Re: Had my labs done....

[Guest guest]

Hi Katy,

I was on PTU for 3 1/2 yr. and have written MUCH on this list about my final

decent to

normal? LOL

I am running off to work right now, but if you have time today, search through

the

archives here.

Can she narrow the search? Maybe PTU and -Pam- ???

The short story is labs every 4 weeks.

Yes, the first time my TSH registered I went into a full panic. Maybe this is a

normal

hyper reaction? LOL

They say long term remission is best if PTU is for at least 18 mo. But we are

all

different, I am just saying what I have read a lot.

I will check back later, and see if you figured out the search thingie.

-Pam-

[Guest guest]

Hi Katy,

I was on PTU for 3 1/2 yr. and have written MUCH on this list about my final

decent to

normal? LOL

I am running off to work right now, but if you have time today, search through

the

archives here.

Can she narrow the search? Maybe PTU and -Pam- ???

The short story is labs every 4 weeks.

Yes, the first time my TSH registered I went into a full panic. Maybe this is a

normal

hyper reaction? LOL

They say long term remission is best if PTU is for at least 18 mo. But we are

all

different, I am just saying what I have read a lot.

I will check back later, and see if you figured out the search thingie.

-Pam-

[Guest guest]

> Is there anybody out there trying for remission that has been on PTU for

> longer than 6 months ? What level of dosage should I expect to take over the

> longer period ? Is there a point where I will actually stabilize on a

> particular amount of PTU? Or is there going to be a continual see-sawing

> effect ? You know I am so tired of feeling tired...... I don't mind taking

> pills but I have had enough of this guessing game where I try to work out

> whether I need to go and have blood work done, or not.

Katy,

This is a pretty tough part to get through. I took PTU for 13

months. I had a see saw going for most of it. It seemed like every few

weeks I needed a lower dosage, and then once I even had to up the dose

again. I saw my Endo every month during this time and it seemed every

time like a med change was needed. I got labs done ever 4 weeks as

well, and the whole time I got copies of each set of labs and I

scrutinized the tiny fluctuations, trying to determine where I felt

best.

The amount of PTU that I ended up with for most of final 7 months was

75 mg's a day. That's not much but I was euthyroid on that

amount. Then suddenly my TSH shot up and I became very ill, I was

taken off the PTU and now I am in remission. During the part where I

was taken off the PTU I had a lot of fluctuations problems for about a

month, but now it's balanced out and I am feeling good. I just got

back from the Endo today in fact, and I am now 7 weeks off of the PTU

and holding steady.

I know it feels like a rollercoaster and I think it is a bit of one

for the body, but you will balance out, I think it's just a time thing

and an individual thing too.

Hang in there!

Val

[Guest guest]

> Is there anybody out there trying for remission that has been on PTU for

> longer than 6 months ? What level of dosage should I expect to take over the

> longer period ? Is there a point where I will actually stabilize on a

> particular amount of PTU? Or is there going to be a continual see-sawing

> effect ? You know I am so tired of feeling tired...... I don't mind taking

> pills but I have had enough of this guessing game where I try to work out

> whether I need to go and have blood work done, or not.

Katy,

This is a pretty tough part to get through. I took PTU for 13

months. I had a see saw going for most of it. It seemed like every few

weeks I needed a lower dosage, and then once I even had to up the dose

again. I saw my Endo every month during this time and it seemed every

time like a med change was needed. I got labs done ever 4 weeks as

well, and the whole time I got copies of each set of labs and I

scrutinized the tiny fluctuations, trying to determine where I felt

best.

The amount of PTU that I ended up with for most of final 7 months was

75 mg's a day. That's not much but I was euthyroid on that

amount. Then suddenly my TSH shot up and I became very ill, I was

taken off the PTU and now I am in remission. During the part where I

was taken off the PTU I had a lot of fluctuations problems for about a

month, but now it's balanced out and I am feeling good. I just got

back from the Endo today in fact, and I am now 7 weeks off of the PTU

and holding steady.

