Going off ATDs

October 8, 2003

Well folks next week will mark the 2nd anniversary of my thyroid

storm and diagnosis of Graves. I have gradually reduced my

Methimazole to the point where I have been on 2.5mg for the past 8

months. I have been euthyroid for the past 17 months and my last

antibody test was done in the spring, showing it to still be high(if

you remember, I live in Canada and can't seem to get anyone to admit

there is such a thing as a plain old TSI test).

My endo says it's time to go off Methimazole to see if I'm in

remission..I decided to try taking it every other day for a couple

of weeks before going off it completely. I am starting week 2 of

every other day and I have to say that I am on such a roller coaster

ride. I take my pill in the evening as I found that to be the ideal

time for me..the following day, I feel great but by the next day I'm

shaky, rapid pulse, irritable..I just can't wait to take my pill in

the evening. I have been waiting for this to go away but I couldn't

even stand myself or my family yesterday!!! Today I'm calm and

rational as I took my pill last night! I am also wondering if having

my period last week during this had something to do with it.

Has anyone else experienced this roller coaster when going off of

ATD? Is my body trying to tell me to go back to 2.5mg every day and

that I'm not ready to go off yet? I was feeling the best I had ever

felt prior to taking the Methimazole every other day.

Any advise? I am not looking forward to facing tomorrow if it will

be like yesterday!!! Should I go back to taking 2.5mg every day and

forget about what the endo said? Thanks.

Lori

Diagnoised Graves Oct/01 after thyroid storm. Currently 2.5mg

Methimazole for past 8 months, blood pressure finally under

control!!!!

October 8, 2003

I know this is a dumb question but I am a newbie....

What is wrong with just keeping on your schedule and taking the pill?

Why do you have to see if you are in remission? If everything is going

well, can't you just stick with your pill?

Jae

> Well folks next week will mark the 2nd anniversary of my thyroid

> storm and diagnosis of Graves. I have gradually reduced my

> Methimazole to the point where I have been on 2.5mg for the past 8

> months. I have been euthyroid for the past 17 months and my last

> antibody test was done in the spring, showing it to still be high(if

> you remember, I live in Canada and can't seem to get anyone to admit

> there is such a thing as a plain old TSI test).

>

> My endo says it's time to go off Methimazole to see if I'm in

> remission..I decided to try taking it every other day for a couple

> of weeks before going off it completely. I am starting week 2 of

> every other day and I have to say that I am on such a roller coaster

> ride. I take my pill in the evening as I found that to be the ideal

> time for me..the following day, I feel great but by the next day I'm

> shaky, rapid pulse, irritable..I just can't wait to take my pill in

> the evening. I have been waiting for this to go away but I couldn't

> even stand myself or my family yesterday!!! Today I'm calm and

> rational as I took my pill last night! I am also wondering if having

> my period last week during this had something to do with it.

>

> Has anyone else experienced this roller coaster when going off of

> ATD? Is my body trying to tell me to go back to 2.5mg every day and

> that I'm not ready to go off yet? I was feeling the best I had ever

> felt prior to taking the Methimazole every other day.

>

> Any advise? I am not looking forward to facing tomorrow if it will

> be like yesterday!!! Should I go back to taking 2.5mg every day and

> forget about what the endo said? Thanks.

>

> Lori

> Diagnoised Graves Oct/01 after thyroid storm. Currently 2.5mg

> Methimazole for past 8 months, blood pressure finally under

> control!!!!

>

<image.tiff>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is

> not intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the

> endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> -----------------------------------------------------------------------

> ---------------

>

October 8, 2003

Lori,

My advice: listen to yourself (your mind and your body), and also get labs

to help guide your decisions. I think we often know better, but sometimes

it is hard to carry it out when faced with opposition by someone with a

fancy degree. We live in our bodies, and we pay the price or receive the

benefits of whatever action is chosen.

Going off meds to see if one is in remission is not sensible to me,

especially if you feel you are on a rollercoaster. If antibodies are high,

you are likely to relapse promptly.

