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.

Unpause

Ok, I totally lied.  I’m not going away.  I still have things to talk about!

For example, some interesting news about my daughter.  She’s been complaining about tummy aches every day for at least a couple of months.  It didn’t seem to be attention-seeking, because it didn’t result in attention, and she would typically just lie down for a few minutes and then would feel better.  She’s already gluten-free and dairy-free, with a pretty clean diet.  The processed foods she does eat are things like Lara Bars, which have like 3 ingredients and are still real foods.  Anyway, the tummy aches passed pretty quickly every day and I didn’t know what could be wrong, so I sort of let it go and hoped it would pass.

Then one day last week I decided to do some research on this topic.  I came across this Gluten-Free Diet Guide for Families.  On page 6 it talks about GI symptoms that can be unrelated to gluten, and are instead caused by acidic foods, sorbitol, guar gums, lactose, food allergens, and flax.  So I started ruling some of these out.  She doesn’t really eat many acidic foods (vinegars, tomato products, citrus fruits or juices).  Guar gum isn’t something she gets every day.  As I said, processed foods are pretty limited for her.  She’s already off milk, doesn’t eat much soy or fructose.  I suppose an allergy to nuts, yeast, or eggs could be at play…doesn’t eat much flax.  But Sorbitol.  I didn’t even know what that was.  I looked it up and found out it’s a sugar alcohol added as a sweetener to lots of products.

I finally checked the mulivitamin I’ve been giving her.  Flintsones – my first vitamin.  Sure enough – it contains Sorbitol.  Coincidentally we were about out of the jar of vitamins….Hm… if there are 80 in a jar and she’s had tummy troubles for 2-3 months…. hm….  So needless to say the rest of the jar went into the trash and I ordered her a better multivitamin: Hakuna Matata Vitamins – they’re gluten free and also free of junk.  Plus my daughter LOVES them.

But here’s the punchline.  She hasn’t complained of a tummy ache in the last week since we started the new vitamins.  Hm…. Very Interesting.

Conclusion:  Even something as small and as cute as a Flintstones vitamin can be bad for you.  The food industry sucks.

A Pause

I think I’ll be pausing this blog.

I’ve made the decision to start a different blog.  This one seems to have grown a little stale.  I think micromanaging what I put in my mouth, be it food, supplements, meds, non-food, whatever…I think it’s gone as far as it can go for now.  I’ve decided to pursue another direction.

Please get in touch with me via email if you’d like to keep in touch or if you’d like the location of my new blog.  I don’t want a clear path on the web because my identity and photos of me will likely be posted on the new blog. If you’ve followed or commented on this blog, I want you to know that I’ve appreciated you very much!  I would really like to hear from you – don’t hesitate.

I’ll come back to this one at some point.  But for now, I’m taking a break.

Of course, I reserve the right to revoke this at any time!

Peace.

Adrenal Stress Index Results

Here are my current cortisol lab results:
Hormone Test 3/23/2012 11/14/2012 6/30/2013   Units Range
DHEAS (saliva)
15.4
5.3 8   ng/ml 2-23 (Age Dependent)
Cortisol Morning (saliva) 9.6 7.6 5.8   ng/ml 3.7-9.5
Cortisol Noon (saliva) 1.3 1.3 1.5   ng/ml 1.2-3.0
Cortisol Evening (saliva) 0.9 1.3 1.4   ng/ml 0.6-1.9
Cortisol Night (saliva)
0.5
1.6
0.3
  ng/ml 0.4-1.0
Current results are in bold, and are shown compared to the last 2 times I had this test done (about a year ago and about 6 months ago).  According to Dr. Myhill, I’m recovering, as evidenced by normal DHEAS  and low cortisol.  Great.  Well, most things are in range – night time cortisol is a bit low, but I’m not sure I care about that, except that suggests overall low cortisol production.  I’d like morning and noon levels to be higher.  I guess I’ll be looking into adaptogens and supplements.  We’re all moved in to the new place.  I’m looking forward to things.  I have been sleeping well and don’t feel completely tired.  I think I just need to go to bed at a reasonable time.

Changes to Come

“The only constant in life is change.”- Heraclitus, Greek philosopher

Today is my 44th birthday.  I’ll be spending the day packing, and tomorrow we’re moving again…to Wisconsin this time.

My health isn’t great.  My weight is the highest it’s ever been – 204.

I’ve got cortisol testing in the works, and I predict it’ll tell me my adrenal fatigue has advanced since the last time I tested it.  I’m tired all the time.  I thought things were getting better since I quit that ridiculous job in California, and they probably have. Back in February I was having trouble getting out of bed.  Now I’m just generally lethargic most of the day.

I have a 3 year old and can’t afford to be lethargic.  I grew up with depressed parents.  I don’t want to do that to my daughter.  I don’t want her to feel like she’s not worth playing with.  I also don’t want her to lose out on experiences to grow and learn because I didn’t have the energy to leave the house.

I’ve tried multiple times to get back to eating Paleo and to follow the Leptin Rx again.  It just doesn’t feel good to me anymore.  I feel better now – more energy – when I eat some carbs. I suspect this has something to do with thyroid function.  Maybe ketogenic is just not for me.  Or maybe it is for me, in conjunction with thyroid medication or iodine supplementation.  I plan on trying one or both of those, depending on my Adrenal function tests.  My T3 was on the low end of normal, and Stop The Thyroid Madness recommends keeping it in the upper quartile of the range.  Apparently some people use T3 to treat low adrenal function too.  So maybe that’s the direction I’ll go at some point.

My husband asked me what I wanted for my birthday.  I told him “A 23 and Me test!”  So that’s on the way too.

I know this post sounds a little negative.  I’m tired.  But still optimistic.