RAI or SURGERY?

Hello everyone. I'm not going to give you all my life story and bore you all to bits. After reading some of theses post I'm pretty healthy ( I think). After 9 years I'm still taking 5mg of Carbimozol every other day for over active thyroid. My Doctor is hell bent on me to take a Radio Active iodine capsule to "Cure" my over active thyroid, he's even set a date. My levels are (at the moment) normal and I've only relapsed twice in 9 years. I've NOT read any POSITIVE post about the RAI capsule being a BRILLIANT cure 👍 no one has said "Wow it's the dogs bollocks" (Sorry) Infact all the post I've read have been NEGATIVE. Maybe I'm wrong? Maybe it IS the dogs things? My question is this...

1) should I have the capsule? (Why when my levels are normal and my thyroid normal)

2) or should I consider surgery?

3) or have none of the above and just stay on my Carbimozol and hope I don't relapse again?

Thanks for taking the time in reading my post. I also hope that we all one day feel better? If you want to chat with me I'm on twitter too. @culcul71. 👍

Cheers

9 Replies

oldestnewest
  • I found that too, before I stopped my B&R I was told at every visit that when I stopped should I become hyper again then I would be offered RAI - every time it was mentioned I said I didn't want it until on my final visit when my treatment was stopped the trainee endo even held her thumb and finger up holding an imaginary pill to show me how tiny it was? In the end I saw my GP and said I didn't want it - if you read around you will see that it is not uncommon for people to be on carb for many years as you have been yourself.

    I was told carbimazole was a nasty toxic drug - epwhere does that leave a radioactive pill I wondered. Anyway, I was told that I couldn't be forced to have it and the hospital couldn't refuse to treat me if I refused to have it. Obviously should things change and I become unable to take carb for any reason then I would have to reconsider, meanwhile I am still in remission and should I relapse I would want to carry on as I was before, I felt well on the treatment I was on.

    Is it your GP or your endo who wants you to have RAI? I felt I was being offered the RAI option more so that the hospital could ship me off out to the care of my GP which would get me off their clinic list than anything else.

    There must be people out there who have had RAI and are fine but I didn't want it because I became hypo during my treatment and I found being hypo absolutely awful. Graves ( is that what you have been diagnosed as having?) but being hypo wasn't much fun and I worry that I would be rendered hypo, thrown out to the care of my GP and eventually allowed to feel really ill while still 'within the range' because I was under medicated as seems to happen to so many people on this site.

    Fortunately at the moment I'm still in remission So I haven't had to put my back up plan into action.

    Read as much as you can about your options - there is a lot of information out there - and don't be pushed or bullied into any type of treatment you aren't 100% happy about. Good luck 😊

  • As fruitandnutcase says above, being hypothyroid isn't any fun, and having RAI would most likely render you hypothyroid for the rest of your life.

    I always get the impression from this site and other thyroid forums that doctors treat overactive patients more humanely than they do underactive patients. The attitude from the medical profession seems to be that overactive = really ill therefore treated politely and seriously, and underactive = boring, attention-seeking, whinger.

    Avoid being hypo as long as you possibly can!

  • I had RAI years ago, no big deal, caused no problems, for me it was a no brainer after many relapses over the years. I asked to have it, glad to be rid of Graves ups and downs and much easier being hypo.

  • Having RAI was a great success for me, all my thyroid check ups are at hospital so don't see GP about thyroid.

  • Thanks for the replys. I do have Graves' disease. But only very mild. My eyes seem ok and don't bulge out. (I pity those who's do) I've made up my mind. I'm going to opt for surgery. I don't believe swallowing a pill that is so dangerous (it's needs a lead box to be stored) is good for me. And even though there are no links to cancer ( tell that to the people of chernobyl ) there's is cancer in my family. It's not a risk worth taking. My thyroid is goosed! I must get it removed? That's it done and dusted!

    Thanks all

  • First thing is - do not be forced into any action which you instinctively feel isn't right. Once either of these procedures are carried out, there is no going back. Unless of course if you have thyroid cancer.

    Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse online article by Dr Toft (who was president of the BTA) and read what he says about hyperthyroidism.

  • Having had a sub-total thyroidectomy for Graves(not much option as things went badly wrong while pregnant) I wish I had stayed with Carbimazole . Please don't rush into things,especially as you are stable at the moment.

  • RAI why take it if your feeling good. It's used as a quick fix once taken and hypo your then discarded and back to the GP. I had RAI 4 years ago I had no idea what I was taking. I was so brain fuddled I just didn't have a clue. I wasn't given a capsule I was given it as a drink through a straw from a lead cup. I didn't realise that the noise I could here was Geiger counter beeping at me. There was one day when I felt amazing this was the only day. I was then severely underactive within 6 weeks my GP described my brain function as at a cretinism stage. I was then placed on thyroxine it tookal it's 6 months to feel a bit better. I was so fatigued my brain was sluggish and I had the most sever restles leg syndrome I didn't just get it in the evening I had it all day long. It was aweful the sensations it created in my body. I just wanted to lay down and not get back up. It turned out I was intolerant to thyroxine I think it's some sort of defective gene. I am now on T3 and need 165mcg T3 to keep me going. My endocrine says that people should be more informed and that the NHS endos really need to tell people what RAI is like and what it does to you. I was told that the RAI would destroy the damaged cells of the thyroid. I was not to.d that all of my thyroid was damaged. Today I am fit and well on T3. My endocrine tells me I did well to hold onto my job as many like me had lost there's. Think long and hard before going down the RAI route. Xx :-)

  • I am just reading Dr Amy Myers latest Book "Autoimmune Disease and how to reverse it" She had Graves disease and regrets the treatment now to ablate it. It is a great read very helpful. Good luck and trust your instincts!

You may also like...