PYRROLE DISORDER (PYROLURIA) TESTING – WHAT YOU NEED TO KNOW

I’ve recently had several enquiries (both on my Facebook page and via email) regarding testing for pyroluria, or pyrrole disorder. So I thought I’d pop by with a quick blog post to with the following info:

• How to tell if you’re at risk of pyrrole disorder

• Testing options available (and why not all pathology labs produce accurate results)

• What’s a borderline result and what’s considered pyrrole disorder

• and which follow up tests you may need to do if you have pyrrole disorder

A QUICK RECAP

Also known as kryptopyrroles or pyroluria, pyrrole disorder is where the body makes too much of a substance known as pyrroles, during the everyday production of haemoglobin. These pyrroles bind to your vitamin B6 and your zinc (plus a couple of trace elements), causing these precious nutrients to become excreted rather than absorbed. Eventually the condition manifests as a serious and long lasting zinc and B6 deficiency.

Signs and symptoms are many and varied, but here’s a rundown of the most common ones:

• Lowered immunity

• White spots on the nails

• Fatigue

• Brain fog

• Mood swings and anger

• Inability to cope with stress

• Feelings of being overwhelmed

• Depression, anxiety and nervousness

• Leaky gut and food allergies

• Fungal infections and candida

• Hormonal imbalances

• Joint pain

• Abnormal body fat distribution

• Poor dream recall

• Poor tolerance to light and sounds

• Migraines and headaches

• Lack of hunger or nausea in the mornings

• Skin that burns easily in the sun

The body makes more pyrroles during times of stress, so the more busy or stressed you are, the more of the above signs and symptoms you may experience.

If you found yourself nodding your head whilst reading the above dot points, then you may wish to speak to your chosen health practitioner about testing. Also, if you have a family member who also ticks a lot of the boxes, then I recommend further investigation, as I see strong family history links to depression, anxiety, fatigue and hormonal issues in many of my pyrrole clients.

TESTING FOR PYRROLE DISORDER

The test that I recommend is completely painless. It’s called a Mauve Factor (Kryptopyrrole) test and it’s a urine test to look for kryptopyrroles.

Warning: It can be a bit fiddly. Pyrroles are very susceptible to being destroyed by heat and light, and if the test isn’t done properly, you may get a false negative result. Here’s the lowdown on how to do a pyrrole test:

• It needs to be the second urination of the day (so probably mid-morning)

• You need to do it in a dark room

• Wrap the specimen jar in foil

• Pop it in the freezer until it’s frozen solid

• Then most likely (depending on who you do the test through) a courier will come to your house to pick it up

• It should then be transported on dry ice to keep the sample frozen until it reaches the lab

If the company you go through doesn’t transport your sample on dry ice – then chances are your test result won’t be accurate. So beware anyone who doesn’t stick to the above procedure and choose a lab that keeps it frozen for the whole journey.

WHAT THE RESULTS MEAN

The higher the number, the more pyrroles you have running around inside your body.

The reference range for this test is 0-10. A reading greater than 10 can be considered to be pyrrole disorder. However, I also take into account my clients’ current state of both physical and mental wellbeing, as anything between 10 and 15 may be considered “borderline” if there aren’t a great deal of symptoms present.

It’s not unusual to see very high readings (which can be a shock when you view your test results!). I myself scored a reading of 45 (eek!) when I did my test in 2015. It’s not uncommon to see results 25 and upwards, and I’ve even seen one as high as 120. If you’re going through a period of stress, then the number on your results may be higher too.

WHAT TO DO IF YOUR TEST COMES BACK POSITIVE

Congrats – you’re in the pyrrole club! Although it often sucks to find out that you have pyrrole disorder, it can also be a very empowering moment, because it means we can take action to help you feel better.

So first steps first…

Because the pyrroles bind to your zinc and B6, we need to have a look at how this may be affecting your body. A history of long term zinc deficiency can result in an increase in copper in the body, and it’s this elevation in copper that leads to a lot of the physical and mental health issues. Copper toxicity has implications for anxiety, depression, mood swings, skin problems and hormonal imbalances, to name just a few, so it’s important to measure it to see what it’s doing.

Also, copper is transported around the body by a protein called ceruloplasmin, which delivers the copper to the cells where it’s used in trace amounts as a nutrient. Low ceruloplasmin may result in what’s called “elevated free copper” (or unbound copper), which leads to a greater risk of toxicity symptoms. So a copper reading on its own doesn’t give us everything we need to know – we also need a ceruloplasmin reading to get the full picture of what’s really going on.

Incidentally, too much zinc can also cause health issues, so it’s wise to check the levels in the body before starting on supplements, rather than just taking high doses for long periods of time and leaving the rest to guesswork. I find that testing serum zinc (via a blood test) is far more accurate than the old “zinc tally tests” that naturopaths used to do.

So zinc, copper and ceruloplasmin testing are a MUST.

The most common test I use in my practice is called a Pfeiffer Profile, which looks at zinc, copper and ceruloplasmin, and then gives me a free copper calculation. It also checks other handy markers like histamine, homocysteine and vitamin D – these often become out of balance in my pyrrole clients, and need to be corrected in order for wellness to occur. Once we have these results, it’s a lot easier to pick the right supplements and dosage, and to minimise side effects.

So, there you go. If you think you may need a Mauve Factor (Kryptopyrrole) test, then contact your local naturopath or integrative GP. If you wish to organise testing in Australia, I also offer Skype and phone consults and can arrange that for you. Click here to book in and let’s get started together.