RAI treatment

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Hello everyone, not sure if this is going to help anyone but i'm having RAI treatment today at 4.00pm. I was very ill about three years ago (hospital for two weeks) following a serious thyroid storm and had block and replace that worked for a while, gradually been getting more and more over active, was referred for RAI treatment had a scan was told I needed to get it done fast! So I thought I'd drop a note on here, to let anyone who's interested, how it goes!  will update later... 

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  • Posted

    Hi Neil

    Good luck for later.  My friend had RAI twice and it worked successfully the second time.  

    I will be interested to hear how you get on.

    Emma x

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  • Posted

    Hi Neil,

    I'll be following your progress.  We exchanged posts 7 months ago when you were feeling good and telling me to hang on in there because I was feeling rotten !  Last time I saw my Endo he was pushing me towards RAI but as yet I'm not giving in.

    Good luck and keep us updated

    Christine xx

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    • Posted

      HI Christine, apologise I meant to write earlier but you  know being radioactive and all that! biggrin  How are you feeling now?

      Neil

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    • Posted

      Hi Neil, so glad you're feeling ok after being radiated wink.  I actually feel much better now than I have done since I started Block & Replace 2 years ago !  I decided to reduce the Levo myself about a month ago.  I was feeling anxious/panicky all the time and so breathless when I exerted myself (just going upstairs to bed or just walking 20 yards) so I came to the conclusion that I was over-medicated with the Levo - I reduced it from 100 micrograms a day to 75 micrograms every other day and so far so good - I've had just a couple of anxious days out of the 4 weeks. Last blood results were the best I've had in a long time so fingers crossed. I see Endo on 4th April and going to hopefully stop taking Levo altogether and try the Carbimazole titration treatment and hope for remission this time.  I still don't fancy RAI or surgery should I not have a remission but putting on weight if I did have RAI is the least of my worries - as long as I didn't put on more than 2 stones wink I'm so thin because of being so Hyper that I can afford to put 2 stones back on.  I'd be more worried about having to take Levo bcause I don't think it's a medication that altogether agrees with me.  Everyone goes HypO after RAI and surgery don't they ?

      Keep on keeping well Neil and updating us

      Christine

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    • Posted

      Forgot to ask what the urgency was for the RAI after the ultrasound ?  Did you have nodules on your thyroid like me ?  I've only had one ultrasound and that was in 2014, at that time I didn't need to have the Fine Needle Aspiration because although the ultrasound showed quite a lot of nodules, the blood was flowing freely through them so were "benign" nodules then. Do you know how often we should have an ultrasound ?
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    • Posted

      Hi Christine - the urgency after my scan for seemed to be high! The  consultant said I 'lit up' during the scan that I needed to keep taking 15mg of carbimizol daily until three days before me scan and then to stop for at least 7 days after my treatment.  I had my scan on the Monday and my treatment the following Tuesday.  My scan was using a gamma camera where they inject you with a radioactive dye and have to lie very still in a giant camera with a huge metal plate about a millimeter from your nose for 20 minutes!! Quite claustrphobic but i managed fall asleep!! 
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    • Posted

      Needles, confined spaces and spiders - my 3 phobias (oh plus the dark but only since I've had a thyroid problem) - so if I ever have to have what you had (the gamma camera with injected dye), they may as well throw in a spider and do it in a pitch black room AND COMPLETELY FINISH ME OFF  sad(
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  • Posted

    Good luck, hope it went well. Will be interested to know how you get on as I have opted for surgery but am still unsure if that's right for me x
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  • Posted

    Hi everyone, just a quick update after 4 hours of being radioactive! Feel fine - a bit of a headache but nothing really! Thanks for the comments - i'll keep you all posted with my progress.....now a glass of wine!

     

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  • Posted

    Thanks for posting this info. glad to hear you are feel ok. Keep us updated because I have a feeling this is the road I am going to have to take.

    Take care

    Emily

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  • Posted

    OK just over 24 hours in post RAI and dont feel 100% but nothing too bad. Feel a little bit tired, a bit 'palpy' and getting out of breath easily but really nothing I'm worried about!. I'll update in a day or so....or sooner if something bad happens! smile
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  • Posted

    I had RAI done in November 2015 , I was drinking plenty of water felt thirsty , my head felt hot every time but gradually felt much better but now I've become under active and was on thyroxine, they had very bad effect on me . I started losing hair , dry skin again , the good part is I put weight on which is my average weight , now I have stopped thyroxine and I take liothyronine tablets every other day feel better with this tablet . Let's see how it goes for u ,
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