Re: New test results - Please comment

[Guest guest]

Jody and all,

I am on 2 grain of Armour. So far the doctor has refused to change that

amount. My pulse is running about 103 for a high, so I do not know if that is

his concern or what.

Frannie

[Guest guest]

Jody and all,

I am on 2 grain of Armour. So far the doctor has refused to change that

amount. My pulse is running about 103 for a high, so I do not know if that is

his concern or what.

Frannie

[Guest guest]

Jody and all,

I am on 2 grain of Armour. So far the doctor has refused to change that

amount. My pulse is running about 103 for a high, so I do not know if that is

his concern or what.

Frannie

[Guest guest]

Jody,

Forgot to ask? Are doctors subscribing PTU as well as a thyroid replacement?

I was on PTU, way back when, before the RAI.

Frannie

[Guest guest]

Hi Frannie,

What treatment are you currently on?

Your doctor is WRONG about having the higher antibodies. I had RAI in '96

.... I am now on PTU to supress my TSI antibodies...I asked my doctors to try

this treatment for my eyes and it is working...it is also helping in some

small ways with how I feel overall...though I can not pinpoint exactly

what/how, just that in some areas I am doing better.

If your taking replacement hormone, maybe you need to change what kind your

on, especially if it is synthroid. I was not getting good quality

conversion of T4 to the T3 the body needs when I was on synthroid. Since

being on Armour (or maybe even adding a T3 to your regime) it has made a

HUGE difference in the quality of my life.

Let us know what treatment your on.

Jody

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[Guest guest]

Hi Frannie,

What treatment are you currently on?

Your doctor is WRONG about having the higher antibodies. I had RAI in '96

.... I am now on PTU to supress my TSI antibodies...I asked my doctors to try

this treatment for my eyes and it is working...it is also helping in some

small ways with how I feel overall...though I can not pinpoint exactly

what/how, just that in some areas I am doing better.

If your taking replacement hormone, maybe you need to change what kind your

on, especially if it is synthroid. I was not getting good quality

conversion of T4 to the T3 the body needs when I was on synthroid. Since

being on Armour (or maybe even adding a T3 to your regime) it has made a

HUGE difference in the quality of my life.

Let us know what treatment your on.

Jody

_________________________________________________________________

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[Guest guest]

Hi Frannie,

What treatment are you currently on?

Your doctor is WRONG about having the higher antibodies. I had RAI in '96

.... I am now on PTU to supress my TSI antibodies...I asked my doctors to try

this treatment for my eyes and it is working...it is also helping in some

small ways with how I feel overall...though I can not pinpoint exactly

what/how, just that in some areas I am doing better.

If your taking replacement hormone, maybe you need to change what kind your

on, especially if it is synthroid. I was not getting good quality

conversion of T4 to the T3 the body needs when I was on synthroid. Since

being on Armour (or maybe even adding a T3 to your regime) it has made a

HUGE difference in the quality of my life.

Let us know what treatment your on.

Jody

_________________________________________________________________

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[Guest guest]

I really wonder if they shouldn't do this to get the antibodies down even

after RAI. It seems to be working for Jody. Since RAI doesn't really fix

the problem, which is the autoimmune disorder, it seems that if they used

ATDs to try to get the antibodies down, that RAI patients might not have all

the other problems that continue after the RAI. It's like the antibodies

are there and want to attack something, so they go for the eyes or the

muscles or the skin, etc. It seems so simple to me. The doctors should be

concentrating on getting our antibodies down rather than just treating

symptoms! Why doesn't the medical community get this? Or maybe they do,

and they just don't know how to do it, so they kill the thyroid or block it.

And we still have the disease... Rambling again...

Holly

Re: New test results - Please comment

Jody,

Forgot to ask? Are doctors subscribing PTU as well as a thyroid replacement?

I was on PTU, way back when, before the RAI.

