Re:TED comments and questions-/

[Guest guest]

Hi -

I have had TEDs since 1999 and first notice of symptoms were ill

fitting contacts. I do a lot of computer work and my eyes were irrated

and I assumed it was the contacts. Ordered a new pair, changed

solutions and not much of a difference. Then double vision set in but

was noticeable while at home watching TV since the distance to the TV

was greater than screen work in the office. I went to 2 specialists,

confirmed with TEDs was told nothing could be done, just watch it and

it won't get worse and I would NOT develop the bulgy eye. The doc said

she would call for another appt in 6-8 weeks just to keep watch on my

vision. I had CT scans and everything on that first visit (Sept 99)

Emotionally I was becoming a wreck, very anxious inside of me, my eye

started to bulge and to this day I am still waiting for her to call

me. I changed docs, saw my internist and begged for help. He referred

me to a nuerologist who put me on the path to save my life. He

confirmed TEDs again, talked about the emotional effects that it would

have on my life, put me on a 45 day steriod program and I had follow

up visits every 5-6 weeks. For me steriods are horrible, but I was

willing to try anything, by now my left eye was very enlarged, lower

rectus muscle was so tight with inflammation it was pulling my eye

downward and my lids were retracting. My biggest issue with steriods

are labored breathing, fatigue (although I was still hypoT)sweat and

being uptight(don't forget the weight gain and round face too). I took

a couple weeks off work at the beginning of treatment just to make

sure I could function while on steriods, his suggestion. He told me

that steriods only work in about 30% of the cases but that was my only

option at the time. I had to try it and stick with it. There was

minor improvement, but when I came off it was reversed. After about 3

months my eye slipped even more, more protrusion and retraction and

zero self esteem. My doc knew all the emotional side effects and was

discussed every time. I was referred to 2 surgeons, one for orbit

repair and the other for muscle alignment.

since 99, I've had 1 orbit decompression (3-walls/sinus cavity, 2

muscle surgeries, an extensive eye exploratory surgery last December

for scar tissue removal and muscle adjustments, a lid retraction last

Feb and still have additional muscle surgery in Jan/Feb coming up. I

have had just about every procedure and option available. At one point

after the decompression my lower rectus muscle was filled with disease

it had pulled my eye down beneath my lower lid. I had no eye showing,

except white with bright red streaks throughout. This went on for

months until I started with the muscle surgery. I have never been

fortunate enough to have the decompression when timing was right or

the muscle surgeries. All of my procedures have been done out of

necessity. Save my vision in the left eye. I started with the muscle

surgeries in June of 2001 to lift eye up since it wasn't showing. My

surgeons are my lifeline, they have done a wonderful job and how they

have saved my vision is beyond my comprehension. The up and coming

surgery will try for alignment to rid the double vision looking

forward.

After all this time and procedures we are just starting to do the

alignment. Even my lid retraction was done because I could only blink

and cover 1/3 of my eye. I was having drying issues and ulcers were

the last thing I needed. For 1 1/2 years I had to tape my eye shut at

night and still have to watch all the drops and lubricants to keep the

eye moist. I have permanent damage with eye mobility. I still have

some symmetrical issues that will be permanent but the positive is

that I no longer feel like a freak, and I have vision. Not 100% but

where I've been you wouldn't believe what kind of miracle they have

performed with me.

the first thing you need to do is find the right docs. Check the

top doc directory for where you live. Ask for references from patients

that have TEDs, ask the doc is there any type of support group in the

area. This disease can be minor or devasting. Educate yourself, find

competent docs that you trust and are comfortable with, ask questions,

etc.

Emotionally is the battle, you have to come to terms this disease. We

are helpless on how long it takes,6 months hot stage to me is a myth.

