Experiences with overactive thyroid/carbimazole?

[Worrier3]

Hi all, I wanted to hear people's stories about their experience with having an overactive thyroid - specifically how long did it take your thyroid levels to go to within normal ranges on carbimazole?

I was diagnosed in February with a T4 of about 70 and was put on 30mg carbimazole. I had a follow up blood test a month later and T4 levels had halved but were still high. Around that time I had a consultant appointment and he told me to stay on the same carbimazole dose and booked a second appointment for 2.5 months after the first appointment. I guess I'm worried because I've read that it takes about 4-8 weeks for thyroid hormone levels to decrease to normal levels on carbimazole, it's been 10 weeks and I still feel like I'm hyperthyroid although I haven't had a blood test. Also isn't 3.5 months a long amount of time to be on a high dose of carbimazole? What if my levels go to normal before my next appointment? I just don't understand why it's taking my body so long for thyroid levels to go to normal when it seems to happen within weeks for everyone else. It doesn't help that the doctors don't know what's caused this - it might be Graves but apparently in some test results my receptor (?) levels were only slightly elevated, also I was told to book an ultrasound but can't get an appointment for several weeks so that adds to the uncertainty and anxiety. I'm hoping someone can tell me something positive please!

Hello there, fellow hyper-thyroider here. I’ve been hyper with Graves for nearly two years now and yes it does take several weeks for things to settle down. You should be getting blood tests via your GP/consultant every six weeks or so to monitor how things are going. Should being the operative word, I am lucky if it’s every three months. Are you signed up with HealthUnlocked healthunlocked.com There is a whole section devoted to thyroid issues and lots of very expert contributors. They are happy to advise and reassure other people so well worth getting on the email list with them. I notice you mention you may have Graves. One of the contributors to that is stress so try not to mirror your username and worry too much about it all

Thirty is my maintenance dose

I've had this temporary condition over twenty years no-one has ever given me an ultrasound or anything other than a yearly blood test

Good luck

Err what @Theunamedcat ?? That's mad. Surely they've given you a thyroid ultrasound or iodine tracer test?

It’s a very individual journey and that is what makes it so difficult. There will be some people who stabilise quickly, others go for surgery etc and then Stabilise and some of us never do.

just keep a diary of how you’re feeling, your results and dosage, don’t get disappointed if things don’t go the way they are “supposed” to do.

It’s about finding the balance where you feel at your best, the blood results don’t always equate with feeling well, some people get in range and are still symptomatic and others can be still not in range and feel great.

but please don’t worry about it.

if you’re coping with carbimazol, then life will eventually get easier.