Re: Surgery as opposed to RAI or Meds?

[Guest guest]

Hi Deidre,

what your doctor says is exactly what Harvard's Dr. P. Larsen says. And

he's one of the top thyroidologists in the country. He says that by 18 months

most everyone will be in remission on ATDs. If they're not yet in remission,

they'll have an idea of their individual disease course and know if they're

close to remission. They can then decide if they want to just stay on the

meds. This is the best approach because you have the best chance of ending up

with normal thyroid function. Less than 20% of people on ATDs will still

eventually become hypothyroidism and this is due to the natural disease

course, not the meds. Take care, Elaine

[Guest guest]

> My question is...Good/Bad about surgery? RAI? Meds? My Endo said

> that I should plan to be on PTU for about 18 months, and if that

> does

> not throw me into remission, then surgery or RAI is the other

> option.

This is a variation of the standard line. The good thing is that he says

18 months rather than a year. Then again, I remember telling ex-endo #2

that I wanted to be on ATD's for 18 months to be sure I was covered

through a potentially stressful family event. He agreed readily, maybe

because he knew something I didn't know at the time - that his

incompetent monitoring would get me hypo fairly early on and that I might

end up getting off of them sooner as I climbed out of hypothyroidism.

Luckily it wasn't too bad.

Here's what you need to know that I didn't at the time that will help you

find success with ATDs.

- Get baseline blood count and liver enzyme panel before taking ATDs.

Even if he says he'll do it for the first two months, and I assume he

will because even the " endo " I referred to above did, you need a baseline

for comparison to be assured that the ATDs are throwing you no more off

kilter that you were before starting them. (Let me clarify this: it's

common to have " off " counts for these tests when you have Graves. What

endos look for the first two months is dangerous irregularities. You want

to be sure that you weren't already irregular so your endo can't blame

the ATDs and persuade you to quit them.

- Get the antibodies tested that this list recommends.

- While on ATDs have blood work done every 6-8 weeks, maximum, sooner if

you feel something's wrong. Make sure you have the same tests done each

time - e.g. don't let your dr. switch off between total T4 and free T4.

And never let him rely on TSH alone; always get a FREE T4 too. FREE T3 is

nice too but may not be essential.

- You, like me, may find your TSH starting to rise fairly soon in the

game. Don't be talked into staying on the same dose if it starts to get

near 2 or higher - you may already be hypo. (My TSH was 2 and the T

whatever he tested was normal after 3 months on 20 mg. Tap a day. I

listened to him and stayed on 20 mg. for another 3 months, ending up with

a TSH of 7.)

- When you are ready for a dose reduction, go in gentle increments. For

methimazole, that's no more than 5 mg. at a time. I don't know what the

equivalent is for PTU.

- If you have any questions about reactions, contact this list. Don't be

afraid of being a nudge. There are serious reactions, though it's very

rare, and others that your dr. might scare you about but that are

actually not serious and the pros here can walk you through. Also,

remember - if it turns out you really can't take PTU you CAN try

methimazole.

- You may not like this dr.; perhaps, like mine, you discover he's really

incompetent but you may be stuck with him till you can find a decent dr.

These guidelines and this group will help you work with him as long as

you have to.

Surgery is a good option under the following circumstances - one has

serious reactions to both ATDs, one is worried about her clock ticking,

as part of the treatment for thyroid cancer- among others. It's not a

piece of cake but in my mind, preferable to the 3rd standard Graves

option.

Take care and keep us posted, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

> My question is...Good/Bad about surgery? RAI? Meds? My Endo said

> that I should plan to be on PTU for about 18 months, and if that

> does

> not throw me into remission, then surgery or RAI is the other

> option.

This is a variation of the standard line. The good thing is that he says

18 months rather than a year. Then again, I remember telling ex-endo #2

that I wanted to be on ATD's for 18 months to be sure I was covered

through a potentially stressful family event. He agreed readily, maybe

because he knew something I didn't know at the time - that his

incompetent monitoring would get me hypo fairly early on and that I might

end up getting off of them sooner as I climbed out of hypothyroidism.

Luckily it wasn't too bad.

Here's what you need to know that I didn't at the time that will help you

find success with ATDs.

- Get baseline blood count and liver enzyme panel before taking ATDs.

Even if he says he'll do it for the first two months, and I assume he

will because even the " endo " I referred to above did, you need a baseline

for comparison to be assured that the ATDs are throwing you no more off

kilter that you were before starting them. (Let me clarify this: it's

common to have " off " counts for these tests when you have Graves. What

endos look for the first two months is dangerous irregularities. You want

to be sure that you weren't already irregular so your endo can't blame

the ATDs and persuade you to quit them.

- Get the antibodies tested that this list recommends.

- While on ATDs have blood work done every 6-8 weeks, maximum, sooner if

you feel something's wrong. Make sure you have the same tests done each

time - e.g. don't let your dr. switch off between total T4 and free T4.

And never let him rely on TSH alone; always get a FREE T4 too. FREE T3 is

nice too but may not be essential.

- You, like me, may find your TSH starting to rise fairly soon in the

game. Don't be talked into staying on the same dose if it starts to get

near 2 or higher - you may already be hypo. (My TSH was 2 and the T

whatever he tested was normal after 3 months on 20 mg. Tap a day. I

listened to him and stayed on 20 mg. for another 3 months, ending up with

a TSH of 7.)

- When you are ready for a dose reduction, go in gentle increments. For

methimazole, that's no more than 5 mg. at a time. I don't know what the

equivalent is for PTU.

- If you have any questions about reactions, contact this list. Don't be

afraid of being a nudge. There are serious reactions, though it's very

rare, and others that your dr. might scare you about but that are

actually not serious and the pros here can walk you through. Also,

remember - if it turns out you really can't take PTU you CAN try

methimazole.

- You may not like this dr.; perhaps, like mine, you discover he's really

incompetent but you may be stuck with him till you can find a decent dr.

These guidelines and this group will help you work with him as long as

you have to.

Surgery is a good option under the following circumstances - one has

serious reactions to both ATDs, one is worried about her clock ticking,

as part of the treatment for thyroid cancer- among others. It's not a

piece of cake but in my mind, preferable to the 3rd standard Graves

option.

Take care and keep us posted, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com