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Diana64 01-19-2010 02:34 AM

TSH increased
Hello dear parents!

I'm from Germany. My son ( 7 years) has a Down syndrome. His blood results recently showed that his TSH is 6,3, which is too high- normal would be less then 5. Other thyroid hormons are normal. The doc said to me, my son don't need any medication, because children with DS in many cases have increased TSH level without having hypothyreodism. I can't find my peace with this answer, because myself have a Hashimoto and I also had increased TSH level for few years, ( which was ignored by the doctors) before the real hypothyreodism started. And my son has few of the typical symptoms- he is growing slowly, he has very dry skin, he is very sensitive to cold temperatures and he is very tired in the morning and also in the evening. I'm afraid about his mental development, because he is such a clever and activ boy and I don't want that he miss something due to the thyroid disfunction.
Do you know this problem? Do your endocrinologists also have the opinion, that children with DS don't need medication if they have increased TSH level? I know that "normal" children" would get the meds immediately.
So, why not my child? Because he is already mentally retarded??
Sorry, I'm quite emotional, but I'm worried about my son, specially because I have Hashimoto, which wasn't diagnosed for years, so I have a hard way behind me and I want to spare it to my boy.
Our doc is a specialist and a pediatric endocrinologist, but he wasn't really helpful for us, so now I would like to hear your opinion.

Thank you and have a blessed day!

Karren26 02-22-2010 05:01 AM

Re: TSH increased
It has been a long time coming but we finally truly are sure what has been wrong with Hailey. She was diagnosed three years ago with hypothyroid and blood work was done including the thyroid antibody test. The antibody test was extremely high and was not brought up at that time. As my previous posts the psychosis started about six months after she started on synthroid.

Long story short two months ago I finally found a hormone doctor that was willing to see her at 14. Well, he did blood work with all female hormones, which we do see him today, but a month ago he said he had no idea how she had a period and that estrogen and progesterone were extremely low. I had noticed this last year breast development had stopped. She is lopsided and looks like they do when they first start growing. The major issue here is that the thyroid antibody test was done and the lab range is 0-60 and Hailey's is 4973.6!! This indicated Hashimoto's but looking into it further there is a Hashimoto's encephalopathy that is rare and causes psychosis, and or neurological problems. Please look this up. There are several cases of Down Syndome and this disease. People like us have it and are diagnosed with dementia and Alzheimers. It can be life threatening which scared me to death due to the fact that her doctor she had three years ago let the high numbers slide past and this was when she was still high functioning. It is treated with predisone. Hailey will be going to Duke University to see a doctor there that treats this and has done research on Down Syndrome with Hashimoto's Encephalopathy. Most doctors do no know anything about this, her primary is willing to learn as we move forward with this. Please read up and pass on this knowledge to you support groups.

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