What chance is there of relapse with a repeat tsh <0.01, ft4 19.9 & ft3 7.5 after a month of carbimazole which I have now stopped. Thanks

[Bumbles1000]

Chance of relapse

[PurpleNails Administrator]

There no way of predicting this. Usually treatment is 18 months plus and doses are reduced until 5mg or half doses are taken each day. Some sources quote up to 50% go into remission with this approach.

Firstly you must confirm what is causing your hyperthyroidism. Your previous post said you had tested tsh receptor ab 9.40. But you didn’t include a range. Do you have this? Then we can advise if this is positive. If it is positive then you will have a Graves diagnosis and your levels will likely rise without treatment.

Your other post also said it showed thyroiditis. If you have autoimmune thyroiditis you should have positive antibodies for TPO and TG. were these tested? Or have you had a scan?

Often thyroiditis does starts with transient hyperthyroid but ultimately you will become hypothyroid as your immune system damages the thyroid.

Carbimazole should not have been given if you have this condition as your levels would drop naturally & too quickly when on this medication.

Your levels were still high when you doctor advised you to reduce it but you decided to stop completely.

I think you need to repeat the thyroid function again to see where your levels are now and determine exactly what is causing your levels to rise. If it’s Graves it will rise continuously but if it autoimmune thyroiditis it will drop until below range.

If you do have Graves I doubt 1 month on carbimazole would be be long enough for reach remission.

[NIKEGIRL]

Hi. I agree with everything PurpleNails has said. She has given good advice for you. Personally and that’s all I can speak from. I have tried carbimazole and I have confirmed Graves and one month on carbimazole I did not reach remission. Kindest regards always NIKEGIRL

[Calliope62]

Hi there!

I had two false starts with remission due to coming off carbimazole too quickly. The third time I reduced really slowly over several months. Towards the end I was on a quarter of a 5mg tablet every other day. My patience payed off and I have been in remission for over three years now. Everyone is different, but the best advice I can give to anyone with Graves is don't rush anything. Best of luck!

[Bromly1]

From someone who still does not understand tsh and t4, all I can say is what is normal range for some is not for others.

Also yes I was on Carbimazole not once but several times relapsing each time I stopped taking this medication. Sometimes getting longer periods of times between symptoms starting up again. In the end I was on it for over two years with little to no improvement in symptoms at all. Hence I had iodine treatment to kill off the thyroid altogether. I still have some difficulties but less than I was. I now have A-fib which may have come from lack of B12 and folic acid. Not sure if they are related to thyroid just out of hospital. Sorry if that is not helpful but answered the best I could

[pennyannie in reply to Bromly1]

Can I suggest you dip into the Elaine Moore Graves Disease Foundation website if you haven't already.

I too have had RAI thyroid ablation for Graves back in 2005 - I thought I was " cured " only to learn Graves doesn't go away and needs understanding far beyond blood test results.

Elaine also had RAI treatment for Graves and started researching this poorly understood and badly trated auto immune disease herself when she found mainstream medical sadly lacking in their understanding of her situation.

Just realised we spoke 2 years ago before you were zapped !!!

[pennyannie]

Hey there again:

These blood tests are just 1 issue in Graves Disease and simply show your T3 and t4 levels are down in range and that the AT drug has worked :

If your antibodies are still high - you need to play for time - and possibly need a dose decrese in the AT medication if your levels of T3 and T4 fall too far and you experience symptoms of hypothyroidism.

It is essential that you not look to come off the AT medication or even think of remission until your antibodies have reduced down into range and your immune system response calmed down.

Recent research is showing that the longer one is on AT medication the better chance there is of finding this " remission " - and suggestes it could be years, rather than the 18 month window we generally see in a NHS outpatient department.

tPlease remember you are looking at an auto immune disease and your thyroid is the victim in all this and not the cause - the cause being your immune system response, and Graves tends to be stress and anxiety driven.

Elaine Moore has spent years researching this poorly understood and badly treated AI disease - and there is much on her website relating to the AI component of this disease for which medical mainstream have no answers.