Hi, I’m new to this forum and seeking people’s view on my position... I’ve had an over active thyroid since I was 19 I’m now 43, I just have carbimazole ( varying dose depending on if I’ve had a break) currently on 20mg. I’ve spent my whole adult life feeling absolutely fine, just taking 1 tablet a day with no problems. HOWEVER, now my endo doctor seems to want me off the books and is kind of pushing me into radio iodine, I really don’t want to do this right now, I have children and work and with current climate also, it’s not something I’d want to happen yet. I’ve cancelled my appointment at the clinic for the radiation and I’m expecting a backlash from doc.... I also think I’ve been fine for this long why change it???? Wondering if there’s anyone else that’s been long term with it?
If it ain’t broke?????: Hi, I’m new to this forum... - Thyroid UK
If it ain’t broke?????
Long term carbimazole affects the efficiency of subsequent I-131 treatment. This download paper could be shown to your doctor
Indian J Endocrinol Metab. 2015 Jan-Feb; 19(1): 84–88.
doi: 10.4103/2230-8210.146865
PMCID: PMC4287787
PMID: 25593832
Long-term carbimazole pretreatment reduces the efficacy of radioiodine therapy
C. Shivaprasad and K. M. Prasanna Kumar
You can download that here: ncbi.nlm.nih.gov/pmc/articl...
I would have a look at Elaine Moore's site she had RAI and then regretted it.
Also I have come across people who have been on Carbimazole for years and as long as they have regular blood tests they are doing fine.
Have you ever tried for remission?
If you did need to come off the tablets a partial thyroidectomy would seem more appropriate, not that I'm suggesting it. Seems that they are just trying to reduce their work load, unethical.
I have had spells of being taken off then it returns so resume carbi, I’ve had doctors say it probably wouldn’t work and I once asked what would happen if I stayed on tablets and doc replied with the thyroid would just burn itself out at some point. I don’t suffer at all only when it’s returning on no tabs.... I think if I’m not suffering with it and it doesn’t affect me on a daily basis then why change what I’m doing? I just feel like I’m going to get it forced onto me.
When I first saw an Endocrinologist 10 years ago the first thing he suggested was having my thyroid removed or RAI. I am so glad I ignored his advice and kept my thyroid because I have seen how other women have struggled to get the right treatment afterwards. At the moment I am taking nothing just vitamin D spray. My TSH is lowish at 0.38 and my T4 is 22.7 so top of the range but my T3 is well within range. I feel very well at the moment and I intend to keep hold of my multinodular goiter for as long as I can. Luckily I didn't get this until I was 48 and I am 60 now so hopefully this remission will last longer than 4 years like last time. What I do know is stress can make my condition worse as can coffee and alcohol.
Hello Cat_lady and welcome to the forum :
Well done you and I just wish I knew back in 2003 what I do now as I certainly wouldn't have been compliant, believing the doctors know best.
Professor Toft the eminent endocrinologist wrote a very good article in 2017 regarding the current situation we find ourselves in : Entitled :- Thyroid Hormone Replacement - a Counterblast to Guidelines and it is on this website somewhere but apologies, I can't do cut and paste unless it's with scissors and glue !!!
From which I quote :-
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "
The whole article is totally relevant - I'm with Graves having had RAI back in 2005 and become very unwell some 8 years later : I now manage lingering Graves, thyroid eye disease and hypothyroidism and am having to source my own full spectrum thyroid hormone replacement as I was denied both NDT and T3 thyroid hormone replacement on the NHS.
You can download the Counterblast document here: rcpe.ac.uk/sites/default/fi...
Thank you -
I have it in paper form for myself, as are my book marks, as my computer skills are nonexistent ;
Hey ho !!!
I feel a lot better having heard what others think, Thank you all for your views and research, I have to admit I’ve not looked into it much I just had a tablet a day and kept fit and got on with life, I will certainly delve into all this more as I’m getting the notion that maybe most doctors are pushing people into the wrong treatments, my family fully support my decision, My oldest son ( during my pregnancy with him I was diagnosed) has reassured me and thinks like me that it could mess things up and that if he thought I was struggling and needed to take action he would be the first to tell me.
Yes, you may find that you do need to become your own best advocate :
If well on the Carbimazole, which you are, I can't see a problem.
I was told at my very first hospital appointment that I would be having RAI the following year as Carbimazole was too dangerous to stay on.
I was well on this AT medication and giving options I would have preferred to stay on them.
After all, you are still on life long medication after RAI anyway, but no doubt it gets you off the hospital O/P waiting lists and onto less expensive medication and virtually no support in primary care.
Sorry if I sound cynical :
Not at all, I appreciate your views, I can understand how they need to get the numbers down... there’s people with numerous problems that are suffering to get through most days that they keep fobbing off then they push the ones that don’t need much (or at least the bare minimum) help.