I know it feels like a rollercoaster and I think it is a bit of one

for the body, but you will balance out, I think it's just a time thing

and an individual thing too.

Hang in there!

Val

[Guest guest]

> Is there anybody out there trying for remission that has been on PTU for

> longer than 6 months ? What level of dosage should I expect to take over the

> longer period ? Is there a point where I will actually stabilize on a

> particular amount of PTU? Or is there going to be a continual see-sawing

> effect ? You know I am so tired of feeling tired...... I don't mind taking

> pills but I have had enough of this guessing game where I try to work out

> whether I need to go and have blood work done, or not.

Katy,

This is a pretty tough part to get through. I took PTU for 13

months. I had a see saw going for most of it. It seemed like every few

weeks I needed a lower dosage, and then once I even had to up the dose

again. I saw my Endo every month during this time and it seemed every

time like a med change was needed. I got labs done ever 4 weeks as

well, and the whole time I got copies of each set of labs and I

scrutinized the tiny fluctuations, trying to determine where I felt

best.

The amount of PTU that I ended up with for most of final 7 months was

75 mg's a day. That's not much but I was euthyroid on that

amount. Then suddenly my TSH shot up and I became very ill, I was

taken off the PTU and now I am in remission. During the part where I

was taken off the PTU I had a lot of fluctuations problems for about a

month, but now it's balanced out and I am feeling good. I just got

back from the Endo today in fact, and I am now 7 weeks off of the PTU

and holding steady.

I know it feels like a rollercoaster and I think it is a bit of one

for the body, but you will balance out, I think it's just a time thing

and an individual thing too.

Hang in there!

Val

[Guest guest]

Thanks Val, your response is very helpful. I have reached a point right now

where I feel I should be having my labs done about every 2-3 weeks but the

doctor is actually scheduling them for every 5-6 weeks. I am keeping copies

of my labs, as has been drummed into me by all the helpful participants on

this board. Anyway it looks like I will have to grin (or grimace) and bear

it for a while.

Val, did your doctor finally determine that you were in remission by testing

for antibodies, or by just by monitoring the FT4 and TSH ?

Katy.

Re: Had my labs done....

> Is there anybody out there trying for remission that has been on PTU for

> longer than 6 months ? What level of dosage should I expect to take over

the

> longer period ? Is there a point where I will actually stabilize on a

> particular amount of PTU? Or is there going to be a continual see-sawing

> effect ? You know I am so tired of feeling tired...... I don't mind taking

> pills but I have had enough of this guessing game where I try to work out

> whether I need to go and have blood work done, or not.

Katy,

This is a pretty tough part to get through. I took PTU for 13

months. I had a see saw going for most of it. It seemed like every few

weeks I needed a lower dosage, and then once I even had to up the dose

again. I saw my Endo every month during this time and it seemed every

time like a med change was needed. I got labs done ever 4 weeks as

well, and the whole time I got copies of each set of labs and I

scrutinized the tiny fluctuations, trying to determine where I felt

best.

The amount of PTU that I ended up with for most of final 7 months was

75 mg's a day. That's not much but I was euthyroid on that

amount. Then suddenly my TSH shot up and I became very ill, I was

taken off the PTU and now I am in remission. During the part where I

was taken off the PTU I had a lot of fluctuations problems for about a

month, but now it's balanced out and I am feeling good. I just got

back from the Endo today in fact, and I am now 7 weeks off of the PTU

and holding steady.

I know it feels like a rollercoaster and I think it is a bit of one

for the body, but you will balance out, I think it's just a time thing

and an individual thing too.

Hang in there!

Val

[Guest guest]

Thanks Val, your response is very helpful. I have reached a point right now

where I feel I should be having my labs done about every 2-3 weeks but the

doctor is actually scheduling them for every 5-6 weeks. I am keeping copies

of my labs, as has been drummed into me by all the helpful participants on

this board. Anyway it looks like I will have to grin (or grimace) and bear

it for a while.

Val, did your doctor finally determine that you were in remission by testing

for antibodies, or by just by monitoring the FT4 and TSH ?

