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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

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  • neilmartin
    neilmartin

    Posted

    Hello everyone, well its a week since I had RAI and I feel fine! no real side effects to report...a general feeling of not felling quite right and little bit tired but nothing major! It's a bit bit weird still having to sleep in the spare room and watch yourself being too close to people when you feel ok but other than that - no problems at all.  Going back to get my bloods done at the beginning of May so will see then how it worked - I'll keep you all posted.  But if you're having this treatment soon and are worried - don't be! it's really not bad at all!
    • emily28486
      emily28486 neilmartin

      Posted

      Thanks for the update so glad your feeling ok and I hope this continues for you. Really appreciate these updates as I too might be on the road to get this done.

      My biggest fear of it all is the possible weight gain when you go under active. Has this been discussed with you ??

      Regards

      Emily

    • neilmartin
      neilmartin emily28486

      Posted

      Hi Emily, I know what you mean - but in all honesty no one has mentioned this to me! One of the good things about being over (if there are any) is that for me anyway, is that weight either falls off is almost impossible to put on! it's like being a teeneager again (without all the angst!).  A friend of mine had RAI and has stuggled with putting weight but todate I haven't! I used to excersise quite a lot but since I've been over the endo told me to stop so that is also worrying me a bit! I have graves and had block and replace about 3 years ago that I thought had worked but it crept back and they suggested RAI - what about you?  
    • emily28486
      emily28486 neilmartin

      Posted

      I was for about 8 years borderline over active and have been on and off block and replace, stopped for about 3 years and then I had a relapse last February (which was not nice) all the typical symptoms and for the last year we have been trying to get my bloods in the normal range with Medication making me go under and then overactive and my weight goes up and down not by much in and around 10lbs or so... I was booked in for RAI last July but I chickened out ( Google is my worst nightmare) reading too much info!! Still back and forward getting blood test now m. I have been steady for a little while now. I'm scared to get the RAI, end up under active and then gain weight. I'm sure this sounds so silly sad(

    • neilmartin
      neilmartin emily28486

      Posted

      Thats the one thing that it doesn't sound! Anyone on here will tell you that unless you have been ill with thyroid issues be they under, over or a mixture of both you really can't imagine what a nightmare it is! I was worried about getting RAI and it did cross my mind not to get it done and try block and replace again BUT i'm glad I got it done! I know what you mean about Google though - too much information and people tend to write more negative things than positive!
  • davidine86304
    davidine86304 neilmartin

    Posted

    Hi Neil

    Thank you for sharing your experience.I feel encouraged by it.

    I am having RAI tomorrow 23 March 2016 and I am very scared and very uncertain.

    I hope that I will have the same positive experience as you had.

    Once again thank you for sharing.

    Hope you have a complete recovery.

    Regards

    Davidine

    • neilmartin
      neilmartin davidine86304

      Posted

      Davidine Don't worry! It really is a piece of cake! They'll spend about 30 minutes telling you what you can and can't do then give you a tablet through a straw and that's it! You'll feel weird after taking it not because of any side effects or anything like that but because you're radioactive! It's an odd feeling for a day or so but that's it! Just kick back for a week and relax! Where are you having your treatment? Good luck! Neil

       

    • davidine86304
      davidine86304 neilmartin

      Posted

      Neil I live in Cape Town South Africa.

      Thank you for the response.

      Will post again in a few days to update on my experience. Really hoping for a smooth ride.

      Davidine

    • davidine86304
      davidine86304

      Posted

      Hi Neil

      Just thought I'd let you know that after having my Rai yesterday I was fine. I had no effects or reaction to it.

      My legs were aching while in bed last night but I think that was because of the tension and fear I had before.

      Your post helped me a great deal.

      Thank you once again.

      Davidine

    • christine57219
      christine57219 davidine86304

      Posted

      Hi Davidine,

      Glad to hear you are feeling fine too after your RAI.  Please keep us all posted as to your progress, like Neil.  It is helping those of us who have also been told that RAI should be now be considered (although I am HOPING I can stay with the meds for as long as it takes for remission).

      Christine xx

  • neilmartin
    neilmartin

    Posted

    hello everyone! Hope you're all feeling ok! Davidine - how's it going? I just wanted to give a little update after three weeks! So for the last few days I've been feeling a little bit rough - you know like the feeling when you've had too much coffee (and i don't have any caffine!), core temprature very high and sweating - had to go back on the carbimizole yesterday only 15mgm - i'm not sure if this is normal or not they did ask me no try not to take it for 7 days after my treatment - but i'm definitley feelingbetter having taken it!  Will update later...
    • davidine86304
      davidine86304 neilmartin

      Posted

      Hi Neil

      Its been 9 days since I had RAI. For 5 days I had no side effects. . since then I have had palpitations and headaches. Not severe but nagging and the paracetamol has no effect on relieving the pain. Also serious constipation no matter what I ate.

      I really dont like the palpitations and these would normally start towards bedtime. Im not using any antithyroid meds now and I was told to wait for my 6wk blood test result.

      Im hoping that this is the worst that Im going to feel after having taken the RAI treatment.

      Hoping you are getting on nicely.

      Regards

      Davidine

    • neilmartin
      neilmartin davidine86304

      Posted

      Davidine

      How are you feeling? I'm feeling pretty good to be honest - not taking any meds at all at the moment putting a little bit of weight on (need to get to the gym really!!) but other than that all good! n

    • davidine86304
      davidine86304 neilmartin

      Posted

      Neil

      I am feeling Great too. No meds as well. Just waiting to do my blood test on the 5May. I have more appetite now than before. I really have to be careful if that is the case. I also havae more energy than before.

      Hope you continue to do well.

      Regards

      Davidine

  • neilmartin
    neilmartin

    Posted

    Not sure if anyone will be interested but I thought I'd give you an update 6 months on....So about 4 or 5 weeks ago I started to feel odd - I couldn't put my finger on it just odd after feeling fine since I had my RAI treatment. I'm back running about 15 miles three times a week (3 x 5 not 3 x 15!) and weight stable 13 stone perhaps losing a few lbs in the last couple of weeks.  But then I started to have episode of hypglycemia horror lows - never had them before - clumsy, profuse sweating - felt like I was drunk - happened when I was driving once - had to pull over - nightmare! Anyway after a few of these episodes decide to get my bloods done, my consultant had given me an emergency bloods form which made it easier. Anyway two days later I get a phone call from the hospital asking me to call the consultant urgently - a long story short the RAI was too successful and has removed too much of my thyroid so I am now under active and have been put on a starting dose of thyroxin as they begin to try and get my levels stable. I'll keep you all posted!

    • emmaj43
      emmaj43 neilmartin

      Posted

      Hi Neil, Thanks for the update, can't belive it was 6 months ago!  Sounds great that you were back to normal until your episode.  It is quite normal to have to take thryoxine afterwards.  I hope you are back on track soon.  Look after yourself. Emma x

    • christine57219
      christine57219 neilmartin

      Posted

      Hi Neil, thank you for the update.  However, it was my understanding that after undergoing RAI everyone at some point not much later went Hypo and had to take thyroxine for life and for me that was one of the important issues against RAI, after being on Levo for some time on Block & Replace and realising that it just didn't either agree with me and I never felt very well at all.  Now I am on Carbimazole Titration (no Levo thyroxine at all) and feel much better than I have for the last 2.5 years.  Early days yet but I am keeping my fingers crossed that I continue to be ok on this method and if so I can stay on a maintenance dose of Carbimazole for life.  

      I hope they soon get your levels stable and you feel good again very soon.

      Christine

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