Re: Should I consider RAI now?

[Guest guest]

Hello and welcome!

Sounds to me like your doc does not know what he is doing in monitoring your

ATD dosage and is not telling you how to properly take your meds. Also, you

shouldn't be taken off of ATD's simply because your thyroid levels come down

into normal range! Did this doctor ever check your TSI antibodies before

taking you off of the PTU? I'll bet not.

You need a new doctor who knows how to treat you with meds into remission.

This doc does not and it would make HIS life much easier if you kill your

thyroid and become hypothyroid for the rest of your life. It certainly won't

make your life any easier. You will trade one thyroid disorder for another,

and hypOland is not somewhere you want to go to.

RAI was the worst mistake of my life! In Doris' words, " A thyroid is a

horrible gland to waste. "

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

Hello and welcome!

Sounds to me like your doc does not know what he is doing in monitoring your

ATD dosage and is not telling you how to properly take your meds. Also, you

shouldn't be taken off of ATD's simply because your thyroid levels come down

into normal range! Did this doctor ever check your TSI antibodies before

taking you off of the PTU? I'll bet not.

You need a new doctor who knows how to treat you with meds into remission.

This doc does not and it would make HIS life much easier if you kill your

thyroid and become hypothyroid for the rest of your life. It certainly won't

make your life any easier. You will trade one thyroid disorder for another,

and hypOland is not somewhere you want to go to.

RAI was the worst mistake of my life! In Doris' words, " A thyroid is a

horrible gland to waste. "

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

Hello and welcome!

Sounds to me like your doc does not know what he is doing in monitoring your

ATD dosage and is not telling you how to properly take your meds. Also, you

shouldn't be taken off of ATD's simply because your thyroid levels come down

into normal range! Did this doctor ever check your TSI antibodies before

taking you off of the PTU? I'll bet not.

You need a new doctor who knows how to treat you with meds into remission.

This doc does not and it would make HIS life much easier if you kill your

thyroid and become hypothyroid for the rest of your life. It certainly won't

make your life any easier. You will trade one thyroid disorder for another,

and hypOland is not somewhere you want to go to.

RAI was the worst mistake of my life! In Doris' words, " A thyroid is a

horrible gland to waste. "

God bless,

http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html

[Guest guest]

You tapered off the meds nicely the first time, but you obviously

still needed to take some PTU. I think this last time, you should

have stayed on the 25 mg 3 times a day for a while and stabilized,

instead of dropping it cold turkey and watching your thyroid levels

climb back up again. You can taper down again, and perhaps just take

a small maintenance dose indefinitely. Since the PTU works for you,

there is no reason to quit taking it and kill your thyroid with

radioactive iodine!

I have been on the other antithyroid drug, Tapazole, for 23 years. I

am currently on 6 mg a day (2mg, 3 times a day). This is equal to 60

mg a day of PTU. If you were doing well on 75 mg a day of PTU, your

doctor should have left well enough alone! Once your levels started

going too low, then you could taper down SLOWLY again. At some point

you may be able to drop the meds again, or you may just need to take

a small amount for an extended period of time. It's no big deal.

I'd suggest going back on a small amount of the PTU again. RAI will

not solve your problems, as you will see others who have to juggle

all kinds of medications trying to replace the thyroid hormone and

keep the antibodies under control.

The PTU is helping to keep your thyroid antibodies in check. If you

destroy the thryoid, you will still have the antibodies, only then

they will find other organs and tissues to attack.

Chris

> Found this group yesterday. It is a great site!

>

> I have family history of GD. Five of six of my mom's siblings had

GD.

> Three of them went remission with PTU treatment for over 3-7 years.

> My mom got RAI and now is on oral hormone daily. The other one is

> still on PTU.

>

> I was first diagnosed for GD in Oct. 1998. I was on 150mg PTU three

> times a day. It sent me to hypo in 8 weeks. So I decreased it to

> 100mg three times a day for 8 weeks. I was still hypo but less

severe

> compare to 150mg dosage. So I backed to 50mg three times a day for

8

> weeks, then I was normal with 50mg three times a day. I was on that

> for 4 months, then 25mg three times a day for 4 months, 12.5mg

three

> times a day for 4 months. Then on and off 12.5 once every one or

two

> days for a couple of months. I was normal all the way.

>

> So, my doc asked to stop the medication afterwards and I did. I was

> OK for half a year. Then, I was hyper again in the beginning of

2001.

>

> So I was back on PTU 50mg three times a day from summer of 2001

unil

> the winter of 2002. As before, I was normal under that treatment

> except some weight gain. I lowered to 25mg three times a day after

> Sept. of 2002. Blood test done in Dec of 2002 showed that I had a

> normal T4, normal and bit low TSH. The doctor asked me to stop PTU

> completely and take the RAI.

