DD's hypothyroidism.

[maighdlin]

My DD has congenital hypothyroidism. She has been taking thyroxine since she was 2 weeks old. She is now 20mo and is currently taking 50mcg daily. She recently attended the hospital and her T4 levels are 16.5pmol/l which is high enough but her TSH level was 15.702mu/l, which is quite high. The doctor, a new one, suggested that we were not giving her the medicine properly or at all. I was furious by this as she has had her medication every night before she goes to sleep with out fail since she started taking it but thats a whole other thread.

I am quite worried about the high TSH levels, given that her T4 levels are at the high end of normal. After committing the worst sin and googling TSH levels, i came across something which said that there could be a problem with her pituitary gland. Whilst normally i do take things on google with a pinch of salt, this has me worried as two of my three sisters have pituitary adanomas.

Does anyone else have experience with this? Congenital hypothyroidism is not common and its hard to find out information. I want stories telling me it all works out fine in the end desperate to stop her brain going into meltdown

[IwishIwasmoreorganised]

I know it's not quite the same, but I've recently been diagnosed with autoimmune hypothroidusm and was told by my consultant that thyroxine should be taken on an empty stomach at least 1/2 hour, preferably 1 hour before food because certain vitamins and minerals can inhibit its absorption.

Maybe the Dr meant that your dd's thyroxine might not be being fully absorbed if it's not being taken in the way that my consultant suggested?

[IwishIwasmoreorganised]

BTW - ThyroidUK are a brilliant source of information.

[maighdlin]

thank you. the previous consultant who diagnosed her was the one who suggested giving it to her before bed time. it just gets so confusing with one doctor telling you one thing and another doctor another! all her previous tests have came back fine, once a month for the first 6 months then 3 monthly.

[IwishIwasmoreorganised]

Is this a new consultant that you saw or just another member of the same team?

It might be worth ringing the consultants secretary and leaving a message outlining your concerns, or e-mailing the consultant if your know the address rather than worrying until your dd's next appt.

[babysbreath]

Hi, my dd takes thyroxine, and I've tried to help another mum on another thread. My dd has been taking the medication since she was nine months old. She is on 50mcg and I've always given her tablets not the syrup. She now takes the tablet whole, but when she was tiny I use to crush the medication and mix with water and give it to her that way. I always give her the medication first thing in the morning before food. Please ask me any questions and I will try to help.

[IwishIwasmoreorganised]

My consultant also said that it's absorbed more effectively if you crunch it up before swallowing it. I didn't mention it before as I didn't think a 20 month old would be able to do that - hadn't thought about crushing it