Re: New Member, (my story kinda long)

[Guest guest]

Hi Joe,

Welcome to the group!

I too had RAI in '96 and regret it to this day also. I have been dealing

with the eye disease since April of this year. Was told by my first endo

that I had no signs of it and since it didn't show up that first year after

RAI she said I wouldn't get it...liar liar...she is ancient history now too,

along with endo number 2 and my former primary.

I have a wonderful new endo and a great ophtho. In September my ophtho

started pushing eye radiation and steroids...I told him not to even bring up

eye radiation as that was not an option I would ever consider...period! And

before I would try the steroids, which create such havoc with our bodies

overall I wanted to try something that is not considered normal treatment

for the eyes.

Since he had run a TSI antibody test on me and my TSI came back at 199

(which he considered 'not very high'...but had I walked into my endos office

with that number I would have been put on ATD's) I wanted to go on PTU for

my eyes. I had the double vision, the blurred vision, had quit driving

altogether in June, pain in the eyes, the swollen lids, dry eyes, left eye

not closing...all the symptoms...he wasn't thrilled at my idea to try PTU to

lower the TSI antibodies but did concede that people on PTU for hyper

thyroid have their eye symptoms reduce greatly or go away so he agreed, my

endo agreed to monitor me and I started on PTU the end of October...just a

small dose, 25 mg. 3 times a day. My eyes have greatly improved, even my

eye doctor was impressed So I continue.

The reason I though this treatment might work is because the same

autoantibodies that attack our thyroid, also attack our eyes. RAI does NOT

reduce or eliminate the the antibodies, only the ATD's will do that...so

*my* argument with both docs was lets eliminate the antibodies and see what

happens. I no longer have double vision, very seldom the blurred vision,

the pain has gone away, my eyes are now more pliable and not bulging. A

combination of the ATD's, the eye exercises which really do help, I sleep

with a sleep shield to cut down on night dryness...they have all helped to

make things better also.

I will stay on the ATD's until my antibodies are no longer able to register

then wean off of them and hopefully that will put me in remission. Since

Graves is an autoimmune disease, it is not our thyroids that are sick, it is

our immune system and too many doctors are still into 'kill the messenger'

instead of fixing the problem mode. That is unfortunate for newly diagnosed

people who tend to get rushed into RAI, and most doctors know that RAI will

also bring on the eye disease or worsen it if we already have it, but they

do it anyhow without saying a word.

If the treatment is successful for me, I am going to push both my endo and

my ophtho to write a paper on this, hopefully it will help others and

prevent them from having to go the radiation or steroid treatments which are

standard...and maybe prevent the surgery if started early enough.

You may want to get a book called Graves Disease; A Practical Guide by

Elaine (she is also a member of this group) it will give you so much

information about all factors of GD and has been a HUGE asset to my library.

I just bought 2 more of them from barnesandnoble.com as the book is

discounted there by 20% and when you buy 2 items you get free shipping.

I am really really glad that you have come to this group and are sharing

your eye story. The eyes need to be talked about more I think

Take care and I hope you keep posting!

Jody

_________________________________________________________________

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

[Guest guest]

Hi Joe,

Welcome to the group!

I too had RAI in '96 and regret it to this day also. I have been dealing

with the eye disease since April of this year. Was told by my first endo

that I had no signs of it and since it didn't show up that first year after

RAI she said I wouldn't get it...liar liar...she is ancient history now too,

along with endo number 2 and my former primary.

I have a wonderful new endo and a great ophtho. In September my ophtho

started pushing eye radiation and steroids...I told him not to even bring up

eye radiation as that was not an option I would ever consider...period! And

before I would try the steroids, which create such havoc with our bodies

overall I wanted to try something that is not considered normal treatment

for the eyes.

Since he had run a TSI antibody test on me and my TSI came back at 199

(which he considered 'not very high'...but had I walked into my endos office

with that number I would have been put on ATD's) I wanted to go on PTU for

my eyes. I had the double vision, the blurred vision, had quit driving

altogether in June, pain in the eyes, the swollen lids, dry eyes, left eye

not closing...all the symptoms...he wasn't thrilled at my idea to try PTU to

lower the TSI antibodies but did concede that people on PTU for hyper

thyroid have their eye symptoms reduce greatly or go away so he agreed, my

endo agreed to monitor me and I started on PTU the end of October...just a

small dose, 25 mg. 3 times a day. My eyes have greatly improved, even my

eye doctor was impressed So I continue.

