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Hi 's mom,

I can only comment on Em's stomach after taking PTU. For a while I would

get so sick to my stomach within half an hour of taking it. I have found

taking it with something in my stomach helps with that. Even a piece of dry

toast in the morning.

The other symptoms I am not aware of, but maybe come one else will comment

on them. How much is on?

The horrible taste, well I have my water right at my mouth, toss the pill

in, way back and start drinking. That has helped me to not taste it

anymore, unless I am not quick enough and it sits on my tongue :)

Let know that she won't be noticing the taste after a while. I can't

imagine being 13 and going through this, she is going to have to be brave

right now, do things she doesn't like, but that soon she will start feeling

better. It may not take long before results are seen.

Keep the hypo list handy (maybe not right where she can see it all the time)

but as soon as she complains about the hypo symptoms, call and request labs

immediately! They should be done every 4 weeks, I wouldn't let them go past

that. If she responds quickly, you don't want her going hypo. As the hypo

symptoms begin appearing or hopefully, with 4 week labs her dosage of ptu

will be getting cut until she is only on a small dose to attain remission.

Some people, here and on the mediboard site have seen responses in just a

couple of weeks. I hope that is the case for .

Take care,

Jody

_________________________________________________________________

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Hi 's mom,

I can only comment on Em's stomach after taking PTU. For a while I would

get so sick to my stomach within half an hour of taking it. I have found

taking it with something in my stomach helps with that. Even a piece of dry

toast in the morning.

The other symptoms I am not aware of, but maybe come one else will comment

on them. How much is on?

The horrible taste, well I have my water right at my mouth, toss the pill

in, way back and start drinking. That has helped me to not taste it

anymore, unless I am not quick enough and it sits on my tongue :)

Let know that she won't be noticing the taste after a while. I can't

imagine being 13 and going through this, she is going to have to be brave

right now, do things she doesn't like, but that soon she will start feeling

better. It may not take long before results are seen.

Keep the hypo list handy (maybe not right where she can see it all the time)

but as soon as she complains about the hypo symptoms, call and request labs

immediately! They should be done every 4 weeks, I wouldn't let them go past

that. If she responds quickly, you don't want her going hypo. As the hypo

symptoms begin appearing or hopefully, with 4 week labs her dosage of ptu

will be getting cut until she is only on a small dose to attain remission.

Some people, here and on the mediboard site have seen responses in just a

couple of weeks. I hope that is the case for .

Take care,

Jody

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

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Guest guest

> Hi 's mom,

> I can only comment on Em's stomach after taking PTU. For a while I

would

> get so sick to my stomach within half an hour of taking it. I have

found

> taking it with something in my stomach helps with that. Even a

piece of dry

> toast in the morning.

>

> The other symptoms I am not aware of, but maybe come one else will

comment

> on them. How much is on?

>

> The horrible taste, well I have my water right at my mouth, toss

the pill

> in, way back and start drinking. That has helped me to not taste

it

> anymore, unless I am not quick enough and it sits on my tongue :)

>

> Let know that she won't be noticing the taste after a while.

I can't

> imagine being 13 and going through this, she is going to have to be

brave

> right now, do things she doesn't like, but that soon she will start

feeling

> better. It may not take long before results are seen.

>

> Keep the hypo list handy (maybe not right where she can see it all

the time)

> but as soon as she complains about the hypo symptoms, call and

request labs

> immediately! They should be done every 4 weeks, I wouldn't let

them go past

> that. If she responds quickly, you don't want her going hypo. As

the hypo

> symptoms begin appearing or hopefully, with 4 week labs her dosage

of ptu

> will be getting cut until she is only on a small dose to attain

remission.

>

> Some people, here and on the mediboard site have seen responses in

just a

> couple of weeks. I hope that is the case for .

>

> Take care,

> Jody

>

> Jody - Thanks for your words of encouragement. There is a silver

lining in every cloud, and I think I've found one in your post.

