I'm 28 almost 29 and was diagnosed with Graves disease in 2017.
I was treated for almost 2 years from the April and a short time after my medication was stopped I began to feel the palpations and the tremor was back.
Back on the carbimazole and now faced with the dreaded decison to make whether I go for the radioactive iodine treatment or do I go for surgery.
Really struggling to make a decison. I feel like I haven't been given enough info from my consultant. So looking for advice from people who have been through this and will know best, to help me opt for what I feel is best.
Any advice is greatly appreciated
I have added a picture of blood test results I received yesterday.
Do these confirm the reason behind RAI and TT being left an option or not?
Written by
EmmaR21
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I do not have Graves'. Was your carbimazole treatment successful? If it was it is an option for the future.
I would prefer surgery to RAI based on reports I've seen from patients. RAI works well for most patients but a few have bad reactions. If you are planning pregnancy in the near future or if you have Graves' eye disease RAI is not recommended.
I'm sure someone with personal experience will reply soon.
This is not a decision you need to make quickly, take your time.
How did the treatment fail? e.g. could not get the hormone levels down, levels jumped around. There are treatment options. Did you have rapid pulse, were you give beta-blockers?
pennyannie's experience is an example of some we see on the forum. I think it applies to a minority but of course it is a bad outcome, most RAI patients do well but that's no comfort if you do badly.
Don't like the phrase 'I have to decide between the 2'. Sounds like you've been told this by an endocrinologist. It will depend on the nature and severity of your symptoms.
How much carbimazole were you on? Do you have blood test results?
Because this is reoccurring the consultant and the endo unit has told me I will keep going overactive. So I was given the option of surgery or RAI.
I've a high pulse rate and a tremor so given propranolol first time round which made me feel awful so did not wish to take it this time for that reason.
Currently taking 20mg of carbimazole and a phone call from my doctor today stating its certainly going in the right direction.
This is all the info that has been passed onto me via the endo unit which is why I'm here asking questions as I'm not sure where I go from here or sure of answers to questions. I understand people who have been through this will have the answers that I need. Clarity is all I'm after.
It's probably true that it will keep reoccurring for some time. One option is called 'block and replace'. This is where they give you sufficient carbimazole to suppress your thyroid and give you levothyroxine to replace the hormone. This is an option, to see how it goes.
If it doesn't go well I would opt for a thyroidectomy. In the UK they tend to do a total thyroidectomy, remove the whole gland (or virtually all of it). In some countries they tend to do subtotal, part of the gland. This leaves you with some thyroid function and you may get by with little or no levothyroxine. The downside is that some patients need a second operation later.
I would ask about block and replace. If it doesn't work In would opt for surgery. Remember I don't have personal experience.
'Block and replace' isn't a permenent solution, because it requires a relatively high dose of carbimazole, and the risk of side-effects from carbimazole never completely disappear. In effect, B&R would be a second attempt at achieving remission, although it isn't clear that remission was achieved first time around. 20 mg/day (if that's the lowest dose ever prescribed without thyroid levels climbing) is also quite high - most people on long term carbimzole seem to be on 5mg/day or less. Some people are now being offered a combination of carbimazole and levo in the long term, but the carbimazole isn't sufficient to completely block the thyroid.
Thyroidectomy carries a risk of damage to the parathyroids and vocal chords.
For most, it's not an easy decision, although for others the best option will be obvious.
I agree, it's difficult to way up the pros and cons especially when it's for someone else. I don't know if block and replace always has to be 100%, surely partial blocking would provide a safety net against thyrotoxicosis.
so that would be the more common approach, where the carbimazole is titrated to the minimum (apparently) required to keep the thyroid in check - typically 5mg/day or less. (the starting dose for people with high thyroid levels could be 40mg/day, perhaps even 60 mg/day for block and replace). Recently people here have been talking about taking a low dose of carbimazole with some supplemented levo in the long term, but it's difficult to see how this could help people whose thyroid levels are still hovering around the top of the range, or simply not stabilising. (happy for anyone on this approach to explain further). I think most of us would prefer to keep our thyroids if possible, but if thyroid levels remain stubbornly high or unstable it's probably a case of the leat worst option, and that will be a personal decision.
Some people here have had really bad experiences with RAI (and also TT) , and those considering their options shouldn't discount these - but it doesn't mean these approaches will always be wrong.
I have Graves and was diagnosed at age 56 in 2003 and given RAI thyroid ablation in 2005.
