Re: Questions from new group member

[Guest guest]

Hi,

I'm new to the group. Jody found me and told me about

this support system that might help me find out more

about hasi & gd. What book are you refering too? I

am pretty much in the dark at the moment and haven't

really been able to find much info about having both

Graves and Hasi's together. Anything anyone can tell

me would be greatly appreciated. Here is a little

back ground.

I got diaganist with Graves back in Aug but have

Thyroid problems off and on for many a year but always

borderline and wasn't that educated about it back then

so didn't really look into it much always knew it went

away. I have 4 beautiful girls now but inbetween had

three miscarriages (never even associated it with

Thyroid Disease). In Aug started having some other

problems and my Dr found an elevated heart rate. Went

back a week later with something else wrong same

elevated heart rate so because of my history ran

Thryoid blood work and tada Graves..lol. Been a

rollercoaster ride from there. I went to the endo end

of Aug and was put on Inderal80mg 2times a day even on

that standing heart rate of 110. Had my scan

confirmed graves and was put on Tapazole well

immediately that affected my liver (was getting blood

test weekly because my feet were swelling

uncontrollably but no one could explain it because it

was a hypo symptom and not hyper so water pills and

blood test (oh yeah...lol) I was then put on PTU 3

times a day and that didn't do much. Dr said that my

Thyroid was huge and that pretty much my only option

was going to be surgery. They uped the PTU to 4 times

a day and we scheduled surgry for mid Nov which should

have been enough time to bring my levels down. No

such luck ended up on Inderal 3 times a day also to

control my heart rate. Finally the beginning of Dec

we were able to get my levels down and the surgery

scheduled. Had the surgry and my surgeon was not

prepared for all the scar tissue and the size of my

Thyroid I was in surgery for 4 1/2 hours which from

what I understand is very unusual. The pathology came

back that I had both Hashi & graves which no one knew

til that point and that I had probably had it for

years. i asked my endo about it and mostly I get that

because my Thryoid is gone that it isn;t anything to

worry about, but i have some concerns and would like

some answers. Fisrt being what kind of effects does

having both pose to the body? Are there any lasting

effects even after Thryoid removal? What other

problems will I most likely encounter down the road

because of the beating my body had taken dealing with

these two diseases for so long undetected? Pretty

much any insight anyone can give me would be greatly

apprecieted at this time. Sorry this was soo long but

felt I should give the history. Funny how I can look

back now and see symptoms long before I was diagnost.

Thanks,

Darnell

--- daisyelaine@... wrote:

> Hi Miriam,

> Welcome to the group. As your learned from my book,

> Hashimoto's thyroiditis

> often precedes GD by a number of years. And as

> thyroid cells die you can

> experience symptoms of hyperthyroidism. Some docs

> formally call this

> Hashitoxicosis, and it generally happens in the

> early years of

> hypothyroidism. It's generally acknowledged now that

> autoimmune thyroid

> disorders frequently change forms, and this depends

> on what thyroid

> antibodies are predominant at the time.

>

> I'm wondering if you might benefit from an allergy

> specialist or immunologist

> more than an endocrinologist. After having a few

> bouts of exercise-induced

> anaphylaxis, I finally went to an immunologist and

> got a firmer grasp of all

> my allergies. Soy is a particularly common allergy

> in people with gluten

> sensitivity, and gluten sensitivity is often seen in

> those of us with

> autoimmune thyroid disease. Soy is really hard to

> eliminate, but when I do,

> my chemical sensitivities aren't as bad. All of

> these allergies tend to

> exacerbate one another.

>

> You might want to check the doctor list on

> Shomon's about.com thyroid

> site or the list at webMD. I've had friends that

> went to the Univ. of Chicago

> and didn't fare so well although some of the top

> endos are there. Most

> specialists only focus on their specialty. If your

> thyroid levels are in

> line, a new endo may just decide that you're fine on

> PTU and ignore your

> other symptoms. That's why I think I'd seek out an

> allergist, immunologist or

> someone with a specialty in environmental sciences

> to help you figure out

> your underlying immune system problems. You might

> also post your question at

> ben stoll's bulletin board, www.bcn.net/~stoll/

> Some of the people there

> have more experience with environmental problems.

> Keep us posted, and good

> luck to you, Elaine

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi,

I'm new to the group. Jody found me and told me about

this support system that might help me find out more

about hasi & gd. What book are you refering too? I

am pretty much in the dark at the moment and haven't

really been able to find much info about having both

Graves and Hasi's together. Anything anyone can tell

me would be greatly appreciated. Here is a little

back ground.

I got diaganist with Graves back in Aug but have

Thyroid problems off and on for many a year but always

borderline and wasn't that educated about it back then

so didn't really look into it much always knew it went

away. I have 4 beautiful girls now but inbetween had

three miscarriages (never even associated it with

Thyroid Disease). In Aug started having some other

problems and my Dr found an elevated heart rate. Went

back a week later with something else wrong same

elevated heart rate so because of my history ran

Thryoid blood work and tada Graves..lol. Been a

rollercoaster ride from there. I went to the endo end

of Aug and was put on Inderal80mg 2times a day even on

that standing heart rate of 110. Had my scan

confirmed graves and was put on Tapazole well

immediately that affected my liver (was getting blood

test weekly because my feet were swelling

uncontrollably but no one could explain it because it

was a hypo symptom and not hyper so water pills and

blood test (oh yeah...lol) I was then put on PTU 3

times a day and that didn't do much. Dr said that my

Thyroid was huge and that pretty much my only option

was going to be surgery. They uped the PTU to 4 times

a day and we scheduled surgry for mid Nov which should

have been enough time to bring my levels down. No

such luck ended up on Inderal 3 times a day also to

control my heart rate. Finally the beginning of Dec

we were able to get my levels down and the surgery

scheduled. Had the surgry and my surgeon was not

prepared for all the scar tissue and the size of my

Thyroid I was in surgery for 4 1/2 hours which from

what I understand is very unusual. The pathology came

back that I had both Hashi & graves which no one knew

til that point and that I had probably had it for

years. i asked my endo about it and mostly I get that

because my Thryoid is gone that it isn;t anything to

worry about, but i have some concerns and would like

some answers. Fisrt being what kind of effects does

having both pose to the body? Are there any lasting

effects even after Thryoid removal? What other

problems will I most likely encounter down the road

because of the beating my body had taken dealing with

these two diseases for so long undetected? Pretty

much any insight anyone can give me would be greatly

apprecieted at this time. Sorry this was soo long but

felt I should give the history. Funny how I can look

back now and see symptoms long before I was diagnost.

