I was on carbimazole for 5 years. Initial dose 40mcg daily then maintenance dose of 5mcg daily. During this time I had 3 trials of coming of carbimazole bat relapsed each time .Some endocrinologists are happy leaving a patient on a low maintenance dose while others insist on definitive treatment. Mine was one of the latter .
I never felt fully well on my maintenance dose so agreed to have rai and became hypo.
you need to be aware that the main reason they push RAI so early is because it get's you of the (more expensive) Endocrinology consultant list with more regular testing as a hyperthyroid patient, and onto the (much cheaper) GP list as a hypothyroid patient (£20 worth of levo and one blood test a year)
personally i think it's bordering on criminal to destroy the thyroid without first waiting to see if Graves will go into remission and stay there after a reasonable period on antithyroid medication .
'a reasonable period is usually considered to be 18mths .. and some recent studies show that the longer the patient stays on antithyroid drugs the better the chance of achieving remission .
fine , if there is no alternative eg for those patients who can't take antithyroid drugs due to having an adverse reaction , and who don't want or can't have surgery , then RAI has it's place.
But pushing permanent hypothyroidism on people so soon, just because its (cost) effective.... when they know full well that at least 15% of patients on levo do not do well ?? , and thye know that getting any other treatment from the NHS such as some T3 to go with the Levo (T4) is incredibly difficult (and in some post codes is currently impossible)
i can totally understand you saying it would be nice to get it sorted , and treating hypothyroidism sounds so simple , and it will be portrayed to you as such by the endocrinologists suggesting RAI ........however this forum has had about 27,000 new members needing help since i joined in early 2020, most of them for problems with treating hypothyroidism .
Yes there are undoubtedly plenty of people who do very well on levo after RAI ... and there are one or two of them on here , but you will also find quite a few people on here who regret choosing RAI deeply.. and a lot more who feel they were railroaded into it without full information .
i've never had graves but if i did, and if i could function ok on carbimazole or PTU,,, i'd be wanting to try 18mths on those before trying to come off very carefully IF my TRab were nice and low .. ( if TRab were still high i'd want to stay on for longer until hopefully they came down )
because once you've lost your thyroid it's gone forever., and you'll never again have the potential to make your own 'ready made' T3 , you will have to rely totally on conversion from T4 .
RAI will nearly always result in hypothyroidism eventually .. some endo's seem to be giving patients the impression it doesn't and they may be euthyroid again.. well it might not result in hypothyroidism within 6 months but ask them how many are hypo within a few yrs.
The members who have more direct experience of hyper treatment than me will no doubt be along soon ... including the odd one or two who are very glad they had RAI. .....in the meantime there are some useful replies from them on this post :
Completely agree with Tattybogle. Don't be rushed into RAI. Get stable on your carbimazole. The endo will try and take you off carbim at some point to see if you remain stable (I always relapsed). Eventually I went for RAI thinking it would get it 'sorted'. It doesn't. It swaps one problem for a (worse?) different one.
‘personally i think it's bordering on criminal to destroy the thyroid without first waiting to see if Graves will go into remission and stay there after a reasonable period on antithyroid medication .’
How are you feeling now? Did you have symptoms when diagnosed ? Are you well now & stable on carbimazole?
It looks like your FT4 is low & only just in range but your FT3 is higher in range. Some feel ok with low FT4 provided FT3 is good but others feel unwell with an unbalance.
Were you started on a higher dose of carbimazole and tritiated to lower dose?
I was offered RAI early on, (at 1st appointment) although my hyper isn’t autoimmune & isn’t considered potential for remission as with autoimmune.
I delayed as wasn’t comfortable with RAI and intend to stay on carbimazole long term, over 4 years now. Monitoring hyperthyroid patients by hospital consultants is expensive & my specialist told me they were only willing “to keep me on the books” if I were agree undergo RAI soon, as I wouldn’t & as I’ve been stable I was discharged for GP monitoring.
If your instincts stay it’s too soon your doctor can’t compel you to agree. We hear of examples where it is implied there is no option & they assume you will comply but ultimately you decide how you are treated.
We now have research detailing that RAI offers the worst Quality of Life - and research suggesting the longer the patient stays on the AT thyroid medication the better the long term outcome for the patient :
Why not not take copies of these 2 medically recognised research papers to your next appointment and ask both your doctor and endocrinologist for their thoughts ?
With Graves we are looking at an Auto Immune disease for which there is no cure - and the issue is one of your immune system having been triggered to attack your body rather than defend it - and quite why this has happened to you now, is the 64 million $ question.
Generally speaking Graves tends to get diagnosed when your immune system attacks your thyroid - as the thyroid is a major gland, responsible for your body's synchronisation of your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Eye issues cab also be involved - sometimes Thyroid Eye Disease is caused by the RAI treatment. How are your eyes - dry, gritty, watering, light sensitive - please ensure that if you are using any drops, lotions or potions that they are all Preservative Free - even those prescribed by the NHS and if already with eye issues - RAI will likely exacerbate the situation and should not even be considered as a treatment option and " off the table ".
In theory the quickest easiest solution for the hospital is to flip you from being with an overactive thyroid to being with an underactive thyroid with RAI being the cheapest option.
