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Old 02-22-2010, 04:21 AM   #1
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Join Date: Nov 2008
Location: Bristol, VA
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Karren26 HB User
Hashimoto's Encephalopathy

t has been a long time coming but we finally truly are sure what has been wrong with Hailey. She went from high functioning and happy to withdraw, hallucinating and homebound the last two years from school. 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. Read other threads I have posted on the last year to get more info on what has been going on with daughter.

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 and even autism. 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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