Since I myself have Hashi's and am not regulated yet, I know very

well the symptoms of hypo! I think I'll be able to notice them right

away unless I am having a bad thyroid day myself. I didn't realize

we may see that much improvement so soon. I'm hoping! She is on

50mg three times a day and also Tenormin, a beta blocker till she

gets stabilized. Her doc is checking blood for the first four weeks

on PTU to be sure her white blood count and liver function are OK and

we go back in the end of April for the next thyroid panel. Seems

like he is doing the right thing. I have learned so much from this

support group. . .you guys are great! By the way, our doc says that

people with Graves have only a 10% chance of achieving remission.

What do you think about that? I have heard that it was higher? mary

baird

>

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

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Guest guest

> Hi 's mom,

> I can only comment on Em's stomach after taking PTU. For a while I

would

> get so sick to my stomach within half an hour of taking it. I have

found

> taking it with something in my stomach helps with that. Even a

piece of dry

> toast in the morning.

>

> The other symptoms I am not aware of, but maybe come one else will

comment

> on them. How much is on?

>

> The horrible taste, well I have my water right at my mouth, toss

the pill

> in, way back and start drinking. That has helped me to not taste

it

> anymore, unless I am not quick enough and it sits on my tongue :)

>

> Let know that she won't be noticing the taste after a while.

I can't

> imagine being 13 and going through this, she is going to have to be

brave

> right now, do things she doesn't like, but that soon she will start

feeling

> better. It may not take long before results are seen.

>

> Keep the hypo list handy (maybe not right where she can see it all

the time)

> but as soon as she complains about the hypo symptoms, call and

request labs

> immediately! They should be done every 4 weeks, I wouldn't let

them go past

> that. If she responds quickly, you don't want her going hypo. As

the hypo

> symptoms begin appearing or hopefully, with 4 week labs her dosage

of ptu

> will be getting cut until she is only on a small dose to attain

remission.

>

> Some people, here and on the mediboard site have seen responses in

just a

> couple of weeks. I hope that is the case for .

>

> Take care,

> Jody

>

> Jody - Thanks for your words of encouragement. There is a silver

lining in every cloud, and I think I've found one in your post.

Since I myself have Hashi's and am not regulated yet, I know very

well the symptoms of hypo! I think I'll be able to notice them right

away unless I am having a bad thyroid day myself. I didn't realize

we may see that much improvement so soon. I'm hoping! She is on

50mg three times a day and also Tenormin, a beta blocker till she

gets stabilized. Her doc is checking blood for the first four weeks

on PTU to be sure her white blood count and liver function are OK and

we go back in the end of April for the next thyroid panel. Seems

like he is doing the right thing. I have learned so much from this

support group. . .you guys are great! By the way, our doc says that

people with Graves have only a 10% chance of achieving remission.

What do you think about that? I have heard that it was higher? mary

baird

>

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

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Share on other sites

Guest guest

> Hi 's mom,

> I can only comment on Em's stomach after taking PTU. For a while I

would

> get so sick to my stomach within half an hour of taking it. I have

found

> taking it with something in my stomach helps with that. Even a

piece of dry

> toast in the morning.

>

> The other symptoms I am not aware of, but maybe come one else will

comment

> on them. How much is on?

>

> The horrible taste, well I have my water right at my mouth, toss

the pill

> in, way back and start drinking. That has helped me to not taste

it

> anymore, unless I am not quick enough and it sits on my tongue :)

>

> Let know that she won't be noticing the taste after a while.

I can't

> imagine being 13 and going through this, she is going to have to be

brave

> right now, do things she doesn't like, but that soon she will start

feeling

> better. It may not take long before results are seen.

>

> Keep the hypo list handy (maybe not right where she can see it all

the time)

> but as soon as she complains about the hypo symptoms, call and

request labs

> immediately! They should be done every 4 weeks, I wouldn't let

them go past

> that. If she responds quickly, you don't want her going hypo. As

the hypo

> symptoms begin appearing or hopefully, with 4 week labs her dosage

of ptu

> will be getting cut until she is only on a small dose to attain

remission.

>

> Some people, here and on the mediboard site have seen responses in

just a

> couple of weeks. I hope that is the case for .

