Pediatric Thyroid Issues?

[e&j0304]

I saw the other thread about thyroid and thought that maybe someone with experience with pediatric thyroid problems could further help me.

A little history is that my then 18 month old dd was always hungry, short for her age, frail brittle hair, lost a LOT of hair (as you can see in my avatar), moody, cried all the time, VERY lethargic, and I'm sure there's more. We had her tested for lots of things and everything came back "normal." Her TSH was 2.75 and they said that was ok. We also had her blood tested for celiac which was neg. They then decided that it was all "in her head" and sent us to a psychologist.

We decided to put her on a gluten-free diet anyway and she seemd to get much better. Her hair stopped falling out and is coming back in although it is still very thin and brittle and really doesn't grow at all. It is about shoulder length and she has had 2 haircuts her whole life. She is now 4-years-old. Her hair has been shoulder-length since she was about 2. She also ALWAYS has cold hands and feet and seems cold. She has a deep purpleish/redish mottled looking "rash" on her legs and torso often. She is sill quite short for her age in the 5-10% although her weight is in the 50th%. She also struggles with constipation almost every day (crying on the potty that she can't go).

Will any dr. take this seriously or am I just making something out of nothing? We have been laughed out of so many drs. offices that I am almost afraid to pursue this. I know that her TSH is technically in the normal range, but I read that they revised the guidelines and will treat people with symptoms if their TSH is over 2.0. Also they only ran a TSH and not a T-3 or T-4.

What do you think? She did get better on this diet, but I am wondering if we're missing something.

Thanks so much for reading and hopefully responding!

Shannon

[Nancym]

Hmmm... that's a puzzler. Any chance you can get her off dairy for awhile too?

I'd be suspicious of the 2.75 with those symptoms. Your doctor doesn't sound very good either, any chance you can replace him? But what you really want to do is get her tested for thyroid antibodies. That would tell you if there is something attacking her thyroid.

Your symptoms do sound thyroidish but like a mix of hyper and hypo thyroid symptoms. So it might not be thyroid at all. How long has she been gluten-free? If it is thyroid then it might clear up in time (I think 6 months) with the gluten-free diet.

It could be some other autoimmune issue though. They're very tricky to diagnose and it sounds like you've reached the limit of your current doctor's skill and patience.

[mommida]

In my opinion, the testing was not complete on the thyroid levels.

I hope I explain this well enough. A diabetic person has different reactions happening in their body that affects the pancreas. We do not know how to identify those reactions, we can monitor the need for insulin because of those reactions. We are looking at the symptomatic response levels, not the origin of the problem. The same is true for the thyroid. A full thyroid panel should be done to get a better idea of what her thyroid is doing. For the underactive thyroid, you determine how much medication to take by looking at the amount of Thyroid Stimulating Hormone.(TSH). I was surprised my endocronologist was supportive of the Celiac diagnoses- even though we never finished the testing. There is a connection between Celiac-- and auto immune thyroid disease.

L.

[georgie]

Your symptoms do sound thyroidish but like a mix of hyper and hypo thyroid symptoms. So it might not be thyroid at all.

Actually - that is exactly how Hashimotos Thyroid works. As the antibodies attack they can cause hypo or hyper as the thyroid struggles to cope. These attacks can be weeks, months , years apart. Eventually the damage is so severe that the function becomes low. If you treat Hashis early - the damage may not be as severe. Its important to know this - as many Drs get confused by the erratic labs and often try to do a surgical option for 'hyper' when in fact its simply the hyper stage of hypo !

[Nancym]

But you don't usually get both hypo and hyper symptoms at the same time do you? Although I have heard of people who have both Graves and Hashi's at the same time. I can't quite visualize how that works.

But regardless, some people will have contrary symptoms. For instance, I had Graves disease and I gained weight! People using get skinny with Graves. *sigh*

[georgie]

With Hashimotos you don't get hypo and hyper at the same time. It sort of cycles a bit. And the hyper isn't as severe as Graves I think. Its just a pleasant era where you don't feel as tired and lose weight and go out to parties My episodes were years apart but looking back can now work out what was happening. At the time I thought it was good to be skinny and have all this new energy. But its not really that healthy and is just a symptom of the Antibodies attack. And people start to say you are moody - cos the next time they see you - you are all hypo again.

[e&j0304]

Can any of you think of anything else that would have caused those symptoms in my dd? Does a person's hair fall out for no reason ever? I have never in my life seen a 2.5 year old with hair falling out like that, but I thought I'd ask. Also, other people seem to think that the other things that are going on with her are "just her." Such as her cold hands and feet and the strange blotchy marks on her legs. *I added the picture of this in my avatar although it is more obvious in person, I believe* She also has VERY sensitive skin and breaks out in the bathtub every time she takes a bath no matter what soap I use. I really don't like the fact that she is so constipated all the time either...

I guess I just need to have her re-tested and see what her numbers are. I will admit that she got better on this diet as her hair is no longer falling out in clumps and she is much less hungry although she still out-eats any child her age. She has also grown several inches which is great, but she is still between the 5-10th % for height. I should add that I am 5'8 and dh is 6'4. We were huge babies/children and we really have no short people in our family.

This is just so frustrating as a parent. I am not her and have no idea how her little body really feels and what is going on in her head. I tried to trust drs. to figure it out, which really got me nowhere. I feel like I should be getting paid to figure all of this out for them!!

Anyway, thanks again for all the advice. It is very much appreciated.

Shannon

[georgie]

Can any of you think of anything else that would have caused those symptoms in my dd?

I guess there are a few things that could cause those problems but cold hands, hair loss, constipation, lethargy are so typical for Hypo that its hard to look past that especially when you know that TSH is above the new range, and that all the tests have not been done. The rash has me stumped but wonder for Lyme ? It must be terrible for you as a parent to have your child suffer this. I hope you can get some answers soon.

[e&j0304]

thanks for all your help. I have got to get off of the computer and to bed now!! I think I'm going to dream about google since that's all I've done today.