Staying on carbimazole long term is the option that allows you to keep your thyroid & the highest chance of it returning to euthyroid naturally but there’s always going to be a remission / relapse possibility.
RAI or surgery is highly likely to render you hypothyroid, but you won’t be managing hyperthyroid again which is preferred by doctors.
It is also possible to have stimulating Graves antibodies & for the immune system to be attacking thyroid. Either at the same time or later on. Those with Graves tend to have both antibodies going on. So it’s possible to have a period of hyper Graves & then over time to become hypothyroid naturally.
Carbimazole does not cause damage to thyroid, but temporarily lowers the production of new hormone - adjust the dose or stop the high levels would return.
I have seen some member say believe that carbimazole was responsible for permanent lowering thyroid after taking it for a few months, but in those cases it’s likely they had a transient rise from autoimmune thyroiditis. It was inevitable the thyroid would decline & carbimazole just hastened it.
Have your antibodies been monitored? Often it only tested for diagnosis or sometimes not all, doctors treat without looking at cause.
Positive TRAb / TSI confirms Graves, TPO and TG is present with both Graves & Hashimoto’s.
Hey there - going by the research papers I recently sent to you - I believe that in some cases of Graves Disease there is remission if enough time is allowed for this AI disease to calm down, and possible burn itself out with conflicting TR ab and TSI antibody interaction.
There are some Graves forum members who have a back up of an AT drug in the medicine cabinet . know how to read their body and when symptoms reappear - usually when facing a stressful period in their life - simply restart a course of the AT drug.
Otherwise their health appears as ' normal ' for them - neither hyper not hypo.
Others have a better understanding of Graves'. Two points. Grave's antibodies (over) stimulate the thyroid and so put it at risk. There is some evidence that selenium supplementation reduces Graves' antibodies and their effects, it's not conclusive but selenium does seem to help. I would take selenium if I had Graves' as it's cheap and safe.
Or is it only Graves’ treatments that cause Graves’ patients to become hypothyroid
Each person's journey with Graves is unique to them.
After nearly 8 years on Block and Replace I am now " HypoGraves" probably due to Blocking rather than Stimulating TRAb dominating According to Elaine Moore some Graves patients change to being Hypo which may be transient. I await to see what the next stage will be for me. 31 thyroid blood tests and about 20 changes to drug dose have been necessary to keep me feeling well.
Pretty much like how I've ended up after RAI thyroid ablation in 2005 but likely without the risks of this treatment option.
My TSH never recovered and I faced dose reductions of T4 in Primary Care where only TSH readings were run - and I became very unwell after around 8 years post RAI thyroid ablation - and thankfully found this forum while researching low ferritin.
I was refused both T3 and NDT in 2017/18 and now self medicate with NDT and much improved.
Mind you - the more I read the more I know I have been Graves - Hypo from a child - with only TSH readings that never rose enough to qualify for any treatment - my only new symptom at age 56, when diagnosed Graves was insomnia, which I realised much later, was caused by my being physically and verbally assaulted by a man I took on as my assistant manager 3 months earlier and I was going through the grievance process with my company who were as much use as a chocolate teapot.
I had a brief experience of hyper type symptoms whilst on the AT drug - had energy, lost weight, ate for England - and then as I remember things RAI was looming and afterwards I was put immediately on 100 mcg T4.
Thank you all for your replies. So it's somewhat of a waiting game to see how it progresses in each case. I don't have the blood test results at home but I know they tested the Graves' antibodies a second time around last autumn before I came off Carbim and it was still higher than they would have liked so they kept me on the Carbim a bit longer than originally planned. When I came off it it was a stressful time as I had a busy project that I needed to finish before I had major surgery (a prophylactic second mastectomy, I had bc in 2016). So perhaps in retrospect the timing wasn't great.
If you do take selenium as noted by jimh111 please be careful not to take too much, as studies show that supplementing above 400ug daily can be toxic.
I took 200ug daily whilst my TED was active (as studies show it can also help with mild/ moderate TED symptoms). I then reduced to a maintenance dose of 100ug.
Some people choose to eat a couple of Brazil nuts instead of taking a supplement. The selenium content of a Brazil varies from 50-90ug per nut, according to soil type. Do check the ingredient list to find this out if you choose to buy Brazil nuts.
I would avoid RAI if at all possible.For me and everyone is different and has different experiences with drs, I felt I had better care when under the consultant, now after being discharged and under GP its the labs which dictate whether T3 is tested and the GP doesnt seem to understand the importance of T3 testing. I am now hypo after having been hyper with Graves and agreeing to RAI.
Stay on the carbimazole as long as you can and dont be bullied/ pushed into RAI. Once its done it cant be reversed mores the pity.
I was allergic to carbi and put on PTU, the medics frightened me saying I could not stay on this medication indefinitely!
Wished I had been more proactive with my health, researched and not relied on the drs.
Being dyslexic didn't help back in 2004/5 and reliant on the medical section in the library and why Elaine Moore started her own research at around the same time as she found no references or sense coming from mainstream medical after her diagnosis and RAI thyroid ablation at the turn of the century.
I agree, stay on carbim as long as you can. I have graves, was on carbim for a few years, endo repeatedly tried to take me off it, kept relapsing. After one particularly awful episode (10kg weight loss in about 3 months, struggled to get blood test from gp, struggled to get anyone to look at test results (it was xmas), struggled to get new carbim prescription), I lost so much muscle mass I could barely climb a single step. It was terrifying. That, plus the potential nasty side effects of taking carbim, had me agreeing to radioiodine, naively thinking being on thyroxine would be better! I now have zero thyroid function, an ignorant gp, and no longer access to endo. I have hypo symptoms but bloods (tsh) are 'normal', so gp not interested. Usual story!
I was on Carb for 12M and now about 2 years med free but it went borderline
I'd like to know prognosis too! I am just told it can flare up again or it may not!
I have no idea what they will do if I am borderline again end of this month I don't really get symptoms but then I do often feel drained sometimes but have Bipolar too and stress anyway so how annoying is it to have conditions where one symptom could be either!
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I don't really get symptoms but then I do often feel drained sometimes but have Bipolar too and stress anyway so how annoying is it to have conditions where one symptom could be either!
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