Radioiodine or Surgery?

Hi my name is Rachel, I'm 43 with an over active thyroid. I was first diagnosed 3 years ago and was treated with Carbimazole for 18months which seemed to sort the situation temporarily as I relapsed in April this year.

I have seen an NHS endo who has recommended radioiodine treatment but have since seen a private consultant who recomends I have surgery! I don't have a goitre so thought surgery wasn't necessary.

As a new blogger I was hoping some of you may have some advise to help me clarify things in my head. I am edging towards the surgery option at the moment as I'm thinking "get it out and know where I'm at, rather than waiting for it to become under active". I realise its not as simple as that and I realise I'll be on medication for the rest of my life.

My other big worry is the tiredness, I've always been a tired person and am concerned this may get worse.

If anyone can help in anyway I would be really grateful for your input.

Thanks Rachel.

5 Replies

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  • I have goitres and radioidine treatment was proposed to me, I researched and absolutely refuse it, I have poor functioning saliva glands very painful and will not risk it doing any more damage, anyway I believe in get it out then and then, without radioidine which sometimes does not work and has to be done again.

    best wishes Helen

  • Hi Rachel - I know of 1 person had radioiodine (the right dose) for a 'hot' nodule, she is OK after 10 years, another person had it, then an op and has to have thyroxine but its better than being hyper. Me, I had no choice - I had a 'bad' nodule & just had half thyroid out - I feel like me again (so far) I felt poisoned with fuzzy head, pains, tired, flutters and all sorts. Have you had a scan?

  • hi Rachel - I was diagnosed with Graves disease earlier this year and have almost completed 6 months of block and replace therapy with carbimazole and thyroxine(which has been difficult) My consultant didn't want to do radio iodine as I still have young children, and also told me that they 'don't do surgery anymore' (which i found hard to believe). I'm just worried that if the block and replace hasn't worked (I'm about to come off it for a trial) then I'll just go back to being super hyperactive again (my levels were 4x normal).

    Sorry not very helpful for you, all about me me me! Just that this place is the ONLY place I have found to express my anxieties. I'm so fed up with the whole thing!

  • Change your consultant.. they definately DO do surgery, and on the NHS.

    RAI can affect other tissues too...... be very wary of it.

    Nel

  • Hi, Rachel - hooray... someone else out there like me! I am 44 - and had my first bout of hyperactivity in 2006-7, was treated with carbimazole and allowed to re-boot. Although I struggled (my levels went down to 6, before a GP suggested coming off the dose...) it seemed to do the trick, and I returned to "normal" for me, which is around 11 - 12. Yes - I often feel tired and have to pass out after tea. THEN... having been told that no one knows why all this happens... it happened again. Felt awful through summer, and by the end of August had hit a level of 42. So, on carbimazole once more, trying to get back to work, and waiting waiting waiting for an appointment with the specialist to find out what is going to be proposed this time. Like you I am concerned about the options, the timing and the result. I am now going to be brave and post a blog - this is a first. I have all sorts of things to say - both positive and negative!

    Keep cheerful and keep asking questions. There's a guy at school who got zapped last June - and I'm working up to asking him his story.

    Take care,

    Laura

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