Re: Had my labs done....

[Guest guest]

Hi Val,

I am on the PTU to lower/suppress my TSI antibodies and it has been working.

And the TSI's are the biggest culprit in the eye disease. I will hold off

saying more until Jeannette weighs in here. I thought I have read and been

discussed that true remission is not achieved until ab's are well below

normal registering...and my endo agreed with me on my goal to achive a

reading of <0.001. If she didn't feel it was possible, I don't think she

would have let me even try the atd's.

So lets both weight until other weigh in like Jeannette, Elaine and

... U has no registering ab's now.

Keep in mind, when I was reading about this or discussing it, it is very

possible I misunderstood this factor...so now I am curious too

Jody

_________________________________________________________________

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

[Guest guest]

Hi Val,

I am on the PTU to lower/suppress my TSI antibodies and it has been working.

And the TSI's are the biggest culprit in the eye disease. I will hold off

saying more until Jeannette weighs in here. I thought I have read and been

discussed that true remission is not achieved until ab's are well below

normal registering...and my endo agreed with me on my goal to achive a

reading of <0.001. If she didn't feel it was possible, I don't think she

would have let me even try the atd's.

So lets both weight until other weigh in like Jeannette, Elaine and

... U has no registering ab's now.

Keep in mind, when I was reading about this or discussing it, it is very

possible I misunderstood this factor...so now I am curious too

Jody

_________________________________________________________________

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

[Guest guest]

Hi Val,

I am on the PTU to lower/suppress my TSI antibodies and it has been working.

And the TSI's are the biggest culprit in the eye disease. I will hold off

saying more until Jeannette weighs in here. I thought I have read and been

discussed that true remission is not achieved until ab's are well below

normal registering...and my endo agreed with me on my goal to achive a

reading of <0.001. If she didn't feel it was possible, I don't think she

would have let me even try the atd's.

So lets both weight until other weigh in like Jeannette, Elaine and

... U has no registering ab's now.

Keep in mind, when I was reading about this or discussing it, it is very

possible I misunderstood this factor...so now I am curious too

Jody

_________________________________________________________________

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

[Guest guest]

Hi Laurel,

>>>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.<<<

I never had any antibodies testing done before being diagnosed. None of

them! Not until my eye doctor tested for them last fall to make sure my eye

disease was indeed graves...that is when I asked to go on PTU for my eyes,

after learning in this group and other readings that atd's will suppress the

antibodies and it is the TSI ab's that are attacking my eyes (others may

also be involved, but this is the main culprit). I asked my endo first,

then she told me she would monitor and prescribe if the eye doc agreed to

this...he did, if the endo would prescribe and monitor <grin> I don't think

he was thrilled with the fact I had already discussed it with her

first...but oh well!

Anyhow, both had told me in our discussions on this that people on PTU for

hyperthyroid usually see significant improvement in their eyes also...if

they have the eye disease. I also talked to my endo about true remission

being when TSI's are no longer present in the body and she didn't disagree

either...nor did she agree.

When I first started going to see her, I asked for all my ab's to be tested

for the thyroid and she could see no sense in it, that they wouldn't matter.

I have given her articles and url's on ab's and seeing the improvement in

my eyes since the PTU she continues to run my TSI's regularly...she is now

seeing for herself that they do mean something, though I don't think anyone

really knows quite what.

She also tested my TPO and TRAb ab's also, which are both up. The TPO are

way up there...60 when normal is 0.0-2.0 and she is running them again after

increasing my ptu this last visit.

I also noticed that about 3 weeks into beginning ptu I felt really really

good, almost like my complete old self and this lasted for about 2 weeks

straight. It shocked me! It also didn't last <sigh>.

*MY* thoughts here, these antibodies DO mean something, they do affect how

we feel, and hopefully the atd's will suppress them and make them go away.

If the ptu quits working on me regarding this I have decided to try the

bugleweed...that ought to make my endo happy...NOT!

As for the facts, lets all wait for Elaine, and Jeannette to weigh in

here. This is really bugging me now too

Jody

_________________________________________________________________

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

[Guest guest]

Hi Laurel,

>>>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.<<<

I never had any antibodies testing done before being diagnosed. None of

them! Not until my eye doctor tested for them last fall to make sure my eye

disease was indeed graves...that is when I asked to go on PTU for my eyes,

after learning in this group and other readings that atd's will suppress the

antibodies and it is the TSI ab's that are attacking my eyes (others may

also be involved, but this is the main culprit). I asked my endo first,

then she told me she would monitor and prescribe if the eye doc agreed to

this...he did, if the endo would prescribe and monitor <grin> I don't think

he was thrilled with the fact I had already discussed it with her

first...but oh well!