>

> I am strugling between PTU and RAI. What do you think? any input

will

> be greatly apppreciated.

[Guest guest]

You tapered off the meds nicely the first time, but you obviously

still needed to take some PTU. I think this last time, you should

have stayed on the 25 mg 3 times a day for a while and stabilized,

instead of dropping it cold turkey and watching your thyroid levels

climb back up again. You can taper down again, and perhaps just take

a small maintenance dose indefinitely. Since the PTU works for you,

there is no reason to quit taking it and kill your thyroid with

radioactive iodine!

I have been on the other antithyroid drug, Tapazole, for 23 years. I

am currently on 6 mg a day (2mg, 3 times a day). This is equal to 60

mg a day of PTU. If you were doing well on 75 mg a day of PTU, your

doctor should have left well enough alone! Once your levels started

going too low, then you could taper down SLOWLY again. At some point

you may be able to drop the meds again, or you may just need to take

a small amount for an extended period of time. It's no big deal.

I'd suggest going back on a small amount of the PTU again. RAI will

not solve your problems, as you will see others who have to juggle

all kinds of medications trying to replace the thyroid hormone and

keep the antibodies under control.

The PTU is helping to keep your thyroid antibodies in check. If you

destroy the thryoid, you will still have the antibodies, only then

they will find other organs and tissues to attack.

Chris

> Found this group yesterday. It is a great site!

>

> I have family history of GD. Five of six of my mom's siblings had

GD.

> Three of them went remission with PTU treatment for over 3-7 years.

> My mom got RAI and now is on oral hormone daily. The other one is

> still on PTU.

>

> I was first diagnosed for GD in Oct. 1998. I was on 150mg PTU three

> times a day. It sent me to hypo in 8 weeks. So I decreased it to

> 100mg three times a day for 8 weeks. I was still hypo but less

severe

> compare to 150mg dosage. So I backed to 50mg three times a day for

8

> weeks, then I was normal with 50mg three times a day. I was on that

> for 4 months, then 25mg three times a day for 4 months, 12.5mg

three

> times a day for 4 months. Then on and off 12.5 once every one or

two

> days for a couple of months. I was normal all the way.

>

> So, my doc asked to stop the medication afterwards and I did. I was

> OK for half a year. Then, I was hyper again in the beginning of

2001.

>

> So I was back on PTU 50mg three times a day from summer of 2001

unil

> the winter of 2002. As before, I was normal under that treatment

> except some weight gain. I lowered to 25mg three times a day after

> Sept. of 2002. Blood test done in Dec of 2002 showed that I had a

> normal T4, normal and bit low TSH. The doctor asked me to stop PTU

> completely and take the RAI.

>

> I am strugling between PTU and RAI. What do you think? any input

will

> be greatly apppreciated.

[Guest guest]

You tapered off the meds nicely the first time, but you obviously

still needed to take some PTU. I think this last time, you should

have stayed on the 25 mg 3 times a day for a while and stabilized,

instead of dropping it cold turkey and watching your thyroid levels

climb back up again. You can taper down again, and perhaps just take

a small maintenance dose indefinitely. Since the PTU works for you,

there is no reason to quit taking it and kill your thyroid with

radioactive iodine!

I have been on the other antithyroid drug, Tapazole, for 23 years. I

am currently on 6 mg a day (2mg, 3 times a day). This is equal to 60

mg a day of PTU. If you were doing well on 75 mg a day of PTU, your

doctor should have left well enough alone! Once your levels started

going too low, then you could taper down SLOWLY again. At some point

you may be able to drop the meds again, or you may just need to take

a small amount for an extended period of time. It's no big deal.

I'd suggest going back on a small amount of the PTU again. RAI will

not solve your problems, as you will see others who have to juggle

all kinds of medications trying to replace the thyroid hormone and

keep the antibodies under control.

The PTU is helping to keep your thyroid antibodies in check. If you

destroy the thryoid, you will still have the antibodies, only then

they will find other organs and tissues to attack.

Chris

> Found this group yesterday. It is a great site!

>

> I have family history of GD. Five of six of my mom's siblings had

GD.

> Three of them went remission with PTU treatment for over 3-7 years.

> My mom got RAI and now is on oral hormone daily. The other one is

> still on PTU.

>

> I was first diagnosed for GD in Oct. 1998. I was on 150mg PTU three

> times a day. It sent me to hypo in 8 weeks. So I decreased it to

> 100mg three times a day for 8 weeks. I was still hypo but less

severe

> compare to 150mg dosage. So I backed to 50mg three times a day for

8

> weeks, then I was normal with 50mg three times a day. I was on that

> for 4 months, then 25mg three times a day for 4 months, 12.5mg

three

> times a day for 4 months. Then on and off 12.5 once every one or

two

> days for a couple of months. I was normal all the way.