I am still having minor changes occur. I have good and bad days, pain

is constant, but manageable with motrin. When I have a real bad day, I

tell myself that tomorrow is usually better and wait it out. , it

usually is, too. I think of the St Jude commercial, and compared to

the kids that suffer this is really nothing. It's critical to us, it

takes self-esteem and impacts all facets of our lives. Just remember

you are not alone, docs are key to getting through this, and like my

docs have said it's OK to get mad. Enjoy life the best you can and I

believe that everything happens for a reason. Why this has happened to

me I don't know now, but I don't know what the future holds.

Best in health

Nance

> Hi ,

>

> The progression of my eye disease took longer than 6 months. I

started

> having watery eyes and light sensitivity after I was hyper for about

6

> months. Then after another 6 months and beginning Tap, I got lid

retraction

> and even went to the doc once thinking I had pink eye. Another 6

months and

> my eyes began to swell underneath and my left eye was protruding.

Three

> months later I took RAI thinking it would HELP my eyes, and within 2

weeks

> had two swollen, protruding eyes and double vision. Because the RAI

> exacerbated my eye disease, I will never know what the natural

progression of

> the disease would have been had I stayed on Tapazole.

>

> I was finally referred to an ophth and she wanted me on steroids.

However,

> she talked to my endo (fired #2) and they decided the side effects

of

> steroids would be worse for me than the benefits. At that time, my

TSH was

> 97 and I was so depressed and anxious that the steroids probably

would have

> put me over the edge.

>

> I told my ophth that radiotherapy was not and would never be an

option for

> me. Fortunately, a study had just been published showing that

radiotherapy

> is not beneficial, so I didn't get an argument there.

>

> My ophth has been urging me for a year to have orbital

decompression, and I

> nearly went thru with it in August this year. But I had my endo run

my TSI's

> and they were elevated (325, normal limits <130!) so I put on the

brakes for

> surgery. I am so glad I listened to my friends here, because one

month later

> I was hypo again and if I had had surgery, I would've been in a hell

of a

> mess. My eyes got worse from being hypo (dry and painful) and I

would not

> have healed properly.

>

> The one thing that has helped my eyes is antioxidant supplements and

flaxseed

> oil. I have swollen conjunctiva and the one on my right eye is

almost normal

> since I have been taking supplements. However, since I am hypo

again, I have

> an ulcer on the conjunctiva of the left eye (this eye will not close

while I

> am asleep) that I am using a steroid/antibiotic salve on and the doc

will

> check it again the 1st week of Dec.

>

> One thing that has been a downfall for me with the eye disease is I

was kept

> hyper so long in the beginning stages of it and since RAI I keep

gradually

> getting more hypo. I have no set point, and really haven't for the

3 & 1/2

> years that I have been battling Hashi's and Graves. It is so

important to

> get stabilized and stay there. My eyes have really paid for what a

slew of

> incompetent docs have let me go thru.

>

> Pam L has taken steroids for TED, so I hope she will jump in with

details of

> what she went thru with them. If anyone else has taken them, will

you also

> give us any info from your experiences with using them in TED

treatment?

>

> How do I cope? Some days I don't. But I am a Christian and I have

peace in

> the assurance that God uses everything for good. I have to look at

this

> thing as a blessing. I have made some friends here and at Mediboard

that I

> know will be lifelong friends for me! And I can help other people

who are

> going thru this and be His witness at the same time. So it is not a

curse.

> I would love to be healed of this nightmare, but if that is not

God's will,

> then I will try to do as He would want me to.

>

> I feel so sad when I hear stories like yours and others going thru

this. It

> breaks my heart. It is one thing for me to go thru it, but when I

hear of

> other people's problems with TED, it is almost too much to bear. I

guess

> because the pain is so raw in me that I can feel your pain too.

>

> I pray that you will have medical care that was better than what I

accepted.

> If there is ever anything I can do, please write me. I hope this

has helped

> and not made things worse for you.