Anyhow, both had told me in our discussions on this that people on PTU for

hyperthyroid usually see significant improvement in their eyes also...if

they have the eye disease. I also talked to my endo about true remission

being when TSI's are no longer present in the body and she didn't disagree

either...nor did she agree.

When I first started going to see her, I asked for all my ab's to be tested

for the thyroid and she could see no sense in it, that they wouldn't matter.

I have given her articles and url's on ab's and seeing the improvement in

my eyes since the PTU she continues to run my TSI's regularly...she is now

seeing for herself that they do mean something, though I don't think anyone

really knows quite what.

She also tested my TPO and TRAb ab's also, which are both up. The TPO are

way up there...60 when normal is 0.0-2.0 and she is running them again after

increasing my ptu this last visit.

I also noticed that about 3 weeks into beginning ptu I felt really really

good, almost like my complete old self and this lasted for about 2 weeks

straight. It shocked me! It also didn't last <sigh>.

*MY* thoughts here, these antibodies DO mean something, they do affect how

we feel, and hopefully the atd's will suppress them and make them go away.

If the ptu quits working on me regarding this I have decided to try the

bugleweed...that ought to make my endo happy...NOT!

As for the facts, lets all wait for Elaine, and Jeannette to weigh in

here. This is really bugging me now too

Jody

_________________________________________________________________

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

[Guest guest]

Hi Laurel,

>>>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.<<<

I never had any antibodies testing done before being diagnosed. None of

them! Not until my eye doctor tested for them last fall to make sure my eye

disease was indeed graves...that is when I asked to go on PTU for my eyes,

after learning in this group and other readings that atd's will suppress the

antibodies and it is the TSI ab's that are attacking my eyes (others may

also be involved, but this is the main culprit). I asked my endo first,

then she told me she would monitor and prescribe if the eye doc agreed to

this...he did, if the endo would prescribe and monitor <grin> I don't think

he was thrilled with the fact I had already discussed it with her

first...but oh well!

Anyhow, both had told me in our discussions on this that people on PTU for

hyperthyroid usually see significant improvement in their eyes also...if

they have the eye disease. I also talked to my endo about true remission

being when TSI's are no longer present in the body and she didn't disagree

either...nor did she agree.

When I first started going to see her, I asked for all my ab's to be tested

for the thyroid and she could see no sense in it, that they wouldn't matter.

I have given her articles and url's on ab's and seeing the improvement in

my eyes since the PTU she continues to run my TSI's regularly...she is now

seeing for herself that they do mean something, though I don't think anyone

really knows quite what.

She also tested my TPO and TRAb ab's also, which are both up. The TPO are

way up there...60 when normal is 0.0-2.0 and she is running them again after

increasing my ptu this last visit.

I also noticed that about 3 weeks into beginning ptu I felt really really

good, almost like my complete old self and this lasted for about 2 weeks

straight. It shocked me! It also didn't last <sigh>.

*MY* thoughts here, these antibodies DO mean something, they do affect how

we feel, and hopefully the atd's will suppress them and make them go away.

If the ptu quits working on me regarding this I have decided to try the

bugleweed...that ought to make my endo happy...NOT!

As for the facts, lets all wait for Elaine, and Jeannette to weigh in

here. This is really bugging me now too

Jody

_________________________________________________________________

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

[Guest guest]

Jody,

I'm afraid I was snoozing when the bugleweed thing was going on. Do you

remember an approximate date so I can check the archive?

The other thing I am wondering is how antithyroid drugs, given to someone who

has had RAI, could possibly reduce antibody levels! Is this maybe removing the

antigen somehow?

Tonight this seems really important because the abcess is making my arm, neck

and face swollen on my right side and I'm getting muscle spasms, chest pain and

ectopics again. Had labs done last week and the endo would only tell me to wait

for my April appointment and that they were " a little high. " I don't know which

one but he suggested my stopping the cytomel for now (because he didn't want me

to have it in the first place) which I did. I can't believe that the thing is

that brittle.

Could antibiotics (like a ton of Keflex for the abcess) be causing this? Is

there a greater demand on the dead thyroid when there is an infection present?

And it looks like my eye is forming a sty as well. Does this relate to the eye

disease or just another sign of a compromised immune system?

I feel like crap! And feel like I have a fever but am still to the subnormal

side (98)

AND I feel like I should stop whining now.

Laurel

Re: Had my labs done....

