[LillyL]

#1060392

Hello there, I haven’t posted for a long time but am still struggling with Graves…
Endo really pushing RAI and I sure would appreciate your input.
Thanks all and hope you are all feeling well and happy:)
Lilly

[Kimberly]

#1182375

Hello – Hopefully, you will get some responses from others who have chosen RAI as their treatment option. In the meantime, this board also has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “Radioiodine”, etc. to read stories from other patients. You do need to be logged in to use the search function.

You can also read about the risks and benefits of all three options in the “Treatment Options” thread in the announcements section of the forum.

Take care!

[gatorgirly]

#1182376

The first six months were no different than the two years of Graves’ leading up to RAI, but honestly, life after that was exactly like life was before Graves’. I felt healthy and happy and generally well. It’s been three years since RAI and I most days, I forget I ever had it.

[buriedsunshine]

#1182377

Hi Lilly! I had RAI in December of 2013. January and February 2014 I felt pretty awful; I’m pretty sure I was hypo because I was cold, mildly depressed, etc. etc. But I started my replacement hormones in March 2014 and I feel amazing! We had to tweak my dosage but I do feel like I have my life back, however cliche that may sound!

[msgraves]

#1182378

Hi Lilly,

I had my RAI procedure about three weeks ago. Taking the RAI pill itself and going through quarantine for one week afterwards were pretty anticlimactic. I was stressing out while I waited for the doctor to prepare the dose because I was thinking about how drastic it is to destroy an organ. I reminded myself that my quality of life was going to improve tenfold. I had some throat pain in the days following, which peaked at around day three and went away entirely after about 1-1.5 weeks. I was told that my emotional symptoms/mood swings might get worse before they got better. I found, however, that I felt fine for the weeks after the surgery. I’m only now noticing that my moods are fluctuating again, but I’m attributing that to the fact that I’m probably tending hypo now.

All in all, the procedure itself is no big deal. Good luck to you!

[Ski]

#1182379

RAI was my choice (in 1999), and I have few issues with thyroid levels now — I’ll always need to check periodically, but nothing’s run off the rails since my thyroid’s been gone. The one piece of advice I would give is that the initial dose is large enough for complete ablation — at the time I took my (first) RAI, there was still some hope that “just enough” could do the job, but the prevailing wisdom now holds that total ablation ought to be the original goal, and I would agree. I did need a second RAI, and since the first had done its job the best it could, my uptake percentage was much lower and so the second dose had to be higher than the first in order to get the job finally done. I also lived for a period of time in a “sub-clinical hyperthyroid” state, meaning my T4 appeared to be normal, but the TSH was suppressed. I did not feel completely well during that time, but once the second RAI had finished the job, I was able to find true normal for me. It does take a while afterward, but again, total ablation makes it quicker. If the thyroid isn’t completely gone after RAI, you end up with something of a “double whammy” where your thyroid function is coming down, but it’s also responding to the antibodies, so it’s unpredictable and hard to control.

Still, though — this is just one treatment that will “remove” your thyroid. If you’re more comfortable with surgery, your doctor ought to respect that decision.

[Author]

Posts