>

> God bless,

>

> Hashi's, Graves, TED worsened by RAI Sept. 2001

>

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091

;p=1

[Guest guest]

Hi -

I have had TEDs since 1999 and first notice of symptoms were ill

fitting contacts. I do a lot of computer work and my eyes were irrated

and I assumed it was the contacts. Ordered a new pair, changed

solutions and not much of a difference. Then double vision set in but

was noticeable while at home watching TV since the distance to the TV

was greater than screen work in the office. I went to 2 specialists,

confirmed with TEDs was told nothing could be done, just watch it and

it won't get worse and I would NOT develop the bulgy eye. The doc said

she would call for another appt in 6-8 weeks just to keep watch on my

vision. I had CT scans and everything on that first visit (Sept 99)

Emotionally I was becoming a wreck, very anxious inside of me, my eye

started to bulge and to this day I am still waiting for her to call

me. I changed docs, saw my internist and begged for help. He referred

me to a nuerologist who put me on the path to save my life. He

confirmed TEDs again, talked about the emotional effects that it would

have on my life, put me on a 45 day steriod program and I had follow

up visits every 5-6 weeks. For me steriods are horrible, but I was

willing to try anything, by now my left eye was very enlarged, lower

rectus muscle was so tight with inflammation it was pulling my eye

downward and my lids were retracting. My biggest issue with steriods

are labored breathing, fatigue (although I was still hypoT)sweat and

being uptight(don't forget the weight gain and round face too). I took

a couple weeks off work at the beginning of treatment just to make

sure I could function while on steriods, his suggestion. He told me

that steriods only work in about 30% of the cases but that was my only

option at the time. I had to try it and stick with it. There was

minor improvement, but when I came off it was reversed. After about 3

months my eye slipped even more, more protrusion and retraction and

zero self esteem. My doc knew all the emotional side effects and was

discussed every time. I was referred to 2 surgeons, one for orbit

repair and the other for muscle alignment.

since 99, I've had 1 orbit decompression (3-walls/sinus cavity, 2

muscle surgeries, an extensive eye exploratory surgery last December

for scar tissue removal and muscle adjustments, a lid retraction last

Feb and still have additional muscle surgery in Jan/Feb coming up. I

have had just about every procedure and option available. At one point

after the decompression my lower rectus muscle was filled with disease

it had pulled my eye down beneath my lower lid. I had no eye showing,

except white with bright red streaks throughout. This went on for

months until I started with the muscle surgery. I have never been

fortunate enough to have the decompression when timing was right or

the muscle surgeries. All of my procedures have been done out of

necessity. Save my vision in the left eye. I started with the muscle

surgeries in June of 2001 to lift eye up since it wasn't showing. My

surgeons are my lifeline, they have done a wonderful job and how they

have saved my vision is beyond my comprehension. The up and coming

surgery will try for alignment to rid the double vision looking

forward.

After all this time and procedures we are just starting to do the

alignment. Even my lid retraction was done because I could only blink

and cover 1/3 of my eye. I was having drying issues and ulcers were

the last thing I needed. For 1 1/2 years I had to tape my eye shut at

night and still have to watch all the drops and lubricants to keep the

eye moist. I have permanent damage with eye mobility. I still have

some symmetrical issues that will be permanent but the positive is

that I no longer feel like a freak, and I have vision. Not 100% but

where I've been you wouldn't believe what kind of miracle they have

performed with me.

the first thing you need to do is find the right docs. Check the

top doc directory for where you live. Ask for references from patients

that have TEDs, ask the doc is there any type of support group in the

area. This disease can be minor or devasting. Educate yourself, find

competent docs that you trust and are comfortable with, ask questions,

etc.

Emotionally is the battle, you have to come to terms this disease. We

are helpless on how long it takes,6 months hot stage to me is a myth.

