I often get questioned by patients or people with Pyrrole Disorder (Pyroluria) about whether they should reduce intake of copper-rich foods, to reduce their copper levels. Or even how to reduce copper levels. My answer is usually “it depends…”!

The same answer would be given if someone asked “should I eat more zinc-rich foods?” or “how can I increase my zinc levels?”. It depends…

This is because there is a huge assumption from people with Pyrrole Disorder, or even from most practitioners who follow the “official” (and outdated or wrong) guidelines, including and especially the Walsh Institute trained practitioners, that Pyrrole Disorder (Pyroluria) is just an issue of low zinc and high copper levels. Because it’s not!
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If you get diagnosed with Pyrrole Disorder from the urine test, which I no longer recommend as it’s an outdated and inaccurate test, you MUST get a confirmation of this diagnosis from the serum zinc, serum copper and caeruloplasmin tests too. Actually, you also need other tests as well, to find other nutrient deficiencies and factors which are common in this condition. More on this another time.

Sadly, people and practitioners just assume that the urine test alone diagnoses this condition and indicates that someone has high copper and low zinc and therefore needs to supplement with zinc and vitamin B6 (the official guidelines), and avoid copper-rich foods, when this is not always accurate or enough.

Having Pyrrole Disorder doesn’t automatically mean that your zinc is low and copper is high! You can have LOW serum copper but high UNBOUND copper due to low caeruloplasmin. In this case you actually have LOW copper, but low production of the copper transport protein which is the caeruloplasmin, for a number of possible reasons. In this case, do you need to reduce or restrict your copper-rich foods? Absolutely NOT! Reducing your copper in this example will make your health WORSE!

Similar with zinc. Some people with this condition can have optimal zinc levels, but copper can either be too high or too low, together usually with low caeruloplasmin. It’s the imbalance between zinc and copper which is important to know from testing, and together with the caeruloplasmin level with respect to the copper level, which is driving most of the symptoms of Pyrrole Disorder.

Many people with this condition have low zinc and low copper levels, with low caeruloplasmin. This causes the high unbound copper % level, which is an indicator of high oxidative damage in the body, which will be causing many symptoms. Further investigation and testing is needed for people with this presentation of Pyrrole Disorder.

What YOU need in YOUR treatment plan depends on YOUR unique situation, causes, symptom presentation, and test results. Having a standard protocol (such as the Walsh Institute guidelines) is not going to help you and your unique situation. A one-size-fits-all approach never works! You need a personalised plan from a detailed investigation of your health.

This is what I do, after specialising in Pyrrole Disorder for many years.

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