Hi Laurel,

>>>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.<<<

I never had any antibodies testing done before being diagnosed. None of

them! Not until my eye doctor tested for them last fall to make sure my eye

disease was indeed graves...that is when I asked to go on PTU for my eyes,

after learning in this group and other readings that atd's will suppress the

antibodies and it is the TSI ab's that are attacking my eyes (others may

also be involved, but this is the main culprit). I asked my endo first,

then she told me she would monitor and prescribe if the eye doc agreed to

this...he did, if the endo would prescribe and monitor <grin> I don't think

he was thrilled with the fact I had already discussed it with her

first...but oh well!

Anyhow, both had told me in our discussions on this that people on PTU for

hyperthyroid usually see significant improvement in their eyes also...if

they have the eye disease. I also talked to my endo about true remission

being when TSI's are no longer present in the body and she didn't disagree

either...nor did she agree.

When I first started going to see her, I asked for all my ab's to be tested

for the thyroid and she could see no sense in it, that they wouldn't matter.

I have given her articles and url's on ab's and seeing the improvement in

my eyes since the PTU she continues to run my TSI's regularly...she is now

seeing for herself that they do mean something, though I don't think anyone

really knows quite what.

She also tested my TPO and TRAb ab's also, which are both up. The TPO are

way up there...60 when normal is 0.0-2.0 and she is running them again after

increasing my ptu this last visit.

I also noticed that about 3 weeks into beginning ptu I felt really really

good, almost like my complete old self and this lasted for about 2 weeks

straight. It shocked me! It also didn't last <sigh>.

*MY* thoughts here, these antibodies DO mean something, they do affect how

we feel, and hopefully the atd's will suppress them and make them go away.

If the ptu quits working on me regarding this I have decided to try the

bugleweed...that ought to make my endo happy...NOT!

As for the facts, lets all wait for Elaine, and Jeannette to weigh in

here. This is really bugging me now too

Jody

_________________________________________________________________

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

-------------------------------------

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 does not have the endorsement of

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

--------------------------------------------------------------------------------\

------

[Guest guest]

Hi Jody..

Thanks for the advice. I actually did that last week. I was not supposed to

have them done for another 2 weeks but I couldn't wait. I think I am

starting to be able to recognize when things are not quite right and I know

that I can go rapidly downhill within 2-3 days. I am starting to pick up a

little again now but thanks for your concern.

Katy.

RE: Had my labs done....

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

<http://messenger.msn.com>

[Guest guest]

Hi Jody..

Thanks for the advice. I actually did that last week. I was not supposed to

have them done for another 2 weeks but I couldn't wait. I think I am

starting to be able to recognize when things are not quite right and I know

that I can go rapidly downhill within 2-3 days. I am starting to pick up a

little again now but thanks for your concern.

Katy.

RE: Had my labs done....

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

<http://messenger.msn.com>

[Guest guest]

Hi Jody..

Thanks for the advice. I actually did that last week. I was not supposed to

have them done for another 2 weeks but I couldn't wait. I think I am

starting to be able to recognize when things are not quite right and I know

that I can go rapidly downhill within 2-3 days. I am starting to pick up a

little again now but thanks for your concern.

Katy.

RE: Had my labs done....

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

<http://messenger.msn.com>

[Guest guest]

Hi Val-

I just wanted to add that everyone has thyroid antibodies, even normal

people. People with Graves' can have normal antibody titers but people

without Graves' don't have elevated antibody titers. So, it's a good way to

catch some, but not all Graves' cases. And your doctor is right, there is

always the potential for reactivation of the disease because the mechanism

that causes it is still there.

I just wanted to add that my TSI antibodies were even less than what the

normal population has (less than 60). Mine were 1/2 that (less than 30).

So I'm technically in remission.

The only reason that we know I have Graves' is because I have exophthalmus.

I was never tested for thyroid antibodies when my disease was active.

Anyhow, just a little aside about how funky this disease is.

Take care,

> > 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 Val-

I just wanted to add that everyone has thyroid antibodies, even normal

people. People with Graves' can have normal antibody titers but people

without Graves' don't have elevated antibody titers. So, it's a good way to

catch some, but not all Graves' cases. And your doctor is right, there is

always the potential for reactivation of the disease because the mechanism

that causes it is still there.

I just wanted to add that my TSI antibodies were even less than what the

normal population has (less than 60). Mine were 1/2 that (less than 30).

So I'm technically in remission.

The only reason that we know I have Graves' is because I have exophthalmus.

I was never tested for thyroid antibodies when my disease was active.

Anyhow, just a little aside about how funky this disease is.