The reason I though this treatment might work is because the same

autoantibodies that attack our thyroid, also attack our eyes. RAI does NOT

reduce or eliminate the the antibodies, only the ATD's will do that...so

*my* argument with both docs was lets eliminate the antibodies and see what

happens. I no longer have double vision, very seldom the blurred vision,

the pain has gone away, my eyes are now more pliable and not bulging. A

combination of the ATD's, the eye exercises which really do help, I sleep

with a sleep shield to cut down on night dryness...they have all helped to

make things better also.

I will stay on the ATD's until my antibodies are no longer able to register

then wean off of them and hopefully that will put me in remission. Since

Graves is an autoimmune disease, it is not our thyroids that are sick, it is

our immune system and too many doctors are still into 'kill the messenger'

instead of fixing the problem mode. That is unfortunate for newly diagnosed

people who tend to get rushed into RAI, and most doctors know that RAI will

also bring on the eye disease or worsen it if we already have it, but they

do it anyhow without saying a word.

If the treatment is successful for me, I am going to push both my endo and

my ophtho to write a paper on this, hopefully it will help others and

prevent them from having to go the radiation or steroid treatments which are

standard...and maybe prevent the surgery if started early enough.

You may want to get a book called Graves Disease; A Practical Guide by

Elaine (she is also a member of this group) it will give you so much

information about all factors of GD and has been a HUGE asset to my library.

I just bought 2 more of them from barnesandnoble.com as the book is

discounted there by 20% and when you buy 2 items you get free shipping.

I am really really glad that you have come to this group and are sharing

your eye story. The eyes need to be talked about more I think

Take care and I hope you keep posting!

Jody

_________________________________________________________________

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

[Guest guest]

Hi Joe,

Welcome to the group!

I too had RAI in '96 and regret it to this day also. I have been dealing

with the eye disease since April of this year. Was told by my first endo

that I had no signs of it and since it didn't show up that first year after

RAI she said I wouldn't get it...liar liar...she is ancient history now too,

along with endo number 2 and my former primary.

I have a wonderful new endo and a great ophtho. In September my ophtho

started pushing eye radiation and steroids...I told him not to even bring up

eye radiation as that was not an option I would ever consider...period! And

before I would try the steroids, which create such havoc with our bodies

overall I wanted to try something that is not considered normal treatment

for the eyes.

Since he had run a TSI antibody test on me and my TSI came back at 199

(which he considered 'not very high'...but had I walked into my endos office

with that number I would have been put on ATD's) I wanted to go on PTU for

my eyes. I had the double vision, the blurred vision, had quit driving

altogether in June, pain in the eyes, the swollen lids, dry eyes, left eye

not closing...all the symptoms...he wasn't thrilled at my idea to try PTU to

lower the TSI antibodies but did concede that people on PTU for hyper

thyroid have their eye symptoms reduce greatly or go away so he agreed, my

endo agreed to monitor me and I started on PTU the end of October...just a

small dose, 25 mg. 3 times a day. My eyes have greatly improved, even my

eye doctor was impressed So I continue.

The reason I though this treatment might work is because the same

autoantibodies that attack our thyroid, also attack our eyes. RAI does NOT

reduce or eliminate the the antibodies, only the ATD's will do that...so

*my* argument with both docs was lets eliminate the antibodies and see what

happens. I no longer have double vision, very seldom the blurred vision,

the pain has gone away, my eyes are now more pliable and not bulging. A

combination of the ATD's, the eye exercises which really do help, I sleep

with a sleep shield to cut down on night dryness...they have all helped to

make things better also.

I will stay on the ATD's until my antibodies are no longer able to register

then wean off of them and hopefully that will put me in remission. Since

Graves is an autoimmune disease, it is not our thyroids that are sick, it is

our immune system and too many doctors are still into 'kill the messenger'

instead of fixing the problem mode. That is unfortunate for newly diagnosed

people who tend to get rushed into RAI, and most doctors know that RAI will

also bring on the eye disease or worsen it if we already have it, but they

do it anyhow without saying a word.

If the treatment is successful for me, I am going to push both my endo and

my ophtho to write a paper on this, hopefully it will help others and

prevent them from having to go the radiation or steroid treatments which are

standard...and maybe prevent the surgery if started early enough.

