1. Community
  2. Diabetes and hormone problems
  3. Hyperthyroidism

RAI treatment

Posted , 10 users are following.

neilmartin
neilmartin

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... 

3 likes, 32 replies

32 Replies

Next
  • emmaj43
    emmaj43 neilmartin

    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

  • christine57219
    christine57219 neilmartin

    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

    • neilmartin
      neilmartin christine57219

      Posted

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

      Neil

    • christine57219
      christine57219 neilmartin

      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

    • christine57219
      christine57219 neilmartin

      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 ?
    • neilmartin
      neilmartin christine57219

      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!! 
    • christine57219
      christine57219 neilmartin

      Posted

      OMG - couldn't do it unless they knocked me out !!  I was bad enough having an MRI scan for a back problem and CT scan for another problem !
    • christine57219
      christine57219 neilmartin

      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(
  • faye22957
    faye22957 neilmartin

    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
  • neilmartin
    neilmartin

    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!

     

  • emily28486
    emily28486 neilmartin

    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

  • neilmartin
    neilmartin

    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
  • mehnaz786
    mehnaz786 neilmartin

    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 ,
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.