question regarding--confusion!

[Guest guest]

Hello all. I have learned so much from all of you here, and on the

mediboard. I do know that once you start meds, you should have labs

every 4-6 weeks. I saw my endo for the second time and my next

appointment is 2 and 1/2 months. I was started on 50mg PTU-3 times a

day.

I am confused as to what tests I should ask for if I decide to do as

I should and not wait the 10 weeks. I have had the FT4 and FT3 three

times so far and always normal. TSH was done initally with my GP and

was .02. My endo apparently did not treat me according to my TSH

because he had that result on the first visit and did not give me a

med perscription. He ran the FT's again{normal} and TSI and TPO. On

my second visit the results of the TSI and TPO were not back. They

had to send out for them. He told me that he knows it is the

antibodies, even tho the tests were still out, and started me on the

PTU.

Please bare with me guys. This is my confusion. He is running the

TF4 and TSH one week before my next visit. I am wondering what

should I do about labs before this? Since they are always normal,

except for TSH, does that mean I have to have the TSI every time?

These antibodies tests will be 3 months old by my next visit---so how

will the med dose be evaluated. I'm sure my TF4 will be normal as

always and so will I be left at the mercy of TSH?

He seems to be an expert on Graves' and I like him. It's just I am so

confused. I hope this made sense. I had a hard time putting it into

words. He explained in detail{with pics even!} what's going on in my

body and I read every post here and the board. I read Elaine's book,

plus afew others.. Why can't I understand this situation?

I have TED in one eye{altho, doc said both eyes are affected} and

a " large Goiter " . I can't see it!

Should I get labs done sooner? Should I wait, with the exception of

any hypo symtoms.

Thanks for being here. Donna

[Guest guest]

Hi Donna,

I'm still struggling with these concepts myself, but here's my

understanding so far. If you have TED yet normal thyroid levels it

means you have both blocking and stimulating antibodies and together

they are making you euthyroid. Like your endo said, " It's the

antibodies. " My guess is they are the only good indicators of your

Graves', plus improvement of your eye symptoms and goiter. (I wish my

endo understood this!)

Luckily your endo is willing to give you PTU despite " normal " levels,

as the ATD is believed to control the antibodies. But that means you

do want to monitor for hypo symptoms, as your levels are already OK,

and in time may need to add some hormone replacement. That might mean

checking your FT4 and FT3 levels in a months or so. (My endo only

does FT4 and T3, but FT3 is better.)

If I understand this, you can assume that you'll have TSI and TSH

receptor blocking antibodies for a while and focus on being able to

take some PTU while keeping your levels out of hypo. Later, when you

check for remission, you'd test the antibodies again.

Hopefully if I'm missing something here someone else will chime

in . . .

Best wishes,

B.