rai or surgery

I've been told I need to look at definative treatment after my graves has relapsed. To be honest I don't really want either and whilst I realise the Endo can't force me he's made his feelings on the matter quire strong. He's put me on carbimazole for 2 months to buy me some time to decide. I have 3 children aged 7, 5 and 3 and I'm concerned for them with RAI but the surgery sounds equally as daunting. How long do you have to stay away from young children? I'd be grateful if anyone could offer their opinion on either. Thanks.

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  • I had RAI when my youngest was around 4 or 5, I carried on as normal but just no close contact such as her sitting on my knee, I did the school run with them in the back seats. As long as you keep them at arms length for a couple of weeks all should be fine. Hospitals have their own instructions so you may be told different but it's really not so difficult to manage. I have also had surgery and that's not bad either.

  • Thanks for replying. I'm not sure I could keep my youngest at arms length, she's like my shadow πŸ˜‚ did you have any side effects from the RAI at all?

  • I had no side effects at all, just tiredness when I went hypo which was within 6 weeks of taking the RAI tablet. It was my choice to have RAI as I was fed up with relapsing and juggling meds, wish I had done it sooner.

  • Thanks πŸ‘

  • Surgury over rai anytime

    We were told 30yrs ago that rai was dangerous in anyone under 40 and its every bit as true today

  • If I had my time over again I wouldn't of had RAI, it made me very sick. I was away from my child for 3/4weeks, I had to stay upstairs when my husband came home work. I had to eat from different dishes. Gradually as the wks went by the levels were climbing and I was told its the side effects to the RAI, when before I was told there was no side effects. If u have thyroid eye disease, some doctors differ with the advice weather RAI will or not affect the eyes, in my case they did was on steriods for 6 mths. Horrible experience. I was in hospital for 5 days. I sacked my endo and got another and he said get it out, so I did and it was the best decision I made. The last endo was really against me getting it out. If u do get the thyroid removed, u need to keep an eye on ur calcium, vitamin B12 ferritin and folate. And obviously ur levels! If u need more info I be happy to help!

  • That sounds really awful and is exactly what I'm worried about πŸ˜• thanks for replying. I already take vit d,calcium,folate, Iron and have b12 injections stop hopefully that should be OK. I thought I'd made my mind up to go for surgery until my endo (who's usually really good) said RAI was the best option. His reasoning was that some people have normal levels after RAI but if I have it out I'll be on tablets for life. It's a really hard decision 😞

  • Have u exhausted ur time with medication? I did and i wished i got it out and not have the RAI. My endo wanted me to get RAI SO BAD. Cos he was so against surgery! Where do u live?

  • Rai is a slow process it could take wks mths for it to work, where as surgery its instant!

  • He told me that because it's back again - this time with a vengeance - that I need to do something. He's put me on carbimazole to buy me time but is wanting an answer when I go back in 2 months. I'm in Chesterfield, Derbyshire where abouts are you?

  • I am in Ireland but got my thyroid out in Dublin, by a fantastic surgeon she was amazing would not notice my scar. I was told the same had to make a decision, about RAI, my advice to u, if u do get RAI make sure ur levels are in a gud range before u get it done. I believe my levels werent stable enough when i had RAI, because before u get RAI in my case I had to stop neomercazole a wk before RAI, and the fact my levels weren't stable enought they had time to climb in the wk I was off neomercazole.

  • Thanks. There's so much to think about. Thanks for answering 😊

  • Samspam remember that the majority of feedback you will get on here will be negative, that's the nature of the forum, generally people are here because they have issues, those who have had treatments with positive results are out there getting on with life and there will be many more doing that than those few here who didn't get the desired result. Don't be persuaded either way by what you read here, you must do what is right for you and only you can decide. There is no right or wrong as you can't predict the outcome of either option.

  • Thanks. That's pretty much what my endo told me - the ones who have successful stories are busy living life 😊

  • Good luck with your decision making, whatever you do stay positive and accept and work with any changes that might happen, I believe a positive attitude makes all the difference, being angry at any negatives that might occur will only hinder recovery πŸ˜‰

  • Thanks - trying to accept things can't go back to how they were is hard 😞 I'm working on the positive attitude 😊

  • Hi

    I have graves and had two recurrences of Hyper this time I had a wonderful Endo he wouldnt do the surgery only RAI which I didnt want. He worked with me to get my levels stable and has told me to stay on 50mg of PTU for life if necessary. The cabrimazole didnt agree with me. I have to say he is the best Endo I have ever seen and I have seen a few. He worked with me and was not at all patronizing or bullying. This is your choice and it is your body and only you can say what is best for you. I was seen at Queens in Notingham.

  • Thanks for replying. I'm only down the road in chesterfield so if my endo tries to push me into anything I'll ask to be referred to QMC. I was under the impression that the tablets would only buy me time so it's helpful to know it's an option for long term. Thanks 😊

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