I've been down this road before. The kind of road where you have just enough familiarity with it to antipate each twist and turn. Even though the twists and turns are the same, I must say, I've NEVER gotten used to them. Here's what's up.
If you read my post a couple days ago you know that my doctor had me switch back to Methimazole from PTU. I'm taking 20mg twice a day. A good dose. You'd think that after 4 days the typical symptoms you have when your labs are out of bounds would subside. But not mine. Especially what I call the heart "fluttering." The sensation that feels like your heartbeat has a vibration to it. When I get up and move around quickly I get lightheaded.
In the past when this would happen I'd go to work and pretend all was normal. But today I decided not to go to work. For those of you reading this who have Graves', you know how difficult living with symptoms can be. The added stress of trying to work through it, as I have for 7 years now, is sometimes too much.
Finally, I'm at the point where the anti-thyroid medication treatment plan is wearing thin. I would love to hear from some of you who've had either surgery or RAI and how you did with that treatment plan. I worry immensely because of my ongoing eye complications. The "active" eye phase is supposed to stop after 30 months. My eyes have had problems for 80+ months with no end in sight (pardon the pun!) There's always the risk that either of the two options remaining can negatively impact the eyes, including the eye protrusion, and possibly severely.
Today my eyes look normal to most people. That is except for me and my U of M eye specialist. The thought of having complications due to an alternate treatment plan is downright frightening. I don't know if I could handle the eye bulging all over again, and taping my eyelid shut at night. I suppose things could be worse, but all I want is the constant ups and downs of Graves' to end. It's too much of a roller coaster and this is the worst I've felt in quite some time.
The other question I have for readers is this: for those of you seeing both an endocrinologist and an eye specialist, are they in the same location (or working out of the same hospital) or are they seperate? In my case, my primary care physician works out of one hospital, my endocrinologist works out of another hospital, and my eye specialist works out of yet a 3rd hospital. And none coordinates care for me. I do that. U of M has outstanding Graves' specialists on the endocrinologist front, so I'm thinking of switching doctors after seven years with the one I have. Just to have better coordinated care and discussions around alternate treatments (most notably because if I did have eye issues I'd have my eye specialist perform the surgery). Make sense?
Today was especially frustrating for me. As a problem solver I just want directions to just make things better. Like the ingredients and directions on preparing a recipe (something I'm good at). But health issues don't work that way. Even when you follow "Doctor's orders" to the letter that's still no guarantee you'll improve. So that's where I find myself late this evening. Wondering what to do next knowing if I go back to bed the "fluttering" will increase (for some reason when I'm lying flat it's worse) which will only add to my anxiety, and sleeplessness. So just like I did nearly 5 years ago (this May) when I started my little blog, I sit here typing away hoping to help someone, maybe even you, understand how complicated, and frustrating, Graves' Disease really is.