Confused .com

Trying to get my head around this, went to see my consultant today and he says I would be better to have RAI to treat my Graves as my TSH is 0.1 and my T3 and T4 are off the scale,I think he said -55/ 68 ? ..... he has now upped my dose of carb to 40 mg 4x a day from 5 mg 3x a day, has any one on here taken that dose ? And how did they feel .? And has any one regretted having RAI and why ?? Sorry for all the questions .

10 Replies

  • I definitely did not regret having RAI in fact I asked for it, having had Graves on and off for 30 odd years, partial op then relapsing, never able to remain stable on Carb or Carb/Levo, enough was enough. Had RAI and went hypo within 4 weeks, been on Levo since, 15 + years with no problems. Best decision for me.

  • Hi. I had RAI a year ago and I'm struggling to get anywhere near back to normal. From what I can gather men respond a lot better to RAI then women. Please make sure the consultant really explains everything before you go ahead. I went into it very blinkered not having enough information given to me and now I'm trying to find out how to deal with it.

  • Hi snoddyoddbod, I asked the endo for more info on it yesterday and as his understudy went to pass a booklet over to me he quickly grabbed and said he'd give it to me nearer the time as I can't have RAI until my figures has lowered in to a safe zone as it would be dangerous. He also said not all go under active ? And I replied, "they got to be if you killed the thyroid off " surly ?. I don't think he's being totally honest about the after treatment !

  • Hi he's not being honest with you most people go under active after Rai, I had mine 7yrs ago and regretted it ever since. I was on and off carbimazole for 12yrs before that and was pretty well most of the time. Endo said Rai would be best for me and at that time I thought doctors knows best, oh what a fool I very sure that it is what you want to do and don't be pressured into it so research is important before making this decision as once done you can't go back.if you are having any problems with your eyes then this treatment could make them worse. Sorry don't want to scare you but you need to make informed decision it's not an easy fix like the doctor's say.

  • My endo did explain a little but then sent me to the nuclear medicine department who explained the process. It all seemed straight forward. I had the RAI and three days after I felt great. For 3 months following the RAI i felt awesome. Then as the gland died off i when underactive and then down to nothing. My weight flew up by 3 stone my hair started falling out in massive amounts and I had no energy. I expressed to my endo recently that I had regrets about having RAI and was told I wouldn't have been allowed to carry on taking carbimozole to suppress it. So you are sort of dammed if you or dammed if you don't!

  • Hello Val Please don't be pressurized by the Endo. It is your body and you should be allowed to make your own mind up. I have been in your shoes at clinic appointments and had nasty experiences just standing my ground and refusing RAI or surgery. I don't want either procedure and have been made to feel an idiot and have driven home in tears twice.

    On Wednesday I was back in clinic again and was told about the alternative treatment (Rai/surgery) but refused point blank and waited for the nasty comments when I said I wanted to be treated with carbimazole as I am one of the fortunate people who have almost no side effects from this medication. No nasty comments came. No being made to feel an idiot as on previous occasions. The Doctor said it was my decision and acceptable..... phew!!! I had gone prepared for another confrontation and it never happened. A HUGE relief for me.

    Good luck to you on this roller coaster ride we all experience with our thyroid conditions. Read lots and ask questions on this wonderful site, then you can make your own mind up.

  • This post isn't based on personal experience, just on what I've read here and elsewhere on the internet, so bear that in mind.

    If you have Thyroid Eye Disease (TED) then RAI will make it worse. If you decide that you've had enough of having an overactive thyroid then your best bet is probably surgery to remove the thyroid.

    Some people without obvious TED who then have RAI will sometimes develop it afterwards.

  • I chose RAI in the belief that it was the only way for the remnants of my thyroid, after TT, to be unable to regrow and develop into an even worse monster than the multinodular goitre which had been on the point of killing me.

    I received NO advice and now regret having made that decision as I could easily have had a few more years of a NORMAL life if those remnants had been left to their own devices.

    I knew nothing at that time of the consequencies of RAI which are, of course, for the majority of people the necessity to take the BANNED medication NDT for life. I suffered 8 years on levo and my complaints about being on the wrong medicine were totally ignored.

    You need to read the documents referred to below that may assist you in your current situation:

    See this from the GMC: “CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER. (9) YOU MUST give patients the information they want or need about (l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.”

    Also from GMC: “COMMON LAW. RISK. Patients should be told of any possible significant adverse outcomes of a proposed treatment.”

    See this from the Royal College of Radiologists: “STANDARDS FOR PATIENT CONSENT PARTICULAR TO RADIOLOGY. 'PRUDENT DOCTOR'/'PRUDENT PATIENT.' “….the emphasis…is [now] on...what the average “prudent patient” would want to know about….treatment options… [and]… potential risks….of a certain complication occurring against the risk resulting from putting…off necessary treatment.” (words rearranged to make sense in a single sentence).

    Just Google the appropriate words to find the full documents referred to.

  • Hi Val09 , I wish I had more information before having RAI . The last time I felt really well was on carbimizole . The Endo told me ' maybe one little pill ' might be necessary . I crashed immediately into under active .

    I blame it for my gastritis and the fact that I sometimes have difficulty swallowing .

    I cannot for the life of me understand how a radioactive pill that the technician cannot handle is put on to one's tongue and swallowed .

    Please look into it thoroughly before you agree , I know many people have approved of it .

    Good luck Pp

  • Thank you all very much for taking your time to reply, I think my mind is made up and I'm going to refuse and stay on carbimizole for as long as he lets me, I'm lucky as I've got no goitre or eye problems, but when I asked my endo if I could stay on this medication , he replied no as I would end up with angina or heart attack which would be fatal. To be honest I think I'm going to take my chances as my Graves is not full blown as some on here . Although my numbers are high , I'm sure they will come down soon .

    Thank you all .

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