Take care,

At 01:43 PM 10/8/2003, you wrote:

>Well folks next week will mark the 2nd anniversary of my thyroid

>storm and diagnosis of Graves. I have gradually reduced my

>Methimazole to the point where I have been on 2.5mg for the past 8

>months. I have been euthyroid for the past 17 months and my last

>antibody test was done in the spring, showing it to still be high(if

>you remember, I live in Canada and can't seem to get anyone to admit

>there is such a thing as a plain old TSI test).

October 8, 2003

If it were me, after being taken off and on the meds like what was

done to me, and you already can tell by trying to wean yourself off

that you're most likely going to have a problem, I'd have to tell the

dr, nope, ain't going off of them just yet. But, that is me, and I'm

real stubborn as my dr has figured out.

I think that if they can't test the antibodies, without you going off

the meds, then they should just write the script and let it be. But,

I'm known to be a tad bit oppositional every now and then! :-)

Sandy~Houston

On Wed, 08 Oct 2003 17:43:22 -0000

" Lori " wrote:

October 8, 2003

Lori,

Don't do it !

That does not sound right at all !

When I still had to take my PTU, each time I was late on a pill, I felt that

way.

Then one day, I only felt better right before the pill was due.

THEN I took another 6 months coming down from there.

With no insurance I have never had an extra 500 bucks they want for me ( as

uninsured the cost is higher ) for the infamous TSI.

Do I tell everyone to insist on the test? Yes.

But this can be done by those of us in desperate circumstances, we just have

to be smarter and stick to our guns.

Remember, to keep the scrip coming, it does not matter what you have to say

to this doctor. Maybe you were a very good girl and took no meds at all for

a week or two. But you got more and more hyper, and it was SO BAD, you did

not have time to get labs before you took some more pills. You thought you

were going to die.

The way you are describing what is happening, is the way I felt back at two

years only. It will change for you. But this is not the way.

Allowing yourself to become more hyper will only increase your antibodies,

and you have then set yourself back a year.

Then the next battle will be when they say the studies say anyone that hit

remission and relapsed prove that ATDs will never work for them.

Besides the extra year you will have to fight to continue on meds before

they try to cut you off.

What if you are REALLY only 6 months away from the change ? Sure would be a

shame to screw this all up because you are doing what you know is wrong.

Listen to your gut.

Your body will not lie to you.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

October 8, 2003

Thanks guys this is what I needed to hear. Pam, I hear you..what if

I am only 6 months away from remission, then I will be setting

myself back. I have a very good GP who is willing to go with

whatever I decide to do regarding my Graves and listens to

everything I have to say..everything that comes out of my endo's

mouth is text-book. I have made an appt with my GP tomorrow and will

get some labs done and will definately be taking my pill tonight!

Thanks again.

Lori

October 9, 2003

Hi Lori,

Although you didn't share test results, it seems to me that your body is

saying loud and clear that you are not ready to come off the methimazole. As

someone who's been on Tap for years with no end in sight, but for the most

part stable on a low dose, I wouldn't acquiesce to your doc's trying to get

you off like that. You may need to take 2.5 mg. for the rest of your life!

And it won't hurt you a bit to do that, either.

I just had blood tests and discovered (thought something was a bit off) that

I had gone a bit hyper, myself. My FT4 was up to 2.1 (the range tops out at

1.8). I find I feel best right at the top of the normal range, even if my

TSH is nonexistent (which it is), so I try to cut things pretty close

dose-wise. I had been cutting back a tiny bit from 2.5 mg. a day taken in

two even doses, to just shaving a bit off the quarter pill each time (or not

depending on how the cutting went). Well, I'm solving my slight hyper by

going back to a bit higher dose. My shakes are gone, my pulse back to a

steady 72, and I'm sleeping better.

If the antibodies aren't gone, the GD isn't either. I don't understand why

some docs are so eager to get people completely off meds. If you just go

back to hyper and miserable, what's the purpose? To get you to undergo RAI

maybe?

Terry

>

> Reply-To: graves_support

> Date: Wed, 08 Oct 2003 17:43:22 -0000

> To: graves_support

> Subject: Going off ATDs