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terrified - my baby diagnosed with hypothyroidism
  • terrified - my baby diagnosed with hypothyroidism   warthog   6y  5,308  
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    Date: 6/24/2009 5:16:23 PM   ( 6y ago )   Hits:   5308
    Yes, me, my baby.

    I am typing this as my baby lays on my lap. He was born in May, at home. He's beautiful.

    I took Iodoral throughout my pregnancy, and now that I'm breastfeeding, I still take it. I take one pill a day, though I forget a pill here and there.

    His second newborn screening test (state mandated) shows high TSH (over 100 whatevers) and I think low T4. I don't really know, because I don't have copies of the full reports. I have a copy of the first one, except I think it is some limited information, because it only shows T4, not TSH - there's very little reported results on that thing, even though I know they tested for a lot of stuff. I requested full copies from the pediatrician's office I went to today, but they put it off and said I could get it from the endocrinologist when I go to him. Just LOVE this whole "you paid for tests, but you're not allowed to see the results" crap.

    The worst part of today was the follow up blood test. The newborn screening blood draw was from the foot, which my midwife did. Each time, my baby took it very well. I think the midwife is good at drawing blood. But today, I had to go into a hospital lab (yay exposure to crud, right after the pediatrician's office full of sickos!), where I helped them hold down my little boy while they dug around in each arm for a vein (couldn't find it in the first arm!). I cried there, I cried afterward. If he is treated for hypothyroidism, there will be weekly blood draws. They took so much blood. Why does it take that much this time if it only took a tiny bit for the newborn screening test?

    I told the pediatrician about the Iodoral I'd been taking and said it could be transient hypothyroidism. He said they wanted to treat my son for hypothyroidism anyway.

    He gave me a prescription for Synthyroid. My husband got it filled.

    The pediatrician called back a couple of hours later (today) with the results. His TSH is about as high as before.

    How did I end up with a supposedly hypothyroid baby?
    They call it congenital hypothyroidism. I say they don't actually know. They don't know how much thyroid my baby has.

    I take my iodine, my selenium, my companion nutrients. I didn't expect this to happen to me. I don't understand.

    I feel like a parent of a child diagnosed with cancer. I feel like they will be after me if I don't treat him the way the pediatrician and endocrinologist tell me to. After me for some kind of child neglect.

    The pediatrician ordered me to start the Synthroid. I'm too scared not to do it, even though I loathe the idea and cry about it. The consequence of real hypothyroid problems includes brain development problems. How can I say "yeah I'll risk that."

    Truly, I feel like there is nothing wrong with my son, and that I don't need to put him on Synthroid. But I'm going to try it. If it changes him - if he has a bad reaction - I'm stopping.

    I feel like I need to talk to an Iodine doc. Someone who speaks doctor language. I need a second opinion.

    The treatment plan is probably going to be something like this: weekly agonizing blood tests and synthroid until the blood tests show improvement. If they never do, he could be on it forever?! If this is truly transient, hopefully this will all be over in days. Or weeks. Or months. Because nobody I've gotten info from so far seems to know jack about transient hypothryoidism.

    If it were me, no question, I wouldn't take Synthroid.

    This is why I didn't have a hospital birth - so I wouldn't be pressured to take drugs I don't understand, for reasons that sound terrible like "your baby might die!" whether there's a solid basis for that or not.

    And here I am, back to the land of medical hell.

    I've only had 4-5 hours of broken sleep, of course (I have a 4 week old). I'm still convinced Iodoral is good. Oh, and the pediatrician ordered me to stop taking Iodoral. GREAT.

    Any advice? Any tips on contacting Iodine docs?
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