>

> So, my doc asked to stop the medication afterwards and I did. I was

> OK for half a year. Then, I was hyper again in the beginning of

2001.

>

> So I was back on PTU 50mg three times a day from summer of 2001

unil

> the winter of 2002. As before, I was normal under that treatment

> except some weight gain. I lowered to 25mg three times a day after

> Sept. of 2002. Blood test done in Dec of 2002 showed that I had a

> normal T4, normal and bit low TSH. The doctor asked me to stop PTU

> completely and take the RAI.

>

> I am strugling between PTU and RAI. What do you think? any input

will

> be greatly apppreciated.

[Guest guest]

PTU. Unless you just can't take the ATDs for some reason, which it's

apparent that's not the case, I would never consider RAI. Just don't let

your doc keep taking you off the ATDs. This sounds like what Liz's doc was

doing. You keep taking the ATDs and slowly reduce as necessary until you're

on a maintenance dose or reach remission. Since three out of your six

aunts/uncles acheived remission, I'd think that you'd have a good chance of

doing so, also. Even if not, it's better to stay on a maintenance dose of

the ATD than to deal with the complications of RAI and having to take

supplemental hormone the rest of your life.

Holly

Dx. 8/2001; currently on 2.5 mg. MMI

Should I consider RAI now?

Found this group yesterday. It is a great site!

I have family history of GD. Five of six of my mom's siblings had GD.

Three of them went remission with PTU treatment for over 3-7 years.

My mom got RAI and now is on oral hormone daily. The other one is

still on PTU.

I was first diagnosed for GD in Oct. 1998. I was on 150mg PTU three

times a day. It sent me to hypo in 8 weeks. So I decreased it to

100mg three times a day for 8 weeks. I was still hypo but less severe

compare to 150mg dosage. So I backed to 50mg three times a day for 8

weeks, then I was normal with 50mg three times a day. I was on that

for 4 months, then 25mg three times a day for 4 months, 12.5mg three

times a day for 4 months. Then on and off 12.5 once every one or two

days for a couple of months. I was normal all the way.

So, my doc asked to stop the medication afterwards and I did. I was

OK for half a year. Then, I was hyper again in the beginning of 2001.

So I was back on PTU 50mg three times a day from summer of 2001 unil

the winter of 2002. As before, I was normal under that treatment

except some weight gain. I lowered to 25mg three times a day after

Sept. of 2002. Blood test done in Dec of 2002 showed that I had a

normal T4, normal and bit low TSH. The doctor asked me to stop PTU

completely and take the RAI.

I am strugling between PTU and RAI. What do you think? any input will

be greatly apppreciated.

[Guest guest]

PTU. Unless you just can't take the ATDs for some reason, which it's

apparent that's not the case, I would never consider RAI. Just don't let

your doc keep taking you off the ATDs. This sounds like what Liz's doc was

doing. You keep taking the ATDs and slowly reduce as necessary until you're

on a maintenance dose or reach remission. Since three out of your six

aunts/uncles acheived remission, I'd think that you'd have a good chance of

doing so, also. Even if not, it's better to stay on a maintenance dose of

the ATD than to deal with the complications of RAI and having to take

supplemental hormone the rest of your life.

Holly

Dx. 8/2001; currently on 2.5 mg. MMI

Should I consider RAI now?

Found this group yesterday. It is a great site!

I have family history of GD. Five of six of my mom's siblings had GD.

Three of them went remission with PTU treatment for over 3-7 years.

My mom got RAI and now is on oral hormone daily. The other one is

still on PTU.

I was first diagnosed for GD in Oct. 1998. I was on 150mg PTU three

times a day. It sent me to hypo in 8 weeks. So I decreased it to

100mg three times a day for 8 weeks. I was still hypo but less severe

compare to 150mg dosage. So I backed to 50mg three times a day for 8

weeks, then I was normal with 50mg three times a day. I was on that

for 4 months, then 25mg three times a day for 4 months, 12.5mg three

times a day for 4 months. Then on and off 12.5 once every one or two

days for a couple of months. I was normal all the way.

So, my doc asked to stop the medication afterwards and I did. I was

OK for half a year. Then, I was hyper again in the beginning of 2001.

So I was back on PTU 50mg three times a day from summer of 2001 unil

the winter of 2002. As before, I was normal under that treatment

except some weight gain. I lowered to 25mg three times a day after

Sept. of 2002. Blood test done in Dec of 2002 showed that I had a

normal T4, normal and bit low TSH. The doctor asked me to stop PTU

completely and take the RAI.

I am strugling between PTU and RAI. What do you think? any input will

be greatly apppreciated.

