Radioactive iodine or partial thyroid removal

[MumH]

My endo is trying to wean me off carbimazole I am now on 5mg three days per week and my latest bloods are serum T4 11.6 pmol/L (7.0 - 17.0) serum TSH 2.06 mu/L (0.20 - 4.50). Gfr for kidney function is 61 (60 - 159). He says the carbimazole can be harmful to my kidneys and thyroxine would be better as its a natural hormone so wants to give me radioactive iodine if the graves returns - which I think it will because I am still having symptoms, especially anxiety!! I am anxious because I particularly don't want radioactive iodine as I have heard that there is a greater risk of getting cancer over a 6 year period but my endo says that it only targets the thyroid. I hAve done some research which states that the medics can't tell how long the radioactivity is in your system and when it has done its work on the thyroid it remains in other areas of the body, particularly the intestines- I have a friend that had it done 4 years ago and now has bowed cancer! Can a partial thyroid removal be elected rather than radioactive iodine?

[bantam12]

You can say yes or no to either, I had a partial in my teens (now 60) and was fine until in my 40s when Graves returned so I had RAI, had no problems with either, the iodine is picked up by the thyroid and only tiny amounts are left which you wee out within days.

[MumH in reply to bantam12]

Thank you for replying - I am getting myself all worked up and reading so many different things I just don't know what to think but your response is very helpful 😀

[alangardner]

when my lady and I were '' advised '' that either r.a.I. or surgery [ semi or full thyroidectomy would be carried out -- I stood our ground against both unless as a last resort [ as I had researched most forms of treatment ,the effects and the lifetime treatment regime , never forget that rai will effectively remove your thyroid and once gone can never be replaced ]. I believe that most endo's recommend these treatments as they are the cheapest options at the moment with no forethought for the continued effective treatment for the patient --- my manta is always '' if it aint broke don't fix it '' --- we have since gone down the route of slowly but surely via continued blood tests [ for all areas -- tsh , t3, t4 , ferretin , folate , vitd3 , vitb12 , as well as lipids and kidney -- ] and without any kind of surgery or rai , although it has taken about 2.5yrs my lady is now down 3.5 tablets a day -- from 43 per day inc 5mg carb every other day -- with no major side-effects -- and still has a functioning thyroid gland and is in a much better place than she has been since the start 3.5 -4 yrs ago .. we was helped all the way through this by the good knowledgeable people on this site and I will never ever forget what they have done for us ....... sorry for he long post ...alan x

[MumH in reply to alangardner]

Thank you for taking the time to reply - I will give this some thought 😊

[MumH in reply to alangardner]

Thank you for your reply. Would you mind letting me know what other medication your wife is taking in addition to Carbimazole please, if any, which has assisted in maintaining her current levels?

Thank you

[alangardner in reply to MumH]

hi there MumH , its a long story and road , but I will p.m. you with the info as is in the next couple of days ...its taken 3.5 years but my lady is so fr outside that damn great tunnel she has a suntan now [ sic.] .....alan xx

[Bettyheslop]

Hi MumH, I only know my own experience which is that I had RAI about 7 years ago now.

I was given the choice between RAI and surgery, my endochrinologist thought the RAI would be the best thing for me and as he was a well respected very experienced consultant I went with it. I have no regrets and am glad I did it. I struggled with being overactive for a long time, everytime my carbimazole was reduced it had to go back up again, it's not ideal being on it long term and honestly during that time I felt so unwell I struggled with everything. After the RAI I did quickly become underactive and am now on levothyroxine, I had a lot of issues and symptoms being underactive and often still do but to me it is way preferable to being overactive and on carbimazole.

I'm not saying RAI is an easy option, it's a very individual decision and you need to have a good think about it, I'm just telling you my experience I'm sure there are plenty of others out there with a different opinion.

At the time I had it I wasn't on these sites and I didn't really ask anyone what they thought I just knew I needed to feel better.

Whatever you decide I hope it goes well, take care xx

[MumH]

Thank you very much for replying - I will research thoroughly before deciding .