I wasn't given any treatment options, and didn't know anything, and believed everything I was told, and that I would be better after RAI and just maybe may become hypothyroid and that that is easier, and safer to treat.
In truth it isn't that simply and I deeply regret this RAI treatment and I now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.
Loosing one's thyroid, because of an autoimmune disease, that attacks the thyroid, doesn't solve the underlying problem and can compound your health issues.
The thyroid is a major gland, the engine of your body's mechanics, and I don't know of any cars that run well without an engine in them. You wouldn't get an MOT without a fully functioning engine - would you ?
The thyroid is responsible for your whole body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Were you ok on the AT drugs, if so why give this all up ?
Personally, if I had my time again, I would stay on the At drugs long term and keep my thyroid gland.
Your thyroid is the victim in all this not the cause - the cause is your immune system attacking you body.
The NHS generally give around 15/18 month window for treatment with AT drugs and then, suggest this drastic action and a quick discharge back out into primary care as they do not actually know how to solve the situation, so think by removing the target of the attack, your thyroid, they have removed the problem.
In simply terms you are then off the O/P waiting list, and freeing up some space for further patients as the medics are target driven to reduce outpatient waiting list time.
RAI induced primary hypothyroidism can be more difficult to treat :
RAI is known to cause or exacerbate thyroid eye disease in some people :
RAI is known to trash vitamins and minerals :
RAI is known to induce fibromyalgia type symptoms:
RAI is known to be taken up by other glands and organs within your body :
RAI is a toxic substance that slowly burns out your thyroid in situ, and the consequences can take years to develop:
It is the first option recommended by the medical profession, it is the cheapest and yes, many hundreds of people seem to have this treatment and are fine - some are not - ??
Once you have lost your thyroid you will be totally reliant on T4 thyroid hormone replacement for the rest of your life :
However a thyroid gland produces several different hormones - but the NHS do not offer any thyroid hormone replacement except T4 - Levothyroxine.
However there are treatment options offered in other countries to include T3 and Natural Desiccated Thyroid that contains all the same known hormones that our own thyroid gland produces, namely, T1. T2. T3. T4 and calcitonin.
Please do your research - check out the Elaine Moore Graves Disease Foundation website :
Also you need to read the last article Professor Toft the eminent endocrinologist wrote as he retired from the NHS in which he states :
" 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 iodine 1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "
2017 - Thyroid Hormone Replacement - A Counterblast To Guidelines - it is on here but I'm sorry my cut paste involves scissors and glue :
I now have to buy my own thyroid hormone replacement as I found no help or advice within the NHS system when I became very unwell about 5 years ago :
The AT meds have taken it down but because this is my second time round with it they have said other options are now to think about because I will only keep going round in circles.
Definitely swaying more towards the surgery than the RAI
Well you could very well still be going around in even bigger circles when hypothyroid :
Look at the very top of this post, now over 110 thousand people on here, all unwell, with mostly symptoms of hypothyroidism, many whom haven't a fully functioning working thyroid.
Graves is an auto immune disease - it is your immune system attacking your body - and a poorly understood and badly treated AI disease.
If you feel as though your between a rock and a hard place, you are.
Drinking a toxic substance or having your throat slit open - both pretty drastic actions and not a solution as to stopping your immune system attacking your body :
Check out the British Thyroid Foundation under research they mention Project Daviad and are working on antigen-specific immunotherapy in Graves disease.
If you do not want to commit to such drastic action, you don't need to accept either option, and to be well informed, where is the literature spelling it all out for you, so you can make an informed decision, rather than search on Dr Google, which generally is scoffed at by the medical profession - why ?
if you can get your thyroid levels down again, and keep them stable on (for example) 5mg/day or less, you might be able to stay on this indefinitely, or at least unless you have another relapse. If you refuse RAI and TT, this is what should happen. But you will need to consider the impact on your health if your thyroid evels remain high, and the potential side effects of carbimazole, which never completely disappear.
I had RAI because I also had uncontrollable Graves having already had partial surgery and been in remission for many years. It was the best decision for me, no side effects, worked quickly and no problems being hypo since.
I will add that being hyper for many years did leave me with a misfiring heart and permanent tachycardia for which I now need meds and a pacemaker to control.