Katy.

Re: Had my labs done....

> Is there anybody out there trying for remission that has been on PTU for

> longer than 6 months ? What level of dosage should I expect to take over

the

> longer period ? Is there a point where I will actually stabilize on a

> particular amount of PTU? Or is there going to be a continual see-sawing

> effect ? You know I am so tired of feeling tired...... I don't mind taking

> pills but I have had enough of this guessing game where I try to work out

> whether I need to go and have blood work done, or not.

Katy,

This is a pretty tough part to get through. I took PTU for 13

months. I had a see saw going for most of it. It seemed like every few

weeks I needed a lower dosage, and then once I even had to up the dose

again. I saw my Endo every month during this time and it seemed every

time like a med change was needed. I got labs done ever 4 weeks as

well, and the whole time I got copies of each set of labs and I

scrutinized the tiny fluctuations, trying to determine where I felt

best.

The amount of PTU that I ended up with for most of final 7 months was

75 mg's a day. That's not much but I was euthyroid on that

amount. Then suddenly my TSH shot up and I became very ill, I was

taken off the PTU and now I am in remission. During the part where I

was taken off the PTU I had a lot of fluctuations problems for about a

month, but now it's balanced out and I am feeling good. I just got

back from the Endo today in fact, and I am now 7 weeks off of the PTU

and holding steady.

I know it feels like a rollercoaster and I think it is a bit of one

for the body, but you will balance out, I think it's just a time thing

and an individual thing too.

Hang in there!

Val

[Guest guest]

Thanks Val, your response is very helpful. I have reached a point right now

where I feel I should be having my labs done about every 2-3 weeks but the

doctor is actually scheduling them for every 5-6 weeks. I am keeping copies

of my labs, as has been drummed into me by all the helpful participants on

this board. Anyway it looks like I will have to grin (or grimace) and bear

it for a while.

Val, did your doctor finally determine that you were in remission by testing

for antibodies, or by just by monitoring the FT4 and TSH ?

Katy.

Re: Had my labs done....

> Is there anybody out there trying for remission that has been on PTU for

> longer than 6 months ? What level of dosage should I expect to take over

the

> longer period ? Is there a point where I will actually stabilize on a

> particular amount of PTU? Or is there going to be a continual see-sawing

> effect ? You know I am so tired of feeling tired...... I don't mind taking

> pills but I have had enough of this guessing game where I try to work out

> whether I need to go and have blood work done, or not.

Katy,

This is a pretty tough part to get through. I took PTU for 13

months. I had a see saw going for most of it. It seemed like every few

weeks I needed a lower dosage, and then once I even had to up the dose

again. I saw my Endo every month during this time and it seemed every

time like a med change was needed. I got labs done ever 4 weeks as

well, and the whole time I got copies of each set of labs and I

scrutinized the tiny fluctuations, trying to determine where I felt

best.

The amount of PTU that I ended up with for most of final 7 months was

75 mg's a day. That's not much but I was euthyroid on that

amount. Then suddenly my TSH shot up and I became very ill, I was

taken off the PTU and now I am in remission. During the part where I

was taken off the PTU I had a lot of fluctuations problems for about a

month, but now it's balanced out and I am feeling good. I just got

back from the Endo today in fact, and I am now 7 weeks off of the PTU

and holding steady.

I know it feels like a rollercoaster and I think it is a bit of one

for the body, but you will balance out, I think it's just a time thing

and an individual thing too.

Hang in there!

Val

[Guest guest]

Hi Katy,

It is great to see that you are responding so quickly to your ptu! I know

the frustration of trying to get to that one spot where we feel well again.

In 6 years, I am still far from feeling good in trying to find that *one*

dose of hormone replacement that will make me feel GREAT again.

I'l glad to see you splitting your dose a bit. It really is very very

important, especially with PTU to make sure your getting it every 8 hours

because it has such a short half life. I know that taking it every 8 hours

for my eyes has made a big difference! By the time hour 6/7 comes around I

can feel the pressure building in them and know it is almost time to take my

next dose.

