Ok, the test itself is definitely not a waste and it’s actually really cool how it’s done. However, the test is often misrepresented for what it actually is testing for which leaves patients with inaccurate clinical information.
Many people on mental health journeys eventually come across this disorder or are even tested for it at some point. In short, pyroluria is claimed by some to a be genetically associated chemical imbalance having to do with hemoglobin synthesis. The idea is that people with this condition produce too much kryptopyrroles in their urine as a result of hemoglobin synthesis. It is then suspected that the excess kryptopyrroles bind to vitamin B6 and zinc, thus depleting the person of these nutrients. When B6 and zinc are low, we can see a myriad of mental health symptoms.
Here is what typically happens: someone with anxiety or depression is tested for the disorder with a urine kit and if the kryptopyrrole levels are above 20 ug/dl, then they are given a diagnosis of pyroluria and told to take zinc and B6, often indefinitely.
The question I hope you are asking yourself is, what causes excess amounts of KP in the urine in the first place?
Some causes and conditions correlated with excess KP excretion:
Acute intermittent porphyria or Latent
Down Syndrome
Schizophrenia
Criminal Behavior
Manic depression
Epilepsy
ADHD
Alcoholism
Stress
Infection
You might have noticed that on that list it does not say a specific gene. This is because at this point in the scientific literature there is not a single scientific source that correlates any gene to excessive KP in the urine. This means no one should say that pyroluria is a disorder with a genetic cause.
I like to compare it to Hemochromatosis which is an iron storage disease. When we test iron, ferritin and saturation levels, and get abnormally high values, we might assume there is a problem with iron storage. We do not assume it is genetic in nature until we then run a genetic test to confirm. If it is genetic, only then we have a potentially long-term condition, but if it’s not, the diagnosis and treatment will be different. Back to pyroluria.
Let’s say someone gets tested and told they have high KP and then diagnosed with a “genetic pyroluria”. They are then prescribed zinc and B6 indefinitely and may end up with toxic levels. Toxic levels of zinc and B6 include neurological symptoms, fatigue, nausea, vomiting, copper deficiency and dizziness.
If you look back at the list of conditions correlated with excess urinary KP you’ll notice that alcoholism is on there. It is established in the literature that alcohol use can deplete vitamin B6 and zinc so we would expect to see KP rise in the urine for people drinking a lot. Additionally, many psych meds deplete the body of, you guessed it, zinc and B6.
I’m truly not a fan of running labs if they don’t give us clear clinical direction or information regarding treatment. We run labs to diagnose conditions, screen for diseases and check indirect markers for clues or to compare to previous values. What we gain from this test is a marker that’s associated with many vague conditions.
The last thing I’d like to mention is that zinc and B6 are often used for many people with anxiety and depression, not necessarily because of deficiency, but because optimum levels can sometimes help people feel less awful (depending of course what’s going on). This is because zinc and B6 are both cofactors involved in the production of neurotransmitters and about a jillion other things.
The only time I run this lab is if I am screening for porphyria. However, if someone presents with mental health or other symptoms associated with nutrient deficiencies, then we run more specific tests to diagnose nutrient status and can learn about many nutrients, not just zinc and B6.
The key point I am making is that pyroluria has not been proven to be a genetic disorder so taking supplements long-term such as zinc that store in the body may not be the most helpful thing to do and may even be harmful. We can get more accurate information by testing nutrient status and supplementing accordingly.
Sources:
Warren B, Sarris J, Mulder RT, Rucklidge JJ. Pyroluria: Fact or Fiction? J Altern Complement Med. 2021 May;27(5):407-415. doi: 10.1089/acm.2020.0151. Epub 2021 Apr 27. PMID: 33902305.
Mikirova N (2015) Clinical Test of Pyrroles: Usefulness and Association with Other Biochemical Markers. Clin Med Rev Case Rep 2:027. 10.23937/2378-3656/1410027