Hi Bantam, I am due to have Radioactive iodine next week and like Emma I have had 3 recurrence of my thyroid going over active and making me ill. How was you when you was given the drug
I was given the tablet in an outpatient clinic, drove home immediately afterwards and was totally fine, no side effects whatsoever. Apart from the minor restriction rules I carried on as usual. I became hypo within a few weeks so tiredness was an issue for a while but after starting Levo and having a few dose adjustments I have had no problems since, that was 20 years ago !
You should have been given three possible options to consider. The third being long term treatment with anti thyroid medication. All three have their pros and cons. The main thing is you do not need to rush into making a decision. Perhaps your medication was stopped too early . This time around you could stay on a very low dose eg 1.5 mg. Carbimazole and have your antibodies checked before stopping. My decision was to be treated with long term low dose block and replace. I feel well on this but if my circumstances change the other 2 options would still be possible. Only you can decide what feels right for you. Take your time to read all you can and don't let the doctors put pressure on you.
Emma- I am scheduled for TT later this year; Graves dx'd approx. 5 yrs back, I am no longer willing to be on ATDs. Opting for TT vs RAI because of several studies that associated RAI with de novo or worsening TED. Plus, I don't like the idea of radioactive iodine in my digestive tract, even short term. Good luck with your decision. This forum has good info.
I was advised to have my thyroid either removed or to have RAI and I am so glad I decided against it. Here I am over 10 years later still with my multi-nodular goitre. All I will say is a lot of women struggle to get the right treatment after having either their thyroid removed or RAI. If I was you I would join Elaine Moore's site she had RAI and regretted it so she started a support site for other sufferers. I do realise some people have no choice and have to have their thyroid removed because of cancer etc. You can read my story on my profile page if you are interested.
I did yeah. I worked in an office and felt very unhappy. So I had a change of career and I'm now a gardener so working outdoors definitely helps with my mood. Drastic change I know but I haven't made any other changes.
Propranolol does yes but I felt very sluggish and didn't like it at all
That is a massive life style change, well done for having the courage to do this " U " turn:
This maybe enough to turn yourself around without too much medical intervention :
Do check out the Elaine Moore website as there are sections suggesting exactly what you have done : your Graves could easily have been triggered by the upset you felt as you would have been internalising these emotions causing additional stress and anxiety for yourself.
I can understand that. Mentally it must have been liberating getting out of something u dislike terribly. I applaud your courage.
However, in view of the hyperthyroidism, unfortunately I think that made things worse, and has now pushed your body into a relapse. If it's really Graves u have, stress, whether it's mental or physical, pushes the body to its limits and brings on hyper symptoms. It took me a few years to learn this painful stressful lesson.
Going from an office job to a physically demanding gardening job, it's a 360 degree change. It will for a certainty reactivate the hyperthyroidism.
Was your Graves ever confirmed via TRAb or TSI antibodies test? I ask this because there are different types of hyperthyroidism. And the treatment protocols are different.
If it's really Graves you have, you might not necessarily need RAI or TT. You could still try staying on medication and drastically cutting back on all stressors both physical and mental, and see if that works for you. For some folk, Graves can be managed without destroying the thyroid.
However, depending on how bad the heart symptoms are, and they can be serious, RAI or TT should not be ruled out if the Graves cannot be brought effectively under control with meds and lifestyle changes.
I understand what you are saying with the job change. But I genuinely believe that my current job did not cause the relapse. I was feeling stressed a short time before I felt the signs of hyperthyroidism again due to issues outwith my work.
I have my phone consultation again in a few weeks and will definitely be asking about other options, such as the block and replace mentioned above. I'm genuinely hoping RAI or surgery can be avoided. RAI is just now an option now I have done more research.
Yes, I believe u are right. Your office job which was making u so unhappy must have been a big source of stress. That stress can trigger a relapse.
I was diagnosed in 2015 and some months later, also changed to a physically demanding job. Quite soon after, my body crashed as all the good effect from the carbimazole was wiped out. The physical stress reactivated the Graves. Even then, I didn't fully grasp the full impact of stress and Graves, and in the next few years, continued to try and find my body's tolerance point for physical stress. It wore down my body as various Graves symptoms surfaced. Eventually I changed industries as I still did not want to have an RAI or TT and the carbimazole was keeping the TSH FT4 FT3 stable. Things have worked out in a way.
U are young, and if u do not have any other medical problems/issues, and the symptoms are not overwhelming, you could continue to try medicating. But to have a good shot at stabilising, stressors have to be eliminated. Stress and Graves are intimately related.
Lastly, if you have thyroid eye disease (TED), RAI is not an option as it will worsen the TED.
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