Finally appointment with thyroid surgeon

I am so glad that i have got this appointment after being hyperthyroid for so long. I have been on carbimizole for over 2 years but i have been tested coming of them for short periods of time but with in weeks i am back hyperthyroid (and must be a complete nightmare to live with). I have been told by my endo that 50% of people who have carbimizole will go back hyper. Has anybodys endo said the same to them. Just checking because i want to know that i have made the right decision to have a total thyroidectomy. Thank you

7 Replies

  • Lots of folks eventually have a TT with Graves, RAI or both. Is a TT your only option now? Have you had scans? I have no experience of Graves, sorry.

    I just had a partialT due to a dodgy nodule, and previous hyper symptoms have lessened (still get occasional palpitations etc.'tho) but I do feel better after the op, even 'tho once I saw the surgeon he was keen and quick! I have Hypo symptoms now - ENT doc said my half a thyroid would compensate - suppose it has 2.5 years later. J

  • I had a TT in 2006, following 10 mths of trying to manage on carbimazole. With hindsight, I wish I had tried for longer, although I was up and down like you every few weeks. I have since heard there is a herbal product that can reduce the thyroid antibodies but cannot remember the name. Someone may see this post and answer or try Googling. Is there any medication other than carbimazole? I was under a fairly unhelpful endo and he really just shuffled me off to a surgeon without much thought. I tried gluten free diet and various other alternatives like homeopathy with no improvement. The problem is I cannot tell you honestly that TT was the answer as I am still struggling to feel well. Sorry not to be more upbeat. It is a hard decision. Good luck!

  • LDN is a good treatment Ive heard. Also... Ive had graves for 11 years now. Finally my levels are going back to normal on 2.5 mg methimazole.

  • Hi from what I have read on here and elsewhere ( which is limited really) and my own experiences ( nearly 2 years on carbimazole) there does not seem to be a lot of options after carb.

    Some have mentioned herbs and stuff and healthy eating. Some mention turning hypo instead and some have RAI and some have a TT.

    I don't think many people are happy whether it be sugery or RAI as there seems to be pros and cons with both (usually a rubbish endo). Either way it seems you (and probably me in a few months) are at a crossroads. You must do what you think best and I wish you good luck and hope it goes well. Sorry I cant help. I will probably be asking you for advice later in the year. :)

  • Oh and by the way I think that percentages of people on carb going hyper again were quoted at over 60%.

  • Have they discussed other options with you? RAI etc? Or is there a reason they are possibly going the TT route?

  • They did try to sell me rai, but as i have severe ocd, and my anxiety levels are high enough at the moment they think it will be better to do a tt.

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