Pyrrole Disorder Signs and Symptoms – When to Seek Help
Pyrrole Disorder, also known as Pyroluria or Pyrroles, is a metabolic disorder that most commonly manifests as a mental health condition, poor ability to handle stress and immune and metabolic issues.
Pyroluria is something I have personal experience with, and I understand its varied digestive, mental and systemic symptoms intimately. And I can tell you with experience and certainty: there is much work, but there is a light at the end of the tunnel.
Pyroluria testing is becoming more accepted in Australia by nutritionists, naturopaths and integrative doctors. Clinically, I find it relevant as it helps identify this important imbalance in zinc, B6 and other mineral deficiencies and copper related issues.
Your Pyrrole Disease Score is an indicator of oxidative stress
It is very common for me to see a client who comes in with a statement like this: “I’ve been diagnosed with pyrroles and am on this treatment” or “My child has been diagnosed with Pyrroles and prescribed x,y,z”.
We have to remember that we all have polymorphisms in our genes. Every single person has hundreds of SNPs (‘glitches’) that affect us.
Pyrolluria is no different, and even though so far there hasn’t been a specific gene identified responsible for pyrroles, it is one of those glitches that, GIVEN the RIGHT ENVIRONMENT, can prove problematic.
Pyrroles become an issue in susceptible people when the environmental impacts become too much. Pyrrole’s urine test results will always be affected during times of stress. Trauma and persistent physical or emotional stress are usually key triggers that almost always are implicated in the start of someone’s long-term health issues.
On hair analysis, I can see how much stress has affected someone by looking at the adrenals (sodium and potassium) and copper levels as well as the ‘calcium shell’- a build-up of hard calcium in soft tissues of the body to wall off the trauma or ongoing stress. This will show as elevated pyrroles on the urine test in susceptible people.
Clinically, I view pyrroles as an indicator of how much oxidative stress affects the person and how antioxidant deficient they are.
Many pyrrole disorder symptoms can be present, and many are listed in my Pyroluria – the Stress Disorder article.
Conditions that commonly accompany Pyrrole Disorder
Gut imbalances:
Low hydrochloric acid, SIBO, IBS: we cannot make sufficient stomach acid (HCL) without zinc and B6- the essential nutrients that help produce stomach acid. When the partially digested bolus of food leaves the stomach that hasn’t adequately digested the food, it doesn’t trigger the right amounts of enzymes in the small intestine for optimal absorption. This triggers gas and bloating and can, over time, lead to SIBO.
I have written extensively on IBS and SIBO in this article – Gut Tests – What You Need to Know to Heal Your Gut.
The absolute key issue to address for anyone with Pyroluria is gut health. This is where most of the inflammation and oxidative stress comes from. Suppose you are experiencing ongoing gut issues (such as pain, feeling bloated with irregular bowel movements, diarrhoea, loose stools or constipation or alternate between all of them, food reactions and many others). In that case, my ONLINE PROGRAM – HEALING IBS – is an excellent start. It will guide you through a 5 week of elimination and re-introduction diet and provide worksheets and recordings to re-program your stress response and calm your nerves, which calms the gut.
Food intolerances:
Gut permeability (‘leaky gut’) is common with Pyrroles because zinc is a required mineral to maintain the integrity of tight junctions in the small intestine. When we have a chronic zinc deficiency, the tight junctions are compromised, leading to large undigested proteins escaping into the bloodstream and triggering immune responses.
Many people with pyrroles are intolerant of gluten, especially wheat, dairy, soy, sometimes eggs and corn and others. Often the intolerances can be resolved with the appropriate pyrrole disorder treatment.
Liver and gallbladder issues:
When the level of HCL is inadequate due to low zinc and B6 and stress, the bolus of food that exits the stomach is not at the right acidity (Ph) to trigger proper bile flow. Without a good amount of bile, bacteria accumulate in the small intestine, leading to SIBO.
Thyroid and adrenal disorders:
Our HPA axis (the hypothalamic-pituitary axis) that connects the brain to the adrenal glands is very finely attuned to environmental stress. When we lose zinc and B6 due to pyrroles and magnesium for many and biotin, our ability to tolerate stress becomes weakened. The adrenal system suffers, and energy is significantly diminished.
