RAI treatment for Graves....scared

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after a long haul fighting my severe T3 Toxicosis  , my body is worn out, all my joints ache, from carbimazole I'm to,d, and I'm longing to feel myself again , enjoy my life.

i can't keep taking meds , my system doesn't respond , so I've been recommended to have Radioactive iodine therapy and sent away to decide.

im not happy but feel I'm at the end of a long struggle and need some help here . 

My Endocrinologist said , quite honestly I perceived, that he's sent a lit of people,e for a Thyroidectomy , and yes, some have regretted it after surgical problems . But, he's never had anyone regret RAI , in fact he says a few wished he'd suggested it/ insisted they have it earlier.

im driving myself crazy worrying, I feel led to have the procedure, but I'm so worried .

any advice please.

thanks x

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  • Posted

    Hi Jan

    I totally understand your fears. I had Graves, but not to the extent you obv do. My ex colleague however did & it wore her down.

    We both ended up having thyroidectomies for very different reasons, I because I contracted thyroid cancer, she because her body/system would not balance on Carbimazole!

    We had different endo specialists at different hospitals. She had the one op but I had to have the left lobe removed & the biggest nodule in the attached MNG sent for cytology. Which came back as Follicular Carcinoma so then I had the right lobe removed.

    She has never looked back, she had a wobble in hospital when her calcium levels fell dramatically but since then (that was March 2015), she's been well, looks & feels much, much better & went on to have another baby.

    I was 61 at the time & been very well since apart from arthritis & a TKR in Oct last year.

    I also, as a direct result of Graves, suffered Thyroid Eye Disease & PreTibial Myxodaema, I always say thyroid disease the gift that keeps on giving.

    I would say do all of your research, someone on here hopefully can give you the lowdown on Radioiodine Ablation, but from the perspective of 2 people who had the actual ops, it was a relatively painless procedure, with no bad after effects. The op takes about an hour & 1/2, overnight stay in hospital, they check calcium levels, several times at certain pre set times after the op. They also put the camera down your nose to check your vocal chords, as they can be damaged during the op. As I said I had 2 ops & still speaking!!

    You have to make your own decision & if surgery is deffo out, you need input from someone who has had Radioiodine! I hope someone here replies.

    In the meantime there is an awful lot on the net, do your research, read all the articles on the after effects of Radioiodine, which obv includes staying away from babies, small children & pregnant women, for around 2 weeks!

    Good luck, let me know what you decide & how you get on. It's a tough decision!

    Marilyn

    XX

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    • Posted

      I've struggled to decide, but I think I prefer the surgical option. I've never been a fan of ingesting poison!

       Surgery is the Lesser of two evils I suppose?

      Not happy, but need to do something, I feel dreadful.

      Scared and horrible, the nature of Graves, can't wait to move on xx

      thanks...any surgical advice from your ex colleague ?

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    • Posted

      Oh yes, she came through it fine, had to have one extra day in hospital though as she had a calcium scare, her calcium suddenly dropped, she said it wasn't nice, she had this strange feeling along her face & called the nurse who got the doctor down. But after that hiccup she's been fine, they check her calcium levels frequently & don't really know why it dipped so much, but hadn't since.

      She's now at home, her baby boy must be will be 2 this year I think.

      I was really glad that I didn't have the option of RAI, so no decision to make luckily.

      Good luck, keep me in the loop.

      Marilyn

      XX

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  • Posted

    I've now been out on a list for a near total thyroidectomy . 

    I've  tried so hard, but I now feel my symptoms are overcoming me and making me appear quite crazy , and so ill I can't function properly or normally anymore.

    My hubby has been very patient but even he's snapping under the strain of awful mood swings, and I cry every night. I pretend so much I'm fine , but now I'm fooling no one.

    This Graves  Disease is a sneaky thief of an illness, stealing peace of mind and personality in its wake till one day you realise , you're not YOU anymore and it's scary.

    any comfort/ advice please?? 

    Thanks for listening x

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    • Posted

      I'm sorry to hear how bad you feel Jan. You're right Graves is an awful illness. Because you look

      Ok people do not understand how bad you actually feel!

      Try to relax a little, easier said than done I know.

      The only comfort I can offer, is you will get your operation & then start to feel 'normal' again. Also keep on ringing the hospital to see if you can get a cancellation, you may be lucky this time of year, as people don't want to face operations near their holiday! Bad as it is, in this day & age she who shouts loudest gets the prize!!

      You may not notice much improvement straight away, so be prepared for not feeling right after the op, you may be fine but for some it can take a while to adjust to thyroxine! Let's hope you're one of the lucky ones!! It IS different to Graves though!

      In the meantime, I'm afraid you may have to just grin & bear it!! Have you spoken to your Endo Specialist about how you're feeling? Maybe he/she can prescribe something to help? Sometimes we can be too stoical for our own good!

      You could always take up boxing! Lol.

      Before my knees went I used to love hitting my opponents around the badminton court, when I felt gruesome!! It's amazing how a good forehand smash can get rid of frustrations!!

      I'm really sorry I can't give you any help. But just remember you're not alone. There are a lot of us that have been/going through the same stuff in one way or another.

      If you need to just get on here & hopefully one of us will reply!! Alternatively scream into the pillow!! Makes you look a bit demented, but boy it helps!!

      Re learn to laugh, that helps no end.

      I wish you all the best

      Marilyn

      XX

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