Update - long

[Guest guest]

Some of this you all have already heard, but I'll try to be quick.

I've been reading, and re-reading stuff to the point I think I know

just enough to be dangerous if I'm not careful. I'm sure I *think* I

know more than I do, but at least the stress of learning I have

Graves is less than it was and I feel like I may just be able to get

a handle on all this with my doctor.

Called and got copies of my labs. I did like the note the doctor put

in there that she was glad to see I was taking such an interest in

what was going on. Anyway, as I suspected, we have been only looking

at TSH numbers since I started this journey in June. The actual

number was and has stayed at .004 (Lab range is .35 - 5.5) and I

guess this is what sent her in the direction that it wasn't working

and next is the RAI. She hasn't suggested I go to an endo and to be

honest, if I can get some control over testing and medicating, it

sounds to me like I might not need to get one right away. I've called

a couple of endos in the insurance plan and was pretty much told that

the preferred method of treatment was RAI so they were scratched off

the list!

I have had labs run 3 times (due to go back in a week for new ones)

and the first time (June 18) the dr ran both WBC and liver tests. I

know she said that she wanted to make sure to have these done if I

went on the ATDs which I finally did on July 11. I had the uptake

scan done July 9 with a result of 82.2%. The doctor called (didn't

know doctors did that anymore. Scared me to death at first!) with the

results and I started PTU on July 11 - 50mg 3 times a day. The second

appointment was July 22 and we tested the WBC again, but only did the

TSH which remained at .004. I was a little surprised that she thought

things would change enough in only two weeks, but went along with the

dosage increase to 100mg 3 times a day. Meanwhile reading and trying

to learn more about Graves in general and treatments in specific.

I went back on September 5 with terrible muscle cramping. Cramps that

would keep me from walking or moving for a few minutes and the area

stayed sore for days afterwards. They started out at night and then

progressed to anytime of the day or night. She ordered a Comp.

Metabolic Panel (14) and another TSH test. When the same .004 result

came back once again she called and wanted me to go talk to the RAI

guy. Having thought about this already, I told her I would go talk to

him if that was what she wanted, but that this was not my preferred

method of treatment and I doubted that he would be able to change my

mind. She didn't seem to have a problem with the decision, but said

that she would like to try me on methimazole 10mg three times a day

to see if it worked better for me.

I've been on 1 or 2, if needed, Propranolol 10mg 3 times a day from

the beginning, but taken them only when needed for quite awhile now.

I guess my question is what tests do I ask for? FT4 and FT3 only? Is

there something else? TSI maybe to get a baseline number? I'd like to

let her know what I want done so that I can have all the results the

next time I go in to actually see her on October 28. I feel so much

better with the change in meds and it's been great to be able to

sleep through the night again without all the crazy heart stuff going

on or having to jump out of bed to try to work out a leg cramp. I'm

still working on the big life style changes, but I'm figuring out

what causes reactions and that's a step in the right direction anyway.

Just have to say Thanks for being here when I needed you all so much.

I don't even want to think about the alternative. I know that the

peace of mind I got just from reading the intro letters and Elaine's

book has made all the difference in how I feel. I've gone back to the

beginning and am reading every posting to learn and figure out what,

when, where....... I don't have to be in total control of this

situation, but I do have to try to understand.

Carolyn B.

(Ladychb)