My Pyroluria Journey: My 2 Year Progress With Supplements

Some diagnosed with Pyroluria aren’t so lucky as they suffer from worsening symptoms with no relief in sight. Here’s how I’ve managed it successfully.

I can’t believe it’s been over two years since I was diagnosed with Pyrrole Disorder (also known as Pyroluria). I’ve had people asking how it’s all going and I’m happy to say it’s all going really well.

Disclaimer: Although this writer has used supplements to manage her condition, we strongly recommend to seek professional help prior to trying any supplements that is being suggested here. Use at your own risk.

As I’ve said in previous posts, I was lucky. I felt an improvement from my Pyrrole supplements and taking TMG trimethylglycine betaine, almost straight away, and I’m certain that the reason I noticed those fast results was that I’d been working for two years prior on healing my gut. One of the ways was learning to how to make bone broth.

Many diagnosed with Pyroluria aren’t so lucky. They go from the excitement of finally having an answer, to the misery and disappointment of worsening symptoms with no relief in sight.

This is why (I believe) healing your gut is super important!…

Children (fortunately) seem to get results much more quickly once they start on supplements. I guess they haven’t had all the years of zinc deficiency that make such a mess of our digestive systems.

So anyway, what’s happened with me?

Positive Results on Pyroluria Supplements

It is with much gratitude that I’m happy to report that things generally continue to improve for me. My diagnosis with Pyroluria two years ago and the simplicity of my treatment (the nutritional supplements that I take daily) is truly a blessing. These have been added to my tips for managing pyrrole disorder.

It’s not all perfect – yet! And the truth is that it may never be. But the improvement that I’ve experienced over the last two years is amazing, and wonderful, and makes me incredibly happy when I look back at where I’ve come from.

List of Improvements Since Taking Supplements

• Anxiety is about 80% better than it was two years ago
• Fear has reduced – lots
• My ability to talk to people without inner tension has improved – lots
• That general feeling of ‘extreme inner tension’ has reduced – lots
• IBS is almost non – existent
• I digest food! (It doesn’t pass through me undigested anymore)
• I have a lot less abdominal pain and discomfort generally
• I don’t think I’m hypothyroid anymore (or it is much improved)
• My brain works better – more like it used to when I was younger
• I have very little fluid retention
• The psoriasis on my scalp is almost gone
• My fingernails and hair are strong and grow fast
• Joint pain is much better – I often have none
• My weight is much more fixed/stable
• I am much less likely to overeat
• My relationship with food feels much healthier
• I can exercise again – and feel good after it!

What I’m Still Working On

• Anxiety (it would be nice for this to reduce more)
• Hormone levels (I’m pretty sure they’re still low but haven’t been tested)
• Eczema has become an issue of late, but has also been a minor nuisance in the past
• My weight – I’m optimistic that this will be more manageable especially now that I can exercise again
• I still have joint pain sometimes
• Social awkwardness – it would be nice to be able to socialise and have fun with other people without feeling that inner tension/discomfort/fear that is so familiar. This common symptom of Pyroluria is quite a bit better than it was, but it’s definitely still there and a problem for me. Fortunately I like wine! It helps…

P.S. Pyroluria supplements can be expensive. I buy most of mine from iHerb and Healthpost. Both have great service, great variety and affordable prices. I highly recommend them!