Frannie

[Guest guest]

I really wonder if they shouldn't do this to get the antibodies down even

after RAI. It seems to be working for Jody. Since RAI doesn't really fix

the problem, which is the autoimmune disorder, it seems that if they used

ATDs to try to get the antibodies down, that RAI patients might not have all

the other problems that continue after the RAI. It's like the antibodies

are there and want to attack something, so they go for the eyes or the

muscles or the skin, etc. It seems so simple to me. The doctors should be

concentrating on getting our antibodies down rather than just treating

symptoms! Why doesn't the medical community get this? Or maybe they do,

and they just don't know how to do it, so they kill the thyroid or block it.

And we still have the disease... Rambling again...

Holly

Re: New test results - Please comment

Jody,

Forgot to ask? Are doctors subscribing PTU as well as a thyroid replacement?

I was on PTU, way back when, before the RAI.

Frannie

[Guest guest]

Hi Frannie,

I am on PTU for my eye disease. I refuse to discuss eye radiation and I

don't want to do steroids unless I absolutely have to. My eye doc ran my

TSI ab's and they were at 199%..normal for my lab being under 130%. I know

ATD's bring down the TSI ab's, to be in remission, those antibodies need to

be gone so I approached my endo first with the idea of trying the PTU to get

rid of my TSI ab's to get her opinion and to know ahead of time, that if the

eye doc said I could try this would she monitor me. She thought it was worth

a shot and yes she would monitor all the labs.

Went to the eye doc next where he started again on radiation and steroids.

I told him, again, radiation is not something we will talk about, and that I

would consider the steroids as a last resort if he would allow me to use PTU

to bring down my ab's and if that would help with my eyes. He agreed to

allow me to try this...he wasn't happy about it, but he did admit that

people on PTU for hyperthyroid do see a lessening in their symptoms of eye

disease.

I went to both docs on the 7th of December. The eye doc was very pleased

with the progress in my eyes. They are once again working together, they

are soft and pliable and I have no double vision or delayed focusing when

turning my head. He told me to keep on with this and I see him in March.

Went to the endo, told her about the eye doc and that I was to keep on doing

this.

We discussed the fact that I want my TSI ab's GONE,not just below the

acceptable values...she does want to to begin cutting back on my PTU though.

I have been doing 25 mg. every 8 hours and on Sunday cut it back to 25 mg.

every 12 hours. Even with the increase in my Armour from a 90 and a 15 to a

90, 15, and 30 I am still hypO...and this is NOT the time of year I can be

in hypohell.

Before I started on the PTU in October, my endo ran a full liver panel and

wbc and is watching them close. My last labs had my ab's down to 144% I

don't get them run again until beginning of February. I believe this is

going to work for my eye disease, and I have already asked both, that if

this is successful would they both please write papers on this treatment so

hopefully other ophthos and endos will consider it before giving us steroids

that do such horrible things to our bodies. Not that there aren't side

effects to PTU and TAP, I just thing they are much less than what steroids

do to us.

I had RAI in '96 Frannie, but the RAI did not get rid of the antibodies, I

still have some thyroid function left and I want to keep it. I think to

keep that and to get my eyes better I need to get rid of the TSI ab's. I

may be way off base in this theory...and it is my theory, not the docs.

TTYL

Jody

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[Guest guest]

Hi Frannie,

I am on PTU for my eye disease. I refuse to discuss eye radiation and I

don't want to do steroids unless I absolutely have to. My eye doc ran my

TSI ab's and they were at 199%..normal for my lab being under 130%. I know

ATD's bring down the TSI ab's, to be in remission, those antibodies need to

be gone so I approached my endo first with the idea of trying the PTU to get

rid of my TSI ab's to get her opinion and to know ahead of time, that if the

eye doc said I could try this would she monitor me. She thought it was worth

a shot and yes she would monitor all the labs.

Went to the eye doc next where he started again on radiation and steroids.

I told him, again, radiation is not something we will talk about, and that I

would consider the steroids as a last resort if he would allow me to use PTU

to bring down my ab's and if that would help with my eyes. He agreed to

allow me to try this...he wasn't happy about it, but he did admit that

people on PTU for hyperthyroid do see a lessening in their symptoms of eye

disease.

I went to both docs on the 7th of December. The eye doc was very pleased

with the progress in my eyes. They are once again working together, they

are soft and pliable and I have no double vision or delayed focusing when

turning my head. He told me to keep on with this and I see him in March.