Take care,

> > 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 Val-

I just wanted to add that everyone has thyroid antibodies, even normal

people. People with Graves' can have normal antibody titers but people

without Graves' don't have elevated antibody titers. So, it's a good way to

catch some, but not all Graves' cases. And your doctor is right, there is

always the potential for reactivation of the disease because the mechanism

that causes it is still there.

I just wanted to add that my TSI antibodies were even less than what the

normal population has (less than 60). Mine were 1/2 that (less than 30).

So I'm technically in remission.

The only reason that we know I have Graves' is because I have exophthalmus.

I was never tested for thyroid antibodies when my disease was active.

Anyhow, just a little aside about how funky this disease is.

Take care,

> > 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 Jody and Val-

I know I just posted about this. I think Jody means that she wants her TSI

antibody level much lower which they could be if her disease is not active.

Hers were significantly elevated.

For example, even though I have some (even lower than most normal people)

they are low.

Take care,

>

> > 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

[Guest guest]

Hi Jody and Val-

I know I just posted about this. I think Jody means that she wants her TSI

antibody level much lower which they could be if her disease is not active.

Hers were significantly elevated.

For example, even though I have some (even lower than most normal people)

they are low.

Take care,

>

> > 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

[Guest guest]

Hi Jody and Val-

I know I just posted about this. I think Jody means that she wants her TSI

antibody level much lower which they could be if her disease is not active.

Hers were significantly elevated.

For example, even though I have some (even lower than most normal people)

they are low.

Take care,

>

> > 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

[Guest guest]

Laurel -

Sorry you're feeling so poorly - hope your abcess gets better soon!

The more recant discussion of bugleweed was about 2/8 - 2/12, or starting at

message 11387 in the archives.

In Elaine's book, it says that ATDs decrease the stimulating TRAbs and

causes a " decrease in thyroid antigen expression in thyroid cells and reduce

the amount of prostglandins and cytokines released by thyroid cells " . Also

says that the ATDs inhibit generation of oxygen radicals in T and B cells

and in antigen presenting cells, which may contribute to decline of antibody

titers. Don't fully understand that, but I think it's a yes to the antigen

question. Interestingly, it also says that PTU has extrathyroidal effects,

which include inhibition of TPO needed to convert T4 to T3 in peripheral

tissues.

I don't think the sty is related to eye disease, I occasionally get them and

so does my daughter. Warm compresses on it can really help that.

Get some rest, you poor thing!

Re: Had my labs done....

>Jody,

>

>I'm afraid I was snoozing when the bugleweed thing was going on. Do you

remember an approximate date so I can check the archive?

>

>The other thing I am wondering is how antithyroid drugs, given to someone

who has had RAI, could possibly reduce antibody levels! Is this maybe

removing the antigen somehow?

>

>Tonight this seems really important because the abcess is making my arm,

neck and face swollen on my right side and I'm getting muscle spasms, chest

pain and ectopics again. Had labs done last week and the endo would only

tell me to wait for my April appointment and that they were " a little high. "

I don't know which one but he suggested my stopping the cytomel for now

(because he didn't want me to have it in the first place) which I did. I

can't believe that the thing is that brittle.

>

>Could antibiotics (like a ton of Keflex for the abcess) be causing this?

Is there a greater demand on the dead thyroid when there is an infection

present? And it looks like my eye is forming a sty as well. Does this

relate to the eye disease or just another sign of a compromised immune

system?

>

>I feel like crap! And feel like I have a fever but am still to the

subnormal side (98)

>AND I feel like I should stop whining now.

>Laurel

>

> Re: Had my labs done....

>

>Hi Laurel,

>>>>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.<<<

>

>I never had any antibodies testing done before being diagnosed. None of

>them! Not until my eye doctor tested for them last fall to make sure my

eye

>disease was indeed graves...that is when I asked to go on PTU for my eyes,

>after learning in this group and other readings that atd's will suppress

the

>antibodies and it is the TSI ab's that are attacking my eyes (others may

>also be involved, but this is the main culprit). I asked my endo first,

>then she told me she would monitor and prescribe if the eye doc agreed to

>this...he did, if the endo would prescribe and monitor <grin> I don't

think

>he was thrilled with the fact I had already discussed it with her

>first...but oh well!

>

>Anyhow, both had told me in our discussions on this that people on PTU for

>hyperthyroid usually see significant improvement in their eyes also...if

>they have the eye disease. I also talked to my endo about true remission

>being when TSI's are no longer present in the body and she didn't disagree

>either...nor did she agree.

>

>When I first started going to see her, I asked for all my ab's to be tested

>for the thyroid and she could see no sense in it, that they wouldn't

matter.

