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  • TSH Levels

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    Old 09-13-2007, 03:39 AM   #1
    jen00
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    TSH Levels

    Hi I'm new to this board and am hoping someone can help me out or at least reassure me that I'm not overreacting.

    My daughter was born with Congenital hypo... she's now almost 4 years old and in August her TSH level was 5.49. The pediatrician wanted to wait a month to see if her levels would come down so we repeated the labs last week. Now her TSH level is 10.31 and the dr. is out of town so another pediatrician called me and told me he sees no need to change her dose and that her levels aren't that high. I asked him to speak with the specialist and he said he would but that he's board certified and more then qualified to decide what her care should be.

    At this point she is not eating as much as she normally does and she eats a lot... also, she is losing more hair then normal for her and she's taking naps which she never does. In my gut I know the dr. is wrong but I'm not sure if maybe I am just overreacting. If anyone could please reply I'd greatly appreciate it!

     
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    Old 09-13-2007, 07:18 AM   #2
    mkgb
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    Re: TSH Levels

    A TSH of 10.31 is way to high. Have they tested her for antibodies yet? I am upset for you. I have a 4 working on five year old son and I would go ballistic at such indifference. Immediately request a referral to an endocrinologist with pediatric specialization or experience.. I would like to know what board certified the MD you talked to or if he was just certifiable.

    Even the 5.48 is too high. As of 2003 that American Association of Endocrinologist established a new accepted norm of 0.3 to 3.0, versus the older range of 0.5 to 5.5. New deliberations are on going about reducing the normal range further to 0.3/0.35 - 2.5.

    TSH alone is not sufficient to manage treatment. Are they testing the FT3 and FT4 as well? They need to. Do not settle. Go to a different pediatrician call and Endo yourself and tell the nurse your story. Do not wait or accept half hearted.. what I say goes when you can see and know your child is suffering.

    I will be praying and wishing you the best. Keep us posted.
    Sincerely,
    MG
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    Last edited by mkgb; 09-13-2007 at 08:51 AM. Reason: Removal of suggested testing

     
    Old 09-13-2007, 08:41 AM   #3
    midwest1
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    Re: TSH Levels

    If your daughter's doctors are not measuring her free T4 in addition to her TSH, she is not being treated correctly. Demand that she be tested to measure her free T4.

    According to Donald Zimmerman, MD, in an article written for Northwestern University’s Feinberg School of Medicine, in an infant or young child, TSH may or may not normalize with treatment; it may remain high even when free T4 is adequate. He says that the higher-than-normal value of TSH is acceptable when the FT4 level is in the highest part of the normal range in association with elevated TSH. (You will easily be able to find this article if you choose to look it up for yourself or her MD.)

    Your daughter is having significant symptoms, so you should presume that her free T4 is not as high as it needs to be. You may have to fight to get her what she needs - a free T4 test plus an increased dose if that level is not within the upper part of its range. But the fight will be worth it, because the result will be so devastating if her level isn't right for her. Do not accept a level simply anywhere within the range, because that will not be adequate for any but the rarest pediatric patient.

    I don't agree this time with MG that antibody testing needs to be done. Congenital hypoT is usually not due to antibodies, and the treatment is the same whether it is or not. So pick your battles; get the FT4 test before you do anything else.

    Please let us know what happens. The maltreatment of children makes me angrier than anything else, and I care deeply about what happens to those like your daughter.

     
    Old 09-13-2007, 08:48 AM   #4
    mkgb
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    Re: TSH Levels

    Midwest knows best. Thanks for replying, Midwest. I wasn't sure if Hashi's would have a different effect on a child or not, I have fixed that bit of advice. The information on the TSH levels with regard to the FT4 is invaluable.

    So scratch the TPOAb and TGAb.. they are unnecessary and will just mean more blood to be drawn.

    However the FT3 and FT4 are musts. Good luck getting the proper treatment.
    Sincerely,
    MG
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    Last edited by mkgb; 09-13-2007 at 08:52 AM.

     
    Old 09-13-2007, 09:44 AM   #5
    jen00
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    Re: TSH Levels

    Hi thanks for your advice! They did test the FT4 and it was within the normal range. We moved recently overseas so we're starting with new military doctors and it took days of calling them and pestering to get them to put in a referral for her to be seen by the endocrinologist (sp?) The pediatrician finally put in the referral and today decided to call her endro dr. back in Kansas for his advice. (The endro dr. here is in the hospital so he wasn't able to talk to him). In the end I got a call about an hour ago and because the dr. in Kansas said increase her dose it's going to happen. I'm so relieved our old dr. was willing to offer his opinion and help us treat her. She's just not been the same kid she normally is and it's so hard to not worry about her.

    I just wanted to say thanks for all your help! It made me feel better knowing that all of the fighting I was doing wasn't for nothing

     
    Old 09-13-2007, 03:38 PM   #6
    midwest1
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    Re: TSH Levels

    I'm so glad she will get the increase she needs! Thanks for letting us know what happens. Best of health to your little girl. She's very lucky to have you looking out for her!

     
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