Went to the endo, told her about the eye doc and that I was to keep on doing

this.

We discussed the fact that I want my TSI ab's GONE,not just below the

acceptable values...she does want to to begin cutting back on my PTU though.

I have been doing 25 mg. every 8 hours and on Sunday cut it back to 25 mg.

every 12 hours. Even with the increase in my Armour from a 90 and a 15 to a

90, 15, and 30 I am still hypO...and this is NOT the time of year I can be

in hypohell.

Before I started on the PTU in October, my endo ran a full liver panel and

wbc and is watching them close. My last labs had my ab's down to 144% I

don't get them run again until beginning of February. I believe this is

going to work for my eye disease, and I have already asked both, that if

this is successful would they both please write papers on this treatment so

hopefully other ophthos and endos will consider it before giving us steroids

that do such horrible things to our bodies. Not that there aren't side

effects to PTU and TAP, I just thing they are much less than what steroids

do to us.

I had RAI in '96 Frannie, but the RAI did not get rid of the antibodies, I

still have some thyroid function left and I want to keep it. I think to

keep that and to get my eyes better I need to get rid of the TSI ab's. I

may be way off base in this theory...and it is my theory, not the docs.

TTYL

Jody

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[Guest guest]

Holly,

It is plain old common sense, in my opinion. Hopefully more and more docs

will come to understand this eventually. I literally thank God that I have

the doctors I have now. They listen and will let me make suggestions. They

may not agree with them at first, and sometimes things I want to do or try

don't work, but I call and tell them when that happens too. I don't keep

anything from either my eye doc or my endo. I think we learn from each

other, and I am blessed to be able to say that.

If any of us can make even baby steps with our doctors in getting them to

continue learning about this disease, even learning from us (even if they

won't ever admit that) then we, everyone of us here are making a difference

for that next patient that comes walking through the door. There are more

and more docs not doing RAI, more and more learning about alternatives in

conjunction with or in place of allopathic. So, yes, some of us may have

harder roads with this disease at time, but we are making a difference, and

hopefully that will count towards something for that next newly diagnosed

Graves patient.

I'm rambling too It is half snow, half rain, and I just feel like it

today

Jody

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[Guest guest]

Hi Frannie,

My doctor understands that when high thyrogobulin antibodies are present,

patients generally need more thyroid hormone than what their tests show. It's

also not true that once you have GD your antibody titers always remain high.

IgG immunoglobulins or antibodies degrade or break down after a few months.

Once your body stops producing them your titers go down. Otherwise, you have

a sustained autoimmune process going on.

[Guest guest]

Hi Frannie,

My doctor understands that when high thyrogobulin antibodies are present,

patients generally need more thyroid hormone than what their tests show. It's

also not true that once you have GD your antibody titers always remain high.

IgG immunoglobulins or antibodies degrade or break down after a few months.

Once your body stops producing them your titers go down. Otherwise, you have

a sustained autoimmune process going on.

[Guest guest]

Hi Frannie,

My doctor understands that when high thyrogobulin antibodies are present,

patients generally need more thyroid hormone than what their tests show. It's

also not true that once you have GD your antibody titers always remain high.

IgG immunoglobulins or antibodies degrade or break down after a few months.

Once your body stops producing them your titers go down. Otherwise, you have

a sustained autoimmune process going on.

[Guest guest]

Frannie,

There may be too much T3 in Armour for you, and that will keep your pulse up.

The ratio of T3 to T4 in Armour (porcine glandular extract) is a bit higher

than what's seen in humans. We're all so different that what works for one

person may not work for another. Other options are compounded formulas or T4

and T3 taken separately which allows you to increase the T4 without

increasing the T3.

Of course your high pulse could be from other causes. I get palpitations when

my thyroid hormone levels are too low.

[Guest guest]

Frannie,

There may be too much T3 in Armour for you, and that will keep your pulse up.

The ratio of T3 to T4 in Armour (porcine glandular extract) is a bit higher

than what's seen in humans. We're all so different that what works for one

person may not work for another. Other options are compounded formulas or T4

and T3 taken separately which allows you to increase the T4 without

increasing the T3.

