Hello I am hoping that someone can help me. My daughter is 4 years old and was diagnosed hypothyroid when she was 2 years and 2 months. We were living in france at the time. her symptoms were frightening she couldn't walk couldn't talk was constantly asleep seemed to hate the world around her. She was put on ndt (erfa) and although she still has many problems due to the non diagnosis of her thyroid from birth her quality of life did start to get better.
We returned to the uk where she has various diagnosises hypothyroid and autoimmune thyroiditis autism hypermobility sleep disorder. Things have ticked along she has an endocrinologist who is pretty useless I have always felt she needed more medication but apparently her tsh tells him otherwise. She is freezing cold and I do mean freezing all the time. She is severely delayed so can't really tell me about how uncomfortable she is.
Three weeks ago she managed to get hold of my thyroid pills erfa 60mgs and there were 250 tablets missing.i took her to hospital where they did nothing for her kept her in a and e for 5 hours before admitting her onto the ward. Where they took a further 8 hours to get blood results back. Her levels were off the scale. They heart monitored her of a fashion as they couldn't keep the Monitor on and we were sent home 2 days later. Her hair started falling out.
They have taken weekly bloods since to check her levels. Last week her levels of t4 had come down to 89. This week it has dropped dramatically to 12.4 that is less than before she took the tablets. Doctor rang me to say as TSH is still suppressed he will not be restarting her meds and would rather throw her into hypothyroid and then restart. This doctor pays no attention to t3.
Everyone that cares for Isis has reported a marked improvement in her since her levels have been higher. For the first time she has been warm and alert and speaking so much this is a child that is normally virtually non verbal limited understanding. She has been so cold in the past she has three layers including a jacket on for bed and is still cold.
I am at a loss what to do. This endocrinologist has no idea of just how Ill my little girl was when she was hypo and seems completely unwilling to listen to me. Her results yesterday were tsh <0.01 and free t4 12.4 he said her t3 was low but didn't give me figures. He says all he is really concerned about is TSH and until that is in normal range he will do nothing. Given on how much her levels have dropped in a week I am besides myself does anyone have any advice. I'm in Lincoln.