RAI or having my thyroid removed

Still strggling to make a dicision!!! I have been reading about Levo intolerance as I was on blok & replace for a few months & thought I was intolerant to Levo as felt horrid & gained about 1 stone. My endo said it was not the Levo it was likley my system being uset etc due to hyper/graves.

Has anyone else suffered with Levo intolerance in these circumstances & has anyone had their thyroid out & felt okay???? Which would peeps on here recomend RAI or the op????


16 Replies

  • I, personally, cannot answer your question but this is a quote from Dr Toft, ex President of the British Thyroid Association:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

  • Thank-you very informative.


  • It's an unbearably tough decision to make, and I'm sorry that's what you are facing.

    I don't think there are any really good options here, but RAI sounds like a bad option to me.

    RAI sounds so hit and miss - they don't know how much of your thyroid will be deactivated. So you might continue to have high levels of antibodies afterwards because the thyroid tissue remains.

    Plus it's radiation and it has to go through your digestive system on the way to the thyroid gland. We have a family friend who recieved RAI for thyroid cancer (probably caused by radiation from Chenobyl in the first place, she says) and she now has coeliac disease too - her doctor says it was a side-effect of the RAI. Plus the second highest concentration of iodine in the body is found in the ovaries... so there can be effects there too, although the medical people say those are temporary.

    I believe that RAI is contraindicated in thyroid eye disease (TED) and if you don't already have TED, then it increases your chance of getting it.


    I hope someone will come along to talk to you about the surgery side of things, as I know little to nothing about that.

  • Thank-you very much very good advice xxx

  • Hi. I had a total thyroidectomy for toxic multinodular goitre. The only choices I had were to do nothing or have surgery. It was a large and ugly goitre and had displaced my trachea, so I chose surgery. I had already been watching and waiting for 9 years, so it was not a rushed decision. My bloods were only slightly hyper while I had the goitre and never warranted treatment with drugs or RAI.

    Anyway for me, surgery was the right option- I had a large uncomfortable lump removed and now feel and look better.

    Lucky for me, I seem fine on levothyroxine so far. I would be more concerned if I was you because if you cannot tolerate levothyroxine then it may be a struggle to get alternatives.

    I don't know if I have helped you because each situation is different, but don't rush your decision. If you decide on surgery make sure it is with a specialist who does a lot of thyroidectomies and also make sure they are good at the follow up side of things, or get a referral made to an endo before you have the operation.

    Good luck with it all.

  • I had mine removed 18 months ago to save my eyesight & it's the best thing that happened to me since falling ill. I was on high level block and replace 60mcg carb/125mcg levo. The up side to surgery is that it's much easier to stabilise your levels when your thyroid can't interfere. If you were gaining weight and feeling rubbish you may not have been receiving ENOUGH levo, how were your levels?

    You need a decent endo to keep your TSH low or even suppressed and to watch your T3 conversion. Do all this first to see if you do indeed have an intolerance or simply the wrong prescription :-)

  • Thank-you I was on 50mcg & 60mg of carbimazole. My levels were still very high things started to stablise somewhat when i stopped taking the levo, I am now on 20mg of carbimazole only & I am eutheriod but my TSH is still 0,01 I feel like I am being poisoned with Carb as endo is solely focussed on TSH so I have spoken to my G.P & we have agreed together to reduce to 10mgs of carb with regular bloods done my FT3 & FT4 was right at the bottom end of reference range & I felt horrible.

    Do you know whether I will have a choise re: Amour??? I have heard that most endos& G.Ps won't prescribe Amour, have you been offered it as an alternative or has anyone asked for it.

    Take care Suzanne

  • Forgot to mention I have TED which is mild so that is another factor so I think I'm leaning towards having my thyroid out. Thanks for the advice everyone much appretiated xxx

  • 60mcg carb is plenty to shut down your thyroid but you were not getting enough levo to sustain a gnat so no wonder your levels were low you felt awful & put on weight. :-(

    Your chance of getting armour will be dependent on your health authority & endo. Is your endo approachable?

  • No not really & I now don't trust him as he insists I am still over active even though my level are at the very bottom of the range, he is focussing on TSH only, so I have now got wise to this & insist on my results & he does not like to give them to me!!!

  • See an opthalmologist & get your eyes treated :-)

  • I do see a consultant ophalmologist & he is really good, seeing him again soon so will ask his opinion about RAI.

    Thanks again x

  • Do not have RAI

  • Okay I don't think I will as I have read that it makes eyes worse, but my endo says my eyes are very mild so it won't effect them!!!

  • That's easy for him to say. Often these doctors don't have much of a clue about the "side effects"- it's not them that has to live with them. And I think many side effects are downplayed because of the difficulty of reporting them and getting doctors to acknowledge that it was their treatment that caused the problem in the first place!

    This quote is from the BTA:

    "Studies have suggested that radioactive iodine treatment for the thyroid may make the eye problems worse. Since the eye and thyroid problems, although connected in some way, run their own separate courses, worsening of the eyes after thyroid treatment is often a coincidence rather than a direct effect of the thyroid treatment. Nonetheless, it is strongly recommended that patients with severe eye disease avoid radioiodine."


    See what I mean?

  • Hi Suzanne. I had a thyroidectomy for a cancer and auto immune thyroid disease, but not for overactivity - and these days am doing pretty well on replacement hormone. Albeit that it was a struggle to get to a replacement regime that worked. (i needed T3 hormone as i've not been able to use more than a minimal quantity of the stock T4 replacement hormone)

    There was a widely held view on the US Yahoo Groups Thyca forum I spent a lot of time on (around 2005) then that RAI (or for that matter a partial thyroidectomy) was bad news if you had any sort of auto immune disease of the thyroid.

    This on the basis that it left the diseased thryoid in place to act as a focus for auto immune activity. Which in turn messed with other stuff (e.g. the enzyme processes involved in converting using hormone) and more or less guaranteed a hard to treat hypothyroidism. That's fatigue and related issues caused by the effect of replacement hormone being blocked.

    Several that struggled for years with fatigue and illness reported great improvements after eventually (often for other reasons like a recurrence of a cancer) having the remainder of the thyroid completely removed.

    I've no idea how universal this experience may have been, but it seemed pretty universal given the relatively small population posting on the forum.

    The other issue that seems to come up is that the impression is often given (whether inadvertently or not) that RAI is about 'turning down' the output of your thyroid to 'fix' the problem. The reality is that almost by definition the treatment has to be sufficent to leave you hypothyroid - which means that either way you will probably need to take thyroid hormone to bridge the gap.

    It's a bit of step to be left fully dependent on synthetic/replacement hormone for life (what if there is a crisis and the supply dries up? - there's already hiccups at times now), but against that it seems preferable to me to long term hypo symptoms and the attendant risk of disease....

    Good luck with it...


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