that can be ordered by your nutritionist or naturopath. It needs to be collected in one of the pathology labs (in numerous locations). The pyrrolles in the urine are light and heat sensitive, so the sample is promptly wrapped and frozen and sent to the lab for analysis.

The current cost of testing in Australia is $80. I regularly order this test when the symptoms outline above are present.

Treatment for pyroluria involves:

Balancing zinc and copper, ensuring appropriate levels of vitamin B6 and other B vitamins, the right balance of fatty acids and strategies to reduce oxidative stress.

All of these are nutrition and lifestyle treatments that need to be highly individualised based on:

• the level of HPL (pyrrolles) detected upon testing,
• current mineral status,
• health conditions and symptoms exhibited,
• presence of heavy metals
• other toxicity factors
• digestive and immune health.

Some ongoing supplementation is needed indefinitely in order for symptoms to remain manageable long term. Without appropriate supplementation symptoms tend to return within a week or two.

With appropriate supplementation and stress management mild cases of pyroluria tend to respond quickly.  More severe cases tend to experience gradual and incremental improvement over a period of several months.

NOTE:  It’s important that a clear laboratory diagnosis is determined before attempting high dose supplementation with zinc and/or B6.  Working closely with a qualified health care provider knowledgeable about this condition is strongly suggested.

Further reading:

• “Nutrient Power”, William J Walsh PhD, 2012
• Dr Woody McGinnis, numerous publications on pyrrole disorder
• www.mindd.org

PYROLURIA QUESTIONNAIRE

(source: Nora Gedgaudas, www.primalbody-primalmind.com)

Write down how many of these are an issue for you:

1. Little or no dream recall
2. White spots on finger nails
3. Poor morning appetite +/- tendency to skip breakfast
4. Morning nausea
5. Pale skin +/- poor tanning +/- burn easy in sun
6. Sensitivity to bright light
7. Hypersensitive to loud noises
8. Reading difficulties (e.g. dyslexia)
9. Poor ability to cope with stress
10. .Mood swings or temper outbursts
11. Histrionic (dramatic) tendency
12. Argumentative/enjoy argument
13. New situations or changes in routine (i.e., traveling) particularly stressful
14. Much higher capability and alertness in the evening, compared to mornings
15. Poor short term memory
16. Abnormal body fat distribution
17. Belong to an all-girl family with look-alike sisters
18. Dry skin
19. Anxiousness
20. Reaching puberty later than normal
21. Difficulty digesting, a dislike of protein or a history of vegetarianism
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin
24. Poor sense of smell or taste
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue
27. A tendency to overreact to tranquilizers, barbiturates, alcohol or other drugs (in other words, a little produces a powerful response)
28. A tendency toward anaemia
29. History of mental illness or alcoholism in family
30. Easily upset by criticism
31. Sweet smell (fruity odour) to breath or sweat when ill or stressed
32. Prone to acne, eczema or psoriasis
33. A tendency toward feeling anxious, fearful and carrying lifelong inner tension
34. Difficulty recalling past events or people
35. Bouts of depression or nervous exhaustion
36. Prone to frequent colds or infections

If you have answered yes to 15 or more of these then consider testing for Pyrrole disorder.

For those who it comes back positive, simple nutritional treatment can truly mean the difference between a ‘normal’ life and a life full of stress, anxiety and ill health.

Article by Maria Shaflender – Clinical Nutritionist. Maria and I share a clinic in Sydney where we provide an holistic approach to addressing your pyroluria disorder and other mind-body related illnesses.

Click to book an appointment with myself or Maria online.

Scott Allerton

Clinical Hypnotherapist, Qualified NLP Practitioner, Mindfulness Stress Reduction Teacher,  and holds Certificate 4 in Fatigue Management.

I believe that we have all the resources within us that are needed to heal ourselves, although having someone that has walked the walk and undertaken the training needed to facilitate you in effecting the change is essential. Find out how you can work with me here.