Radioactive iodine tablets

In July 15 began treatment for overactive thyroid . Now everything is perfect on 20 neomercazole and 25mg eltroxin. Feeling great. Endo now tells me I must have radioactive iodine treatment in May. Really scares me . It seems to be a drastic measure. It will be so difficult as I work alone and I have 10 dogs , some show dogs needing serious grooming weekly that only I can do . Is there an alternative ? He says prolonged use of neomercazole damages immune system . Please  help I need more info before making up my mind or getting a second opinion from different Endo. 

6 Replies

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  • Can you post your blood test results as that will give people more of an idea of what is going on.

    I'm in remission from Graves Disease and from about half way through my treatment I kept being told that should I become hyper again it was RAI for me, I kept saying I did not want RAI and they kept ignoring me.

    I did lots of online research and found that it is possible to stay on carb for many years. I felt very well in carbimazole and Levo. In the end I made an appointment to speak to my GP, I explained that I did not want RAI and could I be forced to have it? No. Or could the hospital refuse to treat me if I refused it? The answer was no So I went home and got on with getting better - I didn't want the stress of worrying that I might relapse to cause me to relapse.

    My personal feeling about it is that when you are hyper you are seen in hospital, when you are hypo you can be discharged and dealt with by your own GP. I was hypo at one point during my treatment and definitely didn't want to take the chance that I might end up permanently hypo and possibly under medicated.

    Email Louise at Thyroid UK and ask her for the list of thyroid patient friendly endocrinologists and hopefully there will be someone fairly close to you that you could go to for a second opinion.

    Saying that I'm sure there are people out there who have had RAI and are getting on very well, people tend to use this forum because they are having problems. I just felt that as I was well on block and replace I would prefer to stick with that. If I couldn't take carbimazole for any reason then I would have to rethink. 

  • GeraldineMulrooney,

    Your endo can recommend you ablate your thyroid with radioactive iodine but can't force you to do this if you are reluctant to do so and are comfortable taking Neomercazole and Eltroxin.  It's possible that 12-18 months of block and replace will regulate your thyroid levels and you may enjoy remission after although it has to be acknowledged that remission is rarely permanent in patients with Graves disease.

    Ablating your thyroid will usually cause hypothyroidism within 6 months which means you will require lifelong replacement with Eltroxin.  Tell your endo you would prefer to remain on your current block and replace regime.

    ___________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Geraldine I have been on carbimazole for 5 and a half years and have refused RAI many times.

    All the time I can manage my graves I insist on staying on the drug.

    You know how you feel better than them.

  • Glad to hear from you - that's exactly what I want to do should I relapse. As you say, you know exactly how you feel - not anyone else and I felt very well on carb and Levo combined. 

  • Thank you for that . I feel better now about refusing or deferring. I feel great now but the worry of this treatment pending is wrecking my head. Seems very extreme measure 

  • I have been on and off Carbimazole for the past 6 years. My periods of remission have been very short lived so far. I have refused RAI and surgery all this time.  I've been under the care of my GP since refusing my previous two Endo's suggestions.   Thankfully my GP is very good and he allows me to have my bloods done every 4 weeks, which makes keeping an eye on my levels a lot easier. 

      As well as this wonderful forum, you might want to take a look at Elaine Moores website which is a great source of info for people with Graves Disease as well.  Research as much as you can and you will feel more confident in whatever decision you make regarding your treatment choice etc.

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