Thanks,

Darnell

--- daisyelaine@... wrote:

> Hi Miriam,

> Welcome to the group. As your learned from my book,

> Hashimoto's thyroiditis

> often precedes GD by a number of years. And as

> thyroid cells die you can

> experience symptoms of hyperthyroidism. Some docs

> formally call this

> Hashitoxicosis, and it generally happens in the

> early years of

> hypothyroidism. It's generally acknowledged now that

> autoimmune thyroid

> disorders frequently change forms, and this depends

> on what thyroid

> antibodies are predominant at the time.

>

> I'm wondering if you might benefit from an allergy

> specialist or immunologist

> more than an endocrinologist. After having a few

> bouts of exercise-induced

> anaphylaxis, I finally went to an immunologist and

> got a firmer grasp of all

> my allergies. Soy is a particularly common allergy

> in people with gluten

> sensitivity, and gluten sensitivity is often seen in

> those of us with

> autoimmune thyroid disease. Soy is really hard to

> eliminate, but when I do,

> my chemical sensitivities aren't as bad. All of

> these allergies tend to

> exacerbate one another.

>

> You might want to check the doctor list on

> Shomon's about.com thyroid

> site or the list at webMD. I've had friends that

> went to the Univ. of Chicago

> and didn't fare so well although some of the top

> endos are there. Most

> specialists only focus on their specialty. If your

> thyroid levels are in

> line, a new endo may just decide that you're fine on

> PTU and ignore your

> other symptoms. That's why I think I'd seek out an

> allergist, immunologist or

> someone with a specialty in environmental sciences

> to help you figure out

> your underlying immune system problems. You might

> also post your question at

> ben stoll's bulletin board, www.bcn.net/~stoll/

> Some of the people there

> have more experience with environmental problems.

> Keep us posted, and good

> luck to you, Elaine

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Jody,

Head and Neck? I certainly didn't think about that! I'll start checking

there! Thanks.

Holly

RE: Questions from new group member

Holly,

My doctor is specializes in endocrinology, in the Head and Neck center and I

know of an excellent thyroid surgeon who is also Head and Neck so you may

want to look for endos in this area...it keeps them out of the diabetes

area. My first endo was with a group who cared more for their diabetes

patients because they understood that AI.

Hope this helps,

Jody

_________________________________________________________________

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

<http://messenger.msn.com>

[Guest guest]

Jody,

Head and Neck? I certainly didn't think about that! I'll start checking

there! Thanks.

Holly

RE: Questions from new group member

Holly,

My doctor is specializes in endocrinology, in the Head and Neck center and I

know of an excellent thyroid surgeon who is also Head and Neck so you may

want to look for endos in this area...it keeps them out of the diabetes

area. My first endo was with a group who cared more for their diabetes

patients because they understood that AI.

Hope this helps,

Jody

_________________________________________________________________

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

<http://messenger.msn.com>

[Guest guest]

Jody,

Head and Neck? I certainly didn't think about that! I'll start checking

there! Thanks.

Holly

RE: Questions from new group member

Holly,

My doctor is specializes in endocrinology, in the Head and Neck center and I

know of an excellent thyroid surgeon who is also Head and Neck so you may

want to look for endos in this area...it keeps them out of the diabetes

area. My first endo was with a group who cared more for their diabetes

patients because they understood that AI.

Hope this helps,

Jody

_________________________________________________________________

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

<http://messenger.msn.com>

[Guest guest]

Hi Darnell,

Glad to see you made it! The book many of us are talking about is Graves

Disease; A Practical Guide by Elaine , which is excellent, whether you

have Graves and Hashi's or graves alone. Since you have had your thyroid

removed you will likely become hypo, which is what many of us

are...especially those of us that have gone through RAI.

Watch closely those hypo symptoms from the list I sent you and call and

request labs at the first signs of them.

The book will give you a huge step up in learning about antibodies, lab

tests, symptoms, the eye disease...things to be watching for, talking with

your doctor. It explains everything in a much easier to understand way than

what our doctors ever do. You can get it from amazon.com and

barnesandnoble.com...I recommend barnes and noble as it is 20% discounted

and if you order 2 items from them, free shipping. So if you want another

good book, The Thryoid Solution by Dr. Ridha Arem is another great book.

B from here also has both hashi's and gd, and now Miriam who just

joined. I am sure will be popping in soon for both of you.

Talk to you soon,

Jody

_________________________________________________________________

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

[Guest guest]

Hi Darnell,

Glad to see you made it! The book many of us are talking about is Graves

Disease; A Practical Guide by Elaine , which is excellent, whether you

have Graves and Hashi's or graves alone. Since you have had your thyroid

removed you will likely become hypo, which is what many of us

are...especially those of us that have gone through RAI.

Watch closely those hypo symptoms from the list I sent you and call and

request labs at the first signs of them.

