Hello,

My Labs in May were
T3 total 207H range 60-181
T4 Free 1.9 H range 0.8-1.8
TSH is normal 2.25 range 0.40-4.50

I had another full lab done a couple weeks ago but i dont have a copy of it. The Dr has been communicating with me over the phone. She said she was still getting the same picture...normal TSH but everything else was high. When I was 8yrs old they put me tapazole until I was around 20yr old then they took me off it to see if i was okay without it which i was for a little while. I was seeing a different endocrinologist last yr and he acted like i was crazy that i was completely fine and wanted me to take synthroid to prevent my nodules from growing anymore. My mom had hyperthyroidism when she was about 20yrs old and went into a thyroid storm. She got radioactive iodine and now at 57yrs old she is hypothyroid. She also has nodules and one is really big. I get really bad anxiety and dizziness which they told me was just related to my stressfull life style...My Boyfriend has ful custody of his 2 kids and I am in college and work full time. I think the dizziness, anxiety, feeling faint and weighing only 98lbs is because of my thyroid. My endo told me to get the MRI of the pituitary gland and a bloodtest for the pituitary gland and if that is normal she has call a DR in Chicago to find someone in my area to do the bloodtest for the thyroid hormone resistance. She also told me if thats what is is...they can only treat symptoms is that true?...Also she said if thats what i have my mom might have that ro but just wasn't tested for it.

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 [url]http://thyroidmanager.org/Chapter16/16d-frame.htm[/url] 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.