[DEBBO95]

#1060659

hi i have been dxt with graves for 5 years now and have been treated with methimazole and propranolol. my dosages have changed up/down as my labs and general physical complaints have changed. recently i was taken off my thyroid med all together i guess to see how i would do, ha that was terrible all symptoms plus some now i have tinnitus and the palpitations just awful. so back on the high doses again. so im kindof over the roller coaster ride and i am on the low iodine diet getting ready for uptake scan and planned ablation. i am concerned of course about making the right decision but i really have had enough palpitations etc. so i was wanting advice and/or treatment experience from fellow graves disease sufferers as to what your experience was and how you are doing and feeling after the ablation. Thanks very much.
Debbo95

[Kimberly]

#1183947

Hello and welcome – hopefully, those who have had RAI will chime in with their experiences. You can also use the “Search Posts” feature in the top right-hand corner of the screen and search for “RAI”, “Radioiodine”, etc.. (You have to be logged in to use the search feature).

The biggest issues to discuss with your doc would be whether you already have eye involvement (as there is a risk of worsening eye issues with RAI), whether you are planning a pregnancy in the near future (a waiting period of 6-12 months is recommended), and whether you can adhere to the radiation safety guidelines after RAI (which requires keeping your distance from small children and pregnant women for a short period of time).

This is definitely a difficult decision – please check back in to let us know how you are doing!

[DEBBO95]

#1183948

hi I have noticed quite a few views to my topic/question but no RAI replies. please help as I would really appreciate to hear from others with Graves and their treatment choices.

thanks again

debbo95

[PattiMeg]

#1183949

Hi Debbo,
I am an infrequent poster but just posted an update today, so go ahead and read it. I had RAI almost 8 years ago and I recovered beautifully. I did not experience the swings in thyroid levels as some others on this forum will report. As a matter of fact, I never even went hypo, my endocrinologist monitored my blood levels very closely so I never really “crashed”. I did get thyroid eye disease, I am not sure if the RAI put me at higher risk for that or not. My endocrinologist likes to say “if you want to start a riot at an endocrinology conference, take a position on whether or not RAI puts you at risk for getting TED”. His feelings are that it does not increase the risk.
I have met a number of people who had RAI and they recovered well with no after effects. You will read of others here on this forum who did not have a good experience. It is a difficult scary decision and you don’t feel good which makes it so much harder to make a good choice! so at the end of the day just make sure you have a doctor who you trust, get as much information as you can, then move forward.
I know it sounds trite but it will get better, you will feel “normal” again.
Patti

[Liz1967]

#1183950

I had a total thyroidectomy because I also have the eye disease and the vast majority of docs will not do RAI on Graves eye disease patients. Trust me, you do not want to have Graves ophthalmopathy!

[newmane]

#1183951

to DEBBO
I know 4 women personally who have had ablation in the last 5 yrs are all very happy with it, they all overcame their symtoms from the hyperthyroid and have their sythroid does stable and only have to get rechecked every 6 months. None of them had eye problems before or after. All of them have perfectly normal looking eyes.
you sound exactly like me, Ive been doing the methimazole/up & down, heart racing times, hair falling out, rashes, and worst of all my eye protrudes but I had the eyelid dropped after a year or so but it doesn’t look like it used to and I can feel it in there and it still protrudes so I’m scared to get the RAI b/c I don’t know if it will re-affect my eyes or the other eye and if I’d have to go thru all that stuff again and still not get my eyes back to looking normal.
I’m new to this site today, so I’m going to get the hang of using it because I want to know if your doctor told you if you get RAI you will not get palpatations anymore and what were you told about if it will affect your eyes?
as I said, 4 friends of mine had the ablation and did not have eye complications and do not mention heart palpatations or fatigue or anything. one of them is 81 now and she’s more active that I’ve ever been, she’s having the time of her life.
If I thought getting RAI would do that for me I’d get it today but for whatever reason one doctor doesn’t recommend it and the other does but he’s not the specialist and I don’t think any of them know what to say if it will affect my eyes or not so I’m 2 yrs in and haven’t been given solid answers to that question . I got on here today to ask if anyone know if the RAI does get rid of the heart racing , if so, I still wonder if it would make my eyes worse. Open to comments/input newmane 10 18 15

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