You may want to get a book called Graves Disease; A Practical Guide by

Elaine (she is also a member of this group) it will give you so much

information about all factors of GD and has been a HUGE asset to my library.

I just bought 2 more of them from barnesandnoble.com as the book is

discounted there by 20% and when you buy 2 items you get free shipping.

I am really really glad that you have come to this group and are sharing

your eye story. The eyes need to be talked about more I think

Take care and I hope you keep posting!

Jody

_________________________________________________________________

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

[Guest guest]

Hi Joe,

Welcome to the group, and thanks for sharing your story. Many people will

benefit from it. There are people here who have had orbital compression

surgery and they may have some tips for you too regarding reducing the

swelling, time it takes to heal, etc. Best to you, Elaine

[Guest guest]

Hi Joe,

Welcome to the group, and thanks for sharing your story. Many people will

benefit from it. There are people here who have had orbital compression

surgery and they may have some tips for you too regarding reducing the

swelling, time it takes to heal, etc. Best to you, Elaine

[Guest guest]

Hi Joe,

Welcome to the group, and thanks for sharing your story. Many people will

benefit from it. There are people here who have had orbital compression

surgery and they may have some tips for you too regarding reducing the

swelling, time it takes to heal, etc. Best to you, Elaine

[Guest guest]

Welcome, Joe.

You'll find many people here with thryoid eye disease, and a handful (I

think) who've had decompression surgery. I had a moderately severe case

myself, which required me to tape my eyes shut at night for a few months.

However, the only surgery I did have was one to remove the eye bags after

the ordeal. Thought I'd mention this since you commented on yours. I sent

in before/after pix of graves to my insurance company and my opth sent a

letter supporting the surgery and they paid for it, under the category of

'reconstructive surgery.'

I'm immensely grateful that I did it. The eye bags aged me a decade, I

felt. More than anything, it was a constant, visual reminder of the illness

and it was one aspect of the disease that helped to change my sense of self

so much -- I felt as if the sick eye look made me look like a sick person,

and removing that did a lot to make me feel as if I looked like my old

healthy self again.

Anyway, good luck with your continuing recovery. Keep us posted and ask

questions!

B

New Member, (my story kinda long)

> Hi my name is Joe and I am new to your group. I am not new to graves

> disease though. I was diagnosed with a hyperactive thyroid right

> around 2 years ago. I had been experiencing all the syptoms of a

> Hyperactive thyroid. I had RAI in Februrary of 2000. What a mistake

> that was in my oppinion. It seems my problems snow balled after that.

> In August of 2000 I woke up one morning and I was so swollen in the

> eyes. I thought I had been bitten several times by spiders in my

> sleep. I went to my personal Dr. and he said I had allergies. I asked

> about it being related to my thyroid and he said no, we took care of

> that with RAI. Needless to say I don't go to him anymore. I went to

> an optomologist and he said I had graves. I then went to an Endo and

> she confirmed I had graves with some blood work. She set me up with

> a wonderful optomologist at a University Hospital and I have been

> seeing him since January of 2001. We tried to sit it out awhile but I

> developed the blurred and double visions and when they became worse

> and my optic nerve was getting tight from the swelling I had

> radiation treatments to my eyes to reduce the swelling . It did its

> job and my double vision and blurred vision began to disappear. I

> still had those ugly huge bags under my eyes and the bulging was

> somewhat better but was still there. After several trips back to the

> optomologist to check on my progress we determined that my eyes had

> receded as far as they could. I opted for Orbit decompression sugery

> and just had it done on 12-11-01. It was quite and ordeal but I feel

> it is gonna be worth it. My swelling and bruising has all gone away

> except for my lower eyelids. I'm still trying to get rid of it. My

> eyes look much better since they reset them back where they should

> be. I was very fortunate not to get double vision from this surgery.

> Im not totaly done with this thing yet as I may have some eylid

> surgery down the road but it was the best thing for my self

> confidence and my out look on life to get this done. As painful as it

> was after I came out from the anestesia I would do it again tomorrow

> if I was in the same situation. If any of you have any questions I

> would be more than happy to share any information I may have.

> Joe

>

>

>

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

> 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]

Welcome, Joe.

You'll find many people here with thryoid eye disease, and a handful (I

think) who've had decompression surgery. I had a moderately severe case

myself, which required me to tape my eyes shut at night for a few months.

