Down's Heart Group

Low thyroid

My daughter who has Down syndrome is 15 and has had regular thyroid checks throughout her life, firstly via the NHS protocol for our area and latterly via our GP, as I became concerned. The results, including the ones via the GP were always "low but not at a level to treat yet". Yet towards the end of last year she became very low, was tired all the time, and suddenly and alarmingly her hair began to fall out. I'm sure many parents will have had the experience of not being believed when telling a nurse or doctor "but s/he's not usually like this". The hair loss, though, was something they could see and felt ready to act on, so it was a blessing in disguise. Despite the fact that her levels ware still "low but not at a level to treat yet", she was put on a low thyroid dose, which has subsequently been increased. Only a few months later, I have back my lively, happy girl and she has back her hair (though the new bits are short as yet, of course).

I write this to encourage other parents to persist if results of blood tests seem OK but you know something is wrong. It's so easy to put things down to "being a teenager" or something.

How can we help medical professionals to know that 'sluggish' isn't a natural state for anyone in good health, and that includes people with DS?

2 Replies

hi my daughter has had regular tests and is now nearly 18 you have promted me to remember that if she is sluggish this may be a sign.


DSMIG state "Whatever the results of screening tests clinicians to have a low threshold for testing if clinical suspicion at any time." Blood tests alone really cannot be taken without consideration of other symptoms.

I had Graves disease (now in remission) and was always told that I would eventually go underactive but blood tests show that whilst my levels are falling, clinically I am not hypothyroid. However, I was finding myself getting very tired, especially after lunch, but what really made me visit the GP was my finger nails feeling very dry. Fortunately my GP listened and when I mentioned the nails he asked about my skin and I realised that is also drier than it used to be, so we are trying 3 months on the thyroxin and I have to say I can feel the difference.

So I would agree, watch out for signs and push for investigation, I knew I felt different but put up with it for ages, so for our youngsters it may well be really difficult for them to explain how they feel and they will not be diagnosed without the vigilence of parents and carers.