Advice needed: Endo says end of Carb in August, high likelihood of relapse and will need treatment, presume RAI..... is this the case?

My bloods are all fine. I feel good, I have seen mention case of someone on one dose of carb a week for years... is this possible? Am only on 5mg every other day now as have done up and down titration of drug according to monthly blood tests. Am loathe to have RAI if I can manage on weekly dose of carb? Has anyone out there done this? x

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  • My sister relapsed after 11 months and was advised to have RAI or surgery to prevent worsening TED. She had RAI and is fine but I think her eyes look worse and it seems that RAI is NOT advised for TED. In actual fact, Graves can continue to attack the eyes after surgery or RAI.

    Don't be pushed into RAI or surgery if you relapse. If you are happy and relatively stable on Carb insist on that as your treatment plan while you research the other options.

    I'm not aware of issues being on Carb long term, though I expect there are some. On the other hand, RAI worsens TED, increases risk of leukaemia and malfunctioning of saliva glands. I feel guilty I encouraged my sister to opt for RAI instead of surgery, even though I had RAI 6 months later and neither of us appear to have experienced adverse effects.

  • Thanks so much for your reply, think RAI is deemed easier option for NHS but if I feel OK am going to hang out... at present have no TED or problems there... x

  • I don't know that it's easier. Quite a faff organising delivery of I-131 to designated hospitals.

    As you have to have blood tests to monitor Graves and hypoT I don't understand the push to get people off Carb. Inevitably they end up on Levothyroxine at some point, if not immediately.

    If in doubt, don't seems a wise maxim to me.

  • completely agree with you on this..... I just don't want to take Levo for rest of lif and the inevitable consequences of being hypo......if I was on block and replace than could see why they would push but it's not that much of risk to be on such tiny dose.... anyway it is a while off so cross that bridge etc!!! xx

  • This is advice by Dr Toft who was 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.

  • Thanks for this.... decisions decisions...... but at least have until August to mull over x

  • i would certainly avoid RAI if you possibly can as the problems afterwards can be worse than what you are doing now

  • Thank you , feel exactly the same xxx

  • I'm on 2.5mg 4 x times per week (I do Mon/Wed/Fri/Sun as I know I can remember it that way!)

    I have told my Endo I wont have RAI (cannot anyway as I have TED ,even though she suggested it in the early days!) I wont have surgery as I have heart problems and it was I suggested I titrate my dose. Im awaiting my last results to see what to do next. I'm not sure whether she is just humouring me at present until the time when she 'has' to discharge me or she is waiting until I have been on a low dose for quite a long time and she can then inform me that I need to stop to see if I go into remission.

    I didn't after B&R so I do not think I will now either (I still feel hypo even on that low dose)

    I think I will in the end be discharged as 'non compliant' but will try to find research papers to show her re staying on Carbimazole long term. Its my understanding from research on the internet that if you are going to have problems with antithyroid medication it will be in the first 3 months.

  • Thanks so much Silver Fairy, I feel just like you, please keep in contact with me..... strength in numbers even if only two of us xxxx

  • Hi

    I have been on carb for three years and had a battle with my Endo but I refused the RAI and the surgery. I asked her if my life was at risk if I did not have the treatment she said no so I said I was staying on the carb. She wasn't very nice and every appointment was a battle and then she said there was no point seeing me if I was not going to accept treatment. That was the happiest day of my life and now I just up and reduce the meds as necessary. My GP is brilliant

  • Thanks Elayneg, it is scary though to go against the norm but done it a lot in other areas of my life and always (well mostly) worked out fine, feel a bit like child at school with educated endos wagging finger, even if they are being very lovely which mine are..... but reading other people's experiences of RAI completely puts me off...... good to hear from you and will keep in touch if that's OK? x

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