Frustrated - Elaine, , Anyone?

[Guest guest]

Went to my 2nd visit with endo #1 today and got stuck with his NP, who couldn't

answer my questions.

Backing up a bit . . .

LABS

9/4 -- TSH .004 (norm .35 - 5.5)

10/14 -- FT4 3.62 (norm 0.61 - 1.76), TSH .005 (norm .35- 5.5), TPO Ab 431

(norm 0 - 34)

Started Tapazole 10 mg BID on 10/18

Started Toprol XL 50mg (What a godsend!) on 10/28

11/03 -- FT4 2.12 (norm 0.61 - 1.76), TSH .004 (norm .35 - 5.5), TPO Ab wasn't

ordered.

Dr. ordered change to Tapazole 20 mg BID on 11/07, but I went to 15mg BID

because I'd had mild hives on 11/1-11/4 that resolved when the weather FINALLY

cooled and didn't want to break out in a big way. No hives for 2 days after the

slight increase in dose (15mg bid) , so I increased to 20mg BID today. After

ONE 20mg dose, I'm sluggish, but will watch this for a couple of days.

Okay, now for the frustrating part. The NP could answer NONE of my questions.

(Why DOUBLE the meds when there'd been such an improvement in the FT4 after 3

weeks on 10mg bid? Why test for TPO Ab instead of TSI? Why no antibody test at

all this past time? Why no FT3? Why does the Dr. feel RAIU is the only way to

distinguish between Hashi's and Grave's?) The only question he could answer was

that I couldn't ask the Dr. myself because he wasn't there. I don't think this

guy even knew what TSI was until I explained it to him (although I doubt I did a

very good job of it - still a bit muddle-brained at this point). Labwork to be

done in 2 weeks. And I'm not to go back for f/u until mid-February. Whatever.

I have an appointment with a different endo this Friday. I'm hoping this guy

is more receptive to my requests. He's definitely closer to the town where I

live. Anyway, I really want to make sure I have my facts straight and can

hold my own when trying to get the tests I've learned are best. I also don't

want to get talked into RAIU testing. I'd like to get all this straight in our

initial visit so we have the same treatment plan from the get-go. Can someone

please point me to specific, concise info that I can either easily

memorize/quote or can print off to take with me? Or even help me formulate my

arguments re: the following?

A) Why I want a TSI rather than/in addition to TPO Ab every time in words the

Doc can relate to.

Why RAIU isn't necessary.

I can explain myself re: why I don't want to consider RAI in my treatment

option, but I don't think these guys are at all receptive to any suggestions re:

lab testing.

Oh. One more thing. I really am nervous about adjusting my dosages without the

Dr.'s go-ahead for a couple of reasons. Am I being overly cautious here? I'd

be interested in hearing a variety of views on this.

Thanks lots!

Carol