Re: Screwy Eyes

[Guest guest]

Jody, I don't have any advise regarding the GO. I've got a mild case of it

myself with my left eye protruding slightly. But I did want to lend you some

support...it's rough having trouble focusing/seeing...and nobody likes a

surprise visit from the GO 5 years down the road I'm sure! Hang in there!!

Doris

[Guest guest]

Thanks tons Doris. I forgot to mention also the lid lag in my left eye is

HORRID!

Jody

_________________________________________________________________

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[Guest guest]

Hi Jody-

I also wanted to send support your way. I don't have much advice though

except maybe not to worry too much. I was terrible about taking care of my

eyes.

I did have severe exophthalmus after RAI and my vision was very blurry. My

eyes eventually receded (they started to after 6 months) until now they only

mildly protrude (still have had ulcerative keratitis twice). I still have

problems with blurry vision but that seems to happen when I'm hypothyroid.

The good thing is, even though my eyes were bad, there has been no permanent

damage (we don't talk about the cosmetic aspects). Do you think your dose

of Armour might not be quite high enough? If you're still hypothyroid, that

could be affecting your eyes.

Take care,

Screwy Eyes

> Hi all,

> In less than 2 weeks I will be 5 years post RAI...I have been lucky with

my

> eyes for the most part. I do have GO but no protrusion and when I keep

> stress down they don't seem to bother me much. Well I think that is

> changing

>

> For about 2 months now there has been a gradual downhill progression, in

> order for me to focus I have to keep my head tipped to the right, or head

> tipped down with eyes looking up, which really makes them ache after a

bit.

>

> I'm not having double vision often...but it does feel/look like I have a

> ridge that runs down through whatever I am looking at...the whole picture

is

> there, but almost like a split (though not 2 of everything) and walking

> downstairs is a real trip (almost literally) I have to hold on tight to

the

> banister and keep my eyes focused out and not look down or 2 stairs seem

to

> run together, I missed a step and almost went head over heals

yesterday...I

> also get vertigo from this.

>

> All of you that have gone through this before me, can you tell me what I

am

> in for? I do have an appt. with a dr. in Buffalo who is very familiar

with

> GO, but not until 7/30...though I did ask to be put on a cancellation

list.

> When this first started, I thought it would be like it use to be, allergy

> triggered, gone in a week or two but it just keeps getting worse I am

> only on the computer to check mail once or twice a day now because the

> computer really bothers them.

>

> Oh, the only time I can focus my eyes and have any relief is after the sun

> has completely set and I am sitting on my porch...I get some relief

> then...otherwise all I want to do is lay or sit with my eyes closed.

>

> Thanks for any advice you all can offer, it will be take to heart and

> greatly appreciated!

> Take care,

> Jody

> _________________________________________________________________

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

>

>

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

> 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.

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

>

>

[Guest guest]

Hi Jody,

Gee, I'm sorry to hear about your eyes. I don't know much about

the subject, just what I have personally experienced. I think mine

have been troubled by GO for at least a year and a half. I didn't

know it until recently. When I found out I read a bit about it and

they mentioned that people felt better with sunglasses on, some even

in the house during the day. I had never enjoyed sunglasses and so

never wore them but I figured I'd try them to see if it felt better.

I tried some with polarized lenses and felt an immediate improvement

in the feeling in my eyes.

It is so wrong that you have to wait so long to see someone about

it. Are you going to see an ophthalmologist?

Actually, I went to an ophth and he said we'd wait and see if I

need surgery when it's all over. Other than that, he wasn't much

help...He did say if it got bad enough we could use prisms on my

reading glasses to fix the double image. Thing is I don't have double

vision while reading usually and I don't have prescription glasses,

although I could use them, so there's really nothing to put the

prisms on. But for you, maybe they could get rid of the ridge and

fix it so you could keep your head in a more neutral position and

hopefully help you with your depth perception.

Jody, I hope your eye disease reverses itself completely and soon!

> Hi all,

> In less than 2 weeks I will be 5 years post RAI...I have been lucky

with my

> eyes for the most part. I do have GO but no protrusion and when I

keep

> stress down they don't seem to bother me much. Well I think that

is

> changing

>

> For about 2 months now there has been a gradual downhill

progression, in

> order for me to focus I have to keep my head tipped to the right,

or head

> tipped down with eyes looking up, which really makes them ache

after a bit.