I am still having minor changes occur. I have good and bad days, pain

is constant, but manageable with motrin. When I have a real bad day, I

tell myself that tomorrow is usually better and wait it out. , it

usually is, too. I think of the St Jude commercial, and compared to

the kids that suffer this is really nothing. It's critical to us, it

takes self-esteem and impacts all facets of our lives. Just remember

you are not alone, docs are key to getting through this, and like my

docs have said it's OK to get mad. Enjoy life the best you can and I

believe that everything happens for a reason. Why this has happened to

me I don't know now, but I don't know what the future holds.

Best in health

Nance

> Hi ,

>

> The progression of my eye disease took longer than 6 months. I

started

> having watery eyes and light sensitivity after I was hyper for about

6

> months. Then after another 6 months and beginning Tap, I got lid

retraction

> and even went to the doc once thinking I had pink eye. Another 6

months and

> my eyes began to swell underneath and my left eye was protruding.

Three

> months later I took RAI thinking it would HELP my eyes, and within 2

weeks

> had two swollen, protruding eyes and double vision. Because the RAI

> exacerbated my eye disease, I will never know what the natural

progression of

> the disease would have been had I stayed on Tapazole.

>

> I was finally referred to an ophth and she wanted me on steroids.

However,

> she talked to my endo (fired #2) and they decided the side effects

of

> steroids would be worse for me than the benefits. At that time, my

TSH was

> 97 and I was so depressed and anxious that the steroids probably

would have

> put me over the edge.

>

> I told my ophth that radiotherapy was not and would never be an

option for

> me. Fortunately, a study had just been published showing that

radiotherapy

> is not beneficial, so I didn't get an argument there.

>

> My ophth has been urging me for a year to have orbital

decompression, and I

> nearly went thru with it in August this year. But I had my endo run

my TSI's

> and they were elevated (325, normal limits <130!) so I put on the

brakes for

> surgery. I am so glad I listened to my friends here, because one

month later

> I was hypo again and if I had had surgery, I would've been in a hell

of a

> mess. My eyes got worse from being hypo (dry and painful) and I

would not

> have healed properly.

>

> The one thing that has helped my eyes is antioxidant supplements and

flaxseed

> oil. I have swollen conjunctiva and the one on my right eye is

almost normal

> since I have been taking supplements. However, since I am hypo

again, I have

> an ulcer on the conjunctiva of the left eye (this eye will not close

while I

> am asleep) that I am using a steroid/antibiotic salve on and the doc

will

> check it again the 1st week of Dec.

>

> One thing that has been a downfall for me with the eye disease is I

was kept

> hyper so long in the beginning stages of it and since RAI I keep

gradually

> getting more hypo. I have no set point, and really haven't for the

3 & 1/2

> years that I have been battling Hashi's and Graves. It is so

important to

> get stabilized and stay there. My eyes have really paid for what a

slew of

> incompetent docs have let me go thru.

>

> Pam L has taken steroids for TED, so I hope she will jump in with

details of

> what she went thru with them. If anyone else has taken them, will

you also

> give us any info from your experiences with using them in TED

treatment?

>

> How do I cope? Some days I don't. But I am a Christian and I have

peace in

> the assurance that God uses everything for good. I have to look at

this

> thing as a blessing. I have made some friends here and at Mediboard

that I

> know will be lifelong friends for me! And I can help other people

who are

> going thru this and be His witness at the same time. So it is not a

curse.

> I would love to be healed of this nightmare, but if that is not

God's will,

> then I will try to do as He would want me to.

>

> I feel so sad when I hear stories like yours and others going thru

this. It

> breaks my heart. It is one thing for me to go thru it, but when I

hear of

> other people's problems with TED, it is almost too much to bear. I

guess

> because the pain is so raw in me that I can feel your pain too.

>

> I pray that you will have medical care that was better than what I

accepted.

> If there is ever anything I can do, please write me. I hope this

has helped

> and not made things worse for you.

>

> God bless,

>

> Hashi's, Graves, TED worsened by RAI Sept. 2001

>

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091

;p=1