Of course your high pulse could be from other causes. I get palpitations when

my thyroid hormone levels are too low.

[Guest guest]

Frannie,

There may be too much T3 in Armour for you, and that will keep your pulse up.

The ratio of T3 to T4 in Armour (porcine glandular extract) is a bit higher

than what's seen in humans. We're all so different that what works for one

person may not work for another. Other options are compounded formulas or T4

and T3 taken separately which allows you to increase the T4 without

increasing the T3.

Of course your high pulse could be from other causes. I get palpitations when

my thyroid hormone levels are too low.

[Guest guest]

Frannie,

I am not sure what the test results mean, especially the antibodies that

were tested as those are way high, it seems. Hopefully Elaine will jump in

here and give you some ideas. She is also on Armour Thyroid, I think she is

at 3 grams a day.

I wonder if PTU or TAP would bring down those ab levels too? I know they do

bring down the TSI ab's. If they do, and if your doctor were to treat you

with ATD's along with your Armour, your need to be prepared to get some hypO

symptoms and get your Armour increased, if you have some function left in

your thyroid. If you don't have function left, you won't go hypO. Just

food for thought here.

I do hope you find someone to help you get to feeling better soon!

Jody

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[Guest guest]

Frannie,

I am not sure what the test results mean, especially the antibodies that

were tested as those are way high, it seems. Hopefully Elaine will jump in

here and give you some ideas. She is also on Armour Thyroid, I think she is

at 3 grams a day.

I wonder if PTU or TAP would bring down those ab levels too? I know they do

bring down the TSI ab's. If they do, and if your doctor were to treat you

with ATD's along with your Armour, your need to be prepared to get some hypO

symptoms and get your Armour increased, if you have some function left in

your thyroid. If you don't have function left, you won't go hypO. Just

food for thought here.

I do hope you find someone to help you get to feeling better soon!

Jody

_________________________________________________________________

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

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[Guest guest]

Hi Frannie-

Your doctor is wrong. If you're in remission (you still have Graves') your

antibody levels are normal.

For example, my TSI antibodies are <30. Normal is <60. I don't have any

thyroglobin or peroxidase abs either.

I still have Graves' even though it's not active.

Take care,

> I have been trying for months to determine if my thyroid is being

> supported enough with hormone. I tried to talk to the doctor

> conserning antibodies. Did not get far. He did test two of the

> antibodies, but I do not think these are the ones others have

> suggested. It appears to me that I am low TSH, but the T3 AND T4

> could move upward some. The only comment the doctor made, was you

> will always have these super high antibodies because you have Graves

> disease.

> Please comment about these results:

>

> Free T3 2.80 2.30-4.20

> Free T4 .99 .70-1.90

> TSH .46 0.3-5.7

>

> THYROGLOBULIN AB 2717.0 <41

> THYROGLOBULIN PEROXIDASE AB TPO 904.0 <35

>

> I have been very ill four over three years. I have other issues,

> adrenal,metals, etc. It is very important that I try to correct each

> malfunction the best I can.

>

> Thanks for any comments,

> Frannie

[Guest guest]

Hi Frannie-

Your doctor is wrong. If you're in remission (you still have Graves') your

antibody levels are normal.

For example, my TSI antibodies are <30. Normal is <60. I don't have any

thyroglobin or peroxidase abs either.

I still have Graves' even though it's not active.

Take care,

> I have been trying for months to determine if my thyroid is being

> supported enough with hormone. I tried to talk to the doctor

> conserning antibodies. Did not get far. He did test two of the

> antibodies, but I do not think these are the ones others have

> suggested. It appears to me that I am low TSH, but the T3 AND T4

> could move upward some. The only comment the doctor made, was you

> will always have these super high antibodies because you have Graves

> disease.

> Please comment about these results:

>

> Free T3 2.80 2.30-4.20

> Free T4 .99 .70-1.90

> TSH .46 0.3-5.7

>

> THYROGLOBULIN AB 2717.0 <41

> THYROGLOBULIN PEROXIDASE AB TPO 904.0 <35

>

> I have been very ill four over three years. I have other issues,

> adrenal,metals, etc. It is very important that I try to correct each

> malfunction the best I can.