>

> I'm not having double vision often...but it does feel/look like I

have a

> ridge that runs down through whatever I am looking at...the whole

picture is

> there, but almost like a split (though not 2 of everything) and

walking

> downstairs is a real trip (almost literally) I have to hold on

tight to the

> banister and keep my eyes focused out and not look down or 2 stairs

seem to

> run together, I missed a step and almost went head over heals

yesterday...I

> also get vertigo from this.

>

> All of you that have gone through this before me, can you tell me

what I am

> in for? I do have an appt. with a dr. in Buffalo who is very

familiar with

> GO, but not until 7/30...though I did ask to be put on a

cancellation list.

> When this first started, I thought it would be like it use to be,

allergy

> triggered, gone in a week or two but it just keeps getting worse :

( I am

> only on the computer to check mail once or twice a day now because

the

> computer really bothers them.

>

> Oh, the only time I can focus my eyes and have any relief is after

the sun

> has completely set and I am sitting on my porch...I get some relief

> then...otherwise all I want to do is lay or sit with my eyes closed.

>

> Thanks for any advice you all can offer, it will be take to heart

and

> greatly appreciated!

> Take care,

> Jody

> _________________________________________________________________

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

[Guest guest]

Sorry to hear about your Thyroid Eye Disease. I had had RAI done 6/23/2000 and

had no problems with my eyes until Oct./Nov. 2000. That is when my T4 levels

started coming down. First the dryness, tearing, then blurry vision, red

irritated eyes. My eye doctor told me if I started seeing double to let him

know immediately. Well, about March, 2001, this year, I started seeing double.

First just looking to the left or to the right. My eye doctor immediately

contacted my endo who ordered another TSH Profile, T4 back 13.2 and TSH .03 on

3/30/2001. (Note: When I had the RAI in 6/23/2000 my T4 was 13.8 and TSH was

undetectable.) Then from 3/30/2001 to 4/20/2001 in less than 30 days my vision

is double when just slightly looking to the left or to the right. Another TSH

Profile done, now on 4/20/2001 my Free T3 is 5.2 and TSH is down to .019. T4

can be higher because I also have to take estrogen. My eye doctor made me an

appointment with the Dean McGee Eye Institute in Oklahoma City, Ok. I saw the

professor or Neuro-Ophthalmology, Dr. Bradley Farris. See their web page at

http://www.dmei.org. . This eye clinic is one of the best in the nation. I

have diplopia, double vision. It took me 6 weeks to get into the eye institute

(they are a busy place) and then on my appointment Dr. Farris says we should

have started radiation treatments on my eyes yesterday. (Go Figure,). I

started the radiation treatments at a Cancer Treatment Center in Midwest City

this week and will have 10 treatments. Orbital decompression surgery should not

have to be done because my eyes are not bulging forward but on the outside of my

eyes on my face and under my eyes because the eye muscles around the optic nerve

are so swollen, but my problem shown on the catscan is that the optic nerve is

about 1/4 inch wide and the eye muscle surrounding it should be about half that

wide but mine is about 1-2 inches wide. When I sleep at night, my eyes don't

close and I have to tape them down, use lubricating cream, found me a eye mask

with ice pack to wear at night to keep swelling down. They also put me on

prendisone to help get the swelling down also. Doctor says it will take about 6

weeks to 3 months for all the swelling to go down after the radiation

treatments, then back to the McGee Eye clinic to realign my eye muscles which

should then correct the double vision. I am Computer Support Technician and am

now on short term disability because of the double vision, treatments. I have

read that only about 15% of Graves patients ever get the eye disease this bad,

but the eye disease has been worse than any of the hyper symptoms. My endo is

going to put me on Tapazole because RAI is out of the question with the active

eye disease. My eye disease really progressed rapidly and hopefully all will

work out well. Good luck with your eyes. You can read more about Dr. Bradley

Farris, or the Dean McGee Eye clinic at http://dmei.org ,

http://www.dmei.org/physic_scients.asp and look up Dr. Bradley Farris. Also

look on www.webmd under references for Doctors/Physicians and I found several

praises for this Dr. Bradley Farris, he is excellent. I am not sure where you

live and Oklahoma may be a long way for you, but Thyroid Eye Disease or Graves

Ophthalmology is the worst system I have had with the Graves Disease and

hopefully starting the Tapazole soon will get my thyroid back down. I have

never been sick in my life and this has been a roller coaster and finding this

group to share information/links with has been my only life saver. Nobody else

can understand what it is like except those of us going through this and thank

you all for so much information and help and support. Don't know what I would

have done without you all. Good Luck everyone!

Re: Screwy Eyes

Thanks tons Doris. I forgot to mention also the lid lag in my left eye is

HORRID!