I can't offer advice on the carbimazole question, since i've never been hyper. But from the point of view of someone who has been hypo and treated with Levothyroxine for 20 yrs, i would caution very strongly against choosing to end up without your own internal supply of thyroid hormones, unless you absolutely have to do it for medical reasons. I am one of the 15 % (minimum!) of hypo patients who's quality of life is not restored by Levo, and my kids dearly wish they could have their 'proper' mum back , but i can't work enough to pay my bills without their help nowadays and i'm only 54 and they are only 29and 22.
If you are fit and working and able to live your life , you should guard this position with your life. The current NHS system of thyroid hormone replacement can offer you no guarantee that you would not end up in the same 15%, and if you were unfortunate enough to not feel ok on Levo they will just hold their hands up, look at you quizzically, and say " but everyone else is fine on it, do you think some antidepressants would help ? "
And T3 and NDT are not an easy fix for everyone either, or there would not be so many members here .
I've read that RAI is now the 'preferred option' for treating hyper, but i'm sure a huge factor in this is the economics of appointments and follow up costs of carbimazole monitoring , compared to the one off over and done with approach of RAI. And it seems to be being pushed as an option as soon as possible on even newly diagnosed hyper patients . So i think we can interpret 'preferred option' as 'preferred by the accountants.'
I think your son is on the right track ..." if it ain't broke, don't fix it"
And i would add to it "beware of men in white coats saying 'just take this little pill and everything will be fixed' "
Thank you for your honest opinion, it’s definitely opened my eyes as I thought people on here would read my post in horror saying “jeez woman you can’t be on it that long have the treatment already “!!
I can’t believe so many people are having a rough time on the other side of it, it’s not right, you’d think there would be a better more definitive treatment for it.... I was told it would go to hypo but I’d just take a hormone pill and be ‘normal’.
They don't like to admit we exist 
in fact, if you tell them you've talked to us they might start looking at you like you're imagining thing's too....... but there's 111,805 members on this forum today, when i found my way here in January this year there were only about 107,800..... so if we don't exist there's something really 'funny' going on.
Yes I have a feeling if I ever mention the word ‘forum’ they will shut me down completely! I’m so glad I found this place, I never really put much thought into any of it though.. only when they start trying to stress me out with having to do the radio iodine it reminds me I have a condition. I’m picking up lots of useful info on here.
I think RAI has always been the first " preferred " treatment option : and yes I took this to mean it was in my best interests as I believed my quality of health was the topic under consideration.
I believe my age at 56 was the deciding factor in my treatment, as to have an RAI appointment booked 15 months in advance from my very first endo appointment shows how much thought went into my doses of AT drugs over that period.
RAI is the cheapest option, and just a 20 minute appointment and a discharge back out into primary care.
RAI is a toxic substance that slowly burns out and disables your thyroid in situ and RAI is also taken up to a lesser extent by the gonads, parathyroid, salivary, pituitary and adrenal glands and skeletal muscle and the affects of non-thyroidal tissue that concentrate iodine has received little attention.
Primary hypothyroidism caused by RAI is more " challenging to treat " :
RAI can cause or exacerbate thyroid eye disease : induce fibromyalgia type symptoms ; and cause symptoms similar to Sjogren's Syndrome :
If your thyroid - the engine of your body - needs to be forfeited, surgery is a cleaner and more precise an option, though obvious more expensive to perform.
But we are looking at an auto immune disease and your thyroid is the victim in all this and not the cause - as the cause is your immune system attacking your body.
I've just realised I'm replying my already convinced colleague " Dr Tatt " ?
Sorry, I meant this to be a generally reply but don't know how to " un-reply to " without loosing the content - apologies - and ditto -
Hi Cat_lady13❤️
As a hyper/graves suffer for over 3 years (doctors couldn't diagnose me) I was so bad when I was eventually diagnosed my thyroid was very toxic it nearly killed me I went in to thyroid crises.. Eventually having a full thyroidectomy in 2019..i can say I struggle every day trying to get the right amount of medication it's hell and I feel no better than when my thyroid was still in my kneck.. If you feel OK on carbimazol then stay on it because the alternative could be so much worse
Good luck.. ♥️♥️
Thank you birkie, I’m sorry to hear things didn’t go well for you I hope you get on the right path , people shouldn’t be struggling after having “the solution” to this. ❤️
They can't force you to do it. I regret doing mine! I was pushed into it. If you really don't need to and the carbizamole isn't having any damaging effects on your body then I would point blank refuse!
Hi Cat_lady13
Thank you for posting your question. Like others here I wish I’d known about this forum before I made the choice to have RAI, which I did in 2014. Since taking it I have developed severe graves eye disease which I am now told is as a result of the RAI. On top of this my Graves antibodies have hugely increased and When they are high I have a cluster of additional symptoms which Endos say have no effect on anything but my thyroid so send me back to GP. I’ve been cycling back and forth between various specialties for the last 10 years. I am well when my antibodies fall and really very unwell when the rise.