> I have given her articles and url's on ab's and seeing the improvement in

>my eyes since the PTU she continues to run my TSI's regularly...she is now

>seeing for herself that they do mean something, though I don't think anyone

>really knows quite what.

>

>She also tested my TPO and TRAb ab's also, which are both up. The TPO are

>way up there...60 when normal is 0.0-2.0 and she is running them again

after

>increasing my ptu this last visit.

>

>I also noticed that about 3 weeks into beginning ptu I felt really really

>good, almost like my complete old self and this lasted for about 2 weeks

>straight. It shocked me! It also didn't last <sigh>.

>

>*MY* thoughts here, these antibodies DO mean something, they do affect how

>we feel, and hopefully the atd's will suppress them and make them go away.

>If the ptu quits working on me regarding this I have decided to try the

>bugleweed...that ought to make my endo happy...NOT!

>

>As for the facts, lets all wait for Elaine, and Jeannette to weigh in

>here. This is really bugging me now too

>Jody

>

>

>

>_________________________________________________________________

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

>

>

>

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

>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 does not have the

endorsement of

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

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

-----------

>

>

[Guest guest]

Laurel -

Sorry you're feeling so poorly - hope your abcess gets better soon!

The more recant discussion of bugleweed was about 2/8 - 2/12, or starting at

message 11387 in the archives.

In Elaine's book, it says that ATDs decrease the stimulating TRAbs and

causes a " decrease in thyroid antigen expression in thyroid cells and reduce

the amount of prostglandins and cytokines released by thyroid cells " . Also

says that the ATDs inhibit generation of oxygen radicals in T and B cells

and in antigen presenting cells, which may contribute to decline of antibody

titers. Don't fully understand that, but I think it's a yes to the antigen

question. Interestingly, it also says that PTU has extrathyroidal effects,

which include inhibition of TPO needed to convert T4 to T3 in peripheral

tissues.

I don't think the sty is related to eye disease, I occasionally get them and

so does my daughter. Warm compresses on it can really help that.

Get some rest, you poor thing!

Re: Had my labs done....

>Jody,

>

>I'm afraid I was snoozing when the bugleweed thing was going on. Do you

remember an approximate date so I can check the archive?

>

>The other thing I am wondering is how antithyroid drugs, given to someone

who has had RAI, could possibly reduce antibody levels! Is this maybe

removing the antigen somehow?

>

>Tonight this seems really important because the abcess is making my arm,

neck and face swollen on my right side and I'm getting muscle spasms, chest

pain and ectopics again. Had labs done last week and the endo would only

tell me to wait for my April appointment and that they were " a little high. "

I don't know which one but he suggested my stopping the cytomel for now

(because he didn't want me to have it in the first place) which I did. I

can't believe that the thing is that brittle.

>

>Could antibiotics (like a ton of Keflex for the abcess) be causing this?

Is there a greater demand on the dead thyroid when there is an infection

present? And it looks like my eye is forming a sty as well. Does this

relate to the eye disease or just another sign of a compromised immune

system?

>

>I feel like crap! And feel like I have a fever but am still to the

subnormal side (98)

>AND I feel like I should stop whining now.

>Laurel

>

> Re: Had my labs done....

>

>Hi Laurel,

>>>>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.<<<

>

>I never had any antibodies testing done before being diagnosed. None of

>them! Not until my eye doctor tested for them last fall to make sure my

eye

>disease was indeed graves...that is when I asked to go on PTU for my eyes,

>after learning in this group and other readings that atd's will suppress

the

>antibodies and it is the TSI ab's that are attacking my eyes (others may

>also be involved, but this is the main culprit). I asked my endo first,

>then she told me she would monitor and prescribe if the eye doc agreed to

>this...he did, if the endo would prescribe and monitor <grin> I don't

think

>he was thrilled with the fact I had already discussed it with her

>first...but oh well!

>

>Anyhow, both had told me in our discussions on this that people on PTU for

>hyperthyroid usually see significant improvement in their eyes also...if

>they have the eye disease. I also talked to my endo about true remission

>being when TSI's are no longer present in the body and she didn't disagree

>either...nor did she agree.

>

>When I first started going to see her, I asked for all my ab's to be tested

>for the thyroid and she could see no sense in it, that they wouldn't

matter.

> I have given her articles and url's on ab's and seeing the improvement in

>my eyes since the PTU she continues to run my TSI's regularly...she is now

>seeing for herself that they do mean something, though I don't think anyone

>really knows quite what.

>

>She also tested my TPO and TRAb ab's also, which are both up. The TPO are

>way up there...60 when normal is 0.0-2.0 and she is running them again

after

>increasing my ptu this last visit.