However, the only surgery I did have was one to remove the eye bags after

the ordeal. Thought I'd mention this since you commented on yours. I sent

in before/after pix of graves to my insurance company and my opth sent a

letter supporting the surgery and they paid for it, under the category of

'reconstructive surgery.'

I'm immensely grateful that I did it. The eye bags aged me a decade, I

felt. More than anything, it was a constant, visual reminder of the illness

and it was one aspect of the disease that helped to change my sense of self

so much -- I felt as if the sick eye look made me look like a sick person,

and removing that did a lot to make me feel as if I looked like my old

healthy self again.

Anyway, good luck with your continuing recovery. Keep us posted and ask

questions!

B

New Member, (my story kinda long)

> Hi my name is Joe and I am new to your group. I am not new to graves

> disease though. I was diagnosed with a hyperactive thyroid right

> around 2 years ago. I had been experiencing all the syptoms of a

> Hyperactive thyroid. I had RAI in Februrary of 2000. What a mistake

> that was in my oppinion. It seems my problems snow balled after that.

> In August of 2000 I woke up one morning and I was so swollen in the

> eyes. I thought I had been bitten several times by spiders in my

> sleep. I went to my personal Dr. and he said I had allergies. I asked

> about it being related to my thyroid and he said no, we took care of

> that with RAI. Needless to say I don't go to him anymore. I went to

> an optomologist and he said I had graves. I then went to an Endo and

> she confirmed I had graves with some blood work. She set me up with

> a wonderful optomologist at a University Hospital and I have been

> seeing him since January of 2001. We tried to sit it out awhile but I

> developed the blurred and double visions and when they became worse

> and my optic nerve was getting tight from the swelling I had

> radiation treatments to my eyes to reduce the swelling . It did its

> job and my double vision and blurred vision began to disappear. I

> still had those ugly huge bags under my eyes and the bulging was

> somewhat better but was still there. After several trips back to the

> optomologist to check on my progress we determined that my eyes had

> receded as far as they could. I opted for Orbit decompression sugery

> and just had it done on 12-11-01. It was quite and ordeal but I feel

> it is gonna be worth it. My swelling and bruising has all gone away

> except for my lower eyelids. I'm still trying to get rid of it. My

> eyes look much better since they reset them back where they should

> be. I was very fortunate not to get double vision from this surgery.

> Im not totaly done with this thing yet as I may have some eylid

> surgery down the road but it was the best thing for my self

> confidence and my out look on life to get this done. As painful as it

> was after I came out from the anestesia I would do it again tomorrow

> if I was in the same situation. If any of you have any questions I

> would be more than happy to share any information I may have.

> Joe

>

>

>

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

> 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]

Why don't the " bags " go away when the disease is gone? This is really

scaring me. I've also now developed bald spots on either side of my

forehead--like the way men do when they start losing their hair. I've been

on the verge of crying all weekend. I hate this disease! And why is this

just happening to me now, when my levels are almost normal instead of it

happening before I was being treated? Did my hypo period cause the hair

loss? I'm sorry to go on like this. It's been a bad few days...

Holly

Re: New Member, (my story kinda long)

Welcome, Joe.

You'll find many people here with thryoid eye disease, and a handful (I

think) who've had decompression surgery. I had a moderately severe case

myself, which required me to tape my eyes shut at night for a few months.

However, the only surgery I did have was one to remove the eye bags after

the ordeal. Thought I'd mention this since you commented on yours. I sent

in before/after pix of graves to my insurance company and my opth sent a

letter supporting the surgery and they paid for it, under the category of

'reconstructive surgery.'

I'm immensely grateful that I did it. The eye bags aged me a decade, I

felt. More than anything, it was a constant, visual reminder of the illness

and it was one aspect of the disease that helped to change my sense of self

so much -- I felt as if the sick eye look made me look like a sick person,

and removing that did a lot to make me feel as if I looked like my old

healthy self again.

Anyway, good luck with your continuing recovery. Keep us posted and ask

questions!

B

New Member, (my story kinda long)

> Hi my name is Joe and I am new to your group. I am not new to graves

> disease though. I was diagnosed with a hyperactive thyroid right

> around 2 years ago. I had been experiencing all the syptoms of a

> Hyperactive thyroid. I had RAI in Februrary of 2000. What a mistake

> that was in my oppinion. It seems my problems snow balled after that.