The book will give you a huge step up in learning about antibodies, lab

tests, symptoms, the eye disease...things to be watching for, talking with

your doctor. It explains everything in a much easier to understand way than

what our doctors ever do. You can get it from amazon.com and

barnesandnoble.com...I recommend barnes and noble as it is 20% discounted

and if you order 2 items from them, free shipping. So if you want another

good book, The Thryoid Solution by Dr. Ridha Arem is another great book.

B from here also has both hashi's and gd, and now Miriam who just

joined. I am sure will be popping in soon for both of you.

Talk to you soon,

Jody

_________________________________________________________________

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

[Guest guest]

Hi Darnell,

Glad to see you made it! The book many of us are talking about is Graves

Disease; A Practical Guide by Elaine , which is excellent, whether you

have Graves and Hashi's or graves alone. Since you have had your thyroid

removed you will likely become hypo, which is what many of us

are...especially those of us that have gone through RAI.

Watch closely those hypo symptoms from the list I sent you and call and

request labs at the first signs of them.

The book will give you a huge step up in learning about antibodies, lab

tests, symptoms, the eye disease...things to be watching for, talking with

your doctor. It explains everything in a much easier to understand way than

what our doctors ever do. You can get it from amazon.com and

barnesandnoble.com...I recommend barnes and noble as it is 20% discounted

and if you order 2 items from them, free shipping. So if you want another

good book, The Thryoid Solution by Dr. Ridha Arem is another great book.

B from here also has both hashi's and gd, and now Miriam who just

joined. I am sure will be popping in soon for both of you.

Talk to you soon,

Jody

_________________________________________________________________

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

[Guest guest]

Darnell -

First, welcome to the group! Glad you found us and hope that you feel a

little better knowing there are people who know just what you're going

through!

>The pathology came

>back that I had both Hashi & graves which no one knew

>til that point and that I had probably had it for

>years. i asked my endo about it and mostly I get that

>because my Thryoid is gone that it isn;t anything to

>worry about, but i have some concerns and would like

>some answers. Fisrt being what kind of effects does

>having both pose to the body? Are there any lasting

>effects even after Thryoid removal? What other

>problems will I most likely encounter down the road

>because of the beating my body had taken dealing with

>these two diseases for so long undetected?

Sigh, the fact that your Dr. says that there isn't anything to worry about

now that your thyroid has been removed proves that he obviously doesn't

" specialize " in GD! I don't know specifically about having GD and Hashi's

together, but at least with GD, you can still have a risk of developing TED

even though the thyroid has been removed. This is because the TED is caused

by the same antibodies that were attacking your thyroid. Having a

thyroidectomy does lower the antibody levels, but it still possible to

develop the eye disease even years later. Another condition is myxedema,

which usually manifests as a thickening of the skin on your shins and a rash

like appearance. This is more rare, I don't know if I've heard of anyone

here on this board say they've had it. It can occur other places on the

body, but that is even more unusual. But it is also caused by the same

antibodies, and so can occur at any time. Myxedema is also associated with

Hashi's. Did you have a total thyroidectomy? I am assuming so since the

operation took such a long time. But if you only had a sub-total

thyroidectomy, it is possible to re-develop GD in the remaining tissue if

the antibodies attack it again. Doesn't always happen, but it can. Just

something to be aware of if it applies. Since you have GD and Hashi's, you

can also be at risk for developing other autoimmune diseases, such as

Addis's disease, diabetes, vilitigo, etc. So it's just something to be aware

of if you notice other health problems. As for having both diseases

undetected for so long, and your heart rate troubles, I would keep an eye on

your heart just to make sure that you don't develop any problems there and

to make sure no permanent damage was done.

For the most part, the worst is over for you having had the thyroidectomy.

The main thing to be concerned about is finding the right level of

replacement thyroid hormone so you don't slip into hypO. If there's one

thing I've learned from the people here it's that you shouldn't be afraid to

see your doc if _you_ don't think _you_ are feeling right. The right level

seems to be different for everyone and don't let your doc tell you that you

lab values are normal, so there's no reason you should be feeling bad.

Mostly the TED, myxedema and such are just things to keep in mind to notice

if they start happening to you.

Once again, glad you've joined us!

Re: Questions from new group member

>Hi,

>

>I'm new to the group. Jody found me and told me about

>this support system that might help me find out more

>about hasi & gd. What book are you refering too? I

>am pretty much in the dark at the moment and haven't

>really been able to find much info about having both

>Graves and Hasi's together. Anything anyone can tell

>me would be greatly appreciated. Here is a little

>back ground.

>

>I got diaganist with Graves back in Aug but have

>Thyroid problems off and on for many a year but always

>borderline and wasn't that educated about it back then

>so didn't really look into it much always knew it went

>away. I have 4 beautiful girls now but inbetween had

>three miscarriages (never even associated it with

>Thyroid Disease). In Aug started having some other

>problems and my Dr found an elevated heart rate. Went

>back a week later with something else wrong same

>elevated heart rate so because of my history ran

>Thryoid blood work and tada Graves..lol. Been a

>rollercoaster ride from there. I went to the endo end

>of Aug and was put on Inderal80mg 2times a day even on

>that standing heart rate of 110. Had my scan

>confirmed graves and was put on Tapazole well

>immediately that affected my liver (was getting blood

>test weekly because my feet were swelling

>uncontrollably but no one could explain it because it

>was a hypo symptom and not hyper so water pills and

>blood test (oh yeah...lol) I was then put on PTU 3

>times a day and that didn't do much. Dr said that my

>Thyroid was huge and that pretty much my only option

>was going to be surgery. They uped the PTU to 4 times

>a day and we scheduled surgry for mid Nov which should

>have been enough time to bring my levels down. No

>such luck ended up on Inderal 3 times a day also to

>control my heart rate. Finally the beginning of Dec

>we were able to get my levels down and the surgery

>scheduled. Had the surgry and my surgeon was not

>prepared for all the scar tissue and the size of my

>Thyroid I was in surgery for 4 1/2 hours which from

>what I understand is very unusual. The pathology came

>back that I had both Hashi & graves which no one knew

>til that point and that I had probably had it for

>years. i asked my endo about it and mostly I get that

>because my Thryoid is gone that it isn;t anything to

>worry about, but i have some concerns and would like

>some answers. Fisrt being what kind of effects does

>having both pose to the body? Are there any lasting

>effects even after Thryoid removal? What other

>problems will I most likely encounter down the road

>because of the beating my body had taken dealing with

>these two diseases for so long undetected? Pretty

>much any insight anyone can give me would be greatly

>apprecieted at this time. Sorry this was soo long but

>felt I should give the history. Funny how I can look

>back now and see symptoms long before I was diagnost.