>

>I also noticed that about 3 weeks into beginning ptu I felt really really

>good, almost like my complete old self and this lasted for about 2 weeks

>straight. It shocked me! It also didn't last <sigh>.

>

>*MY* thoughts here, these antibodies DO mean something, they do affect how

>we feel, and hopefully the atd's will suppress them and make them go away.

>If the ptu quits working on me regarding this I have decided to try the

>bugleweed...that ought to make my endo happy...NOT!

>

>As for the facts, lets all wait for Elaine, and Jeannette to weigh in

>here. This is really bugging me now too

>Jody

>

>

>

>_________________________________________________________________

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

>

>

>

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

>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 does not have the

endorsement of

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

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

-----------

>

>

[Guest guest]

Laurel -

Sorry you're feeling so poorly - hope your abcess gets better soon!

The more recant discussion of bugleweed was about 2/8 - 2/12, or starting at

message 11387 in the archives.

In Elaine's book, it says that ATDs decrease the stimulating TRAbs and

causes a " decrease in thyroid antigen expression in thyroid cells and reduce

the amount of prostglandins and cytokines released by thyroid cells " . Also

says that the ATDs inhibit generation of oxygen radicals in T and B cells

and in antigen presenting cells, which may contribute to decline of antibody

titers. Don't fully understand that, but I think it's a yes to the antigen

question. Interestingly, it also says that PTU has extrathyroidal effects,

which include inhibition of TPO needed to convert T4 to T3 in peripheral

tissues.

I don't think the sty is related to eye disease, I occasionally get them and

so does my daughter. Warm compresses on it can really help that.

Get some rest, you poor thing!

Re: Had my labs done....

>Jody,

>

>I'm afraid I was snoozing when the bugleweed thing was going on. Do you

remember an approximate date so I can check the archive?

>

>The other thing I am wondering is how antithyroid drugs, given to someone

who has had RAI, could possibly reduce antibody levels! Is this maybe

removing the antigen somehow?

>

>Tonight this seems really important because the abcess is making my arm,

neck and face swollen on my right side and I'm getting muscle spasms, chest

pain and ectopics again. Had labs done last week and the endo would only

tell me to wait for my April appointment and that they were " a little high. "

I don't know which one but he suggested my stopping the cytomel for now

(because he didn't want me to have it in the first place) which I did. I

can't believe that the thing is that brittle.

>

>Could antibiotics (like a ton of Keflex for the abcess) be causing this?

Is there a greater demand on the dead thyroid when there is an infection

present? And it looks like my eye is forming a sty as well. Does this

relate to the eye disease or just another sign of a compromised immune

system?

>

>I feel like crap! And feel like I have a fever but am still to the

subnormal side (98)

>AND I feel like I should stop whining now.

>Laurel

>

> Re: Had my labs done....

>

>Hi Laurel,

>>>>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.<<<

>

>I never had any antibodies testing done before being diagnosed. None of

>them! Not until my eye doctor tested for them last fall to make sure my

eye

>disease was indeed graves...that is when I asked to go on PTU for my eyes,

>after learning in this group and other readings that atd's will suppress

the

>antibodies and it is the TSI ab's that are attacking my eyes (others may

>also be involved, but this is the main culprit). I asked my endo first,

>then she told me she would monitor and prescribe if the eye doc agreed to

>this...he did, if the endo would prescribe and monitor <grin> I don't

think

>he was thrilled with the fact I had already discussed it with her

>first...but oh well!

>

>Anyhow, both had told me in our discussions on this that people on PTU for

>hyperthyroid usually see significant improvement in their eyes also...if

>they have the eye disease. I also talked to my endo about true remission

>being when TSI's are no longer present in the body and she didn't disagree

>either...nor did she agree.

>

>When I first started going to see her, I asked for all my ab's to be tested

>for the thyroid and she could see no sense in it, that they wouldn't

matter.

> I have given her articles and url's on ab's and seeing the improvement in

>my eyes since the PTU she continues to run my TSI's regularly...she is now

>seeing for herself that they do mean something, though I don't think anyone

>really knows quite what.

>

>She also tested my TPO and TRAb ab's also, which are both up. The TPO are

>way up there...60 when normal is 0.0-2.0 and she is running them again

after

>increasing my ptu this last visit.

>

>I also noticed that about 3 weeks into beginning ptu I felt really really

>good, almost like my complete old self and this lasted for about 2 weeks

>straight. It shocked me! It also didn't last <sigh>.

>

>*MY* thoughts here, these antibodies DO mean something, they do affect how

>we feel, and hopefully the atd's will suppress them and make them go away.

