follow up of RAI

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Just a quick follow up for anyone considering taking radio active iodine treatment. I took the treatment on the 10th if April last month, I had no major side effects except a bit of a sore throat, had my followup consultant appointment and bloods done last night and already my thyroid is functioning at a normal level I do not need to take any medication right now 😊 that's not to say it won't continue to fall over the next few months though. However I've found the effects of the iodine fast and effective. I do feel more tired already, less agitated and more able to sit still now which was impossible before and we believe the extreme tiredness I feel just now maybe due to having so much false energy fr so long returning to a normal level seems like no energy to me 😂 extremely pleased however would still rather it burned out completely and I take thyroxine rather than the balancing act for a normal thyroid!

Hope this helps some people out with their decisions in future ❤

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15 Replies

  • Posted

    Thanks Sam, there are so many negative comments about RAI on this site that I'm glad to hear you are doing so well. My graves came back for the third time in February and I'm going to have RAI or surgery as soon as I can get it. Its easier and safer to manage the condition with thyroxine than by taking meds to suppress the thyroid. I hope it all stabilises soon and you can get on with your life and forget it.
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    • Posted

      Sorry I have just seen this reply I had my rai pretty quick from the day I was diagnosed with graves, it was all within a few months because I had so much grief and side effects with the carbimazole. I found the iodine quick and easy the hardest thing was not seeing my son for 16 days. Today Im functioning at normal levels but am hoping it's going to continue to fall and burn out altogether so they can just give me the thyroxine rather than still trying to maintain a balance x
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  • Posted

    Thanks for posting this I am in two minds to get RAI at the moment, very confused about it all. So thanks for posting. Regards Emilky
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    • Posted

      I found it easy and painfree. . My hardest point was not seeing my partner (11 days) and son (16 days) there is also stuff to consider whether you plan on having family within 6 months you can't do that with the iodine but I seen it as less severe than the surgery tbh. Any questions or any other help I can give I would be glad to x
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  • Posted

    Thanks Sam, no plans this year for starting a family and I'm ok about not being around my husband etc for certain amount of time. I'm at the stage where I think I will hold off on getting the RAI but have been told I will relapse at some stage so why not get it done now than later sad confused and really appreciate your comments great help, if any questions will pop it on here thanks x
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    • Posted

      I took the treatment pretty quick like I said n I hope it continues to fall and burn out however right now it's at a normal level so even with that am happy no medication at all x
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  • Posted

    Emily, mine hass come back twice following initial diagnosis and each time it's got worse with stress or an infection setting it off. If I'd known I'd have had Rai when first diagnosed. It takes a couple of weeks to realise it's come back and then a few more to stabilise. Life is too short to be ill so I'm getting treated asap.
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    • Posted

      That's the way I felt sue and wasn't keen on surgery at all, I'm now functioning at a normal level n while it stays normal in on no medication can still continue to drop which would be my ideal solution, and burn out altogether but if it stays normal it could come back again x
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  • Posted

    I m of the opinion that if a part of the body is diseased and/or causing problems you are better off without it. I've had my ovaries and a salivary gland removed due to auto immune issues and the thyroid can go the same way. I don't want to be juggling an unsafe drug like carbimazole for the rest of my life and would rather take thyroxine when it's all adjusted following treatment. It's not good to be worried about your blood levels all the time so I think it's the way to go for me.
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  • Posted

    Thanks Ladies, I know what you mean just get rid.... I think I am still in denial about my thyroid I was borderline overactive for about 8yrs (I am 33) on and off carbomiazole and my Endo always said to go for RAI then in February for the first time it went haywire all the typical symptoms(not nice), I started back on the carbomiazole and then my goitre has swollen which it still is.

    I am more than likely going to have a relapse like you Sue.

    My two worries about RAI is will this make my neck swelling go down? And the next is weight gain when I end up under active.... Any thoughts on this?

    Do you feel you have enough energy to exercise now?. Sorry they are silly questions but weight gain scares me after loosing 2stone last year x

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    • Posted

      The swelling is a goitre and when you are stable symptoms should disappear. You won't have weight gain if you go under active if you watch your diet and take the thyroxine.

      I recently had my carbimazole reduced following a blood test and I was four times over medicated! I'm on 5mg every other day as I went under active. I felt ok but a bit cold and had put on a couple of pounds. I'd rather be under than over any day. I do Pilates twice a week, gardening and housework. By the way I'm 67. We all have different ways of dealing with Graves but I'm fed up with it. I want permanent treAtment rather than wondering when it will come back, which it usually does.

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  • Posted

    Wow 4 times over medicated, yikes I'm glad you are sorted now. 

    My bloods are nearly back in the normal range so once this happens the next question from my Endo will be when are booking you for RAI (he told me not to rule out surgery due to my goitre) which I have straight away that is worse case for me.

    I am really considering the RAI after messaging you and It is down to me as to what I eat that could put the weight on after RAI.

    Are you both sleeping better?.

    sorry Sam I have gate crashed your post, both your comments have really helped me, I really appreciate it. X

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    • Posted

      I sleep ok but never that great due to other auto immune issues (I also have sjogrens syndrome and lupus). I can always have a nap in the afternoon as I'm retired. Don't be worried about surgery. It's an overnight stay at worst and nothing to be concerned about I think a positive attitude about getting it under control helps and if that's deciding on RAI or surgery it's ok. We all have different lives so do what's best for you. Make sure you cut aspartame from your diet and eat healthy and it will all be fine.
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    • Posted

      I feel more tired but I wasn't really sleeping better til the last week tbh! This is me bow apparently normal so just to keep an eye incase I become extremely tired meaning it has most likely dropped down under which I'm hoping anyways. I found it easiest option the surgery terrified me but I tool the iodine n had no side effects had a bit of a sore throat for a few days but more annoying than sore if that makes sense n not one other thing. I've been weighed etc and have put on .06kg which is nothing at all considering. The surgery to me is a last option I did research both as much as I could and any questions my consultant was always at the end of the phone or else I can speak to her through emails I feel like she goes over and above to help.x
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  • Posted

    Thanks ladies for your opinions and advice they have been helpful. I have not been a great sleeper for many years now so really used to not getting many hours sleep.

    Time for me to make my decision xx

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