>

>Thanks,

>

>Darnell

>--- daisyelaine@... wrote:

>> Hi Miriam,

>> Welcome to the group. As your learned from my book,

>> Hashimoto's thyroiditis

>> often precedes GD by a number of years. And as

>> thyroid cells die you can

>> experience symptoms of hyperthyroidism. Some docs

>> formally call this

>> Hashitoxicosis, and it generally happens in the

>> early years of

>> hypothyroidism. It's generally acknowledged now that

>> autoimmune thyroid

>> disorders frequently change forms, and this depends

>> on what thyroid

>> antibodies are predominant at the time.

>>

>> I'm wondering if you might benefit from an allergy

>> specialist or immunologist

>> more than an endocrinologist. After having a few

>> bouts of exercise-induced

>> anaphylaxis, I finally went to an immunologist and

>> got a firmer grasp of all

>> my allergies. Soy is a particularly common allergy

>> in people with gluten

>> sensitivity, and gluten sensitivity is often seen in

>> those of us with

>> autoimmune thyroid disease. Soy is really hard to

>> eliminate, but when I do,

>> my chemical sensitivities aren't as bad. All of

>> these allergies tend to

>> exacerbate one another.

>>

>> You might want to check the doctor list on

>> Shomon's about.com thyroid

>> site or the list at webMD. I've had friends that

>> went to the Univ. of Chicago

>> and didn't fare so well although some of the top

>> endos are there. Most

>> specialists only focus on their specialty. If your

>> thyroid levels are in

>> line, a new endo may just decide that you're fine on

>> PTU and ignore your

>> other symptoms. That's why I think I'd seek out an

>> allergist, immunologist or

>> someone with a specialty in environmental sciences

>> to help you figure out

>> your underlying immune system problems. You might

>> also post your question at

>> ben stoll's bulletin board, www.bcn.net/~stoll/

>> Some of the people there

>> have more experience with environmental problems.

>> Keep us posted, and good

>> luck to you, Elaine

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>

>

>__________________________________________________

>

[Guest guest]

Darnell -

First, welcome to the group! Glad you found us and hope that you feel a

little better knowing there are people who know just what you're going

through!

>The pathology came

>back that I had both Hashi & graves which no one knew

>til that point and that I had probably had it for

>years. i asked my endo about it and mostly I get that

>because my Thryoid is gone that it isn;t anything to

>worry about, but i have some concerns and would like

>some answers. Fisrt being what kind of effects does

>having both pose to the body? Are there any lasting

>effects even after Thryoid removal? What other

>problems will I most likely encounter down the road

>because of the beating my body had taken dealing with

>these two diseases for so long undetected?

Sigh, the fact that your Dr. says that there isn't anything to worry about

now that your thyroid has been removed proves that he obviously doesn't

" specialize " in GD! I don't know specifically about having GD and Hashi's

together, but at least with GD, you can still have a risk of developing TED

even though the thyroid has been removed. This is because the TED is caused

by the same antibodies that were attacking your thyroid. Having a

thyroidectomy does lower the antibody levels, but it still possible to

develop the eye disease even years later. Another condition is myxedema,

which usually manifests as a thickening of the skin on your shins and a rash

like appearance. This is more rare, I don't know if I've heard of anyone

here on this board say they've had it. It can occur other places on the

body, but that is even more unusual. But it is also caused by the same

antibodies, and so can occur at any time. Myxedema is also associated with

Hashi's. Did you have a total thyroidectomy? I am assuming so since the

operation took such a long time. But if you only had a sub-total

thyroidectomy, it is possible to re-develop GD in the remaining tissue if

the antibodies attack it again. Doesn't always happen, but it can. Just

something to be aware of if it applies. Since you have GD and Hashi's, you

can also be at risk for developing other autoimmune diseases, such as

Addis's disease, diabetes, vilitigo, etc. So it's just something to be aware

of if you notice other health problems. As for having both diseases

undetected for so long, and your heart rate troubles, I would keep an eye on

your heart just to make sure that you don't develop any problems there and

to make sure no permanent damage was done.

For the most part, the worst is over for you having had the thyroidectomy.

The main thing to be concerned about is finding the right level of

replacement thyroid hormone so you don't slip into hypO. If there's one

thing I've learned from the people here it's that you shouldn't be afraid to

see your doc if _you_ don't think _you_ are feeling right. The right level

seems to be different for everyone and don't let your doc tell you that you

lab values are normal, so there's no reason you should be feeling bad.

Mostly the TED, myxedema and such are just things to keep in mind to notice

if they start happening to you.

Once again, glad you've joined us!

Re: Questions from new group member

>Hi,

>

>I'm new to the group. Jody found me and told me about

>this support system that might help me find out more

>about hasi & gd. What book are you refering too? I

>am pretty much in the dark at the moment and haven't

>really been able to find much info about having both

>Graves and Hasi's together. Anything anyone can tell

>me would be greatly appreciated. Here is a little

>back ground.