>If the ptu quits working on me regarding this I have decided to try the

>bugleweed...that ought to make my endo happy...NOT!

>

>As for the facts, lets all wait for Elaine, and Jeannette to weigh in

>here. This is really bugging me now too

>Jody

>

>

>

>_________________________________________________________________

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

>

>

>

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

>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 does not have the

endorsement of

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

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

-----------

>

>

[Guest guest]

Thanks ,

You are such a sweetie. I am now wondering if there aren't consequences to a

lowered T3? Isn't that why we sometimes take T3 in addition to T4? Isn't that

T3 necessary for the final conversion?

Perhaps I should go back and read Elaine's book again. I know she deals with a

lot of this stuff but I have to admit I just skimmed the bits about antithyroid

drugs since I had RAI and the endo who did that intrepreted my itching as an

allergic reaction. That, in fact, is what started this nightmare.

And thanks for the numbers on the archives. You are better than a librarian!

Laurel

Re: Had my labs done....

>

>Hi Laurel,

>>>>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.<<<

>

>I never had any antibodies testing done before being diagnosed. None of

>them! Not until my eye doctor tested for them last fall to make sure my

eye

>disease was indeed graves...that is when I asked to go on PTU for my eyes,

>after learning in this group and other readings that atd's will suppress

the

>antibodies and it is the TSI ab's that are attacking my eyes (others may

>also be involved, but this is the main culprit). I asked my endo first,

>then she told me she would monitor and prescribe if the eye doc agreed to

>this...he did, if the endo would prescribe and monitor <grin> I don't

think

>he was thrilled with the fact I had already discussed it with her

>first...but oh well!

>

>Anyhow, both had told me in our discussions on this that people on PTU for

>hyperthyroid usually see significant improvement in their eyes also...if

>they have the eye disease. I also talked to my endo about true remission

>being when TSI's are no longer present in the body and she didn't disagree

>either...nor did she agree.

>

>When I first started going to see her, I asked for all my ab's to be tested

>for the thyroid and she could see no sense in it, that they wouldn't

matter.

> I have given her articles and url's on ab's and seeing the improvement in

>my eyes since the PTU she continues to run my TSI's regularly...she is now

>seeing for herself that they do mean something, though I don't think anyone

>really knows quite what.

>

>She also tested my TPO and TRAb ab's also, which are both up. The TPO are

>way up there...60 when normal is 0.0-2.0 and she is running them again

after

>increasing my ptu this last visit.

>

>I also noticed that about 3 weeks into beginning ptu I felt really really

>good, almost like my complete old self and this lasted for about 2 weeks

>straight. It shocked me! It also didn't last <sigh>.

>

>*MY* thoughts here, these antibodies DO mean something, they do affect how

>we feel, and hopefully the atd's will suppress them and make them go away.

>If the ptu quits working on me regarding this I have decided to try the

>bugleweed...that ought to make my endo happy...NOT!

>

>As for the facts, lets all wait for Elaine, and Jeannette to weigh in

>here. This is really bugging me now too

>Jody

>

>

>

>_________________________________________________________________

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

>

>

>

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

>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 does not have the

endorsement of

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

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

-----------

>

>

[Guest guest]

> Hi Jody and Val-

>

> I know I just posted about this. I think Jody means that she wants her TSI

> antibody level much lower which they could be if her disease is not active.

> Hers were significantly elevated.

>

> For example, even though I have some (even lower than most normal people)

> they are low.

>

> Take care,

>

>

and everyone on the Antibody discussion.

I think I understand now. But in my case, I wonder. I have never had

TED symptoms and it's my understanding that my antibodies were low

at the onset of diagnosis, during treatment, and after remission.

They are just under normal range.

Should I be concerned about them still?

, with your low antibodies, do you do anything to keep them low,

or are they just that way? Could mine rise if I don't do preventative

measures?

Val

[Guest guest]

> Hi Jody and Val-

>

> I know I just posted about this. I think Jody means that she wants her TSI

> antibody level much lower which they could be if her disease is not active.

> Hers were significantly elevated.

>

> For example, even though I have some (even lower than most normal people)

> they are low.

>

> Take care,

>

>

and everyone on the Antibody discussion.

I think I understand now. But in my case, I wonder. I have never had

TED symptoms and it's my understanding that my antibodies were low

at the onset of diagnosis, during treatment, and after remission.

They are just under normal range.

Should I be concerned about them still?

, with your low antibodies, do you do anything to keep them low,

or are they just that way? Could mine rise if I don't do preventative

measures?

