long term tap use questions/.. concerns?

[Guest guest]

I have made the decision to see if I can continue on Tap, with the

hope, of course, that I will eventually go into remission. I have

been taking it for 6 months now, and told my endo this is the route

that I would like to take. Although less than enthusiastic, he

wanted to go RAI/Tap combo, he defered to my choice,aka " its your

body, your decision. " He told me, however, that he feels that I will

have to have RAI within the next 18 months. I have read all the

literature, trying to maintain a very healthy lifestyle, and keep

tabs on what is happening with this group, however, his last comment

has made me somewhat apprehensive.

I would love to hear from anyone who has been on a long-term Tap

regime, and/or can explain my endo's concerns. (is it liver damage,

white blood cell problems?? I can't seem to get a clear answer from

him)

(I am currently taking 5 mg./day, and no longer have to take

Atenalol)

Thanks in advance for your support

[Guest guest]

My endo insisted that I was wasting my time by taking MMI. He wanted me to

have RAI, and told me I was not " a good candidate for remisson " . I

persisted and have been taking ATDs for 18 months now. I'm currently only

taking 2.5 mg. every two days. I'm sure I'm in remission. I get labs this

week, and even though he won't approve TSI, I feel pretty confident that if

I'm still showing in the hypo side of normal that I'm in remission.

Don't let him wear you down. Remission is possible MUCH more often than

doctors want to admit. The thing to do is to take charge of your own

recovery. Monitor your levels, make positive lifestyle changes, and chances

are in 18 months you could be weaning off the ATDs entirely. The fact that

you're only taking 5 mg. a day at this point is a good sign to me. You may

be weaning off much sooner. That's a maintenance dose, and you can feel

pretty good that a dose that low will not harm your liver or affect your

WBC.

Take care,

Holly

long term tap use questions/.. concerns?

I have made the decision to see if I can continue on Tap, with the

hope, of course, that I will eventually go into remission. I have

been taking it for 6 months now, and told my endo this is the route

that I would like to take. Although less than enthusiastic, he

wanted to go RAI/Tap combo, he defered to my choice,aka " its your

body, your decision. " He told me, however, that he feels that I will

have to have RAI within the next 18 months. I have read all the

literature, trying to maintain a very healthy lifestyle, and keep

tabs on what is happening with this group, however, his last comment

has made me somewhat apprehensive.

I would love to hear from anyone who has been on a long-term Tap

regime, and/or can explain my endo's concerns. (is it liver damage,

white blood cell problems?? I can't seem to get a clear answer from

him)

(I am currently taking 5 mg./day, and no longer have to take

Atenalol)

Thanks in advance for your support

[Guest guest]

My endo insisted that I was wasting my time by taking MMI. He wanted me to

have RAI, and told me I was not " a good candidate for remisson " . I

persisted and have been taking ATDs for 18 months now. I'm currently only

taking 2.5 mg. every two days. I'm sure I'm in remission. I get labs this

week, and even though he won't approve TSI, I feel pretty confident that if

I'm still showing in the hypo side of normal that I'm in remission.

Don't let him wear you down. Remission is possible MUCH more often than

doctors want to admit. The thing to do is to take charge of your own

recovery. Monitor your levels, make positive lifestyle changes, and chances

are in 18 months you could be weaning off the ATDs entirely. The fact that

you're only taking 5 mg. a day at this point is a good sign to me. You may

be weaning off much sooner. That's a maintenance dose, and you can feel

pretty good that a dose that low will not harm your liver or affect your

WBC.

Take care,

Holly

long term tap use questions/.. concerns?

I have made the decision to see if I can continue on Tap, with the

hope, of course, that I will eventually go into remission. I have

been taking it for 6 months now, and told my endo this is the route

that I would like to take. Although less than enthusiastic, he

wanted to go RAI/Tap combo, he defered to my choice,aka " its your

body, your decision. " He told me, however, that he feels that I will

have to have RAI within the next 18 months. I have read all the

literature, trying to maintain a very healthy lifestyle, and keep

tabs on what is happening with this group, however, his last comment

has made me somewhat apprehensive.