All my pyrroles clients are very fatigued. They struggle with exercise and day-to-day tasks and usually say their energy is much lower than it used to be. The extent of their adrenal fatigue can be seen on hair analysis and usually takes a long time to correct.
When the adrenals are flagging, the body slows or shuts down the thyroid, putting the whole system into hibernation. It is safer that way- the body is smart, and if it can tell you are heading for burnout, it will force the thyroid to slow down in order to preserve vital energy. It is a mistake to try and ‘fix’ the thyroid and push it harder when active stress and nutrient depletion are present. These factors need to be addressed first.
Chronic infections:
95% of the time, my pyrroles clients have long-standing infections that further burden their system. Viral infections such as EBV (Epstein-Barr virus) are prevalent but hit pyrroles people harder, leading to chronic fatigue. Why? Because they never had the resources such as zinc and vitamin A to enable their immune system to function properly and fight off the original virus.
Candida and other fungal infections are very common with pyrroles due to significant copper imbalances and mercury overload that result from stress and zinc deficiency. Mercury’ feeds’ Candida in the body and is almost always an issue when zinc and selenium are low, and mercury proliferates.
Streptococcus (strep) overgrowth is also common. Many with Pyrroles have ongoing ENT issues, with a large percentage having had adenoids and/or tonsils removed at some stage in their lives.
Mental health imbalances:
Anxiety or depression (or both) always manifests with pyrroles. Zinc, B6, and magnesium are highly stabilising nutrients and are required to produce GABA- the only inhibitory (calming) neurotransmitter in the brain. Without GABA, we drown in a world of almost constant anxiety. There doesn’t seem to be an escape for many, even when on prescribed medications.
Pyrroles lead to a ‘leak’ of zinc and B6, leading to a continuous GABA deficiency and a tendency to addictions that ‘calm the nerves, such as smoking and alcohol. I genuinely believe that personalised nutritional balancing is the only way to achieve lasting mental health.
Depression is common with pyrroles because, in order to make ‘happy’ neurotransmitters dopamine and serotonin (and all neurotransmitters in general), we need to have good stomach acid to break down protein in food to make those neurotransmitters. Of course, we also need to eat the protein first! Many of my clients are significantly protein deficient. Many choose vegetarian diets because they cannot digest meat (the solution is to improve absorption, not stop eating it!).
Vegetarian and vegan diets, if chosen for philosophical reasons, need to be extremely carefully managed if you have a pyrroles tendency. They are very rich in copper and low in zinc and make things much worse for most people. Especially when they are very rich, it comes to mental and hormonal health.
Copper overload is prevalent with pyrrole disorder – zinc deficiency lowers metallothionine – a protein required to bind excess copper. A large percentage of those with pyrroles will have a copper overload problem.
“Severe deficiency of vitamin B6 has been associated with irritability, depression, poor short-term memory and psychosis. This is not surprising since it is required to efficiently synthesise serotonin, dopamine and GABA”. (W. Walsh PhD, ‘Nutrient Power’).
When B6 is deficient, as with pyrroles, it opens us up to many problems, including ADHD, depression, anxiety, and sleep disorders. Unfortunately, many sufferers end up on anti-depressants and ADHD medications. In contrast, the underlying treatment is nutritional and, if implemented with a health professional specialising in mood balancing and Pyroluria, is without side effects.
Most B6 deficiency is genetically acquired, so treatment often involves ongoing supplementation of much higher doses than RDI (recommended daily requirement).
Heavy metal toxicity
Zinc deficiency, as well as copper and iron imbalances accompanying Pyroluria, opens us up to an increased intake of heavy metals. Mercury can directly replace zinc at enzyme sites- it has similar molecular properties (is below zinc on the periodic table, together with cadmium).
The body readily absorbs mercury when zinc is deficient, and those with poor detox and methylation genetics suffer the most. Mercury is a neurotoxin, and I find it present on many tests of those with pyrroles.
Cadmium is also a potent carcinogen and does cause issues for many with pyrroles, especially when exposed to cigarette smoke and farming fertilisers.