Val

[Guest guest]

Laurel -

I'm sure there are consequences to a lower T3. If you've got Elaine's book,

staring on page 59, it talks about the thyroid hormones and then 68-71

discusses the hormone synthesis. Not sure what you mean about the " final

conversion " , but the T4 converts to T3 through deiodination, and T3 is the

more active thyroid hormone. Says the calorgenic activity is 5-10 times that

of T4. Now sometimes people have trouble converting the T4 to T3 (couple

people here do, I believe), which is another reason why they take

supplemental T3. Also, check pages 112-113 in Elaine's book - it's got a

list of drugs and such that interfere with the various thyroid hormone

production. I don't know what all you're taking for the abscess, but maybe

in that list will jump out at you. Interestingly enough, it says

beta-blockers inhibit the conversion of T4 to T3, resulting in lower FT3 and

TT3. I didn't know that!

>And thanks for the numbers on the archives. You are better than a

librarian!

No problem. LOL, I used to work in a library as a teenager, I kind of

enjoyed it! Maybe I should go back and be a librarian when I " grow up " !

Re: Had my labs done....

>Thanks ,

>You are such a sweetie. I am now wondering if there aren't consequences to

a lowered T3? Isn't that why we sometimes take T3 in addition to T4? Isn't

that T3 necessary for the final conversion?

>

>Perhaps I should go back and read Elaine's book again. I know she deals

with a lot of this stuff but I have to admit I just skimmed the bits about

antithyroid drugs since I had RAI and the endo who did that intrepreted my

itching as an allergic reaction. That, in fact, is what started this

nightmare.

>

>And thanks for the numbers on the archives. You are better than a

librarian!

>Laurel

>

> Re: Had my labs done....

>>

>>Hi Laurel,

>>>>>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.<<<

>>

>>I never had any antibodies testing done before being diagnosed. None of

>>them! Not until my eye doctor tested for them last fall to make sure my

>eye

>>disease was indeed graves...that is when I asked to go on PTU for my eyes,

>>after learning in this group and other readings that atd's will suppress

>the

>>antibodies and it is the TSI ab's that are attacking my eyes (others may

>>also be involved, but this is the main culprit). I asked my endo first,

>>then she told me she would monitor and prescribe if the eye doc agreed to

>>this...he did, if the endo would prescribe and monitor <grin> I don't

>think

>>he was thrilled with the fact I had already discussed it with her

>>first...but oh well!

>>

>>Anyhow, both had told me in our discussions on this that people on PTU for

>>hyperthyroid usually see significant improvement in their eyes also...if

>>they have the eye disease. I also talked to my endo about true remission

>>being when TSI's are no longer present in the body and she didn't disagree

>>either...nor did she agree.

>>

>>When I first started going to see her, I asked for all my ab's to be

tested

>>for the thyroid and she could see no sense in it, that they wouldn't

>matter.

>> I have given her articles and url's on ab's and seeing the improvement

in

>>my eyes since the PTU she continues to run my TSI's regularly...she is now

>>seeing for herself that they do mean something, though I don't think

anyone

>>really knows quite what.

>>

>>She also tested my TPO and TRAb ab's also, which are both up. The TPO are

>>way up there...60 when normal is 0.0-2.0 and she is running them again

>after

>>increasing my ptu this last visit.

>>

>>I also noticed that about 3 weeks into beginning ptu I felt really really

>>good, almost like my complete old self and this lasted for about 2 weeks

>>straight. It shocked me! It also didn't last <sigh>.

>>

>>*MY* thoughts here, these antibodies DO mean something, they do affect how

>>we feel, and hopefully the atd's will suppress them and make them go away.

>>If the ptu quits working on me regarding this I have decided to try the

>>bugleweed...that ought to make my endo happy...NOT!

>>

>>As for the facts, lets all wait for Elaine, and Jeannette to weigh

in

>>here. This is really bugging me now too

>>Jody

>>

>>

>>

>>_________________________________________________________________

>>Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

>>

>>

>>

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

>>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 does not have the

>endorsement of

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

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

-

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

>>

>>

[Guest guest]

Hi Jody

Do you mean to have this when you are in remission? Whilst you are still

on high doses of Carbimazole and trying to get back to normal this would

not be giving you a correct reading or feeling???? Am I correct in this?

I think this is a wonderful idea and I will remember it in the future.

Sue

Mollymook, Australia

Jody wrote:>

>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

[Guest guest]

Hi Jody

Do you mean to have this when you are in remission? Whilst you are still

on high doses of Carbimazole and trying to get back to normal this would

not be giving you a correct reading or feeling???? Am I correct in this?

I think this is a wonderful idea and I will remember it in the future.

Sue

Mollymook, Australia

Jody wrote:>

>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