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  • waffleflammen
    Post count: 1

    Hi, I was diagnosed with Graves Disease back in 1999 when I was diagnosed with a toxic goiter, but it was my heart palpitations that actually got me diagnosed.

    I took RAI and now I’m considered hypo, though I take levothyroxin every day.

    For years I’ve been searching for info for people like me, who have already had RAI and just are experiencing weird symptoms and are wondering how much of it is connected to Graves… also, I read that people are in remission, but my doctor NEVER mentioned that’s even a possibility?

    I’m trying to find out what symptoms you still get even when yuo’re treated
    How do you know if you’re remission and what does that mean?
    I’ve been working from home for about 7 years and now that we have to come into the office now, it feels like I get sick at least 2x a month now (my spouse also works in a children’s hospital, so I thought that may be part of the reason)

    I feel nausea in the morning after I take my levothyroxin and don’t eat in an hour… and sometimes I just have rolling nausea that comes and goes within a few minutes. I’m tired all the time, I’ve started taking b12

    I found some books but only for people that are starting their journey. what about those of us who started it before technology got better and want find out if there is anything new for us, since I think I still get symptoms

    I just feel like the Drs I’ve seen didn’t really prepare me, they just treated me

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello and welcome – hopefully, those who have had RAI will chime in with their experiences.

    As for remission, the definitions vary a bit. Many docs use the term “remission” to someone who has done a round of antithyroid meds (like methimazole or PTU) and then has stopped the meds and maintained normal levels for a year or more.

    That definition doesn’t really fit for those who have had RAI, although I suppose that when you get your antibodies down to zero, that could be considered “remission” as well.

    If it’s been a while since you’ve seen your primary care doc, it might be worth checking in with him/her on the nausea.

    Hope you can get some relief!

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