I would love to hear from anyone who has been on a long-term Tap

regime, and/or can explain my endo's concerns. (is it liver damage,

white blood cell problems?? I can't seem to get a clear answer from

him)

(I am currently taking 5 mg./day, and no longer have to take

Atenalol)

Thanks in advance for your support

[Guest guest]

Cate:

I am on the same route as you - trying to avoid RAI. My new doctor informed me

that RAI is just America's way of dealing with the thyroid - doctors in other

countries have other perferred methods of treatment. My doctor was not against

my choice of staying on Tap. He indicated that many people are on it for years

and that findings have shown that is a very small percentage of long term users

(2-5%) that they experienced white blood cell count loss. He told me that if I

ever get unexplained flu like systems I should take myself to medical emergency,

tell them I am on Tap and have my blood cell count tested immediately. I was on

Tap for almost two years, then I just quit - now I've been on it for three

months and my thyroid tests are improving...good luck.

long term tap use questions/.. concerns?

I have made the decision to see if I can continue on Tap, with the

hope, of course, that I will eventually go into remission. I have

been taking it for 6 months now, and told my endo this is the route

that I would like to take. Although less than enthusiastic, he

wanted to go RAI/Tap combo, he defered to my choice,aka " its your

body, your decision. " He told me, however, that he feels that I will

have to have RAI within the next 18 months. I have read all the

literature, trying to maintain a very healthy lifestyle, and keep

tabs on what is happening with this group, however, his last comment

has made me somewhat apprehensive.

I would love to hear from anyone who has been on a long-term Tap

regime, and/or can explain my endo's concerns. (is it liver damage,

white blood cell problems?? I can't seem to get a clear answer from

him)

(I am currently taking 5 mg./day, and no longer have to take

Atenalol)

Thanks in advance for your support

[Guest guest]

Cate:

I am on the same route as you - trying to avoid RAI. My new doctor informed me

that RAI is just America's way of dealing with the thyroid - doctors in other

countries have other perferred methods of treatment. My doctor was not against

my choice of staying on Tap. He indicated that many people are on it for years

and that findings have shown that is a very small percentage of long term users

(2-5%) that they experienced white blood cell count loss. He told me that if I

ever get unexplained flu like systems I should take myself to medical emergency,

tell them I am on Tap and have my blood cell count tested immediately. I was on

Tap for almost two years, then I just quit - now I've been on it for three

months and my thyroid tests are improving...good luck.

long term tap use questions/.. concerns?

I have made the decision to see if I can continue on Tap, with the

hope, of course, that I will eventually go into remission. I have

been taking it for 6 months now, and told my endo this is the route

that I would like to take. Although less than enthusiastic, he

wanted to go RAI/Tap combo, he defered to my choice,aka " its your

body, your decision. " He told me, however, that he feels that I will

have to have RAI within the next 18 months. I have read all the

literature, trying to maintain a very healthy lifestyle, and keep

tabs on what is happening with this group, however, his last comment

has made me somewhat apprehensive.

I would love to hear from anyone who has been on a long-term Tap

regime, and/or can explain my endo's concerns. (is it liver damage,

white blood cell problems?? I can't seem to get a clear answer from

him)

(I am currently taking 5 mg./day, and no longer have to take

Atenalol)

Thanks in advance for your support

[Guest guest]

Hi Cate and welcome. (You are fairly new right? I've been extremely

scatterbrained lately.

> I have made the decision to see if I can continue on Tap, with the

> hope, of course, that I will eventually go into remission. I have

> been taking it for 6 months now, and told my endo this is the route

> that I would like to take. Although less than enthusiastic, he

> wanted to go RAI/Tap combo,

What does this mean - that he wanted to stabilize you with Tap before RAI

or that he would prescribe it if need be after RAI? Which is one dubious

point in his favor, as my endo #1 said outright that he doesn't use ATDs

at all which is absurd. Even with RAI they may be necessary.

> have to have RAI within the next 18 months. I have read all the

And what does he base this on?

(is it liver damage,

> white blood cell problems??

Possibly. Then let him test you more often. Also, long term ATD use,

especially in people in their 40s or older can lead to heart arrhythmia

(or so endo #2 told me, and anything endo #2 told me should be taken with

a wagon of un-iodized salt). Again, let him monitor you. There was also

an incident detailed here of someone who dealt with a very, very rare

reaction to PTU. These reactions are all not too common, can be caught,

and often treated.