>

> Thanks for any comments,

> Frannie

[Guest guest]

Hi Frannie-

Your doctor is wrong. If you're in remission (you still have Graves') your

antibody levels are normal.

For example, my TSI antibodies are <30. Normal is <60. I don't have any

thyroglobin or peroxidase abs either.

I still have Graves' even though it's not active.

Take care,

> I have been trying for months to determine if my thyroid is being

> supported enough with hormone. I tried to talk to the doctor

> conserning antibodies. Did not get far. He did test two of the

> antibodies, but I do not think these are the ones others have

> suggested. It appears to me that I am low TSH, but the T3 AND T4

> could move upward some. The only comment the doctor made, was you

> will always have these super high antibodies because you have Graves

> disease.

> Please comment about these results:

>

> Free T3 2.80 2.30-4.20

> Free T4 .99 .70-1.90

> TSH .46 0.3-5.7

>

> THYROGLOBULIN AB 2717.0 <41

> THYROGLOBULIN PEROXIDASE AB TPO 904.0 <35

>

> I have been very ill four over three years. I have other issues,

> adrenal,metals, etc. It is very important that I try to correct each

> malfunction the best I can.

>

> Thanks for any comments,

> Frannie

[Guest guest]

Another thing Frannie is that the T3 in Armour seems to supress TSH more

than T4 (Synthroid) does. When I was on only 2 gr of Armour, my TSH was

0.46 (on the equivalent dose of Synthroid it was 2.5) but I slept all day

and all night except for an hour in the morning and an hour in the

afternoon. It turns out that TSH wasn't an accurate gauge. My free T3 and

free T4 levels were below normal. I can't remember what HR and BP were on

this dose but you can have higher BP when hypo if you're cholesterol is

high. No matter what I've been on (even when hypo), I periodically have a

racing heart.

This TSH suppression probably has something to do with the short 1/2 life of

T3. You get a big dose all at once that wears off quickly while your

pituitary may be still thinking about that T3 spike. While T3 is at it's

peak, your HR and BP may be high.

Now, I'm on 4 gr (the endo would have to figure out what is right for you),

and my free T3 levels are mid-normal while my T4 levels are mid to high

normal. Even so, I still am wiped out in the morning for the 1st hour after

waking (til the Armour kicks in) and for 3 hours in the afternoon (2 before

I take the Armour and 1 after). My TSH is 0.01.

Both times I've been on Armour I've split my dose. 1/2 when I wake up and

1/2 at 4:00 pm.

Anyhow, you need to find a doctor that's willing to work with you on this.

Take care,

> Hi Frannie-

>

> Your doctor is wrong. If you're in remission (you still have Graves')

your

> antibody levels are normal.

>

> For example, my TSI antibodies are <30. Normal is <60. I don't have any

> thyroglobin or peroxidase abs either.

>

> I still have Graves' even though it's not active.

>

> Take care,

>

>

>

>

>

> > I have been trying for months to determine if my thyroid is being

> > supported enough with hormone. I tried to talk to the doctor

> > conserning antibodies. Did not get far. He did test two of the

> > antibodies, but I do not think these are the ones others have

> > suggested. It appears to me that I am low TSH, but the T3 AND T4

> > could move upward some. The only comment the doctor made, was you

> > will always have these super high antibodies because you have Graves

> > disease.

> > Please comment about these results:

> >

> > Free T3 2.80 2.30-4.20

> > Free T4 .99 .70-1.90

> > TSH .46 0.3-5.7

> >

> > THYROGLOBULIN AB 2717.0 <41

> > THYROGLOBULIN PEROXIDASE AB TPO 904.0 <35

> >

> > I have been very ill four over three years. I have other issues,

> > adrenal,metals, etc. It is very important that I try to correct each

> > malfunction the best I can.

> >

> > Thanks for any comments,

> > Frannie

[Guest guest]

,

I haven't seen a <60 as normal for TSI before, the ones I have seen are <100

or <130. Isn't it interesting how widely they can vary!

Jody

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