Radioactive Iodine Treatment - experiences please

[jennymac]

I was diagnosed with hyperactive thyroid last year. Responded well to carbimozole and got back to normal levels fairly quickly. Was kept on a low dose for another 8 months but stopped taking medication in Jan this year. Unfortunately started having symptoms again last month and after getting a blood test found out that my hyperthryoidism was back, although not as bad as before. When I saw the consultant yesterday he said that as I had relapsed so quickly we would need to consider other options such as RAI. I am a bit concerned about this as hate the thought of being on medication for the rest of my life and also worried about going underactive and putting on loads of weight. Would love to hear others experiences in relation to RAI.

Hi - I had 2 x doses of RAI over 20 years ago and am fine. I take thyroxine every day - but the good news is you get free prescriptions for life for everything once you're diagnosed as underactive (every cloud and all that..!).

The 2nd dose of RAI made me sick for a few days afterwards (the first dose didn't work well enough), but other than that I felt fine.

I am overweight, but can't really blame my underactive thyroid gland for that as I've always been big and frankly, I eat too much... But yes, I'd say that having an underactive thyroid gland doesn't make it very easy to lose weight and I've put a lot on recently as I'm going through the menopause - not sure I'm ever going to shift it...

Taking thyroxine every day is easy - you just get into a routine and have regular blood tests at first to monitor your levels. I now have an annual blood test and they've probably changed my dosage fewer than 5 times over the past 20 years.

Thanks Dotty. I know I am probably worrying over nothing but I think that the doctor is maybe rushing into this and I could have a longer remission period the next time. I have had a lot of stress this year (in addition to covid!) which I don't think helped matters. I have always been thin (even thinner now until this latest episode is under control) and would have to suddenly have to start watching what I eat. Do you know is it always the case that you end up underactive as a result of RAI?

hate to have to...

Hi

From what I've read, I think it's just not an exact science, so although the ideal is to leave some of the thyroid gland working, often the RAI destroys most/all of it. It's far better from a medical point of view to be underactive rather than overactive, as thyroxine is a natural replacement.

Graves disease (what I have and the cause of overactive thyroid gland) was named on my Great Aunt's death certificate - she had a heart attack - so overactive is far worse for your body, although yes, I loved being able to eat anything and still be losing weight!

So it's tons better to get treated and if you end up underactive, they'll find the right dosage of thyroxine and you shouldn't put weight on.

Will keep fingers crossed for you!

I was v poorly with hyperthyroidism (Graves Disease.)
I was worried like you about weight and was slim. I went on Carbimazole and packed weight on as it must have really slowed my metabolism down.
Like you, I tried coming off it, but relapsed twice.
My lovely consultant whom I trusted told me a total thyroidectomy was really the only option for me and left untreated I'd end up with a heart attack or stroke or worse. I did have the option of RAI but my concern was the length of time it takes to work, plus I don't know - it is close to other organs!!
I had the total thyroidectomy. Immediately afterwards I felt absolutely grim and the parathyroids were damaged during surgery, which led to a calcium crash and obviously then a serious Vit D deficiency.
I went straight onto levothyroxine and calcium supplements.
Honestly, it took a year before I felt really well again but it came as such a relief to get mental clarity again and a feeling of wellness and energy.
3 yrs on, I feel great despite being firmly in peri menopause. I am sorry to say I am fat and can't seem to lose weight. Some of that is menopause, some of it is diet but I do believe that my metabolism has irrevocably slowed as a result of the whole thyroid saga.
Just wanted to post to reassure you that taking levothyroxine is a doddle -I take it on waking and my multivits at night to separate them.
Weight is a big issue for me but it took feeling completely crap to accept gratefully feeling well again despite being chunkier!
To answer your question, my understanding is you do go underactive after RAI - it takes up to 6 months. Underactive occurs immediately after thyroidectomy- they are removing the part of your body that makes thyroxine, hence needing levo as artificial replacement and that is why you immediately go on it.
Maybe research all options available - I am now very glad I went ahead with my total thyroidectomy. Good luck.

I've had loads of patients who had it done and they were just fine, it's a brilliant treatment.
Also my cat was at deaths door with a massively uncontrolled hyperactive thyroid, she had radioactive iodine at 17 and she is a totally new cat, she's gone from skeletal back to her normal lovely self and doesn't need thyroxine, you don't always, it was the best things I ever did for her. She's 19 now and bouncing around.