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#1060601

Hello,

I haven’t posted since Oct. when this started but have signed on regularly to read the posts and get support just by knowing that others are experiencing the same things and I haven’t lost my mind.
Diagnosed with Graves in Oct. because I had a thyroid storm.
Started methimazole along with iodine drops and beta blockers.
Brought things to a somewhat normal level by December.
My doctor suggested RAI.
I read everything I could including pretty much every post on this forum.
Had RAI treatment on Jan 14th.
Felt okay, few symptoms but nothing horrible.
Used prednisone to protect my eyes.
All seemed okay.
After about 3 weeks levels began to drop and all indications pointed to the treatment working. Was able to stay of methimazole as the RAI seemed to begin working about 3-4 weeks out. Levels dropped to normal and then doctor kept checking labs every two weeks because she didn’t want me to go too hypo and suffer from that. About 8 weeks after the RAI levels dropped enough to start a very small dose of synthroid. 25 mg for about two weeks then 50 mgs the next two weeks.
This seemed to go fine and I felt pretty good until about one week ago. I started to feel shaky, my heart seemed to be racing more, my metabolism started getting screwy again, the joint pain became ridiculous and I knew in my heart that I was probably going hyper again. Called the doctor who said go get labs and come in tomorrow. I did and just as I feared, it seems my thyroid is now hyperactive again.
So of course, stopped synthroid immediately and have to start on methimazole again. The doctor said the RAI may just need more time. If we have to do it again it of course can’t be done for at least another four months.
I knew this journey was going to entail some ups and downs, but I just wasn’t really prepared for how frustrated, sad and tired I feel since I got confirmation yesterday that what o knew but had hoped was the true, now is.
One thing I haven’t read on the forum is if anyone else was headed in he right direction after RAI for two months to all of a sudden reverse course back into hyper territory. Has this happened to anyone else? Did you eventually go back in the right direction? Did you end up having to have a second RAI?
Did you decide to head in another treatment direction?
Any advice, experience, or thoughts is so very appreciated.
Thank you all for allowing me to read your experiences which has made me feel less alone in this rotten Graves trip.

[Kimberly]

#1183587

Hello – Hopefully, you will hear from others here who have had RAI, but in general RAI can take anywhere from 6-18 weeks to run its course.

One issue that some patients experience is “dumping” – where stored hormone is poured out into the body as the thyroid is destroyed. That usually happens closer to when the RAI is administered (like a couple of weeks out), but it’s worth a thought.

Sorry you are going through this, but it sounds like your endo is really on top of the monitoring situation, so at least that is good news.

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