Looking for advice.

[hollyhobbi]

Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only 18 and has been on Neomercazole for 18 months already. She will be staying on it for possibly another 18 months. Has anyone else been on Neomerc for this long and did it work? My last TFTs were T4 : 13.67 and TSH : 5.29. Should I worry about this yet or is it possible it will settle down? Thanks.

[shaws Administrator]

I am not able to answer your question but am sorry your daughter also has a problem too. Members who have experience of Graves will respond when they read your post.

Your TSH is still high and the aim is a TSH of 1 or lower. When you give results we also need ranges. The reason being that labs differ and ranges are not identical in labs.

[hollyhobbi in reply to shaws]

Thanks Shaws. This is the first time my TSH has ever been up and I'm not on any medication yet. I am having more TFTs in a months time before I see the surgeon. I did only have hslf of the thyroid removed about 5 and a half weeks ago.

[shaws Administrator in reply to hollyhobbi]

I am sorry you had to have half removed so I sincerely hope you will have a doctor who knows how to keep you fit and well and provide the necessary optimum hormones for you. We have to read and learn and we don't need to know much but we will still be far advanced than most doctors or endos it seems to me.

[Valarian]

I think neomercazole is the same as /similar to carbimazole - are you in the UK ?

In the UK, carbimazole is typically prescribed for 12-18 months, but this leaflet btf-thyroid.org/information... suggests there is no problem with prescribing it long-term.

[hollyhobbi in reply to Valarian]

They are the same medicine. We're in Ireland. They want my daughter on it for so long because of her young age. Thanks for the leaflet☺

[Valarian in reply to hollyhobbi]

At least it improves her chances of keeping an active thyroid -and at her age, it's reasonable to hope for more effective drugs in the future.

[hollyhobbi]

At one stage she asked the consultant herself if she could have radioactive iodine as she took a good while to improve on the tablets but was told no. She wouldnt listen to me!

[melville999 in reply to hollyhobbi]

the thing with mums is you always realise your mum was right in retrospect.x

[melville999]

I had carbimazole.it worked ok on thyroid.please ask the doctors to keep a check on your daughters full blood count as it can depress white cells.it did mine and specialist didn't recognise it.Drugs better than radioactive iodine.

[hollyhobbi in reply to melville999]

We already had a bit of a scare when she was in Budapest recently with her friends! She had a sore throat, chesty cough, temperature and unexplained bruising on her legs! It was a nightmare trying to get a doctor to check her FBC. I told her not to take the Neomerc til she had the blood test done. Thankfully all was ok and it was just a chest infection. Her GP here is great and the hospital are always telling her if she has sore throat or high temp to come straight in for a blood test.