How I was diagnosed with Pyrrole Disorder….

Disclaimer: I stress that I’m sharing to you details of my condition and treatment. I am in no way a medical professional. If you are concerned about your own health please seek out a professional who will be able to help you.

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You know when you just don’t feel quite right, but general tests prove that you seem to be ok? That was me. For the last couple of years I’ve been struggling with a wide variety of crazy things happening, more recently was the development of numbness in my feet (which no one could tell me the cause). Slowly over the course of the year I had been getting extremely swollen feet, which was concerning when I wasn’t doing anything out of the ordinary. Flying for an hour, super swollen. Spending the night going out to dinner and a movie? Yep, you guessed it…. swollen.

Now I’ve been seeing my physiotherapist for my shin splint/calf issues for the year and she let me know that the swollen feet certainly wasn’t anything injury related, given that I was suffering on both feet in areas that weren’t inflamed. The cause of the water retention had to be something else. By sheer luck I managed to get into a Women’s Health Specialist the following week and as I told my crazy story of sleeplessness/fatigue combined with numb & swollen feet, other issues such as really bad acne, continuous weight gain and dizziness at times, as well as answering a whole bunch of what I considered un-related questions (and having the so-called tell-tale white markings on the fingernails) I finally got an answer to the bizarre happenings of my body.

I was diagnosed with Pyrrole Disorder (also known as Pyroluria) with Undermethylation based off symptoms, and blood tests have shown the results. Pyrrole Disorder is a genetic blood disorder that results in a deficiency of zinc and vitamin B6. Remember, these are essential for the function of the body and the mind. Methylation is a process that regulates well-being via dopamine and serotonin and having undermethylation generally means that you aren’t producing enough serotonin; meaning that you have to get it in other ways, such as exercise.

With this diagnosis, I have been able to start treatment (and it was tweaked based on the blood results that I got back) with the essential supplements that I was missing. For the first week of treatment though I was flying over to Canada prior to spending my vacation in Colorado and Disneyland, and I tell you – it was the WORST flight I have EVER experienced. Even though I was prepared for a little discomfort from air travel and swollen feet, I wasn’t prepared for the absolute pain for a good 15+ hours. The compression socks did nothing. Even days after the flight (and just being at work), my legs and feet were incredibly painful, swollen and red. Luckily during the trip I was able to give my feet an Epsom Salt bath which helped the situation!

This is how bad the swelling was before it got better...
This is how bad the swelling was before it got better…
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And for the side view….

I truly think that this had to get worse before it got better, two weeks later I was able to make the journey back to Australia from LA without compression socks and with minimal swelling. I had been on the Zinc Citrate P5P tablets for three weeks now and thought that it had made a bit of an improvement. As I’ve mentioned above, the treatment has had to be tweaked (under my treating practitioner) as it seems that my zinc was way too low to even show on the scale. Histamine levels – way too high.

I’ve spoken with my parents about this disorder and the symptoms – it appears that I had a tendency towards these as a kid; it even shows up in comments from teachers in my school report cards such as  “has a tendency to perfectionism”. As an adult I’ve suffered high anxiety, sleeplessness, depression, fatigue & even time in hospital due to stomach issues – all due to the lack of zinc and B6. But to be honest, I haven’t let it get the best of me. Sure, there have been some SUPER hard days but looking back, not knowing didn’t give me any excuses – I just needed to go out and get the day done.

One thing is certain though, I’ve got some pretty awesome people around me who have been my support through these crazy times.

I’m also thankful to have made that decision 2 and a half years ago to pick up running again, especially when all the symptoms started to pile up – it really gave me something to focus on.

So what’s the outlook now? Well, it’s onwards and upwards and I can’t wait to feed my body with the nutrients it needs, especially with the challenges of training for my first marathon!

There's light on the horizon!
There’s light on the horizon!
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