Pam, the first Pam for the group, can really give you some great reasons and

tips on how and why to do this. I have learned a lot from her on this and it

really has helped me.

You hang in here! You will get there, look how quickly your moving towards

remission already!

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi Katy,

It is great to see that you are responding so quickly to your ptu! I know

the frustration of trying to get to that one spot where we feel well again.

In 6 years, I am still far from feeling good in trying to find that *one*

dose of hormone replacement that will make me feel GREAT again.

I'l glad to see you splitting your dose a bit. It really is very very

important, especially with PTU to make sure your getting it every 8 hours

because it has such a short half life. I know that taking it every 8 hours

for my eyes has made a big difference! By the time hour 6/7 comes around I

can feel the pressure building in them and know it is almost time to take my

next dose.

Pam, the first Pam for the group, can really give you some great reasons and

tips on how and why to do this. I have learned a lot from her on this and it

really has helped me.

You hang in here! You will get there, look how quickly your moving towards

remission already!

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi Katy,

It is great to see that you are responding so quickly to your ptu! I know

the frustration of trying to get to that one spot where we feel well again.

In 6 years, I am still far from feeling good in trying to find that *one*

dose of hormone replacement that will make me feel GREAT again.

I'l glad to see you splitting your dose a bit. It really is very very

important, especially with PTU to make sure your getting it every 8 hours

because it has such a short half life. I know that taking it every 8 hours

for my eyes has made a big difference! By the time hour 6/7 comes around I

can feel the pressure building in them and know it is almost time to take my

next dose.

Pam, the first Pam for the group, can really give you some great reasons and

tips on how and why to do this. I have learned a lot from her on this and it

really has helped me.

You hang in here! You will get there, look how quickly your moving towards

remission already!

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi Val,

Congrats on 7 weeks in remission!!!!

>>>I scrutinized the tiny fluctuations, trying to determine where I felt

>>>best.<<<

Just a comment here that we have talked about in the past, this is why many

of us recommended a note to ourselves on the days we have our labs done and

how we feel THAT day, then when the labs come back, clip or staple that note

to your labs. On the days you have them done, when you feel good, it will

then be right there for a target to shoot for where you feel your best.

After my next set of labs, my doctor is going to give me a lab slip to go

and get them taken on days when I wake up and feel GOOD so we will be able

to find my target, rather than ever 4 weeks or every 6 weeks or whatever the

doc normally orders them for. Just something to keep in mind as you travel

this journey.

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Val,

Congrats on 7 weeks in remission!!!!

>>>I scrutinized the tiny fluctuations, trying to determine where I felt

>>>best.<<<

Just a comment here that we have talked about in the past, this is why many

of us recommended a note to ourselves on the days we have our labs done and

how we feel THAT day, then when the labs come back, clip or staple that note

to your labs. On the days you have them done, when you feel good, it will

then be right there for a target to shoot for where you feel your best.

After my next set of labs, my doctor is going to give me a lab slip to go

and get them taken on days when I wake up and feel GOOD so we will be able

to find my target, rather than ever 4 weeks or every 6 weeks or whatever the

doc normally orders them for. Just something to keep in mind as you travel

this journey.

Jody

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

> Val, did your doctor finally determine that you were in remission by testing

> for antibodies, or by just by monitoring the FT4 and TSH ?

Katy,

I was diagnosed partially with the help of the antibody test. My Endo

explained that when they suspect GD they test to see if there are

antibodies present, (there were in my case) but then she said that even if

remission is attained,there will always be antibodies present. I think

that's the nature of chronic...the symtoms can go away, but the

disease is always there.

In the case of my remission, and ongoing treatment prior, I was tested

for TSH, FT4 and T3. Those were the things used to determine my

euthyroid state and remission. It was tough though. About 2 weeks

after going off the PTU, my TSH shot up 5 points, and they couldn't

figure out why, they thought it might mean Hashi's...but then in the

last month, my TSH has dropped again. I have heard that for some folks

TSH is stubborn to budge, but mine seems to delight in jumping all

around. I am still wondering what will happen, I have only been off

the PTU for a month and a half, but for the last 4 weeks, my levels

have balanced.