>

>I got diaganist with Graves back in Aug but have

>Thyroid problems off and on for many a year but always

>borderline and wasn't that educated about it back then

>so didn't really look into it much always knew it went

>away. I have 4 beautiful girls now but inbetween had

>three miscarriages (never even associated it with

>Thyroid Disease). In Aug started having some other

>problems and my Dr found an elevated heart rate. Went

>back a week later with something else wrong same

>elevated heart rate so because of my history ran

>Thryoid blood work and tada Graves..lol. Been a

>rollercoaster ride from there. I went to the endo end

>of Aug and was put on Inderal80mg 2times a day even on

>that standing heart rate of 110. Had my scan

>confirmed graves and was put on Tapazole well

>immediately that affected my liver (was getting blood

>test weekly because my feet were swelling

>uncontrollably but no one could explain it because it

>was a hypo symptom and not hyper so water pills and

>blood test (oh yeah...lol) I was then put on PTU 3

>times a day and that didn't do much. Dr said that my

>Thyroid was huge and that pretty much my only option

>was going to be surgery. They uped the PTU to 4 times

>a day and we scheduled surgry for mid Nov which should

>have been enough time to bring my levels down. No

>such luck ended up on Inderal 3 times a day also to

>control my heart rate. Finally the beginning of Dec

>we were able to get my levels down and the surgery

>scheduled. Had the surgry and my surgeon was not

>prepared for all the scar tissue and the size of my

>Thyroid I was in surgery for 4 1/2 hours which from

>what I understand is very unusual. The pathology came

>back that I had both Hashi & graves which no one knew

>til that point and that I had probably had it for

>years. i asked my endo about it and mostly I get that

>because my Thryoid is gone that it isn;t anything to

>worry about, but i have some concerns and would like

>some answers. Fisrt being what kind of effects does

>having both pose to the body? Are there any lasting

>effects even after Thryoid removal? What other

>problems will I most likely encounter down the road

>because of the beating my body had taken dealing with

>these two diseases for so long undetected? Pretty

>much any insight anyone can give me would be greatly

>apprecieted at this time. Sorry this was soo long but

>felt I should give the history. Funny how I can look

>back now and see symptoms long before I was diagnost.

>

>Thanks,

>

>Darnell

>--- daisyelaine@... wrote:

>> Hi Miriam,

>> Welcome to the group. As your learned from my book,

>> Hashimoto's thyroiditis

>> often precedes GD by a number of years. And as

>> thyroid cells die you can

>> experience symptoms of hyperthyroidism. Some docs

>> formally call this

>> Hashitoxicosis, and it generally happens in the

>> early years of

>> hypothyroidism. It's generally acknowledged now that

>> autoimmune thyroid

>> disorders frequently change forms, and this depends

>> on what thyroid

>> antibodies are predominant at the time.

>>

>> I'm wondering if you might benefit from an allergy

>> specialist or immunologist

>> more than an endocrinologist. After having a few

>> bouts of exercise-induced

>> anaphylaxis, I finally went to an immunologist and

>> got a firmer grasp of all

>> my allergies. Soy is a particularly common allergy

>> in people with gluten

>> sensitivity, and gluten sensitivity is often seen in

>> those of us with

>> autoimmune thyroid disease. Soy is really hard to

>> eliminate, but when I do,

>> my chemical sensitivities aren't as bad. All of

>> these allergies tend to

>> exacerbate one another.

>>

>> You might want to check the doctor list on

>> Shomon's about.com thyroid

>> site or the list at webMD. I've had friends that

>> went to the Univ. of Chicago

>> and didn't fare so well although some of the top

>> endos are there. Most

>> specialists only focus on their specialty. If your

>> thyroid levels are in

>> line, a new endo may just decide that you're fine on

>> PTU and ignore your

>> other symptoms. That's why I think I'd seek out an

>> allergist, immunologist or

>> someone with a specialty in environmental sciences

>> to help you figure out

>> your underlying immune system problems. You might

>> also post your question at

>> ben stoll's bulletin board, www.bcn.net/~stoll/

>> Some of the people there

>> have more experience with environmental problems.

>> Keep us posted, and good

>> luck to you, Elaine

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>

>

>__________________________________________________

>

[Guest guest]

Darnell -

First, welcome to the group! Glad you found us and hope that you feel a

little better knowing there are people who know just what you're going

through!

>The pathology came

>back that I had both Hashi & graves which no one knew

>til that point and that I had probably had it for

>years. i asked my endo about it and mostly I get that

>because my Thryoid is gone that it isn;t anything to

>worry about, but i have some concerns and would like

>some answers. Fisrt being what kind of effects does

>having both pose to the body? Are there any lasting

>effects even after Thryoid removal? What other

>problems will I most likely encounter down the road

>because of the beating my body had taken dealing with

>these two diseases for so long undetected?

Sigh, the fact that your Dr. says that there isn't anything to worry about

now that your thyroid has been removed proves that he obviously doesn't

" specialize " in GD! I don't know specifically about having GD and Hashi's

together, but at least with GD, you can still have a risk of developing TED

even though the thyroid has been removed. This is because the TED is caused

by the same antibodies that were attacking your thyroid. Having a

thyroidectomy does lower the antibody levels, but it still possible to

develop the eye disease even years later. Another condition is myxedema,

which usually manifests as a thickening of the skin on your shins and a rash

like appearance. This is more rare, I don't know if I've heard of anyone

here on this board say they've had it. It can occur other places on the

body, but that is even more unusual. But it is also caused by the same

antibodies, and so can occur at any time. Myxedema is also associated with

Hashi's. Did you have a total thyroidectomy? I am assuming so since the

operation took such a long time. But if you only had a sub-total

thyroidectomy, it is possible to re-develop GD in the remaining tissue if

the antibodies attack it again. Doesn't always happen, but it can. Just

something to be aware of if it applies. Since you have GD and Hashi's, you

can also be at risk for developing other autoimmune diseases, such as

Addis's disease, diabetes, vilitigo, etc. So it's just something to be aware

of if you notice other health problems. As for having both diseases

undetected for so long, and your heart rate troubles, I would keep an eye on

your heart just to make sure that you don't develop any problems there and

to make sure no permanent damage was done.

