Daughter To See A Pediatric Endo For Thyroid. Any Advice?

[T.H.]

My 12 year old had her thyroid tested - my request - and some of the results have come back abnormal, in the direction of hypothyroidism rather than hyper-. She was tested for T3 and T4 but not free thyroxine, if I remember right.

So, now we have to take her to see a pediatric endocrinologist. We have both hypothyroidism and Hashimoto's disease in the family, so I'm quietly freaking out over what may be causing the problem.

For anyone who has thyroid issues, especially Hashimoto's: Any advice? Tests that I should make sure are done, or tests that are pretty useless? Any key phrases from a doctor that are a good 'ignorant doctor' alert? Any other thoughts on what I should pay attention to?

After going through so much crap with Celiac Disease, just a small bit of research on thyroid issues makes it seem like it's in a similar situation: rife with medical professionals ignorant about the specifics of thyroid problems, and lots of research still to be done before we know everything. Does that sound right? Amy I just coming across the wrong sorts of posts, or does this seem like what other people are running into as well?

...sorry for the kind of stuttery post here. Really, I'm just so upset for my kid, you know? She's just been diagnosed with even MORE new allergies last week, after celiac disease plus other food issues already, and some weird stomach thing now that is sending us to a pediatric gastro, as well.

Just sometimes feels like life won't cut my baby a break.

[SarahJimMarcy]

I hear you. It can feel like the domino effect. You're a good Mom for getting all these tests done and trying to find more answers.

At a clinic I was working at, a Mom and her 7 year old daughter were diagnosed with celiac and the Mom refuses to go gluten free.

We're in the thick of it, too. We just found a pediatrician who has celiac and have an appointment to see her. Progress.

Just make sure that you ask each doctor all 100 questions you have for them and if you don't get answers, ask them who they would refer you to. Ask about all options so you can make a decision. I also check every book out of the library regarding a topic. So if anyone went to our library right now to get info on celiac, they'd be out of luck. I got all the cookbooks too! To find a new pediatrician who can actually understand celiac, I posted on our Twin Cities ROCK (Raising Our Celiac Kids) Facebook page. I got replies within 10 minutes. Keep asking till you find the right answer or the right doctor.

Regarding thyroid, I asked about that and someone on this forum said to be sure the test the ferritin. I haven't done it yet, but thought I would pass that along. You could also use the search and see what other threads there are.

I hope you little one starts to feel better soon. I understand that frantic feeling but look to progress.

[beachbirdie]

My 12 year old had her thyroid tested - my request - and some of the results have come back abnormal, in the direction of hypothyroidism rather than hyper-. She was tested for T3 and T4 but not free thyroxine, if I remember right.

For anyone who has thyroid issues, especially Hashimoto's: Any advice? Tests that I should make sure are done, or tests that are pretty useless? Any key phrases from a doctor that are a good 'ignorant doctor' alert? Any other thoughts on what I should pay attention to?

After going through so much crap with Celiac Disease, just a small bit of research on thyroid issues makes it seem like it's in a similar situation: rife with medical professionals ignorant about the specifics of thyroid problems, and lots of research still to be done before we know everything. Does that sound right?

Just sometimes feels like life won't cut my baby a break.

You are right, thyroid issues are as challenging to deal with as celiac issues. A thyroid patient does well to get very educated on their condition. I have Hashimoto's, it wasn't easy to get diagnosed.

There is some connection between celiac and thyroid, so it's not surprising a thyroid issue might have come up for your daughter. I would make sure to get her antibodies tested; the primary ones for Hashimoto's are TgAb (thyroglobulin antibodies), and anti-TPO (anti-thyroid peroxidase), and also the levels of free thyroid hormone. Don't let them diagnose on TSH alone and if your daughter ends up on thyroid meds, don't let them adjust meds on TSH alone. TSH is a pituitary hormone, the job of which is to prompt the thyroid to make more hormone.

It might be good to get vitamin levels checked (D, B12, Iron) especially if your daughter is having symptoms.

Be sure to get copies of all lab results and keep them in a file. It is a lot easier for people to help if you can post lab values and ranges.