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Testing for Pyrrole Disorder

1/3/2023

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The generally recognised and recommended test for Pyrrole Disorder is the HPL urine test. However, I haven't used or recommended this test for a number of years because of the following reasons:
  1. The test is inaccurate - the Pyrrole compound HPL is very sensitive to light, heat, and time from when the urine sample is taken to when it gets to the lab to be tested. If the urine sample is not handled properly, the HPL levels drop. Many times I have seen someone with all the PD symptoms get a "negative" or low HPL test result because of delays to the sample getting tested, which you typically have no idea whether this happens, and so they don't get the treatment they need. Unless you are physically at the lab and pee in the bottle and give it to them immediately for testing, the result will almost always be inaccurate.
  2. There are over one dozen other conditions or causes to having high HPL levels in the urine, other than Pyrrole Disorder! So the HPL test isn't even specific for this condition anyway.
  3. The HPL level isn't in any way related to the severity of the symptoms, as you would expect. I've seen patients with negative or only barely positive HPL results despite having all the symptoms in a severe way, or others with some mild symptoms having results 10x higher.
  4. Even if you had a positive or high HPL test result, the condition needs to be confirmed with getting the serum zinc, serum copper and caeruloplasmin tests too! When you have the zinc, copper and caeruloplasmin test results, you can calculate the unbound copper % (or non-caeruloplasmin unbound copper) which is a marker of how much oxidative damage/stress is occurring because of the high copper level. The blood tests will always be more accurate.
As Pyrrole Disorder is NOT just a condition associated with zinc and copper, and there are many other symptoms and conditions present, other tests are needed to help identify those other issues and their causes. The HPL urine test cannot help at all with finding these things.
Hence why I recommend all of these additional tests as standard, to more holistically test for Pyrrole Disorder and its common related symptoms and conditions:
  1. Full/Complete Blood Count (FBC/CBC) - This shows tests related to the red and white blood cells, as it is common to find issues related to anaemia in many people with PD
  2. Iron studies - to check for iron deficiency anaemia which is common in approximately 50% of those with PD
  3. Thyroid panel (TSH, and the T4 and T3 thyroid hormones) - as low thyroid function is seen in more than 50% with PD
  4. E/LFT or Serum Biochemistry (electrolytes, liver and kidney functions, protein levels and more) - to check for many metabolic functions which can be affected by or contributing to the PD symptoms
  5. Vitamin D - this "vitamin" acts in the body as an anti-inflammatory hormone to reduce the many inflammatory symptoms of the condition. The nutrient deficiencies of PD can affect the production of vitamin D.
These tests can be done through your doctor or practitioner, but with so few doctors understanding this condition, they may not approve some of these tests, so some may need to be done privately, which will include personally paying for those extra tests.
More important to getting these tests done is to make sure that you get an accurate analysis and interpretation of your results, as perhaps surprisingly, 99% of doctors (or other practitioners) do not interpret pathology results well.
Pathology analysis is an area of specialty that I do, after training over 900 other practitioners on this skill. More information on why doctors don't analyse blood tests properly can be explained here:
https://www.pathologyanalysis.com/pathology.html
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