For the most part, the worst is over for you having had the thyroidectomy.

The main thing to be concerned about is finding the right level of

replacement thyroid hormone so you don't slip into hypO. If there's one

thing I've learned from the people here it's that you shouldn't be afraid to

see your doc if _you_ don't think _you_ are feeling right. The right level

seems to be different for everyone and don't let your doc tell you that you

lab values are normal, so there's no reason you should be feeling bad.

Mostly the TED, myxedema and such are just things to keep in mind to notice

if they start happening to you.

Once again, glad you've joined us!

Re: Questions from new group member

>Hi,

>

>I'm new to the group. Jody found me and told me about

>this support system that might help me find out more

>about hasi & gd. What book are you refering too? I

>am pretty much in the dark at the moment and haven't

>really been able to find much info about having both

>Graves and Hasi's together. Anything anyone can tell

>me would be greatly appreciated. Here is a little

>back ground.

>

>I got diaganist with Graves back in Aug but have

>Thyroid problems off and on for many a year but always

>borderline and wasn't that educated about it back then

>so didn't really look into it much always knew it went

>away. I have 4 beautiful girls now but inbetween had

>three miscarriages (never even associated it with

>Thyroid Disease). In Aug started having some other

>problems and my Dr found an elevated heart rate. Went

>back a week later with something else wrong same

>elevated heart rate so because of my history ran

>Thryoid blood work and tada Graves..lol. Been a

>rollercoaster ride from there. I went to the endo end

>of Aug and was put on Inderal80mg 2times a day even on

>that standing heart rate of 110. Had my scan

>confirmed graves and was put on Tapazole well

>immediately that affected my liver (was getting blood

>test weekly because my feet were swelling

>uncontrollably but no one could explain it because it

>was a hypo symptom and not hyper so water pills and

>blood test (oh yeah...lol) I was then put on PTU 3

>times a day and that didn't do much. Dr said that my

>Thyroid was huge and that pretty much my only option

>was going to be surgery. They uped the PTU to 4 times

>a day and we scheduled surgry for mid Nov which should

>have been enough time to bring my levels down. No

>such luck ended up on Inderal 3 times a day also to

>control my heart rate. Finally the beginning of Dec

>we were able to get my levels down and the surgery

>scheduled. Had the surgry and my surgeon was not

>prepared for all the scar tissue and the size of my

>Thyroid I was in surgery for 4 1/2 hours which from

>what I understand is very unusual. The pathology came

>back that I had both Hashi & graves which no one knew

>til that point and that I had probably had it for

>years. i asked my endo about it and mostly I get that

>because my Thryoid is gone that it isn;t anything to

>worry about, but i have some concerns and would like

>some answers. Fisrt being what kind of effects does

>having both pose to the body? Are there any lasting

>effects even after Thryoid removal? What other

>problems will I most likely encounter down the road

>because of the beating my body had taken dealing with

>these two diseases for so long undetected? Pretty

>much any insight anyone can give me would be greatly

>apprecieted at this time. Sorry this was soo long but

>felt I should give the history. Funny how I can look

>back now and see symptoms long before I was diagnost.

>

>Thanks,

>

>Darnell

>--- daisyelaine@... wrote:

>> Hi Miriam,

>> Welcome to the group. As your learned from my book,

>> Hashimoto's thyroiditis

>> often precedes GD by a number of years. And as

>> thyroid cells die you can

>> experience symptoms of hyperthyroidism. Some docs

>> formally call this

>> Hashitoxicosis, and it generally happens in the

>> early years of

>> hypothyroidism. It's generally acknowledged now that

>> autoimmune thyroid

>> disorders frequently change forms, and this depends

>> on what thyroid

>> antibodies are predominant at the time.

>>

>> I'm wondering if you might benefit from an allergy

>> specialist or immunologist

>> more than an endocrinologist. After having a few

>> bouts of exercise-induced

>> anaphylaxis, I finally went to an immunologist and

>> got a firmer grasp of all

>> my allergies. Soy is a particularly common allergy

>> in people with gluten

>> sensitivity, and gluten sensitivity is often seen in

>> those of us with

>> autoimmune thyroid disease. Soy is really hard to

>> eliminate, but when I do,

>> my chemical sensitivities aren't as bad. All of

>> these allergies tend to

>> exacerbate one another.

>>

>> You might want to check the doctor list on

>> Shomon's about.com thyroid

>> site or the list at webMD. I've had friends that

>> went to the Univ. of Chicago

>> and didn't fare so well although some of the top

>> endos are there. Most

>> specialists only focus on their specialty. If your

>> thyroid levels are in

>> line, a new endo may just decide that you're fine on

>> PTU and ignore your

>> other symptoms. That's why I think I'd seek out an

>> allergist, immunologist or

>> someone with a specialty in environmental sciences

>> to help you figure out

>> your underlying immune system problems. You might

>> also post your question at

>> ben stoll's bulletin board, www.bcn.net/~stoll/

>> Some of the people there

>> have more experience with environmental problems.

>> Keep us posted, and good

>> luck to you, Elaine

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>

>

>__________________________________________________

>

[Guest guest]

Great post !

I was just here. What exciting Friday nights I have now days. :-)

Welcome Darnell,

Hope you like it here.