Pyroluria can affect your quality of life
You should test for pyrroles so that the associated deficiencies and imbalances can be treated if:
- You experience mental health issues such as anxiety, depression, PTSD, OCD, bi-polar and any others- these CAN be addressed through a nutritional balancing program and addressing them dramatically improves lives
- You grew up with a depressed or alcoholic or drug addicted parent, or a parent who was there physically but not much there emotionally- the tendency for pyrroles does run in families, and many of my clients have ‘the alcoholic father’, the ‘depressed mother’, the uncle who committed suicide, etc
- You were a ‘sickly’ child who often was given antibiotics for tonsillitis, bronchitis, ear infections, etc.- this is a prominent characteristic of chronic zinc deficiency and food intolerances
- You have taken oral contraceptives and had a significant adverse reaction which probably forced you to discontinue their use- a clear indication of a substantial copper overload
- You have chronic hormonal issues: painful periods, moods all over the place, excessive bleeding, fibroids, fibrocystic breasts, breast or uterine cancers- more indication of copper/zinc imbalance
- you have suffered significant trauma at any stage of your life, physical or emotional and haven’t been well since or feel you’ve never recovered- such events have a profound effect on our nervous system and immune system, lead to multiple nutrient deficiencies and create severe stress
- You have been put on anti-depressants by your GP or psychiatrist for any length of time
- You can tick more than 10 pyrrole symptoms listed in the table in my original Pyroluria blog
How to treat Pyroluria disorder?
Tests are often ordered to address Pyroluria symptoms through a Functional Medicine Approach.
I usually see pyrroles as a piece of a much larger health puzzle and work to address the underlying issues listed above, such as gut imbalances, mental health issues, immune dysfunction and others. Pyrrole issues never appear ‘by themselves,’ so they require detective work to get on track. I often hear from clients that they were previously prescribed a compounded formula with several ingredients to address their ‘disease’ of Pyroluria.
In my practice, this is not a practical approach on its own. Taking a compound indefinitely does NOT address gut health, methylation, thyroid, adrenals, infections, heavy metal overload and other individual issues. Taking a compound is a band-aid solution, and I encourage you to adopt a more thorough approach to your health.
Examples of tests I use in Pyroluria cases
Here are tests I usually use in Pyroluria cases when issues are multifaceted. Not all of these are required for everybody, but they typically show very insightful findings.
- Hair Mineral Analysis – this is an essential test to understand long-standing mineral imbalances, heavy metal overload, and adrenal and thyroid patterns. Watch my video on Hair Mineral Analysis for Pyroluria showing examples of how Hair Mineral Analysis can help those with Pyrroles.
- Blood tests – for all minerals involved- zinc, copper, iron, thyroid function and some others.
- Pyrrole urine test- helps understand the extent of the problem. I have seen scores as high as 800 in families with a long lineage of mental health issues. Usually, I find, however, that even with a low pyrrole score, there can be many issues to address, and the score itself may not be of significance- more on that here.
- Organic Acids test – a very comprehensive urine test that looks at bacteria, yeast, neurotransmitter issues, oxalate levels, B vitamin metabolism, glutathione levels, amino acid, carb and fat metabolism and energy production. Extremely comprehensive and valuable for when ‘nobody has been able to figure out what is wrong with me’ type of situations
- Genetic testing– is often needed to understand the depth of the mental health or methylation issue.
- Comprehensive Digestive Stool analysis– these are not cheap but extremely valuable if gut issues are involved
- DUTCH complete hormone panel– handy for women (but some men also) in understanding hormonal dysregulation and mood disorders/issues as well as stress issues
- Food intolerance and compatibility testing – often necessary to solve the gut health and bloating/indigestion/reflux/constipation etc. puzzles
- Porphyrin urine test – for heavy metals if they do not show on hair analysis and are suspected.
Special mention: Gilbert’s Syndrome and Pyrroles
Gilberts Syndrome and Pyrroles is something that doesn’t get much attention, but I find that a large percentage of my Pyrrole clients also have Gilbert’s Syndrome. This genetic condition leads to continuously elevated levels of toxic bilirubin on blood tests.