So from a personal position I would think very carefully before following a Dr advise Especially an NHS Dr because they have to follow guidelines that priorities costs rather than an individuals needs.
I wish you well 🙏
I too was told to have RAI but, having read the awful time most people on here have, I refused it. Have been on Carbimazole since 2016 and intend to continue. I have a toxic multinodular goitre but think it’s probably the lesser of the two evils. It’s amazing how they tell you on first consultation that you should have the RAI. Thankfully, no one got mad at me for refusing the RAI. I amazed myself for going against the endocrinologist’s advice.
I am sorry to say that I too felt fine hyper for years and it was nine months after rai that I became unwell and have been for five years. Deeply regret it.
I do know of a woman who had her thyroid cut off rather than rai and she is fine. Guess we are all different but my life has been ruined and I feel it was the rai or the fact I’m now hypo
I like you felt well with Carbimazole and regret having RAI. I now have to pay for private blood tests and buy T3 from Germany (no idea what to do after Brexit) and try to self medicate to feel well.
I would refuse RAI and stay feeling well.
Wow a lot of experiences on here and I’m struggling to find positive ones, thank you all for these accounts, I have no family or friends that have or know of people with the same problem so I haven’t been able to talk to anyone other than doctors, which with the looks of it only have their own interests at heart .
You will rarely find positive stories on forums like this one. It is the same all over the world because doctors don't give thyroid patients adequate treatment. I have given up trying to find one to help me now. Luckily I haven't had to take anything for years because my thyroid seems to be ok for now. Thank goodness we have sites like this one or I don't know how some of us would have ended up because I don't think doctors care. I sat in front of my GP with my balding head and nails dropping off and he told me his hands were tied because my blood results were within NHS guidelines. I had all the symptoms of thyroid disease but he was going just by blood results and not symptoms.
That’s horrible treatment I’m so sorry to hear this
Obviously positive replies = positive outcomes and those people may not even be aware of forums or other people having health issues from having similar treatment.
However there are now over 111K people registered on the Thyroid uk website and the number keeps climbing so there is something seriously amiss with the current guidelines and treatment of thyroid disease and Levothyroxine being the only option readily available on the NHS.
I'm hypo, but hypo with problems, i.e. a gene defect. Levo does not make me well. And a LOT of us have this gene defect. I would not advise RAI at all because the end result is a lifetime of hypo and RAI hypo seems worse than normal and that's terrible for many of us.
You will not be given good care by the NHS after the operation. I have a tiny bit of anecdotal story to tell. My Mum's hairdresser. She was a live-wire. She had RAI around a year ago now. Mum has just seen her after a long gap. She's put on weight and said she's tired and has cut her days down to just 3 a week now. She still thinks it's about "them" getting her levels right. But she has no idea. We have to learn this condition inside out ourselves before we let these people meddle with us. I fear she is not going to regain her fitness and health unless she learns and fights for or buys her own medication. A doctor is happy if our test results just fall into range somewhere. They don't care where.
Stay as you are until you can't anymore and then have it removed rather than the RAI. But this is just my thoughts and feelings about it from looking in.
Thank you for your input... it means a lot to hear others experience with this❤️
It was reading post replies similar to this one that made me realise I had a choice and could refuse RAI.
So like you, I am facing long time carbimazole. As I have a solitary toxic nodule so no prospect of remission, which is possible with Graves.
From my first hospital appointment I was told this was the plan. I asked about the safety precautions and was promised they would be sent to me but I had to phone the doctor in the nuclear medicine department who said I wouldn’t get them until I attend for the procedure - not very helpful.
I,m sure that most who have had the procedure have no unexpected issues and done well once stable, they have no need to visit support forums but I think there are many who are not well looked after. Doctors are taught these steps. Time constrictions & resources results in patient receiving reactive and fragmented care. When issues do occur long term they do not see or deal with the result.
As you must give your written consent to undergo RAI and they can’t legally withdraw carbimazole, you can stand your ground and they have to accept it.
I have learnt from others that sometimes their specialist has discharged them back to their GP for monitoring, as this gets them off their books.
It sounds like your son is helpful & supportive which can be such a help. Wish all my family were like that.
Do you remember how many times have they taken you off carbimazole, it this something they try every few years?
Doctors tend to view 5mg daily the lowest dose possible (lowest manufactured) but many manage better when taking a longer term, maintenance dose on alternate days or splitting the pill. This would depend on your levels.
Also, how often are you monitored? During normal times, I am tested 6 weekly. My TSH has never quite made it into range meaning my FT4 & FT3 is still tested? Do you have copies or online access to your results. I recommend you view them yourself if you don’t already. Share your results on here & responders can advise further.