When I think about the last 14 or so months, it seems like it should

have gone a lot quicker, but it has been rough. I think one of the

hardest things for me was wondering every day if it was going to be

sluggish day, or a hyper day, a moody depressed day or a happy day. I

felt like I was on a weird ride. I know it can be really really hard

to keep your perspective and some days it's hard to believe you're

getting better. Just keep the faith.

Val

[Guest guest]

> Val, did your doctor finally determine that you were in remission by testing

> for antibodies, or by just by monitoring the FT4 and TSH ?

Katy,

I was diagnosed partially with the help of the antibody test. My Endo

explained that when they suspect GD they test to see if there are

antibodies present, (there were in my case) but then she said that even if

remission is attained,there will always be antibodies present. I think

that's the nature of chronic...the symtoms can go away, but the

disease is always there.

In the case of my remission, and ongoing treatment prior, I was tested

for TSH, FT4 and T3. Those were the things used to determine my

euthyroid state and remission. It was tough though. About 2 weeks

after going off the PTU, my TSH shot up 5 points, and they couldn't

figure out why, they thought it might mean Hashi's...but then in the

last month, my TSH has dropped again. I have heard that for some folks

TSH is stubborn to budge, but mine seems to delight in jumping all

around. I am still wondering what will happen, I have only been off

the PTU for a month and a half, but for the last 4 weeks, my levels

have balanced.

When I think about the last 14 or so months, it seems like it should

have gone a lot quicker, but it has been rough. I think one of the

hardest things for me was wondering every day if it was going to be

sluggish day, or a hyper day, a moody depressed day or a happy day. I

felt like I was on a weird ride. I know it can be really really hard

to keep your perspective and some days it's hard to believe you're

getting better. Just keep the faith.

Val

[Guest guest]

> Val, did your doctor finally determine that you were in remission by testing

> for antibodies, or by just by monitoring the FT4 and TSH ?

Katy,

I was diagnosed partially with the help of the antibody test. My Endo

explained that when they suspect GD they test to see if there are

antibodies present, (there were in my case) but then she said that even if

remission is attained,there will always be antibodies present. I think

that's the nature of chronic...the symtoms can go away, but the

disease is always there.

In the case of my remission, and ongoing treatment prior, I was tested

for TSH, FT4 and T3. Those were the things used to determine my

euthyroid state and remission. It was tough though. About 2 weeks

after going off the PTU, my TSH shot up 5 points, and they couldn't

figure out why, they thought it might mean Hashi's...but then in the

last month, my TSH has dropped again. I have heard that for some folks

TSH is stubborn to budge, but mine seems to delight in jumping all

around. I am still wondering what will happen, I have only been off

the PTU for a month and a half, but for the last 4 weeks, my levels

have balanced.

When I think about the last 14 or so months, it seems like it should

have gone a lot quicker, but it has been rough. I think one of the

hardest things for me was wondering every day if it was going to be

sluggish day, or a hyper day, a moody depressed day or a happy day. I

felt like I was on a weird ride. I know it can be really really hard

to keep your perspective and some days it's hard to believe you're

getting better. Just keep the faith.

Val

[Guest guest]

Hi Katy,

When you start to feel those hypo symptoms, call the doc immediately and

request labs. There is no reason for you to have to hold out for another

2/3 weeks to get them on *his* schedule...you can really be feeling terrible

by that time. Most doctors will go ahead and tell you to go get them drawn

when you call because of your symptoms...if yours tries to hold you off,

tell him you can not wait you feel too sick, are missing work because of how

you feel...anything, just so he knows you can not and will not wait.

Take care and feel better soon,

Jody

_________________________________________________________________

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

[Guest guest]

> Hi Val,

> Congrats on 7 weeks in remission!!!!

Thanks!