>

> Take care,

> Jody

>

> Jody - Thanks for your words of encouragement. There is a silver

lining in every cloud, and I think I've found one in your post.

Since I myself have Hashi's and am not regulated yet, I know very

well the symptoms of hypo! I think I'll be able to notice them right

away unless I am having a bad thyroid day myself. I didn't realize

we may see that much improvement so soon. I'm hoping! She is on

50mg three times a day and also Tenormin, a beta blocker till she

gets stabilized. Her doc is checking blood for the first four weeks

on PTU to be sure her white blood count and liver function are OK and

we go back in the end of April for the next thyroid panel. Seems

like he is doing the right thing. I have learned so much from this

support group. . .you guys are great! By the way, our doc says that

people with Graves have only a 10% chance of achieving remission.

What do you think about that? I have heard that it was higher? mary

baird

>

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

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I am on tapozole or methamazole (sp), and I find that I have to take it at

night because it really puts me out, within an hour. I am not sure if I have

just set myself up to think this way or if it really happens. I know that tap

and PTU is different but maybe the effects are the same. However it doesn't

upset my stomach.

The sad part is that I am always questioning my decisions and behaviours

wondering if they are Graves or just me...I hate that part........

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Guest guest

I am on tapozole or methamazole (sp), and I find that I have to take it at

night because it really puts me out, within an hour. I am not sure if I have

just set myself up to think this way or if it really happens. I know that tap

and PTU is different but maybe the effects are the same. However it doesn't

upset my stomach.

The sad part is that I am always questioning my decisions and behaviours

wondering if they are Graves or just me...I hate that part........

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Guest guest

I am on tapozole or methamazole (sp), and I find that I have to take it at

night because it really puts me out, within an hour. I am not sure if I have

just set myself up to think this way or if it really happens. I know that tap

and PTU is different but maybe the effects are the same. However it doesn't

upset my stomach.

The sad part is that I am always questioning my decisions and behaviours

wondering if they are Graves or just me...I hate that part........

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Guest guest

> She is on

> 50mg three times a day and also Tenormin, a beta blocker till she

> gets stabilized. Her doc is checking blood for the first four weeks

> on PTU to be sure her white blood count and liver function are OK and

> we go back in the end of April for the next thyroid panel.

.

Maybe it's some symptoms from the beta blockers as well. I never

experienced sore knuckles, but I never took betas. The stomache thing

was something I had before PTU so I couldn't tell. The taste..yuck! I

used to put a little bit of water in my mouth and then THROW

(literally) the pill as far back (or down) into my throat as I

could. The trick as Jody mentioned, is to avoid the tongue.

> Seems like he is doing the right thing. I have learned so much from this

> support group. . .you guys are great! By the way, our doc says that

> people with Graves have only a 10% chance of achieving remission.

> What do you think about that? I have heard that it was higher? mary

I was told 10% as well, but ummm, I have been in remission now for

over a month, maybe it's going on 2 even. I think it's much

higher. Maybe they just don't want us to get our hopes up..as if we

need humbling!

Val

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Guest guest

> She is on

> 50mg three times a day and also Tenormin, a beta blocker till she

> gets stabilized. Her doc is checking blood for the first four weeks

> on PTU to be sure her white blood count and liver function are OK and

> we go back in the end of April for the next thyroid panel.

.

Maybe it's some symptoms from the beta blockers as well. I never

experienced sore knuckles, but I never took betas. The stomache thing

was something I had before PTU so I couldn't tell. The taste..yuck! I

used to put a little bit of water in my mouth and then THROW

(literally) the pill as far back (or down) into my throat as I

could. The trick as Jody mentioned, is to avoid the tongue.

> Seems like he is doing the right thing. I have learned so much from this

> support group. . .you guys are great! By the way, our doc says that

> people with Graves have only a 10% chance of achieving remission.

> What do you think about that? I have heard that it was higher? mary

I was told 10% as well, but ummm, I have been in remission now for

over a month, maybe it's going on 2 even. I think it's much

higher. Maybe they just don't want us to get our hopes up..as if we

need humbling!