Hi, I get taken off carbimazole every 3-4 years, I last round about 8-9 months before symptoms start again, usually I have appointments 6 monthly with a test in the middle and another the week before the appointment. I have absolutely no idea about results I’ve never understood them, they get read out to me and a copy sent to my gp. I need to look into results and what they mean, I’m having my next test on Monday.
once you're 'settled' on levo they only look to do 1 blood test a yr and an occasional GP appointment if THEY want to reduce your dose. And that's if your lucky. LOL. sometimes you just get a Txt ! If you don't like it they'll happily prescribe you some antidepressants which the GP's get QOF point's for , and QOF point's = money.
I've not seen a single example on here of anyone's GP phoning them up to say 'your thyroid results don't look optimal , are you feeling Ok, would you like to try a raised dose.
So you can see where the savings are and why it's 'preffered'.
Sounds like an absolute nightmare!
We're not doing a very good job of selling 'life on Levo' to you are we
I suppose in the interests of Balanced Reporting , you should google " i'm so Glad i had RAI, it's the best thing i ever did" and see if there's a forum for that.
Maybe there's loads of them and they swap cake recipe's and stories of energetic round the world adventures. oops, my cynicism's showing again...
If you get blood results, get the lab ranges that go with the results, they are no use without them. There's loads of folk on here that can explain how to interpret them.
I'm glad I had RAI, so good to be rid of the hyper hell which I had since 12 years old !
I am glad it worked for you because a lot of people have struggled afterwards.
I am aware of that but it shouldn't be assumed everyone will and for many like me it was the best option, we all have to make our own treatment decisions.
I know this but I intend to hang on to mine as long as possible because I know I will get no help from the NHS afterwards.
I feel the same way, my lifestyle suits me fine for now and I wouldn’t want to take the risk of anything changing. Of course if I had no choice due to complications I’d have to go for it but until then I’ll stay doing what I do.
I agree ... luckily my goiter has not got any bigger over the last 10 years but if it does I will have no choice but to have it removed.
100% if it ain't broke don't fix it! So many suffer on levo x
I would educate myself as much as possible about RAI and I would not allow myself to be bullied into any treatment I was unsure about. If you feel well and are living your life I would not be in a hurry to put myself in the medical establishment's hands. Cut this out, kill that off....some people do fine but others cannot reverse the decision. I would take my time and read as much as I could, pros and cons and go from there. Understanding what it means to have an important gland killed off completely would be my first step in weighing up any decision.
Don’t do it. I mourn the loss of my hyperactive thyroid
Hi Catlady. Yes - my daughter, although not as long as you. (She will be cheered to know there is someone out there managing long term with meds and the thyroid they still have). Hers began at 17 and she is now 23. From the very first appt removal or irradiation was on the table. Her initial ' trial' of carbimazole was curtailed months short of the original plan and when she relapsed the pressure was on to comply with the endo consultants 'advice' to remove it for an easier more controlled life because "otherwise you are going to be taking medication all your life" (What!?? As if removal means you won't. ) As my daughter pointed out - no thyroid, don't need to be on the thyroid drs books - cured! Gone. She said no thanks (she also had a misdiagnosed underlying gut condition which was relevant but which endo would not consider in equation "It doesn't matter - we just treat the symptoms". Another dr in the dept finally let slip that patients like her were expensive and in the way effectively (that blood test twice a year is so demanding). Keep your thyroid. If you are happy and feel well as you are, carry on that way. It is a delicate balance. In my personal experience ( and I realise this sounds unduly cynical) I have realised that sometimes when drs do that sympathetic, head on one side thing and say ' it's for the best', they aren't always talking about you, often it is best for them. First do no harm .....one to remind them off - nicely - perhaps. Good luck stick to your guns - what is best for YOU if all that matters , not bean counting because the govt won't fund the NHS adequately.
Thank you for your response, when initially was diagnosed I was left alone as I told them in wanting to extend my family at some point so I wasn’t really pressured but now I’m older they seem to want me gone but like we’ve said, if people are doing good having a tablet a day then there’s no need for drastic changes. I’m sure there are far worse people who have numerous tablets/ injections etc a day, yet me and my 1 pill ( which I pay prescription charges for)and occasionally blood test is costing the earth 🙄. tell your daughter not to worry about how long she’s taking her’s if she’s well otherwise... I’ve lasted this long and hopefully a lot longer !
Thank you. Yes I will tell her. I'm seeing her later. Your story ( although you are feeling pressured) is actually most encouraging. Be strong. You know your body best.
Oh dear, I can't really say much because I know little about hyper thyroid, except that they can't make you do anything. If you say no, you mean no.
I am sure that you will know yourself when that day comes along and you can see that it is necessary.
Until then tell him to zap his own B. thyroid!
😂 I shall remember to say that! Thank you
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