[Guest guest]

PTU. Unless you just can't take the ATDs for some reason, which it's

apparent that's not the case, I would never consider RAI. Just don't let

your doc keep taking you off the ATDs. This sounds like what Liz's doc was

doing. You keep taking the ATDs and slowly reduce as necessary until you're

on a maintenance dose or reach remission. Since three out of your six

aunts/uncles acheived remission, I'd think that you'd have a good chance of

doing so, also. Even if not, it's better to stay on a maintenance dose of

the ATD than to deal with the complications of RAI and having to take

supplemental hormone the rest of your life.

Holly

Dx. 8/2001; currently on 2.5 mg. MMI

Should I consider RAI now?

Found this group yesterday. It is a great site!

I have family history of GD. Five of six of my mom's siblings had GD.

Three of them went remission with PTU treatment for over 3-7 years.

My mom got RAI and now is on oral hormone daily. The other one is

still on PTU.

I was first diagnosed for GD in Oct. 1998. I was on 150mg PTU three

times a day. It sent me to hypo in 8 weeks. So I decreased it to

100mg three times a day for 8 weeks. I was still hypo but less severe

compare to 150mg dosage. So I backed to 50mg three times a day for 8

weeks, then I was normal with 50mg three times a day. I was on that

for 4 months, then 25mg three times a day for 4 months, 12.5mg three

times a day for 4 months. Then on and off 12.5 once every one or two

days for a couple of months. I was normal all the way.

So, my doc asked to stop the medication afterwards and I did. I was

OK for half a year. Then, I was hyper again in the beginning of 2001.

So I was back on PTU 50mg three times a day from summer of 2001 unil

the winter of 2002. As before, I was normal under that treatment

except some weight gain. I lowered to 25mg three times a day after

Sept. of 2002. Blood test done in Dec of 2002 showed that I had a

normal T4, normal and bit low TSH. The doctor asked me to stop PTU

completely and take the RAI.

I am strugling between PTU and RAI. What do you think? any input will

be greatly apppreciated.

[Guest guest]

I would do like Granny said,

RAI is going to give you more problems and the antibodies attacking

other organs instead of the thyroid.

I just got back from my Endo office had a nice chat with her today

got my TSI test done. She asked me how I knew about a TSI test I

said, I told her what I knew about it then all the sudden she got

really curious about it " funny I had to mention it first " anyway

thats another story.

Back to you. My Endo asked me what I was going to do if I didn't

go into remission I said, I will stay on PTU for 50 years and she

said, Yup you can do that.

See don't let them side trail you into RAI. Find an Endo who is

interested in helping you and you have to wean off slow on the

ATD's that is true can't go cold turkey.

I'm on 50mgs right now until my TSI test comes back and then I will

see where I'm at. I asked about the T4/PTU combination therapy and

Endo's reply was " no increase chance of remission on latest

clinical trials done " so I didn't know what to say but I'm going to

find out and look it up and get back to her ass about it you can be

sure.

Alyssa

[Guest guest]

Hi and welcome to the group,

From your history, it sounds like you weren't very well managed on PTU.

The usual starting dose is 300 mg, not 450 mg, taken in divided doses 3 x

daily. I'm not surprised you were hypo after 8 weeks. At 6-8 weeks after

starting PTU, the thyroid hormone in your gland should be all used up and no

longer released. So you can get by on a lower dose of PTU. The dose is slowly

lowered and you eventually are able to stay on a maintenance dose of 100-150

mg PTU daily although as you begin to move toward remission, you can get by

on lower doses.

To tell if you're in remission, you should have a test for TSI. These are the

antibodies that cause hyperthyroidism in GD. When your immune system is no

longer producing these antibodies you are in remission and can slowly reduce

and then stop your PTU. Without this test, it's a guessing game. Avoiding

the environmental triggers of GD, like iodine and stress, and making some

dietary changes will also help you achieve remission. Take care, Elaine

[Guest guest]

Hi and welcome to the group,

From your history, it sounds like you weren't very well managed on PTU.

The usual starting dose is 300 mg, not 450 mg, taken in divided doses 3 x

daily. I'm not surprised you were hypo after 8 weeks. At 6-8 weeks after

starting PTU, the thyroid hormone in your gland should be all used up and no

longer released. So you can get by on a lower dose of PTU. The dose is slowly

lowered and you eventually are able to stay on a maintenance dose of 100-150

mg PTU daily although as you begin to move toward remission, you can get by

on lower doses.

To tell if you're in remission, you should have a test for TSI. These are the

antibodies that cause hyperthyroidism in GD. When your immune system is no

longer producing these antibodies you are in remission and can slowly reduce

and then stop your PTU. Without this test, it's a guessing game. Avoiding

the environmental triggers of GD, like iodine and stress, and making some

dietary changes will also help you achieve remission. Take care, Elaine