As I was undiagnosed for a very long time, personally my biggest fear is what

the

accelerated bone loss during that time, has done to me. The non scientific way

I

understand it is, that calcium is leached out of your bones faster than your

body can make

new, while you are hyper due to the Graves, or too much replacement hormone.

But then if I am too hypo, due to my anti thyroid drugs, or in your case not

enough

replacement hormone, then my personal main concern is cholesterol getting too

high. Of

coarse since we are here now, and will be educated and willing to be equal

partners in our

health with our doctors, we will be keeping our thyroid levels where they should

be, and

future damage should not be a problem.

-Pam-

[Guest guest]

Good points, Pam! I knew I was forgetting something important! LOL, I know

what you mean about exciting Friday nights! With 3 kids living in Iowa,

surfing the 'net is about as exciting as it gets on Friday!

Re: Questions from new group member

>Great post !

> I was just here. What exciting Friday nights I have now days. :-)

>

>Welcome Darnell,

> Hope you like it here.

> As I was undiagnosed for a very long time, personally my biggest fear is

what the

>accelerated bone loss during that time, has done to me. The non scientific

way I

>understand it is, that calcium is leached out of your bones faster than

your body can make

>new, while you are hyper due to the Graves, or too much replacement

hormone.

>

> But then if I am too hypo, due to my anti thyroid drugs, or in your case

not enough

>replacement hormone, then my personal main concern is cholesterol getting

too high. Of

>coarse since we are here now, and will be educated and willing to be equal

partners in our

>health with our doctors, we will be keeping our thyroid levels where they

should be, and

>future damage should not be a problem.

>

>-Pam-

>

>

>

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

>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]

Good points, Pam! I knew I was forgetting something important! LOL, I know

what you mean about exciting Friday nights! With 3 kids living in Iowa,

surfing the 'net is about as exciting as it gets on Friday!

Re: Questions from new group member

>Great post !

> I was just here. What exciting Friday nights I have now days. :-)

>

>Welcome Darnell,

> Hope you like it here.

> As I was undiagnosed for a very long time, personally my biggest fear is

what the

>accelerated bone loss during that time, has done to me. The non scientific

way I

>understand it is, that calcium is leached out of your bones faster than

your body can make

>new, while you are hyper due to the Graves, or too much replacement

hormone.

>

> But then if I am too hypo, due to my anti thyroid drugs, or in your case

not enough

>replacement hormone, then my personal main concern is cholesterol getting

too high. Of

>coarse since we are here now, and will be educated and willing to be equal

partners in our

>health with our doctors, we will be keeping our thyroid levels where they

should be, and

>future damage should not be a problem.

>

>-Pam-

>

>

>

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

>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]

Good points, Pam! I knew I was forgetting something important! LOL, I know

what you mean about exciting Friday nights! With 3 kids living in Iowa,

surfing the 'net is about as exciting as it gets on Friday!

Re: Questions from new group member

>Great post !

> I was just here. What exciting Friday nights I have now days. :-)

>

>Welcome Darnell,

> Hope you like it here.

> As I was undiagnosed for a very long time, personally my biggest fear is

what the

>accelerated bone loss during that time, has done to me. The non scientific

way I

>understand it is, that calcium is leached out of your bones faster than

your body can make

>new, while you are hyper due to the Graves, or too much replacement

hormone.

>

> But then if I am too hypo, due to my anti thyroid drugs, or in your case

not enough

>replacement hormone, then my personal main concern is cholesterol getting

too high. Of

>coarse since we are here now, and will be educated and willing to be equal

partners in our

>health with our doctors, we will be keeping our thyroid levels where they

should be, and

>future damage should not be a problem.

>

>-Pam-

>

>

>

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

>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! I did have a total Thyroidectomy. Surgeon

and Dr both agreed with all the problems with meds and

even getting my thyroid under control that they did

not want to chance leaving any of my thyroid. I have

already seen an eye dr and gotten a base line exam

(something I had to insist on and will change eye dr's

since that didn't seem a concern.) I was having

extreme dry eye and have gotten the plugs also but

since then things have been better. My eyes were

starting to change but since my levels are more under

control they seem to be back to normal but definetely

something to watch out for. I am 50 mcg of Levoxyl

now and go see the dr wed to check my levels again. I

think I dropped faster than they expected. My TSH

levels before surgery were at .0024 (surgery was Dec

17th). After surgery and in the hospt not sure where

the levels where/ My levels when he drew blood on

Jan 2nd where 8.99. I hope leveling out is easier

than I have heard not sure I'm ready to fight it out

sooo soon again to get where I need to be. My endo

isn't tooo bad he has watched me very closely pretty

much with weekly appointments and one scare to the

emergency room so that has at least been good. He was

also the one that refered me to the eye dr. At least

I have that much and have seen some of the horror

stories....Thanks again...

Darnell

--- " L. Buck " wrote:

> Darnell -

>

> First, welcome to the group! Glad you found us and

> hope that you feel a

> little better knowing there are people who know just

> what you're going

> through!

>

> >The pathology came

> >back that I had both Hashi & graves which no one

> knew

> >til that point and that I had probably had it for

> >years. i asked my endo about it and mostly I get

> that

> >because my Thryoid is gone that it isn;t anything

> to

> >worry about, but i have some concerns and would

> like

> >some answers. Fisrt being what kind of effects

> does

> >having both pose to the body? Are there any

> lasting

> >effects even after Thryoid removal? What other

> >problems will I most likely encounter down the road

> >because of the beating my body had taken dealing

> with

> >these two diseases for so long undetected?

