[elf]

#1063989

Do you mean completely losing all peripheral sight, complete darkness on the sides as if you are wearing horse side eye protectors? Then I would push for decompression and your optical nerve evaluation.

Or, if you mean it’s getting harder to follow the pencil when it’s moves to the side, (or up/down)? Then it’s something every TED-er is a subject to, to a different degree. I am past OD and lid surgery (way past the hot stage of TED), yet cannot move my eyes to the side, and have to double take when changing lanes when driving.

[dakotamidnight]

#1018319

Anyone else going through this? Any ideas for cause?

I’m slowly losing all my peripheral vision in both eyes, and as of yet they haven’t found a reason why. I’ve worn glasses for years, and after 12 years of steadily worsening vision after they discovered my graves the eyesight finally stabilized.

I’ve seen a ophthalmologist as referred by my endo, endo says I have TED with bulging, ophthalmologist says I have no signs of it. Endo has seen me and my bulgy eyes for nearly 3 years now, so I’m more inclined to take her word than the eye doc who’s seen me once. Both agreed there is loss to my peripheral vision though.

I’ve been on methimazole since 10/07, and endo thinks it’s finally going into remission as I’m down to only 1 10mg a day – started at 4 10mg a day. Also taking propranolol 40mg 4x daily fwiw.

[dakotamidnight]

#1063990

elf wrote:Do you mean completely losing all peripheral sight, complete darkness on the sides as if you are wearing horse side eye protectors? Then I would push for decompression and your optical nerve evaluation.

Or, if you mean it’s getting harder to follow the pencil when it’s moves to the side, (or up/down)? Then it’s something every TED-er is a subject to, to a different degree. I am past OD and lid surgery (way past the hot stage of TED), yet cannot move my eyes to the side, and have to double take when changing lanes when driving.

Neither actually – it’s more like I’ve lost part of the peripheral sight, but there is not blackness. My visual area I can see has just decreased – does that make sense? Where I used to be able to look out of the corner of my eye and see things, now I have to turn my head to see them. What I do see now peripheral vision wise isn’t a clear as it used to be either, but that may just be because my glasses prescription is so strong.

My eyes are actually less bulgy than they were prior – my thought was perhaps having them bulgy for so long {15+ years confirmed from photos} stretched nerves/muscles and now that they are better it’s making them act differently? I’m also dealing with an apparent lazy eye on the left that popped up about the same time.

[Buttamama28]

#1063991

Hello,

I definitely know where you’re coming from. I have to turn my head completely to see from left to right. When ever a doctor pulls out the pencil, I always give them the "Look at me? Are you kidding…really, you want me to do that?" look. I hate when people stand on the side of me now, because I truly can’t figure out what they are doing unless I turn my whole head.

It is really hard to get an eye doctor, that know what is going on. Unless they specifically tell me they deal with people suffering from Graves’ disease, I don’t even waste my time.

Buttamama28

[Kimberly]

#1063992

Hello – We are just fellow patients here and not trained medical professionals, so we can’t give you a specific diagnosis. However, as elf and buttamama28 mentioned, restriction of the eye muscles *can* occur with Thyroid Eye Disease…and this can certainly affect our peripheral vision.

If it turns out that you *are* dealing with TED, your relationship with your ophthalmologist will be a long-term one…potentially 2-3 years. So if you are not comfortable with the doc you are currently seeing, you might consider getting a second opinion. One site that has been recommended in our conferences is http://www.asoprs.org — you might check there to see if there are any docs in your area.

Best of luck!

[azroses2322]

#1063993

In addition to the possibility of TED which swells the muscles attached to the eyes and makes them rubbery and difficult if not impossible to move and eye fatigue sets in. Has your eye doctor checked your pressure and/or given you a visual field test? I ended up with severe TED with the buldging and then the settling back but then the eyes froze where I could not look up and they did not track sideways on the same plane. So if I needed to glance sideways, I got dizzy — I had to close one eye before I looked sideways and had to move my head to see — I could not see what was on the higher shelves in the store and I could not screw in a light bulb or do anything over my head. I felt like my peripheral was decreasing which is what I hear you saying. I had to stop driving for a while because I could not see the side of the road with out turning my head and getting dis-oriented and I could not keep track where I was because I could not watch traffic and the road signs or familiar markers.
Has your doctor checked your pressure — I got Graves related Glaucoma along with the whole package of severe TED issues. Glacoma can reduce your visual field — I keep getting tested for it and monitored.
3 years after first Graves diagnosis and 9 surgeries later, I still have Glaucoma which is controlled with eye drops but the rest of the problems have been corrected to the best the doctors could do and my vision just tested 20/20 for the first time since TED set in 3 years ago.

So please get everything checked out with a good Ophthamologist that is familiar with Graves.

[Blessings]

#1063994

Please see a neuro-ophalmologist! You should have an MRI done. I, too, had lost periperal vision due to the swelling of the eye muscles and pressure on the optic nerve. Timing is critical.

Blessings

[snelsen]

#1063995

I have had TED for two years, been followed by a neuro-ophthamologist all that time. The visual fields are always done by machine, not the wiggly finger type. That’s not accurate enough when dealing with TED. My experience is below. I did have optic neuropathy, and I did have to have an emergent OD during the active phase to save my vision in my left eye.

Agree with Blessing that you should definitely be followed by neuro/opth. The big thing to worry about with TED and changing visual fields, is pressure on the optic nerve, ie., optic neuropathy. Along with careful exams, one of the early signs of optic neuropathy is not being able to see the color RED as vividly as you normally would. this is one of the many routine tests.
My experience-going to the neuro/opth
As I already stated, if there is pressure on the optic nerve, that is a problem which should be identified, addressed, probably with an orbital decompression, or possible a course of prednisone to reduce the inflammation in the orbit of the eye, thus reducing pressure on the optic nerve. This is a serious problem, for can result in blindness if not diagnosed and managed.
From my view, I did not really NOTICE that I had decreased visual fields (a "dark spot" when I looked left with my left eye)
because I think I was compensating for it a little bit. But the machine visual field exams showed decreasing vision in the left eye. Also, I did not see the color red as bright as it should have been, and as I saw it with the right eye.

During my whole experience with TED, I have not had an orbital MRI, so I can’t speak to that.
Sounds you need to lose the eye doc you have seen once. My eye doc who prescribed new glasses for three years did not recognize any of the signs of TED, and I had’em all! Find a neuro/opthamologist. Ask your endo for a referral to one. Check the color red test yourself. If you find that the red in your left eye is not as bright as the other eye, you should be seen by some eye doc who is familiar with TED.
I am worried that you need to be seen quickly, to clarify what is going on with your eyes.
Shirley

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