Jody

_________________________________________________________________

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

[Guest guest]

Hi Patty,

Thank you for sharing so much information with me on what you are going

through...unfortunately I am in NY State so seeing the same dr. or clinic

would be out of the question with me. You have told me so much I didn't

know and it will help me get the questions right when I see Dr. Shaeffer in

July (hopefully sooner).

I'm guessing that no one told you before you had your first bout of RAI that

RAI tends to bring on GO quicker than anything else. I am glad you are now

on ATD's and hope you think seriously before allowing them to RAI you again!

I think that 15% is a low number for GO, even severe GO. Just about

everyone I know from this board and others has some form of it, those with

moderate, severe, very severe GO tend to be those of us who have had RAI...I

thought since I am 5 years post RAI and have very little protrusion I was

safe from its onslaught, I find now I am wrong.

Keep us posted on how you are doing, I am really curious about how your

treatments go and how the double vision does with them.

Thanks again so very much,

Jody

_________________________________________________________________

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

[Guest guest]

Jody,

Now is the time to invest in some fairly good, wrap around

polarized lenses and keep them on your face so you don't lose them. I

bought 2 pair when I tried them on...I was afraid of losing one and

not being able to get the relief I was feeling when I needed it.

That's just how good they felt. They had some for $150 or so, but I

found some very nice (lose-able) ones for about $20 each. I was at an

outlet store that only carried sunglasses so it might not be so easy

to find them in any particular store. Good luck with that. Hope you

give them a try because I think they might help. I don't know why

they work, but they do something helpful.

The quick run through the reading lens strenghts reminds me of me.

Every time I'd lose some or break them, I found I was needing

stronger ones when I read the chart in the store. I began wearing

them about 7 years ago, or so and I'm wearing the 2.75s now.

I am hoping you can get a cancellation appointment, but if you

can't, call and tell them it's an emergency and that you need to be

seen soon. Tell them you are afraid you might lose your vision if you

wait that long...maybe they'll try harder to see you.

Wishing you well,

> Hi ,

> Yes I am seeing an ophthalmologist on July 30...he is the only one

anywhere

> near me that has experience with GO and I do know others that see

him and

> like him well.

>

> Before GD I never had to wear glasses, shortly after diagnosis I

had to go

> to reading glasses... 125's this year (just since Jan. I have gone

to 150's

> and now 175's, it is very frustrating. I did have one dr. (an old

eye dr.

> with no experience in GO) talk to me about prisms, I'll wait and

see what

> happens in July, and pray for a cancellation.

>

> They have acted up before, usually when I have been stressed for

long

> periods of time, I don't believe that is the case but, hey, son is

home from

> college believing he is the BMOC which doesn't help LOL

>

> I have always worn sunglasses as my eyes have been very light

sensitive

> since I was a child...I buy them at the dollar store because I am

always

> forgetting where I put them <g> They do help, and I do sometimes

where them

> in the house when the shades are up, mostly I just leave the shades

pulled

> which shuts out so much sunshine

>

> Talk to you later,

> Jody

> _________________________________________________________________

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

[Guest guest]

Dear Jody,

If you need a quicker appointment, YOU need to ring the people up and BUG

them for a quicker one - I used to think that if I was in enough pain or at

enough risk , they would ring magically ring me with a quicker appointment,

but the reality is they will not think of you unless you keep on telling

them where you are at. Could you ask for them to contact you with a

cancellation if one comes up at short notice, inform them of your discomfort

and your inability to earn your living while you are experiencing so much

double vision.

Maybe even get someone else to ring for you - this, for some bizarre reason,

seems to work better sometimes, for me anyway - on occasions when I have

enlisted the help of friend or family to get a quicker appointment, the

drama of a friend or family member ringing on behalf of the patient seems to

get through better. I think it is just the dynamic of being a patient -

everyone feels you are demanding. Once I got my GP to get me a quicker

appointment with the endocrine specialist - I had tried myself to bring my

appointment forward on a phone call in the morning but was pretty much

dismissed; saw my GP in the afternoon and he got me in for two days later...

Sorry to hear your eyes are giving you trouble. I have only had it mildly,

but I remember that feeling when my eyes were sore and I experienced some

transient eye problems that I was scared of this aspect of things most as it

interfered so much with my sense of self. I found that although I had been

through a hyper hell for several months, when my eyes were affected I was

going around muttering out loud " Oh, no, now this is just going to far!! "

GOOD LUCK WITH IT ALL

DAWN ROSE

>From: kfroilan@...

