no improvement on carbimazole after 3 months

[dryeye]

went to Endo on Monday. After 15 mg carbimazole for 3 months my numbers are unchanged. So have been increased to 15 morning and 15 night Has this happened to anyone else

[Tenko]

I have only just started taking Carbimazole but my consultant prescribed me with an initial dose of 60mg per day. My GP questioned such a high dose and contacted the on-call endo who said that was too high and the starting dose should be 40mg a day. Perhaps your dosage was too low? Did you not have bloods done during this time?

[dryeye in reply to Tenko]

thank you for your reply .I think you are right and my dose was too low.

[Fruitandnutcase]

If it is any help to you here is what happened to me when I started off on carbimazole.

I taking it in 28th November 2012 at TSH - < 0.03. (0.35 - 5.5 ) below low reference limit

Free T4 - 38.5. (10.0 - 19.8) consistent with hyperthyroidism - above high reference limit.

At that point I started 20 mcg Carbimazole daily

On 28th December 2012 after one month on 20mcg Carbimazole my readings were

TSH - < 0.03 (0.35 - 5.5 ) Below low reference limit

Free T4. - 15.6. (10.0 - 19.8)

My TSH hadn't moved at all although my T4 came down quite a bit. After the second reading I got a letter from my endocrinologist telling me to start taking 40 mcg a day.

By the time I got to see him for my first appointment at the end of the following February I had become hypo. TSH - 7.0. (0.35 - 5.5) FreeT4 - 10.2. (10.0 - 19.8)

At that point I started on 50mcg levo which was increased until I was taking 75/100mcg on alternate days until I stopped my treatment completely after my last visit November 2014

Hope that helps you.

[dryeye in reply to Fruitandnutcase]

seems strange that he upped carbimazole when you responded to the lower dose so quickly. I really wish they had to provide a list of reasons to justify their actions so we would know what is going on

[Fruitandnutcase in reply to dryeye]

I don't think I did respond all that quickly - my TSH was still exactly the same after a month on carb as it was when I started the carb. My T4 had moved a bit but obviously not as much as they wanted it to.

Looking back I think that if I had had another blood test a month after doubling up to 40mcg of Carbimazole they might have got me before I became under active which would have been better for me. But alas that didn't happen.

Did any of your numbers change or did they all stay exactly the same?

[Fruitandnutcase in reply to dryeye]

I don't think I did respond all that quickly - my TSH was still exactly the same after a month on carb as it was when I started the carb. My T4 had moved a bit but obviously not as much as they wanted it to.

Looking back I think that if I had had another blood test a month after doubling up to 40mcg of Carbimazole they might have got me before I became under active which would have been better for me. But alas that didn't happen.

Did any of your numbers change or did they all stay exactly the same?

[dryeye in reply to Fruitandnutcase]

I think they should do blood test monthly till you are where your supposed to be. By leaving it so long they overshot the mark with you. and I never left the starting gate. No my numbers all stayed the same

[Fruitandnutcase in reply to dryeye]

Exactly! I don't know why I was left for that length of time and back then I knew nothing.

[dryeye in reply to Fruitandnutcase]

are you still under active or did it go back up..only wondering because my dose has been increased significantly and I dont want to be permanently under, as it seems to be harder to correct than over active

[Fruitandnutcase in reply to dryeye]

No, once I started on levothyroxine I pretty much went back to 'normal'. I was tested about four months after I stopped my block and replace treatment (Carbimazole and levo, ) and my TSH had increased from 0.58 to 1.4 all on its own.

I am due to go back to hospital again in a couple of months which will be a year after stopping my treatment and I will have another blood test before I go back so I will be interested to see what is going on.

I agree, it seems to be harder for people who are hypo to get treated properly, overactive is so obvious but people who are under active have to put up with such a lot - being told to eat less or exercise more or being told they are stressed and many of them don't seem to be getting enough or the right medicines to make them feel better.