Hi, and thanks for providing this forum for people with Graves Disease.
I was officially diagnosed 6 days ago with Graves. It's pretty surprising, because up til this spring, I had been treated for Hashimoto's Thyroiditis, on Levothyroxine and feeling better than I had in decades. I had insisted on being treated even though my labs were normal (aside from the Hashimoto's antibodies) because I had all the symptoms of being hypo. With a trial, the endo doc said that yes my thyroid had responded like I had needed the Levothyroxine. I felt great for almost a year.
Then this past spring, I started losing weight (although I was trying) and by early summer I was having heart palpitations and rapid heart rate. My endo took me off of all Levothyroxine and I just went back a week ago (after 2 months) to have my labs rechecked. My antibodies for Graves were positive. My TSH was 0.014, Free T3 6.4, and Free T4 1.54. The rapid heart rate and palpitations have gotten a lot worse in the past few weeks. Where earlier this summer I could tolerate a small amount of caffiene or chocolate, I can't at all now. Decaf Liptons is not very good! ;-)
My endo started me on methimizole 10mg, and I actually feel worse and feel like the heart symptoms are worse. I was sick with a sinus infection when I saw him, so didn't think of a bunch of questions until Monday. I asked about my left upper eyelid being a little swollen and droopy and my vision off and on blurry (he didn't respond to that question by phone and I forgot, too) and he did say that I might feel worse for a month before I felt better. I've still been walking 2 miles every other day on a flat street with no problems. I'm tired. I've lost a total of 36 pounds and am too skinny now.
I guess I'm just wondering how I could go from hypo to hyper? My thyroid has been enlarged since my 20's (I'm a 54 year old woman with 2 sons) and I've probably been symptomatic (hypo) for decades before I couldn't stand it anymore. Did I trigger the Graves by taking Levothroxine? Even though my labs were great during the first year and I felt good? I've also developed vitiligo (losing pigment in skin) in the last month, which is also an autoimmune disorder (my grandma had it.) I'm feeling very discouraged, especially when my doc said 90% of patients end up with RAI or a thyroidectomy. I'm afraid I'm getting eye problems from it.
My endo is a pretty clinical-type doc. I'd like to find one with more personality, but right now I don't have the energy.
Any suggestions or encouragement is very welcome. Sorry for being so whiny my first post!