Pyroluria

What the hell is that?

I know, right?  I didn’t know either.  I’ve been subscribing to a wonderful Stop the Thyroid Madness facebook page, which led me to a wonderful Iodine facebook page, which led me to a Pyroluria page.  Apparently Pyroluria is this disorder that no one has ever heard of that affects 10% of the population, and which leads to deficiencies in Zinc and Vitamin B6.  Symptoms of the disorder are varied, but include problems managing stress, mood swings, lack of dream recall, and many others.

My daughter has not responded well to our recent move.  We’ve moved 3 times in the last 9 months, and each time she’s demonstrated difficulties with the change in routine, people, and places in her life.  She’s not one of these “resilient” children I hear so much about (“Oh she’ll be fine.  She hasn’t even started school yet!”)  Truth is, she’s always had trouble with change.  And loud noises.  And she’s always been more anxious than most kids.  And she’s gluten/dairy sensitive, which tends to correlate with Pyroluria.

So I read about Pyroluria and decided to take a chance and get her tested.  Direct Health Care Access does it for $80.  It’s a lot of money (for me), but it’s worth it if it means I can save my child some emotional pain.  I’ll never regret the testing I’ve done for her so far. She’s only 3 and already we know she needs to be gluten free for the rest of her life thanks to testing from Enterolab.  Anyway, they sent out the test kit – I received it within 2 days.  Collected a urine sample today (quite an interesting adventure in itself, with a 3 year old), which is currently in a biohazard bag in my freezer.  The company says you can ONLY mail it back on Wednesdays so they receive it – overnight delivery – on Thursday.  I have no idea how long it takes to get results.

If she’s positive for Pyroluria, we’ll have to figure out how to get her the appropriate vitamin/mineral supplements, which she’ll have to take for the rest of her life.  But man, that would be better than the constant emotional upheaval we currently deal with.  I know we’ve moved her around a lot…but it just feels like this is something else.

I ordered a test for myself too.  Because I’m an emotional pain-in-the-ass too.  I’ll report the results when I get them.

I’m still awaiting my 23andme test results.  Many exciting things to come.

In general, my health is improving vastly.  I feel great.  Having a nice long break from the stress of working full-time has been amazing for my adrenals.  Two weeks ago I started a  yoga program which I now practice every day.  I no longer feel fatigued.

My fasting blood sugar is currently out of control for some reason.  I was in the 130’s two days ago, and 125 yesterday.  This is my current focus right now.  I’m going to fix it with yoga.

Oh…and update on the vitamins.  Still no more tummy aches since we got my little girl off the Flintstones.  She seriously complained that her tummy hurt EVERY DAY for 2-3 months.  And now…never.  Sorbitol is not good for kids.

4 thoughts on “Pyroluria

  1. Interesting. Hopefully the tests come back neg. Does she have any skin issues other than that rash you showed earlier? Zinc deficiency should show up in the skin. Anything specific in 23andme that you are looking for?

  2. She’s always had bumps on her skin – even when she was an infant. I think they’re pretty common, but I don’t know what they are. With the 23 and me I’m interested in MTHFR mutation and also risk for ovarian cancer. My grandmother died of it and it’s hard to detect before it’s too late. Also just curious. I hope the pyroluria thing is neg too, but I had to test. I think I’m addicted to testing. I guess its possible she’s just a temperamental 3 year old.

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