> Just a comment here that we have talked about in the past, this is why many

> of us recommended a note to ourselves on the days we have our labs done and

> how we feel THAT day, then when the labs come back, clip or staple that note

> to your labs. On the days you have them done, when you feel good, it will

> then be right there for a target to shoot for where you feel your best.

Jody, that's a great idea! Since whenever I think about the lab day,

all I can seem to remember is waiting around in the Dr's office for a

long time while I sit there thinking " when will they get their stuff

together and make ME their #1 priority!! "

> After my next set of labs, my doctor is going to give me a lab slip to go

> and get them taken on days when I wake up and feel GOOD so we will be able

> to find my target, rather than ever 4 weeks or every 6 weeks or whatever the

> doc normally orders them for. Just something to keep in mind as you travel

> this journey.

> Jody

ANother great idea, I think I will suggest that to my Endo. Right now

she still has me every 4 weeks until they are sure that I am

stable. When I go back in 4 weeks, I'll ask her to put me on " standby "

Val

[Guest guest]

> Hi Val,

> Congrats on 7 weeks in remission!!!!

Thanks!

> Just a comment here that we have talked about in the past, this is why many

> of us recommended a note to ourselves on the days we have our labs done and

> how we feel THAT day, then when the labs come back, clip or staple that note

> to your labs. On the days you have them done, when you feel good, it will

> then be right there for a target to shoot for where you feel your best.

Jody, that's a great idea! Since whenever I think about the lab day,

all I can seem to remember is waiting around in the Dr's office for a

long time while I sit there thinking " when will they get their stuff

together and make ME their #1 priority!! "

> After my next set of labs, my doctor is going to give me a lab slip to go

> and get them taken on days when I wake up and feel GOOD so we will be able

> to find my target, rather than ever 4 weeks or every 6 weeks or whatever the

> doc normally orders them for. Just something to keep in mind as you travel

> this journey.

> Jody

ANother great idea, I think I will suggest that to my Endo. Right now

she still has me every 4 weeks until they are sure that I am

stable. When I go back in 4 weeks, I'll ask her to put me on " standby "

Val

[Guest guest]

> Hi Val,

> Congrats on 7 weeks in remission!!!!

Thanks!

> Just a comment here that we have talked about in the past, this is why many

> of us recommended a note to ourselves on the days we have our labs done and

> how we feel THAT day, then when the labs come back, clip or staple that note

> to your labs. On the days you have them done, when you feel good, it will

> then be right there for a target to shoot for where you feel your best.

Jody, that's a great idea! Since whenever I think about the lab day,

all I can seem to remember is waiting around in the Dr's office for a

long time while I sit there thinking " when will they get their stuff

together and make ME their #1 priority!! "

> After my next set of labs, my doctor is going to give me a lab slip to go

> and get them taken on days when I wake up and feel GOOD so we will be able

> to find my target, rather than ever 4 weeks or every 6 weeks or whatever the

> doc normally orders them for. Just something to keep in mind as you travel

> this journey.

> Jody

ANother great idea, I think I will suggest that to my Endo. Right now

she still has me every 4 weeks until they are sure that I am

stable. When I go back in 4 weeks, I'll ask her to put me on " standby "

Val

[Guest guest]

Hi Val,

It sure has helped me so far doing it this way.

Have you asked your endo to run the TSI ab's while you are in remission,

just to see where they are at? I just posted to Jeannette to see how her

doctor has determined her long lasting remission so far on this issue.

I want my TSI ab's gone...RAI did not do that...so am on the ptu for now,

and can better understand what everyone goes through on the roller coaster

trying to attain remission. My endo does agree with me in getting my TSI's

to <0.001 as they appear to be the biggest culprit in our eye disease...so

that is my goal, and why she checks them every draw right now.

Take care,

Jody

_________________________________________________________________

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[Guest guest]

Hi Val,

It sure has helped me so far doing it this way.

Have you asked your endo to run the TSI ab's while you are in remission,

just to see where they are at? I just posted to Jeannette to see how her

doctor has determined her long lasting remission so far on this issue.