There are a few members of this list who have been on ATDs long-term and

may be responding even as we speak. (They're on the west coast.) This is

not too common but it's good to be aware of their experiences. The way

you're going, you may well be off within the year anyway which should

practically definitely not be a cause for concern.

Oh, and BTW, if your endo won't give you a straight answer keep hammering

after him. I for one would love to hear his answers.

Take care, Fay

________________________________________________________________

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Only $9.95 per month!

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[Guest guest]

Hi Cate and welcome. (You are fairly new right? I've been extremely

scatterbrained lately.

> I have made the decision to see if I can continue on Tap, with the

> hope, of course, that I will eventually go into remission. I have

> been taking it for 6 months now, and told my endo this is the route

> that I would like to take. Although less than enthusiastic, he

> wanted to go RAI/Tap combo,

What does this mean - that he wanted to stabilize you with Tap before RAI

or that he would prescribe it if need be after RAI? Which is one dubious

point in his favor, as my endo #1 said outright that he doesn't use ATDs

at all which is absurd. Even with RAI they may be necessary.

> have to have RAI within the next 18 months. I have read all the

And what does he base this on?

(is it liver damage,

> white blood cell problems??

Possibly. Then let him test you more often. Also, long term ATD use,

especially in people in their 40s or older can lead to heart arrhythmia

(or so endo #2 told me, and anything endo #2 told me should be taken with

a wagon of un-iodized salt). Again, let him monitor you. There was also

an incident detailed here of someone who dealt with a very, very rare

reaction to PTU. These reactions are all not too common, can be caught,

and often treated.

There are a few members of this list who have been on ATDs long-term and

may be responding even as we speak. (They're on the west coast.) This is

not too common but it's good to be aware of their experiences. The way

you're going, you may well be off within the year anyway which should

practically definitely not be a cause for concern.

Oh, and BTW, if your endo won't give you a straight answer keep hammering

after him. I for one would love to hear his answers.

Take care, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Cate,

Your endo sounds like an overbearing, misguided fool to me (sorry, I'm not

in the mood to pull punches today!). I've been on tap since '95, and Granny

for 23 years or so--you now have at least 2 examples of people who've

had no particular trouble with the medication.

If you are down to 5 mg. a day, you are either on a stable maintenance dose,

or moving towards remission. I'm on the same dose at the moment, and other

than the need to keep a close and sensitive watch on your symptoms, which of

course can change--I just went through a dose lowering as I became a bit

hypo on 7.5 mg. a day--you should have no problems whatsoever.

My endo is quite willing to monitor me on the dosage, on my last visit he

gave me 2 slips for labs so that I could go when I felt like it without even

having to call the office, and on one of them added a TSI and FT3 that I

requested. I requested these so that I could have lab numbers to help

determine if I was likely to go into remission, finally. My endo has never

told me that the course of action I am following is foolish or dangerous or

counterproductive. Although he is an RAI believer, he never got overbearing

about it with me.

Terry

> " numbergirl92002@...>

> Reply-To: graves_support

> Date: Mon, 03 Mar 2003 14:16:58 -0000

> To: graves_support

> Subject: long term tap use questions/.. concerns?

>

> I have made the decision to see if I can continue on Tap, with the

> hope, of course, that I will eventually go into remission. I have

> been taking it for 6 months now, and told my endo this is the route

> that I would like to take. Although less than enthusiastic, he

> wanted to go RAI/Tap combo, he defered to my choice,aka " its your

> body, your decision. " He told me, however, that he feels that I will

> have to have RAI within the next 18 months. I have read all the

> literature, trying to maintain a very healthy lifestyle, and keep

> tabs on what is happening with this group, however, his last comment

> has made me somewhat apprehensive.

> I would love to hear from anyone who has been on a long-term Tap

> regime, and/or can explain my endo's concerns. (is it liver damage,

> white blood cell problems?? I can't seem to get a clear answer from

> him)

> (I am currently taking 5 mg./day, and no longer have to take

> Atenalol)

> Thanks in advance for your support

>

>

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

> 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.

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

> --------

>

>

[Guest guest]

Cate,

Your endo sounds like an overbearing, misguided fool to me (sorry, I'm not

in the mood to pull punches today!). I've been on tap since '95, and Granny

for 23 years or so--you now have at least 2 examples of people who've

had no particular trouble with the medication.

