Post count: 93172

    Hi, Kim:

    Well, there’s absolutely no way that I — or anyone online — can tell you what is causing the swelling around your eyes. Is it Graves’ related? It could be. It also might not be. Only your doctor can say for sure — or at least give the best guess.

    As for changing the dose of replacement hormone: my dose changed every three to six months for the first six years. Having said that, please do not think that I felt lousy for that long. I felt fine almost all of that time. But adjustments needed to be made, both up and down. There can be at least two reasons for making the adjustments. First — the RAI can cause thyroid cell destruction for months. Patients who need a second RAI usually have to wait about six months for their doctors to be sure that the second treatment is really needed.

    The second reason for needing adjustments has to do with the nature of the disease — i.e. autoimmunity. The antibodies are not affected by any of the treatment options available to us. And the antibodies will continue to attack any remaining thyroid tissue. There usually is thyroid tissue left after RAI or surgery. So, the antibodies continue to have a target — just, hopefully, a small enough target that they cannot make us ill again. It is thought that the antibody attack will eventually destroy thyroid cells, over time, and as that happens we will need more replacement hormone (perhaps). Antibody attack could also cause you to need an downward adjustment in your meds — at least theoretically.

    In other words, it is possible to need replacement hormone dose adjustments over time. It’s a reasonably easy “fix” and, typically, once we are on replacement, the adjustments are minor and we do not necessarily even know that we need one (i.e. we “feel” fine). But especially at first, you can expect dose adjustments.

    I hope this explanation helps.
    Bobbi — NGDF Online Facilitator