Hello again. I'm fed so I'm good for a little while. I've always been known as the bottomless pit. Won a pig trophy when I was 12 in a sub eating contest. You sound as skinny and boney as I was in my 20's. I'm still a little underweight right now but I'm slowly getting to my goal of 112. I'm 5'2".
The first step in the process is confirming the elevated FT4 and normal TSH to rule out lab error or interferring antibodies or things like that. Usually two or three runs of the TSH, FT4 and FT3 (not the total T3 you had run) that show the same anomoly starts the process going. The rest of the process, actually written by the guys in chicago that your endo's talking about, can be found online at http://thyroidmanager.org/Chapter16/16d-frame.htm
It's the most authoritative source to be found on the condition. It's highly technical but if you read thru it, you should be able to pick up little bits and pieces. Don't let the big words intimidate you. Just skim over em. It's not necessary to learn everything at once. There's a few things in english in there and what you don't understand, just ask.
The other thing you want to do is make sure that you get copies of all your labs. See if you can get your former labs too. It's easier to track your progress if you have something to refer back to.
How'd you feel on the tapazole? I went thru three years on anti-thyroid meds and to be honest, most of the time felt like total crap. It was like a trip thru hell but they kept changing doses on me cause my tsh kept skyrocketing while I stayed hyper. It drove em nuts. I was finally put on beta blockers by a gp and maintained real well for about 15 years. It got out of control again a little over 2 years ago after a case of shingles. Do you find your symptoms flare and settle some over time?
I think you're right. All those symptoms are probably from your thyroid. They sound very familiar. You wouldn't believe the number of docs who thought I was out of my mind.
It usually is an inherited condition (80%) so if you've got it, your mom probably does too if she has a thyroid disorder. The majority of patients are misdiagnosed as having graves.
Yeah, they can only treat symptoms. It's a genetic defect that cannot be fixed. However, the hardest part of the entire thing is getting a diagnosis instead of a label of being crazy or being misdiagnosed and improperly treated. Once that's done, things get a lot better. Beta blockers do wonders. I use atenolol and am allowed to take extra if needed and kind of adjust it up and down. I take propranolol if things get real ruff. In february I started taking cytomel which is a synthetic form of T3 on top of the atenolol. In april, one of my sisters saw me for the first time in about 5 years and wanted to know what had happened cause she'd never seen me sit still my life. Everyone's commenting on how much better I look and I can't believe how much better I feel. So stop worrying about that part. Getting rid of the symptoms is great.
Just hang in there and please keep me posted. I've been looking a long time for someone who's been thru it too.