Val

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Guest guest

> She is on

> 50mg three times a day and also Tenormin, a beta blocker till she

> gets stabilized. Her doc is checking blood for the first four weeks

> on PTU to be sure her white blood count and liver function are OK and

> we go back in the end of April for the next thyroid panel.

.

Maybe it's some symptoms from the beta blockers as well. I never

experienced sore knuckles, but I never took betas. The stomache thing

was something I had before PTU so I couldn't tell. The taste..yuck! I

used to put a little bit of water in my mouth and then THROW

(literally) the pill as far back (or down) into my throat as I

could. The trick as Jody mentioned, is to avoid the tongue.

> Seems like he is doing the right thing. I have learned so much from this

> support group. . .you guys are great! By the way, our doc says that

> people with Graves have only a 10% chance of achieving remission.

> What do you think about that? I have heard that it was higher? mary

I was told 10% as well, but ummm, I have been in remission now for

over a month, maybe it's going on 2 even. I think it's much

higher. Maybe they just don't want us to get our hopes up..as if we

need humbling!

Val

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Guest guest

,

I'm curious about your post that your Tap puts you to sleep.

What are your current levels? And how much Tap do you take?

(My thinking is that if it puts you to sleep that you may be hypo and the Tap

lowering your levels even further, it might have that sleepy effect? I'm

just postulating though!!)

Doris

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,

I'm curious about your post that your Tap puts you to sleep.

What are your current levels? And how much Tap do you take?

(My thinking is that if it puts you to sleep that you may be hypo and the Tap

lowering your levels even further, it might have that sleepy effect? I'm

just postulating though!!)

Doris

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Guest guest

,

I'm curious about your post that your Tap puts you to sleep.

What are your current levels? And how much Tap do you take?

(My thinking is that if it puts you to sleep that you may be hypo and the Tap

lowering your levels even further, it might have that sleepy effect? I'm

just postulating though!!)

Doris

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Guest guest

Hi ,

>>>She is on 50mg three times a day and also Tenormin, a beta blocker till

>>>she gets stabilized. Her doc is checking blood for the first four weeks

>>>on PTU to be sure her white blood count and liver function are OK and we

>>>go back in the end of April for the next thyroid panel. Seems like he is

>>>doing the right thing. I have learned so much from this support group. .

>>>.you guys are great! By the way, our doc says that people with Graves

>>>have only a 10% chance of achieving remission.

What do you think about that? I have heard that it was higher<<<

is on a relatively low dose of PTU...the same one I am on. I had RAI

in '96 and now am dealing with the eye disease. The PTU is being used to

lower my TSI antibodies (and hopefully all of my elevated ab's). RAI does

not address the autoimmune nature of this disease, the antithyroid drugs do.

Anyhow, back on topic. I'm glad her doctor is checking her blood so often.

I hope he keeps up the every 4 weeks, even after he is satisfied that her

liver is not reacting to the ptu. That really is extemely important, close

monitoring while on atd's to prevent going hypo. I think when is

weaned from her beta blocker she will also feel better. Beta blockers also

lower our metabolism and can make us feel terrible.

As for your doctor who says only 10% attain remission. I do not believe

that at all. I have found in reading and listening to other peoples stories

as well, that doctors who use this very low remission rate on atd's tend to

be doctors who push rai in the end. RAI is NOT something you want for

, not at her age. By the time she is ready to marry and start a family

she will be dealing with to many of the bad side effects of the rai.

Read Pam's story from last year. She was so very sick, in part because she

was over medicated and kept hypo on atd's. She was also one who was told

she was so sick she would never attain remission, and she is not med free

for almost 2 months now, if I am remembering right. Her story is very

inspirational! She is not the only one in this group who was told they were

so sick with graves they would never attain remission. Hopefully others

will pop in and tell you their stories too.

You two hang in here and stick to your guns. Your doing all the right things

in learning and being proactive. If 's doctor tries to push for

RAI...find her a new doctor.

Have you read Shomon's book, Living Well With Hypothryoidism? I think

that is the name. It may help you with your hashi's also. There are several

people in this group now with hashi's as well as graves, so even for you,

your in the right place! In your quest to help , I hope you are also

helping yourself, you need to take care of you too!

