I was diagnosed with Graves in December 2020, this caused AF so medicated for both successfully. Eventually down to 5 mg of Carbimazole and no other meds. Feeling good and then Tom by Endo, I would need to come off Carbimazole to see if I was in remission.
Bloods on 5mg TSH 1.34
Bloods after 8 weeks without Carbimazole TSH 0.74
Bloods after 14 weeks without Carbimazole TSH 0.68 T4 14.9 T3 4.6
My worry is that I could be heading back to hyper again and told option would be RAI
I just don’t understand why if a dose of 5mg of Carbimazole was keeping me stable that that can’t be a long term treatment.
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Boaby
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I don't know much, but I am kind off in the same situation as you. I think in the UK, their standard protocol is give you RAI. The endocrinologist I am seeing keep bringing it up, one of the reason I have been told is side effects etc. In the case you have RAI and becomes hypo, the medication they use (the hormone replacement) have less side effects. But yeah I don't know to be honest.
Prior to not living in the UK, endocrinologists I was seeing never mentioned it though.
See replies to this other post . . it is explained on there about the potential for side effects of carbimazole and why UK endo's push most people to have RAI .. It usually has nothing to do with potential side effects of carbimazole, and has everything to do with getting people off the (expensive) endocrinology list for monitoring hyperthyroidism, and onto the (cheaper) GP list for lifelong hypothyroidism treatment.
Basically , it CAN be a long term treatment (unless you have a bad reaction to it ) .. they just don't tell you , or offer it ., instead they push people towards either RAI (or thyroidectomy) to get them off the endocrinologists list and ( when they eventually become hypothyroid afterwards) then they will be treated with Levo on the GP list ( which is much cheaper for the NHS)
What is the lab range for those fT4 / fT3 tests ? .... if it's [12-22] and [3.1 6.8] then your fT4 / fT3 levels look ok at the moment, so don't panic just yet .. you may well be fine. TSH can take a while to settle down , and may stay a bit low anyway after Graves , it's really the fT4 / fT3 levels you need to keep an eye on .
(You always need to include the lab ranges for the tests you had as they can be different depending in which method/ lab was used . eg some fT4 ranges are [7-14] which would mean your fT4 is a bit high)
If your Graves does relapse and your fT4 / fT3 levels go too high again then you do NOT have to accept RAI .. you can decline it and ask to go back on Carbimazole again.
(If you are hyperthyroid and decline RAI / thyroidectomy they have no choice but to prescribe carbimazole)
The replies on this other post running currently will provide some useful reading / references for you to look at . healthunlocked.com/thyroidu... "stopping-carbimazole-will-overactive-thyroid-come-back"
There are risks of a bad reaction associated with carbimazole , but they do not get any greater the longer you are on it . And there is also evidence that the longer people stay on carbimazole the greater the chance of Graves going into remission . The 18 month time limit for Carbimazole is really just something NHS use to deal with people in a quick and efficient manner .
P.s Are you certain it is Graves caused your Hyperthyroidism ?
unless the antibodies that cause Graves (TRab ~Thyroid Stimulating Hormone Receptor antibodies ) were tested 'positive' , then don't just assume it is Graves, as Endo's sometimes just assume it is Graves , without actually checking .
These antibodies may also be tested for using a test called TSI (Thyroid Stimulating Immunoglubulin)
My advice would be the same as my reply on the link to post tattybogle added.
The risks on carbimazole are quite low but doctors over emphasise them and are in a ‘rush’ to remove the potential of hyper permanently as it’s easier (and more cost effective) plan over all.
Giving you the one option of RAI. Sounds like a decision been make for you without options or discussion of them.
Your options are carbimazole long term, RAI and you should also have option on surgery.
Take your time to research, you might ultimately decide RAI is the best option but you need to be comfortable and not dictated or pressured by doctors.
My endo nurse sounds really good as she says I am still borderline it does not mean I will relapse yet, and actually my TSH is 0.05 better than last time I am still med free with a view that it could be settling down. Like you I am concerned it could go high again but I think there would have been a bigger change if so
(I am now 6 months med free from Carb)
It really is just a waiting game, for myself there is a plan of meds if it does go high again as the radioactive one would mess with my fertility. I don't think they can force you to have the iodine treatment I would be inclined to wait as it may settle down
It is an option to stay on a low dose forever. I pressed my endocrinologists for answers and they have all affirmed this.I have refused to have RAI treatment.
As someone else has said here, it takes a lot of tweaking to find the right, long-term dose. More work for the endocrinology team. But it is definitely an option.
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