A Week’s Worth of Questions — 1. Thyroid?!
posted Tuesday September 7th, 2010
Watching my mother instruct Annabelle to blow a party horn at our family dinner last night — in lieu of Rosh Hashana’s shofar – I was reminded yet again that I really have to get on that whole Jewish education thing.
But before that (and apologies, Higher Being, if you do in fact exist) there are more pressing matters. In fact, I’ve got a (short) week’s worth of questions, so even though we aren’t supposed to ask the Four Questions til Passover in the spring, I’m going to ask them now.
You, GIAPH readers, are my kitchen cabinet. And I need some advice.
First up today is a rather specialized topic: The Thyroid.
It’s barely 6 a.m. here, hours til I can call the cardiologist — which I fully intend to do — to share the information the endocrinologist gave me Friday. From what that doctor said, Sophie’s thyroid issues are borderline. He suggests medicating now because, as he put it, what the heck, her body will simply get rid of any extra thyroid medication it doesn’t need.
Really? I asked. Then why don’t you just give this medication to people with Down syndrome from birth on, since so many develop thyroid problems and you’re telling me that unchecked, they cause developmental delays this population can ill afford?
The doctor — who runs the practice at an esteemed local childrens hospital here — couldn’t really answer that, even in front of the two students he was clearly performing for. (Yeah, it got crowded in the exam room, with five of us. And yeah, as you can tell, I’m not this guy’s hugest fan at this point. For one thing, don’t hug me, doctor. We just met.)
Anyhow, I do like Sophie’s cardiologist, so we’ll chat about whether this medication is a good idea for a kid who’s had open heart surgery twice and still has underlying cardiac issues. But meantime, anyone have any advice/personal experiences to share?
Here are the facts, sent to me by one of the doctor’s students (lack of command of the English language is all hers):
TSH = 6.73 ( ref. range 0.5- 5.4 mU/L)
Free T4 = 1.1 ( 0.9- 1.6 ng/dL)
Based on 2 blood determinatios that showed elevated TSH, we are recommending sophie to start on low dose thyroid hormone ( Levothyroxine 25 mcg daily).
Amy,
I think it is a very good idea that you are putting this question out there. Does Sophie’s Dr. have a Down Syndrome child or family member and therefore knows what he is talking about from first hand experience or is he just giving yet another DS parent the same old advice?
What are Sophie’s other options? Do non-traditional treatments that work for non-DS thyroid patients work for kids like Sophie?
Can any of her thyroid problems be controlled by changing her diet? What about supplements?
Why is her doctor hugging you upon meeting you for the first time?
I love Sophie and hope that she has a long and healthy life. Keep your blog readers posted.
Thanks,
Kim
I have no answers but you seem to be asking very good questions. My experience is that specialist (cardiologist, endocrinologist, pulmonologist, etc.) don’t cross-pollinate too well. The trend in our medical system appears to be specialist learning more and more about less and less. I will spare you my cautionary tales but I do think it is ultimately up to the parent- after doing the research and asking the right questions- to connect the dots. Best of luck, Noan
If you are thinking of a second opinion, Dr. Tala Dajani is a wonderful pediatric endocrinologist. She worked at PCH for years but recently opened her own practice (www.pedendophx.com). She is smart and very kid friendly – has two young boys at home.
We monitor Cooper’s thyroid at every annual peds check up but haven’t yet gotten a high result – so I don’t have any words of wisdom except SECOND OPINION! And maybe a third?
I have no personal experience with thyroid, but I know a few kids who are on meds for it. My impression is that it’s a relatively minor thing, but I really don’t know. Especially with the cardio issues mixed in.
Ditto the second/third/fourth tenth opinion idea. What does her regular ped think? Do you see anyone specifically for DS, like a DS clinic or genetics or anyone like that, who might have an opinion?
I just talked to the cardiologist — i really like him (he nixed the suggestion of an ADHD drug a couple years ago, so he’s not super drug-happy, not always anyway) and he said the recommended dose is low enough that it poses absolutely no threat. still, i think i’ll get a second opinion. so thank you noan, dr. dajani sounds great. and cate, no, we don’t have a DS clinic here and the geneticist we did see when sophie was born was beyond useless. i wish i did have someone like that!
I wish I knew more but ( so far) haven’t had much experience beyond my own
I do know that soy is something that,ingested regularly, can throw off thyroid function so I have foresworn my beloved edamame’s. I agree with the independent research altho there is a plethora of conflicting info out there on thryroid issues. Hugs.
Archer’s been on a low-dose of thyroid meds for six months or so now… his numbers were still within the “normal” range but had been creeping up, so we consulted with an endocrinologist and our pediatrician and started him on the low dosage. haven’t had any difficulties at all (except with him choosing to TAKE it some days).
And part of the reason we started is because we were basically told that since he has Ds and is very likely to develop issues, there was no reason not to start it now and keep his numbers on the lower end of the range rather than wait for them to potentially spike and then treat after the fact.
Ricki had high TSH for a while, and she started thyroid. Every few years we have to up the dose a bit. The pills are miniscule and easy to take. If you are checking her TSH /THYROID levels regularly, and you see that giving the thyroid does not cause TOO high a thyroid level, why NOT give it? The real clincher is that almost all the signs of low thyroid are things kids with DS tend to have anyway. Any with kids with DS, whose matabolism is anyway about 10% off, it seams that you would want to keep the thyroid up to par to help avoid extra weight gain as well.