Whenever I’m taking a patient’s case history and they complain of anxiety, social anxiety or OCD, I always ask them when it first started…For some it started only recently, often in response to a major life stressor or an obvious health imbalance. But for others, they say, “as long as I can remember” or “ever since I was little”… and this is when my ears prick up – could they be suffering from the common – but not well-known – genetic condition pyrolyria that affects up to 10% of the population?
If you’ve never heard of pyroluria (or kryptopyroluria/Mauve disorder as it’s also known) you’re not alone…it’s likely your GP hasn’t either! But for those of us who’ve studied clinical nutrition, pyroluria is on our radar, because it causes some serious nutrient imbalances that can cause a raft of mental health symptoms.
WHAT IS PYROLURIA?
Thought to be genetic, this condition causes an individual to produce 5-10 times more pyrroles than normal. Pyrroles are a natural by-product of haemoglobin synthesis, but when excessive amounts are produced, they can bind (and thus inactivate) nutrients such as zinc, vitamind B6 and the omega fat GLA (gamma-linoleioc acid). These nutrients are vital for mental health (as well as metabolic and immune health) and neurotransmitter synthesis, and the imbalance in zinc can also lead to an excess of copper which is an added problem.
SYMPTOMS OF PYROLURIA
Symptoms associated with excess pyrroles include:
- anxiety
- social anxiety
- irritability
- fatigue
- poor short-term memory
- little or no dream recall
- mood swings
- increased sensitivity to lights, sounds, odors
- frequent infections
- allergies
- joint pain
- hypoglycemia
- poor appetite, especially in the morning
- nausea, motion sickness
- poor tolerance of dietary protein
- sweet or fruity smelling breath or sweat
- pale complexion
- white spots on fingernails
- premature graying
- delayed sexual development
- alcoholism
- bipolar disorder
- schizophrenia
- OCD
- ADD/ADHD
- Autism
- Down’s Syndrome
- Epilepsy
In children it can show up as high emotionality, “behaviour problems”, delayed milestones and poor resistance to stress.
Recent traumatic or highly stressful events can also increase your risk for pyrrole disorder.
TESTING FOR PYROLURIA
While GPs can order a Mauve factor/kryptopyrrole test to rule out pyroluria, like I mentioned earlier, many are not very familiar with this condition or how to treat it nutritionally.
Thankfully, most naturopaths and functional medical practitioners can also order the test and prescribe the right supplements to correct it.
Warning though, the test is somewhat complicated…firstly you need to go off ALL supplements 4 days prior to the test, then complete the urine sample in a COMPLETELY dark room, and wrap the specimen jar in foil to protect it from light. Then you need to pop it in your freezer (a bit gross, I know) and wait until it is frozen solid before sending it to the collection centre, as these chemicals are very sensitive and can be destroyed easily.
If the test comes back positive, we need to do more testing to check your affected nutrient levels…so the next set of tests include: copper, ceruloplasmin (the main copper-carrying protein in the blood), zinc, histamine (to check for methylation issues) and homocysteine (a marker of inflammation).
Just testing copper on it’s own will only tell you half the story. By testing the ceruloplasmin, you can then determine the amount of “free copper” in the blood – this is the most important number to know, as “free copper” is the one that causes the most health issues when elevated.
TREATING PYROLURIA
It may seem like all you need to do is take a bunch of zinc and B6 and that will take care of it. Unfortunately it’s not that simple and you really should work with a health practitioner well-versed in this condition.
Dosing has to be carefully managed, because if copper levels are high, the increased zinc can cause “copper dumping” as the zinc pulls the copper out of storage and into the blood, and it can make you feel really unwell.
The good news is, when properly managed, symptoms can improve within 3-12 weeks. I’ve seen some really dramatic improvements in a really short amount of time once patients are getting the brain nutrients they need to counteract their bodies excess nutrient excretion.
If you think you may be suffering from pyroluria, or are just looking for a holistic approach to anxiety or depression in general, please get in touch. I offer free 30 min intro-consultations and health assessments in my telehealth clinic, you can book one here.
And in the comments below, I’d love to hear from you! Had you heard of this condition before or know anyone who has it diagnosed? Do you suspect you could be suffering from it?
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