If you are down to 5 mg. a day, you are either on a stable maintenance dose,

or moving towards remission. I'm on the same dose at the moment, and other

than the need to keep a close and sensitive watch on your symptoms, which of

course can change--I just went through a dose lowering as I became a bit

hypo on 7.5 mg. a day--you should have no problems whatsoever.

My endo is quite willing to monitor me on the dosage, on my last visit he

gave me 2 slips for labs so that I could go when I felt like it without even

having to call the office, and on one of them added a TSI and FT3 that I

requested. I requested these so that I could have lab numbers to help

determine if I was likely to go into remission, finally. My endo has never

told me that the course of action I am following is foolish or dangerous or

counterproductive. Although he is an RAI believer, he never got overbearing

about it with me.

Terry

> " numbergirl92002@...>

> Reply-To: graves_support

> Date: Mon, 03 Mar 2003 14:16:58 -0000

> To: graves_support

> Subject: long term tap use questions/.. concerns?

>

> I have made the decision to see if I can continue on Tap, with the

> hope, of course, that I will eventually go into remission. I have

> been taking it for 6 months now, and told my endo this is the route

> that I would like to take. Although less than enthusiastic, he

> wanted to go RAI/Tap combo, he defered to my choice,aka " its your

> body, your decision. " He told me, however, that he feels that I will

> have to have RAI within the next 18 months. I have read all the

> literature, trying to maintain a very healthy lifestyle, and keep

> tabs on what is happening with this group, however, his last comment

> has made me somewhat apprehensive.

> I would love to hear from anyone who has been on a long-term Tap

> regime, and/or can explain my endo's concerns. (is it liver damage,

> white blood cell problems?? I can't seem to get a clear answer from

> him)

> (I am currently taking 5 mg./day, and no longer have to take

> Atenalol)

> Thanks in advance for your support

>

>

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

> 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.

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

> --------

>

>

[Guest guest]

My name is Deanna and I am now choosing the same path as you with

medicine as opposed to RAI. Please let me know how things are coming

along for you. Thank you!!

-- In graves_support , cfyoung2@j... wrote:

> Hi Cate and welcome. (You are fairly new right? I've been extremely

> scatterbrained lately.

>

> > I have made the decision to see if I can continue on Tap, with

the

> > hope, of course, that I will eventually go into remission. I

have

> > been taking it for 6 months now, and told my endo this is the

route

> > that I would like to take. Although less than enthusiastic, he

> > wanted to go RAI/Tap combo,

>

> What does this mean - that he wanted to stabilize you with Tap

before RAI

> or that he would prescribe it if need be after RAI? Which is one

dubious

> point in his favor, as my endo #1 said outright that he doesn't use

ATDs

> at all which is absurd. Even with RAI they may be necessary.

>

> > have to have RAI within the next 18 months. I have read all the

> And what does he base this on?

>

> (is it liver damage,

> > white blood cell problems??

> Possibly. Then let him test you more often. Also, long term ATD use,

> especially in people in their 40s or older can lead to heart

arrhythmia

> (or so endo #2 told me, and anything endo #2 told me should be

taken with

> a wagon of un-iodized salt). Again, let him monitor you. There was

also

> an incident detailed here of someone who dealt with a very, very

rare

> reaction to PTU. These reactions are all not too common, can be

caught,

> and often treated.

>

> There are a few members of this list who have been on ATDs long-

term and

> may be responding even as we speak. (They're on the west coast.)

This is

> not too common but it's good to be aware of their experiences. The

way

> you're going, you may well be off within the year anyway which

should

> practically definitely not be a cause for concern.

>

> Oh, and BTW, if your endo won't give you a straight answer keep

hammering

> after him. I for one would love to hear his answers.

>

> Take care, Fay

>

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

[Guest guest]

Hi! I tried tapazol for about 1 year and two months... was on

tapazole (originally had VERY SEVERE hyperthyroidism), my levels

became 'normal' with the tap, then my dr tried to take me off to see

if i would go into remission, sure enough, just a few months later i

popped RIGHT BACK into hyper. (sadly) so i opted for rai. this was

about 2.5 years ago. i did it because i wanted to at least give it a

try. it was frustrating to constantly get blood wrok done when i got

sick etc... but i also wanted to explore all routes before RAI. some

people go into remission some don't. i felt like ti was worth a try.

Good luck!