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Celiac And Hyperthyroidism

e&j0304

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e&j0304 Enthusiast
e&j0304
Posted

I have been very concerned about Ella's hair loss and the fact that it doesn't seem to be getting better. Her new dr. thinks it's just caued by malnutrition from the gluten intolerance, but I was wondering what a dermatologist would think so I posted the question on a dermatology forum.

The responses I got are making me think that Ella may have a thyroid problem after all. I posted her labs on there and one poster stated that she thought Ella's labs were indicitive of hyperthyroidism. However, the person who interpreted the labs at the university said they were normal...

Here is a link to my post on that forum for anyone who is interested. Open Original Shared Link

What do you think...could there be a link and should I pursue this or should I just stop being on the internet 24/7 trying to self diagnose my child and my family thinks? I am just so tired of worrying about Ella's health. I just want to know that she is 100% healthy and I don't feel as though she is. I guess I'm going to drive myself crazy always second-guessing every dr. though.

Just looking for anyone with experience with this...

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e&j0304 Enthusiast
e&j0304
Posted
  • Author

I messed up on the title and in my post. I meant to type HYPOthyroidism.

Sorry!!

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Also, if you read on the first post on that link...my husband started typing that post and I finished it. It's confusing because it states "my wife has thin hair" and then I sign it. Just didn't want to confuse anyone!! :)

Ok...I'm done correcting myself tonight. Time to go to bed

cheryl50 Newbie
cheryl50
Posted

Shannon do you know what her lab results were? My whole mess started with thyroid problems and yes...my hair falls out whether I'm too Hyper or too Hypo. Is her hair dry at all...ususally Hypo causes dry hair/skin?

Ooops...I forgot to switch usernames (this is my Mom's).

I am Rachel--24 :)

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Yes, Rachel. Her labs are as follows:

Thyroid Stimulating Hormone 2.75 uIU/ML

Thyroxine-Free 1.34 NG/DL

This person on the dermatology site thought that Ella's TSH was too high as most people's is around 1. She said that there are new reference ranges with anything over 2 being suspect and 3 being high...I don't know anything about that though. Just hoping someone could shed some light on this before I head back to her dr. with another self-diagnosis!

cheryl50 Newbie
cheryl50
Posted

Shannon,

Based on those numbers I wouldnt necessarily say she's Hypothyroid. Also having her gluten free now may have changed the numbers some. Can you have her retested? The normal range is .5 - 5.5 . She's right in the middle. They have narrowed it down a little to what they call an "ideal" range but I don't really think thyroid is her problem especially if shes got energy and all else is normal. The hairloss is probably due to the gluten problem. I would try testing again now that shes gluten-free but I doubt any doctor would treat her for thyroid with those numbers.

-Rachel

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Rachel,

Thank you for your insight. Sometimes I just don't know what to think anymore about anything! I guess maybe I'm just spending too much time online trying to figure all of this out. I do trust our new dr. and I hope that she's right about Ella's hair loss being from malnutrition. At this point I'm not sure I can handle there being something else wrong with her. I am so tired of worrying about her health and fearing that there is something really, really wrong...

Anway, thank you again. I hope the hair loss stops soon and she doesn't lose everything she has on top. Her dr. seemed to think that most of the hair on top of her head was dead and that she may lose it all. If that is the case we may have to buzz off all of her hair to make it match. That may be more than I can emotionally handle! :(

I just thank GOD that she doesn't seem to have any developmental delays from all of this. If she was so sick that her hair was falling out then how on Earth wasn't her brain deprived of nutrition as well?? I think it's a miracle.

Thanks again. I appreciate all the help and support you have given me.

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Merika Contributor
Merika
Posted

mucho embarrasing but....(giggle) I was watching an infomercial for a hair-regrower based on Rogaine (you know, for balding men) - I don't know why since I have the thickest hair of anyone I know BUT they were saying it would take about 3 months for the hair to start to grow itself.

If I recall correctly, you've had her gluten-free for a month or so? Maybe the hair just needs a while to start to grow in. ???

Merika

taweavmo3 Enthusiast
taweavmo3
Posted

Funny, as I was reading your post early this morning (when I should have been getting ready!) there was a piece on Good Morning America about hair loss. They mentioned malnutrition and anemia. Hopefully that is all that is going on with Ella, and it will start to grow back soon. I can't imagine having to buzz all her hair off! The only upside would be that it would probably grow back super thick, but that would be so hard to do. Emmie's hair was always thin and stringy, but it never fell out. Now, it is thick and gorgeous...I'm so jealous!

Is new hair growing in? I know each kid is different, but Emmie's hair thickened up pretty quickly (probably two months at the most). If Ella's hair just keeps falling out, I would look for other causes as well.

It is odd how some kids can be so malnourished, but only some of them end up with developmental delays. This drives me crazy, I'm always wondering why Emmie's brain took such a hit. I asked a doctor about this once, and she said it is rare for the body to starve the brain. It will deprive all other parts before it starves the brain. I did read about the "Opioid Eccess Theory" which made alot of sense to me. It says that the unbroken down gluten (and caesin for some kids) peptides are allowed into the bloodstream through a leaky gut, then proceed to cross the blood brain barrier, acting like neurotransmitters, causing development to halt. It's more scientific than that I'm sure, but that's the short of it. Maybe this is why you can have two children equally malnourished, but one will have delays and one will not???? I dunno......I run myself ragged researching this question, so you aren't alone in your online madness! :)

Rachel--24 Collaborator
Rachel--24
Posted

Shannon,

When I first lost alot of hair due to the Graves disease it took months to grow back. I remember thinking I'd surely go bald with the amount of hairloss each day. My doctor assured me that I wouldnt go bald and I didnt. Eventually I forgot about it as I started developing more worrisome symptoms from the gluten. Next thing I knew my hair had filled in and I never even noticed it happening. Now I lost alot of it again but I'm not worried since I know it'll grow back. I had pretty thick hair so although the hairloss was extremely noticeable to me....it really wasnt to anyone else. Ella is young and if she had thin hair to begin with the loss would be more noticeable I would imagine...I do think its probably from the malnutrition. I would give it a couple months to calm down and maybe you'll start seeing new growth...it does take time though.

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Thanks again everyone. Yes, Ella is getting new hair and she has a little "peach fuzz" on top of her hair where it's coming in. It is kind of wierd because it seems as though only the top of her hair is affected. The back seems to be fine. That's what worries me. I am afraid she's going to lose what little she has left on top and we'll have to cut it all off to make it match. I hope it doesn't come to that. I know things could be a lot worse and in the big scheme of things it's just hair but it still makes me sad. I suppose more than anything else it is just a reminder to me that Ella was misdiagnosed for so long and was basically failed by so many doctors. If she hadn't been malnourished from this for such a long time then maybe her hair wouldn't be falling out like this. Of course I feel so blessed that it's just her hair and lack of physical growth that have been affected. I often think about little Emmie and pray that she is going to make a full recovery and catch up developmentally.

Thank you to everyone for your words of encouragement. I think this will just take more time. Ella has been gluten-free for about 2.5 months now. Hopefully we'll see some positive changes soon.

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