Anonymous
I realize how frustrating it is to feel awful and have to wait — we need to cultivate patience with this disease.
I think it is good that you are seeking asecond opinion from a respected endocrinologist. I hope that it helps.
In the meantime, please do not assume that just because you do not feel well that the medication you are on is “not working.” Perhaps it IS working, and you would feel oh so much worse if you were not on it. If there has been some progress with the actual thyroid hormone levels (as shown on the blood tests) then the medication probably is working. TSH usually takes longer to come into alignment. One way of understanding this is to see TSH as a kind of “working average.” Even though today your levels are OK, the TSH system is still taking into consideration the way the levels were yesterday (or last week/month, etc.) So, it takes a lot of time AT normal for the TSH to show itself as normal, too. This is both good and bad, depending upon your perspective.
Also, there is no pill or treatment for Graves which makes us feel well quickly, unfortunately. That is because the body takes a beating while we are hyperthyroid. Since thyroid hormone works in most cells of the body, while it is out of whack all of those body systems are under stress, and are sometimes damaged. It takes time AT normal levels for those systems to heal. And during this time, we do not feel “well”, even though our levels are back to normal. One endocrinologist at a conference we held a few years ago told us to think of hyperthyroidism in terms of a metabolic hurricane. When the storm is gone, things in an affected community are not instantly “normal” just because the hurricane has passed. It takes time for a community to rebuild. Just so, our bodies need time to rebuild after the “hurricane” of hyperthyroid hormone levels. This is one of the reasons I said, at the beginning, that we need to cultivate patience. We need to feel well again right now — but it doesn’t work that way.
I found it helped to think in terms of “progress” rather than absolutes. (Although sometimes even “progress” can be hard to pinpoint.) I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator