Disclaimer: The information in this post is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education and should not be used as a substitute for professional diagnosis and treatment.
Do I really have another disease that is recognized by some doctors but not all? Well that’s nice and confusing…
After a great appointment with my new functional medicine doctor a few weeks ago I was feeling like I was actually getting a handle on my digestion problem that I’ve been solving. I have an action plan and I’m staying compliant with the treatment of bacteria overgrowth. But during the appointment I also mentioned that I was feeling abnormally anxious and stressed lately. I’m usually really good at processing stress and using coping mechanisms like prayer, meditation, epsom salt baths and deep breathing to de-stress but it hasn’t been helping lately. So my new doctor then brought up that I may have another genetic disease…
“Have you heard of Pyroluria?” she says.
Nope. Nuh huh. Huh? What’s that? says I.
Here is a definition of Pyroluria that I found several times on different accredited websites:
Pyroluria is a genetically determined chemical imbalance involving an abnormality in hemoglobin synthesis. Hemoglobin is the protein that holds iron in the red blood cell. Individuals with this disorder produce too much of a byproduct of hemoglobin synthesis called “kryptopyrrole” (KP) or “hemepyrrole.” Kryptopyrrole has no known function in the body and is excreted in urine.
Kryptopyrrole binds to pyridoxine (vitamin B6) and zinc and makes them unavailable for their important roles as co-factors in enzymes and metabolism. These essential nutrients when bound to kryptopyrrole are removed from the bloodstream and excreted into the urine as pyrroles. Arachidonic acid (an omega-6 fatty acid) also becomes deficient.
There are 2 ways that health practitioners are diagnosing Pyroluria.
Method 1: Questionnaire – Do you have a number of the following symptoms associated with this disease?
or
Method 2: An Expensive Urine Test
I completed the questionnaire which is free and I scored really high.
I started doing more online research after the appointment. I found interesting articles that believe Pyroluria is real and others that believe it’s a myth. Am I interested in trying to find a US lab that can test for this when it’s not a well recognized disease? Not really.
And I already have some knowledge at my fingertips…
I know for a fact that I’m deficient in B6 and Zinc based on the Micronutrient Deficiency Test I conducted with Dr. Dempster in March. The test is performed by SpectraCell Laboratories on your lymphocytes to see what they’ve been able to absorb. vs. many blood tests that only tests the vitamins and minerals in your red blood cells which is a shorter term picture of how your body is doing.
My B6 levels are at a 51%. The reference range for sufficiency is over 54%
My Zinc levels are at 32%. The reference range for sufficiency is over 37%.
The reference ranges are created by assaying thousands of apparently healthy individuals.
So if I am apparently deficient in these 2 micronutrients, it’s time to rebuild them in my system properly. I have not been compliant in taking supplements or being diligent with incorporating food high in B6 and Zinc over the past few months since receiving the test results in March so my course of action is simple.
- Supplement with 25mg of B6 and 25 – 35mg of Zinc daily.
- Include dietary sources rich in B6 and Zinc. For B6 I can consume things like nutritional yeast, meat and bananas. For Zinc I can consume things like red meat, seeds and nuts.
So whether or not I have Pyroluria or not begs to be proven. Do I have a deficiency in 2 key micronutrients that are important for a healthy immune system? Yes. Do we know that B6 deficiencies may cause symptoms like irritability, depression and anxiety? For Zinc deficiencies we see symptoms such as fatigue, poor wound healing and decreased immunity. All are currently present in my life. So here’s yet another part of my health I can optimize. I’m going to stay compliant on supplements and incorporating foods and track my symptoms daily to see if I can see an improvement with compliance.
One day at a time. One more science experiment on my body at a time.