>

> Sigh, the fact that your Dr. says that there isn't

> anything to worry about

> now that your thyroid has been removed proves that

> he obviously doesn't

> " specialize " in GD! I don't know specifically about

> having GD and Hashi's

> together, but at least with GD, you can still have a

> risk of developing TED

> even though the thyroid has been removed. This is

> because the TED is caused

> by the same antibodies that were attacking your

> thyroid. Having a

> thyroidectomy does lower the antibody levels, but it

> still possible to

> develop the eye disease even years later. Another

> condition is myxedema,

> which usually manifests as a thickening of the skin

> on your shins and a rash

> like appearance. This is more rare, I don't know if

> I've heard of anyone

> here on this board say they've had it. It can occur

> other places on the

> body, but that is even more unusual. But it is also

> caused by the same

> antibodies, and so can occur at any time. Myxedema

> is also associated with

> Hashi's. Did you have a total thyroidectomy? I am

> assuming so since the

> operation took such a long time. But if you only had

> a sub-total

> thyroidectomy, it is possible to re-develop GD in

> the remaining tissue if

> the antibodies attack it again. Doesn't always

> happen, but it can. Just

> something to be aware of if it applies. Since you

> have GD and Hashi's, you

> can also be at risk for developing other autoimmune

> diseases, such as

> Addis's disease, diabetes, vilitigo, etc. So it's

> just something to be aware

> of if you notice other health problems. As for

> having both diseases

> undetected for so long, and your heart rate

> troubles, I would keep an eye on

> your heart just to make sure that you don't develop

> any problems there and

> to make sure no permanent damage was done.

>

> For the most part, the worst is over for you having

> had the thyroidectomy.

> The main thing to be concerned about is finding the

> right level of

> replacement thyroid hormone so you don't slip into

> hypO. If there's one

> thing I've learned from the people here it's that

> you shouldn't be afraid to

> see your doc if _you_ don't think _you_ are feeling

> right. The right level

> seems to be different for everyone and don't let

> your doc tell you that you

> lab values are normal, so there's no reason you

> should be feeling bad.

> Mostly the TED, myxedema and such are just things to

> keep in mind to notice

> if they start happening to you.

>

> Once again, glad you've joined us!

>

>

>

> Re: Questions from new

> group member

>

>

> >Hi,

> >

> >I'm new to the group. Jody found me and told me

> about

> >this support system that might help me find out

> more

> >about hasi & gd. What book are you refering too?

> I

> >am pretty much in the dark at the moment and

> haven't

> >really been able to find much info about having

> both

> >Graves and Hasi's together. Anything anyone can

> tell

> >me would be greatly appreciated. Here is a little

> >back ground.

> >

> >I got diaganist with Graves back in Aug but have

> >Thyroid problems off and on for many a year but

> always

> >borderline and wasn't that educated about it back

> then

> >so didn't really look into it much always knew it

> went

> >away. I have 4 beautiful girls now but inbetween

> had

> >three miscarriages (never even associated it with

> >Thyroid Disease). In Aug started having some other

> >problems and my Dr found an elevated heart rate.

> Went

> >back a week later with something else wrong same

> >elevated heart rate so because of my history ran

> >Thryoid blood work and tada Graves..lol. Been a

> >rollercoaster ride from there. I went to the endo

> end

> >of Aug and was put on Inderal80mg 2times a day even

> on

> >that standing heart rate of 110. Had my scan

> >confirmed graves and was put on Tapazole well

> >immediately that affected my liver (was getting

> blood

> >test weekly because my feet were swelling

> >uncontrollably but no one could explain it because

> it

> >was a hypo symptom and not hyper so water pills and

> >blood test (oh yeah...lol) I was then put on PTU 3

> >times a day and that didn't do much. Dr said that

> my

> >Thyroid was huge and that pretty much my only

> option

> >was going to be surgery. They uped the PTU to 4

> times

> >a day and we scheduled surgry for mid Nov which

> should

> >have been enough time to bring my levels down. No

> >such luck ended up on Inderal 3 times a day also to

> >control my heart rate. Finally the beginning of

> Dec

> >we were able to get my levels down and the surgery

> >scheduled. Had the surgry and my surgeon was not

> >prepared for all the scar tissue and the size of my

> >Thyroid I was in surgery for 4 1/2 hours which from

> >what I understand is very unusual. The pathology

> came

> >back that I had both Hashi & graves which no one

> knew

> >til that point and that I had probably had it for

> >years. i asked my endo about it and mostly I get

> that

> >because my Thryoid is gone that it isn;t anything

> to

> >worry about, but i have some concerns and would

> like

> >some answers. Fisrt being what kind of effects

> does

> >having both pose to the body? Are there any

> lasting

> >effects even after Thryoid removal? What other

> >problems will I most likely encounter down the road

> >because of the beating my body had taken dealing

> with

> >these two diseases for so long undetected? Pretty

> >much any insight anyone can give me would be

> greatly

> >apprecieted at this time. Sorry this was soo long

> but

> >felt I should give the history. Funny how I can

> look

> >back now and see symptoms long before I was

> diagnost.

> >

> >Thanks,

> >

> >Darnell

>

=== message truncated ===

__________________________________________________

[Guest guest]

Thanks for all the great info definatley things to

look out for and keep in mind.

Darnell

--- Pam wrote:

> Great post !

> I was just here. What exciting Friday nights I

> have now days. :-)

>

> Welcome Darnell,

> Hope you like it here.

> As I was undiagnosed for a very long time,

> personally my biggest fear is what the

> accelerated bone loss during that time, has done to

> me. The non scientific way I

> understand it is, that calcium is leached out of

> your bones faster than your body can make

> new, while you are hyper due to the Graves, or too

> much replacement hormone.

>

> But then if I am too hypo, due to my anti thyroid

> drugs, or in your case not enough

> replacement hormone, then my personal main concern

> is cholesterol getting too high. Of

> coarse since we are here now, and will be educated

> and willing to be equal partners in our

> health with our doctors, we will be keeping our

> thyroid levels where they should be, and

> future damage should not be a problem.

>

> -Pam-

>

>

__________________________________________________