It's just a 15 minute appointment in Nuclear Medicine and then you are immediately discharged back out into primary where it is believed hypothyroidism is better treated by your doctor.
It sounds good as the only other definitive option is to slit your throat open and physically remove your body's engine.
RAI is a toxic substance that slowly burns out your thyroid in situ.
RAI Primary hypothyroidism is known to be more difficult to treat.
RAI is taken up, to a lesser extent, by other glands and organs in the body.
There is an increased risk of cancer of the small bowel and breast.
And so it goes on.
Graves is a poorly understood and badly treated AI disease by mainstream medical :
Treatment is primary care is woeful - there is just 1 main treatment option readily prescribed for hypothyroidism whether you have a thyroid, or not, and if that doesn't work for you - you will need to go privately - or like many of us - me included - a pensioner aged 76 - source your own full thyroid hormone replacement, self medicate, and get yourself as well as you can.
Details on my Profile page - just press the icon alongside my name if interested :
I was on carbimazole on and off for several years, but always relapsed very quickly - within weeks. I had RA and have been fine since then (2013) on 100/125 Levo on alternate days
Thanks to everybody for your experience and comments.
Just to say I'm not being pressured to have RAI, it's been offered. Surgery's been mentioned too, for completeness, but nobody's cutting my throat in the forseeable.
I think I'm now better equipped to discuss my situation with the endocrinologist.
Even more so if I can get my hands on the full Torring, Watt et al paper on quality of life.
Well I'm sorry we can't give you the whole 9 yards but think there is enough there to open a conversation if push comes to shove down the road.
What was your original TSH, Free T3 and Free T4 readings and ranges at diagnosis and the TR ab reading and range please.
There are just 2 Anti Thyroid medications so if the Carbimazole doesn't suit you well ask to be switched to Propylthiouracil - PTU :
Do you have the PIL information leaflet and know what to look out for ?
All the AT drug does is semi-block your new daily thyroid hormone production and slowly your T3 and T4 should fall back down into their ranges and your AT dose titrated down as if your T3 and T4 continue to fall too far through the ranges you risk feeling the equally disabling symptoms of hypothyroidism.
It's a bit like an aeroplane being put in a ' holding position ' while waiting for a landing slot and if your antibodies are still positive there is little point thinking of ' finding remission or Nemo ' and there is no quick fix to an AI disease -or for your immune system to calm down.
When metabolism is running too fast as in hyper or too slow as in hypo the body struggles to extract key nutrients through food no matter how well and ' clean ' you eat.
It is important to maintain a strong core strength to carry you through this phase of immune system disruption and suggest you ask for your ferritin, folate, B12 and vitamin D to be run and we can advise where these need to be within the ranges to support you through your current health issue rather than compound things further.
I was diagnosed with Graves’ Feb 2021 and was treated with a method called ‘Block and Replace’. Firstly, I was given carbimazole 20mg each day and when my thyroid levels went low (around 8 weeks later) and I felt some symptoms the Consultant prescribed 50mcg of Levothyroxine alongside the carbimazole. If my levels went too low I upped the Levothyroxine. Sometimes I went a little too far the other way and was over medicated with Levothyroxine so I dropped it down. It took a little while to find the right balance but by doing it this way it stops the yo-yoing and keeps the thyroid more stable whilst trying to let the immune system calm down. I also took 200 mcg of selenium a day to help with reducing the antibodies. I stayed on this regime for 18 months even though the endocrinologist suggested only 12 months. I wanted to give it the best chance I could to settle down. I came off all medication in October 2022 after requesting another antibody test (which was normal) to make sure I had the best chance of not relapsing and I’m still doing ok now with no relapse.
I wish you well in whatever decision you make. It’s not easy but being the best informed that you can be helps enormously when conversing with medics.
I completely agree with Tattybogle,I was told I had to have rai treatment which would bring my thyroid back to normal, what a lie , I don’t think this forum was on the go when I was told that 30 years ago but also I didn’t have an iPad so wouldn’t have known about it anyway, I had the treatment and my first visit back to see endocrinologist, I was so frightened as I felt absolutely awful cold hair falling out , I sat there thinking now what if he says everything is ok , and that’s just what happened as he was looking down at papers I just burst into tears he took hold of my hands then said I can tell your not right and sent me for blood tests , I’m still now trying to get my act together after all this time , so I would really take your time about what you do , hope that’s helped a bit for you , good luck for the future,
My aunt was diagnosed with graves 6 years ago and was treated with carbimazole with the dose gradually tapered down.
She gets her TSH and T4 measured twice yearly. Takes all the thyroid vitamins and minerals and has been well ever since. Not even on Levothyroxine as she’s not hypo
I have been catching up with posts on the forum and came across yours.
I have to say that it is far too soon to make any decision on definitive treatment. It may not seem that you are not being pressured into RAI treatment but it has already been mentioned to you. It is their way of slowly pushing you in that direction - I speak from experience
I truly regret putting my trust and health in the hands of the NHS Endos I was so called being treated by. If only I had been more proactive and found this forum I would not be in the situation I’m in now. I would never have agreed to the destruction of my thyroid.
Take your time, wait to see how you get on with AT treatment before making any quick decision.
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