> In August of 2000 I woke up one morning and I was so swollen in the

> eyes. I thought I had been bitten several times by spiders in my

> sleep. I went to my personal Dr. and he said I had allergies. I asked

> about it being related to my thyroid and he said no, we took care of

> that with RAI. Needless to say I don't go to him anymore. I went to

> an optomologist and he said I had graves. I then went to an Endo and

> she confirmed I had graves with some blood work. She set me up with

> a wonderful optomologist at a University Hospital and I have been

> seeing him since January of 2001. We tried to sit it out awhile but I

> developed the blurred and double visions and when they became worse

> and my optic nerve was getting tight from the swelling I had

> radiation treatments to my eyes to reduce the swelling . It did its

> job and my double vision and blurred vision began to disappear. I

> still had those ugly huge bags under my eyes and the bulging was

> somewhat better but was still there. After several trips back to the

> optomologist to check on my progress we determined that my eyes had

> receded as far as they could. I opted for Orbit decompression sugery

> and just had it done on 12-11-01. It was quite and ordeal but I feel

> it is gonna be worth it. My swelling and bruising has all gone away

> except for my lower eyelids. I'm still trying to get rid of it. My

> eyes look much better since they reset them back where they should

> be. I was very fortunate not to get double vision from this surgery.

> Im not totaly done with this thing yet as I may have some eylid

> surgery down the road but it was the best thing for my self

> confidence and my out look on life to get this done. As painful as it

> was after I came out from the anestesia I would do it again tomorrow

> if I was in the same situation. If any of you have any questions I

> would be more than happy to share any information I may have.

> Joe

>

>

>

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

> 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 Joe;I too had orbital decompression done last year 1 surgery in feb. the

other eye in april.It was probably the only treatment Ive had done since Ive had

graves that went right!I havent had to many problems with my eyes since,and they

look 100% better then they did before the surgery.Just getting rid of the

constent discomfort was worth it alone.Unfortunatly I also had the RAI, I guess

about 5+ years ago and ALL the other symptoms just come and go.Right now the Drs

say Im within (normal) range and they proclame me as doing well with no need to

do anything else.but I have just gained 30 lbs in2 months,am jittery all the

time and feel like crap so .....so much for good and normal.Well good luck with

this demon illness.Cheryl---- Original Message -----

From: captainsta4

To: graves_support

Sent: Sunday, January 06, 2002 9:52 AM

Subject: New Member, (my story kinda long)

Hi my name is Joe and I am new to your group. I am not new to graves

disease though. I was diagnosed with a hyperactive thyroid right

around 2 years ago. I had been experiencing all the syptoms of a

Hyperactive thyroid. I had RAI in Februrary of 2000. What a mistake

that was in my oppinion. It seems my problems snow balled after that.

In August of 2000 I woke up one morning and I was so swollen in the

eyes. I thought I had been bitten several times by spiders in my

sleep. I went to my personal Dr. and he said I had allergies. I asked

about it being related to my thyroid and he said no, we took care of

that with RAI. Needless to say I don't go to him anymore. I went to

an optomologist and he said I had graves. I then went to an Endo and

she confirmed I had graves with some blood work. She set me up with

a wonderful optomologist at a University Hospital and I have been

seeing him since January of 2001. We tried to sit it out awhile but I

developed the blurred and double visions and when they became worse

and my optic nerve was getting tight from the swelling I had

radiation treatments to my eyes to reduce the swelling . It did its

job and my double vision and blurred vision began to disappear. I

still had those ugly huge bags under my eyes and the bulging was

somewhat better but was still there. After several trips back to the

optomologist to check on my progress we determined that my eyes had

receded as far as they could. I opted for Orbit decompression sugery

and just had it done on 12-11-01. It was quite and ordeal but I feel

it is gonna be worth it. My swelling and bruising has all gone away

except for my lower eyelids. I'm still trying to get rid of it. My

eyes look much better since they reset them back where they should

be. I was very fortunate not to get double vision from this surgery.

Im not totaly done with this thing yet as I may have some eylid

surgery down the road but it was the best thing for my self

confidence and my out look on life to get this done. As painful as it

was after I came out from the anestesia I would do it again tomorrow

if I was in the same situation. If any of you have any questions I

would be more than happy to share any information I may have.

Joe