>Reply-To: graves_support

>To: graves_support

>Subject: Re: Screwy Eyes

>Date: Fri, 25 May 2001 20:14:33 -0000

>

>Jody,

> Now is the time to invest in some fairly good, wrap around

>polarized lenses and keep them on your face so you don't lose them. I

>bought 2 pair when I tried them on...I was afraid of losing one and

>not being able to get the relief I was feeling when I needed it.

>That's just how good they felt. They had some for $150 or so, but I

>found some very nice (lose-able) ones for about $20 each. I was at an

>outlet store that only carried sunglasses so it might not be so easy

>to find them in any particular store. Good luck with that. Hope you

>give them a try because I think they might help. I don't know why

>they work, but they do something helpful.

> The quick run through the reading lens strenghts reminds me of me.

>Every time I'd lose some or break them, I found I was needing

>stronger ones when I read the chart in the store. I began wearing

>them about 7 years ago, or so and I'm wearing the 2.75s now.

> I am hoping you can get a cancellation appointment, but if you

>can't, call and tell them it's an emergency and that you need to be

>seen soon. Tell them you are afraid you might lose your vision if you

>wait that long...maybe they'll try harder to see you.

> Wishing you well,

>

>

>

> > Hi ,

> > Yes I am seeing an ophthalmologist on July 30...he is the only one

>anywhere

> > near me that has experience with GO and I do know others that see

>him and

> > like him well.

> >

> > Before GD I never had to wear glasses, shortly after diagnosis I

>had to go

> > to reading glasses... 125's this year (just since Jan. I have gone

>to 150's

> > and now 175's, it is very frustrating. I did have one dr. (an old

>eye dr.

> > with no experience in GO) talk to me about prisms, I'll wait and

>see what

> > happens in July, and pray for a cancellation.

> >

> > They have acted up before, usually when I have been stressed for

>long

> > periods of time, I don't believe that is the case but, hey, son is

>home from

> > college believing he is the BMOC which doesn't help LOL

> >

> > I have always worn sunglasses as my eyes have been very light

>sensitive

> > since I was a child...I buy them at the dollar store because I am

>always

> > forgetting where I put them <g> They do help, and I do sometimes

>where them

> > in the house when the shades are up, mostly I just leave the shades

>pulled

> > which shuts out so much sunshine

> >

> > Talk to you later,

> > Jody

> > _________________________________________________________________

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

>

>

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

>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.

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

>

>

[Guest guest]

Jody, I just want to say I appreciate all the information you have given me in

the past. I always read your replies first because you have given me some

wonderful links in the past that has just amazed me the information I have

learned. If it was not for this forum I don't know what I would do. We all

have so much to share with each other because unless you are going thru this you

cannot imagine what it is like. I have 5 more radiation treatments on my eyes

left and then I go see the doctor at the Dean McGee Eye Clinic on July 17th.

They I will find more from there what the next step will be. God bless

everybody and thank you all listening me out and letting me know that I am not

alone in this. Especially you Jody.

Re: Screwy Eyes

Hi Patty,

Thank you for sharing so much information with me on what you are going

through...unfortunately I am in NY State so seeing the same dr. or clinic

would be out of the question with me. You have told me so much I didn't

know and it will help me get the questions right when I see Dr. Shaeffer in

July (hopefully sooner).

I'm guessing that no one told you before you had your first bout of RAI that

RAI tends to bring on GO quicker than anything else. I am glad you are now

on ATD's and hope you think seriously before allowing them to RAI you again!

I think that 15% is a low number for GO, even severe GO. Just about

everyone I know from this board and others has some form of it, those with

moderate, severe, very severe GO tend to be those of us who have had RAI...I

thought since I am 5 years post RAI and have very little protrusion I was

safe from its onslaught, I find now I am wrong.

Keep us posted on how you are doing, I am really curious about how your

treatments go and how the double vision does with them.

Thanks again so very much,

Jody

_________________________________________________________________

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

[Guest guest]

Thank you for the compliment Patty. Any information I have was given to me

by others in this group when I first started to. But it lets me know that I

am giving back to others what has been given to me through this group and

that is a good thing.

You are so right about all of the support we all have in here. Whether we

participate or just read, as so many of the new people do for a while, at

least we know we are not alone! We are not imagining what our bodies are

going through and we can learn so very much from others who have walked our

paths before us.

If we have to have this dang disease, then I am glad I am in with this group

of people!

Take care,

Jody

_________________________________________________________________

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