Hang in here,

Jody

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Guest guest

,

As an " old hand " at taking tapazole (since '95), I can say that I've never

had it make me sleepy. However, being hypO always makes me dead beat tired.

So the next logical question is, are you on too high a dose? If not, your

solution of taking it at night seems like a good one for you. I know that

everyone is affected a bit differently by different medicines.

Terry

>

> Reply-To: graves_support

> Date: Sat, 6 Apr 2002 00:12:55 -0600

> To: <graves_support >

> Subject: Re: Re: Side effects of PTU

>

> I am on tapozole or methamazole (sp), and I find that I have to take it at

> night because it really puts me out, within an hour. I am not sure if I have

> just set myself up to think this way or if it really happens. I know that tap

> and PTU is different but maybe the effects are the same. However it doesn't

> upset my stomach.

>

> The sad part is that I am always questioning my decisions and behaviours

> wondering if they are Graves or just me...I hate that part........

>

>

>

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Guest guest

,

As an " old hand " at taking tapazole (since '95), I can say that I've never

had it make me sleepy. However, being hypO always makes me dead beat tired.

So the next logical question is, are you on too high a dose? If not, your

solution of taking it at night seems like a good one for you. I know that

everyone is affected a bit differently by different medicines.

Terry

>

> Reply-To: graves_support

> Date: Sat, 6 Apr 2002 00:12:55 -0600

> To: <graves_support >

> Subject: Re: Re: Side effects of PTU

>

> I am on tapozole or methamazole (sp), and I find that I have to take it at

> night because it really puts me out, within an hour. I am not sure if I have

> just set myself up to think this way or if it really happens. I know that tap

> and PTU is different but maybe the effects are the same. However it doesn't

> upset my stomach.

>

> The sad part is that I am always questioning my decisions and behaviours

> wondering if they are Graves or just me...I hate that part........

>

>

>

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Guest guest

,

As an " old hand " at taking tapazole (since '95), I can say that I've never

had it make me sleepy. However, being hypO always makes me dead beat tired.

So the next logical question is, are you on too high a dose? If not, your

solution of taking it at night seems like a good one for you. I know that

everyone is affected a bit differently by different medicines.

Terry

>

> Reply-To: graves_support

> Date: Sat, 6 Apr 2002 00:12:55 -0600

> To: <graves_support >

> Subject: Re: Re: Side effects of PTU

>

> I am on tapozole or methamazole (sp), and I find that I have to take it at

> night because it really puts me out, within an hour. I am not sure if I have

> just set myself up to think this way or if it really happens. I know that tap

> and PTU is different but maybe the effects are the same. However it doesn't

> upset my stomach.

>

> The sad part is that I am always questioning my decisions and behaviours

> wondering if they are Graves or just me...I hate that part........

>

>

>

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Guest guest

Hi ,

It is extremely important that PTU be taken every 8 hours. I can tell when

my next dose is due as my eyes start swelling and become painful. I believe

several people on TAP are now splitting their doses and doing better with

that also. If not in this group, over at mediboard there are several doing

that. Maybe something you will want to give a try at?

Take care,

Jody

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

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Guest guest

--- Jody Spitale wrote:

> Hi 's mom,

> I can only comment on Em's stomach after taking PTU.

> For a while I would

> get so sick to my stomach within half an hour of

> taking it. I have found

> taking it with something in my stomach helps with

> that. Even a piece of dry

> toast in the morning.

>

> The other symptoms I am not aware of, but maybe come

> one else will comment

> on them. How much is on?

>

> The horrible taste, well I have my water right at my

> mouth, toss the pill

> in, way back and start drinking. That has helped me

> to not taste it

> anymore, unless I am not quick enough and it sits on

> my tongue :)

>

> Let know that she won't be noticing the taste

> after a while. I can't

> imagine being 13 and going through this, she is

> going to have to be brave

> right now, do things she doesn't like, but that soon

> she will start feeling

> better. It may not take long before results are

> seen.