I want my TSI ab's gone...RAI did not do that...so am on the ptu for now,

and can better understand what everyone goes through on the roller coaster

trying to attain remission. My endo does agree with me in getting my TSI's

to <0.001 as they appear to be the biggest culprit in our eye disease...so

that is my goal, and why she checks them every draw right now.

Take care,

Jody

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Val,

It sure has helped me so far doing it this way.

Have you asked your endo to run the TSI ab's while you are in remission,

just to see where they are at? I just posted to Jeannette to see how her

doctor has determined her long lasting remission so far on this issue.

I want my TSI ab's gone...RAI did not do that...so am on the ptu for now,

and can better understand what everyone goes through on the roller coaster

trying to attain remission. My endo does agree with me in getting my TSI's

to <0.001 as they appear to be the biggest culprit in our eye disease...so

that is my goal, and why she checks them every draw right now.

Take care,

Jody

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[Guest guest]

> Have you asked your endo to run the TSI ab's while you are in remission,

> just to see where they are at? I just posted to Jeannette to see how her

> doctor has determined her long lasting remission so far on this issue.

>

> I want my TSI ab's gone...RAI did not do that...so am on the ptu for now,

> and can better understand what everyone goes through on the roller coaster

> trying to attain remission. My endo does agree with me in getting my TSI's

> to <0.001 as they appear to be the biggest culprit in our eye disease...so

> that is my goal, and why she checks them every draw right now.

>

> Take care,

> Jody

Jody,

Hmmm, I am a little bit confused about the TSI ab's. My endo said

they are present no matter what and never given me any idication of how

they might be lowered.

I have had them tested 3 times, once at the beginning, then

middle and then end. They have held pretty much steady, with little

fluctuation.

My endo seems to just use them as a nod for GD. Am I missing something

vital about them?

Val

[Guest guest]

Jody,

This is one of the places where I get really confused. I finally got part of my

record, though a great part of it was illegible or just ink spots on the page)

and it seems that everybody but me has known all along that my antibodies were

high. At least they have known for a year. But, so far, nobody has mentioned

any way to get that level down. To my knowledge nobody has tested for them

either since the origional positive results. Nor, does it seem, anybody

particularly cares.

In the meantime......my eyes are no better and on some days worse. This is at

least 18 most into the eye disease. I am catching infections that I would have

shrugged off before. My steroid injection for the spinal problem (which makes my

beloved workouts impossible) had to be postponed because of an abcess on my arm

the size of West Texas.

Sometimes I forget what I'm supposed to be shooting for anyway. All the doctors

involved (except the endo) are sympathetic but seem to be relieved that its not

their problem. This drags on and there is no notable improvement in any sphere,

except that my heart is beating normally (except for the discovery in the

records that I seem to have a left ventricular defect and some regurgitation in

the tricuspid and mitral valves--a fact rather like the pituitary adenoma,

nobody felt the need to let me know.)

Am I doing something wrong here? Went on the suppliments, try to let go of the

anxiety, try to stop being in charge of everything. And still, I don't know

what I'm shooting for or what to ask for and, it seems, the doctors aren't going

to worry about it.

How does one achieve the elusive remission?

Laurel

Re: Had my labs done....

> Have you asked your endo to run the TSI ab's while you are in remission,

> just to see where they are at? I just posted to Jeannette to see how her

> doctor has determined her long lasting remission so far on this issue.

>

> I want my TSI ab's gone...RAI did not do that...so am on the ptu for now,

> and can better understand what everyone goes through on the roller coaster

> trying to attain remission. My endo does agree with me in getting my TSI's

> to <0.001 as they appear to be the biggest culprit in our eye disease...so

> that is my goal, and why she checks them every draw right now.

>

> Take care,

> Jody

Jody,

Hmmm, I am a little bit confused about the TSI ab's. My endo said

they are present no matter what and never given me any idication of how

they might be lowered.

I have had them tested 3 times, once at the beginning, then

middle and then end. They have held pretty much steady, with little

fluctuation.

My endo seems to just use them as a nod for GD. Am I missing something

vital about them?

Val

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