Suppose you have a series of blood test results from several years and look at the Biochemistry panel. In that case, you will notice bilirubin there- a consistent elevation >15 umol/L is a strong indication of Gilbert’s and can also be confirmed with a genetic test. Your GP will say it’s a ‘benign’ condition and nothing to worry about. This is sadly far from the truth.
I mention Gilbert’s in relation to Pyrroles because this is a liver heme breakdown issue, just as pyrroles are. There are no studies on this, but I personally have both conditions and see them in many clients.
Why is high bilirubin a problem?
Just like pyrroles, it increases oxidative stress in the body. It’s a toxin, and inconsistently large amounts will cause damage throughout. It shows that the phase 2 liver function of glucuronidation responsible for removing many toxins if not functioning.
In my blog article, you can read about Gilbert’s syndrome – Gilbert’s Syndrome – The Hidden Causes of Gut-Brain Issues.
Do you believe that Pyroluria (Pyrroles Disorder) may be a key player in your health conditions?
Want to address it fully, book your consult in my calendar to discuss. My virtual consults are open to patients worldwide.
We all know that Pyroluria is a stress intolerance disorder. All of my Pyrrole clients benefit significantly from mindfulness-based stress reduction. Here is an excellent e-course – Return to Calm that you can do at your own pace to help with anxiety, stress tolerance and resilience. I highly recommend (and also suitable for children over 14y.o) to learn to cope with stress.
Maria.
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Hi Maria,
Do you think that Calcium d-glucarate may help for pyrrole as much as it does for Gilbert Syndrome?
Best wishes!!
John
[…] Read more about symptoms and treatment for Pyroluria / Pyrrole Disorder. […]
I have been under various Nathropath’s can I please book a free 15 min phone session
Hi Linda, you can use this link to book in your 15 min call:
https://www.truefoodsnutrition.com.au/clinic-bookings-2/bookings/
thx
Hi I have a genetic methylation mutation also high bilirubin 27 and I tested for pyrole my cholesterol 7.4 everything else good on my liver tests
Also I have von willebrands disease
My son has his test results back, but it has ++++ not a number. Does four plus signs mean 40? The doctor didn’t explain this to me
Thanks
Ally
Hi Ally, i haven’t seen that before, best to clarify with your doctor.
Hi there
My daughter was tested for pyrroles a few years ago and since then my naturopath has prescribed her Pure Children’s Essentials – Orthoplex, and a zinc primer cream. However after reading your article on pyrroles I see that the diagnosis for pyrroles has been changed to >40mcg/dl – my daughter tested at 20 mcg/dl). Do you think we need to continue with treatment? I don’t want to overload her body with VitB6 and Zinc if she doesn’t really need it. TIA Stephanie
Hi Stephanie, the children’s cut off is still 20 (40 is the adult cut off). I always treat the whole person and their symptoms, not just a test score.
Hi Maria,
I have been urged to have testing for pyrrole disorder. I’m in Brisbane. Can we consult and see what we can do?
Kindest regards
Biljana
Hi Biljana, yes i consult by skype/phone across the country and can order the testing for you locally. Please use this link to book in:
https://www.truefoodsnutrition.com.au/clinic-bookings-2/bookings/
cheers
Hello my name is carolyn Kneller. My story is extreme. It is not for me that I write this but for my son. My son Timothy has only a few hours ago told us he has Pyrolluria and in telling me also told of the traumas he has been through in the last 5 years. Tim is 24 and married at 19 to the most viscous hateful girl we have ever known. Because of her insecurities she forbid Tim to have anything to do with us so for 4 years we have not been able to contact him. They have recently separated and so tim has been able to contact us again and this is how we’ve learnt of the traumatic things he has been through. His dad and I are really anxious to get him help, is there any way possible you may be able to help us.
Hi Carolyn, of course, feel free to book in a free 15min phone call to see if I can help: https://www.truefoodsnutrition.com.au/clinic-bookings-2/bookings/
Holy cow! This reads like a journal of my life history! :/
Hi Mark, yes many people who discover pyroluria feel this way:)