>

> Keep the hypo list handy (maybe not right where she

> can see it all the time)

> but as soon as she complains about the hypo

> symptoms, call and request labs

> immediately! They should be done every 4 weeks, I

> wouldn't let them go past

> that. If she responds quickly, you don't want her

> going hypo. As the hypo

> symptoms begin appearing or hopefully, with 4 week

> labs her dosage of ptu

> will be getting cut until she is only on a small

> dose to attain remission.

>

> Some people, here and on the mediboard site have

> seen responses in just a

> couple of weeks. I hope that is the case for .

>

> Take care,

> Jody

>

>

>

> please don't send me any of your emails as I don[t

have enough email space.

luisa7stars@...___________________________________________________________\

______

> MSN Photos is the easiest way to share and print

> your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

__________________________________________________

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Guest guest

--- Jody Spitale wrote:

> Hi 's mom,

> I can only comment on Em's stomach after taking PTU.

> For a while I would

> get so sick to my stomach within half an hour of

> taking it. I have found

> taking it with something in my stomach helps with

> that. Even a piece of dry

> toast in the morning.

>

> The other symptoms I am not aware of, but maybe come

> one else will comment

> on them. How much is on?

>

> The horrible taste, well I have my water right at my

> mouth, toss the pill

> in, way back and start drinking. That has helped me

> to not taste it

> anymore, unless I am not quick enough and it sits on

> my tongue :)

>

> Let know that she won't be noticing the taste

> after a while. I can't

> imagine being 13 and going through this, she is

> going to have to be brave

> right now, do things she doesn't like, but that soon

> she will start feeling

> better. It may not take long before results are

> seen.

>

> Keep the hypo list handy (maybe not right where she

> can see it all the time)

> but as soon as she complains about the hypo

> symptoms, call and request labs

> immediately! They should be done every 4 weeks, I

> wouldn't let them go past

> that. If she responds quickly, you don't want her

> going hypo. As the hypo

> symptoms begin appearing or hopefully, with 4 week

> labs her dosage of ptu

> will be getting cut until she is only on a small

> dose to attain remission.

>

> Some people, here and on the mediboard site have

> seen responses in just a

> couple of weeks. I hope that is the case for .

>

> Take care,

> Jody

>

>

>

> please don't send me any of your emails as I don[t

have enough email space.

luisa7stars@...___________________________________________________________\

______

> MSN Photos is the easiest way to share and print

> your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

__________________________________________________

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Guest guest

--- Jody Spitale wrote:

> Hi ,

> It is extremely important that PTU be taken every 8

> hours. I can tell when

> my next dose is due as my eyes start swelling and

> become painful. I believe

> several people on TAP are now splitting their doses

> and doing better with

> that also. If not in this group, over at mediboard

> there are several doing

> that. Maybe something you will want to give a try

> at?

>

> Take care,

> Jody

>

> please don't send me any e=mail as i don't have have

enough space.

luisa7stars@...

>

>

_________________________________________________________________

> Chat with friends online, try MSN Messenger:

> http://messenger.msn.com

>

>

__________________________________________________

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Guest guest

--- Jody Spitale wrote:

> Hi ,

> It is extremely important that PTU be taken every 8

> hours. I can tell when

> my next dose is due as my eyes start swelling and

> become painful. I believe

> several people on TAP are now splitting their doses

> and doing better with

> that also. If not in this group, over at mediboard

> there are several doing

> that. Maybe something you will want to give a try

> at?

>

> Take care,

> Jody

>

> please don't send me any e=mail as i don't have have

enough space.

luisa7stars@...

>

>

_________________________________________________________________

> Chat with friends online, try MSN Messenger:

> http://messenger.msn.com

>

>

__________________________________________________

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Guest guest

,

The PTU did bother my stomach, but of course, I was pregnant when they

switched me. Some of mine could have been the pregnancy. No other problems

were experienced from it. I started on 600 mg. daily and was gradually

reduced to 50 mg. TAP was the drug I was on for 2.5 yrs., then switched to

PTU when I became pregnant. I also found that taking the PTU with the meals

helped my stomach, usually would take the meds half way during the meal.

Debbie R.

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