[Ski]

#1075683

Hi there,

I understand completely ~ our eyes are so important in how we see the world and how we think the world sees us! I’m sorry to hear that you’re going through this. It’s true that it’s possible for your eyes to return to normal, but the fact is that your information is correct, that’s pretty rare. It really depends on the mechanism of your disease, the extent of the changes, the length of the "disease curve." Some people have a very short curve, others a bit longer. The doctors at our recent conference indicated that the symptoms are usually worse, and last longer, for smokers. So, if you smoke, do quit. If you’re around smokers often, minimize that exposure.

Also, younger people are more likely to have issues with the fatty tissue behind the eye expanding, while older patients have swelling in the actual muscles, and that dynamic can make a difference in future prognosis as well.

So it’s really impossible to say for sure, but we can say that every disease curve has a period of improvement near the final stability, or "cold phase." So you know that is ahead of you, and it’s possible that a lot of the changes you’ve experienced will reverse. The thing is that it can take some time. In the meantime, try to keep your stress down, and make sure that you keep your eye moist, since damage to your cornea is something that cannot be reversed. You may want to invest in some lightly tinted sunglasses that you can comfortably wear indoors, since that can minimize the effect of flourescent lights and forced air, plus you can kind of "hide" behind them and that may help you feel more comfortable talking with people. Everyone I talk to that has the eye disease is upset by the fact that it’s difficult to speak with people without either explaining what is going on or watching them fumble with their eyes, not knowing where to look or what to say. Some say it’s better just to begin by explaining what’s going on (in very basic terms), others are overwhelmed at having each conversation begin that way. It’s a tough spot to be in, I know.

Remember, one of my favorite lessons from Bobbi (who will be returning to this forum soon, watch this space! ” title=”Very Happy” />) is that we all look better when we’re smiling than when we’re not. Try to put things in perspective, and remember this is not going to last forever. Once you’re stable, you can look at the options you have for returning your eyes to the state you remember.

There are LOTS of hints and tips in the messages here ~ I’m going to be signing off soon, but I’ll keep an eye on this thread and pop back in with suggestions as they come to me. Best of luck to you. Chin up, keep smiling!

[1212sarah]

#1020015

I was diagnosed with graves eye disease 5 months ago. i think i have had it for about 9 months. I only have it in one eye. my thyroaid is normal. my last appointment a month ago i was told there is some improvement in my eye. however that eye lid is still swollen, thought it is better than it was. i am terribly self consious about this. my self esteem has gone down since this has happened. I keep reading that the swelling causes scarring and that the eyes hardly ever return to normal. this makes me very sad. i hate looking in the mirror.i hate my eye. i feel so hideous. has anyone’s eye’s gone back to normal after a period of time?
i just want my old eyes back.

[npatterson]

#1075684

Ski (as usual) gave you a great reply. It is unfortunate that what you are reading is that the muscles almost always turn to scar tissue–that is simply not true. It does have some to do with age, as Ski says. About half the people with severe eye disease simply have it "go away". However, they are NOT on the Internet telling everyone about it. They are walking in the sunshine, faces to the wind, and in many cases have forgotten about their eyes. If someone asks them, they will remember, and are very glad their eyes got better on their own.

That leaves the "other" half–of which you are not necessarily a "member". There are things that the doctors can do while you are in the active phase. They may tell you that some things have to wait–and they do. That brings us to the dreaded "P" word: PATIENCE. If there is one thing Graves’ patients are not, it is patient. That is one of the hardest things about the eye disease. While you can take medication (steroids) to see if they help at all, most of the time we are just [im-patiently] waiting. All those things Ski mentioned will help you make it through from day to day. Stay in touch with your doctor. There is a radiation treatment (focused x-ray beams) can only be done in the active phase, but they want it to almost have run its course (there’s PATIENCE again). I didn’t know about that early in my eye disease (back in the dark ages), as it had just been "invented". There was a time I would have been a perfect candidate.

Anyway, even if what seems like the worse case–your muscles do scar, you are not stuck with this forever. There are lots of procedures that do work. Again, stay in touch with your doctor, and stay in touch with us.

[curious]

#1075685

Hi Sarah,
I was diagnosed with TED 4 months ago, think I’ve had it for about 10 months now, and my thyroid’s normal too.
It’s in both of my eyes, the most significant symptoms I have are dry, red, irritated eyes (have to constantly use lubricating eyedrops) and swollen upper eyelids, and sometimes my eyes hurt as well.
I hear you on the self consciousness and self esteem stuff, and especially on the hating looking in the mirror.
Just wanted to say hi. Reading your post was like reading my own thoughts.

[lakeview]

#1075686

hi there
I am also euthryoid and have graves eye disease. I know exactly how you feel. I have had this condition since December 08… and it is not fun- I am just waiting for this to get better.
lakeview

[bprotel]

#1075687

I am new to this bul board but I am searching for info about the thyroid eye connections also. I had RAI 4 years ago and have had increasing episodes of red itchy eyes, blurrey vision and in general my eyes look terrible due to the redness. I really didn’t think there was any connections but I read the recent article in the foundation newsletter closely and now wonder if there is. I went to an Opthamologist recently who seemed thorough but pretty much dismissed me. It leaves me wondering.

[Ski]

#1075688

We can experience chronic dryness solely due to the autoimmune disease ~ our tears can become less viscous, more watery, and thus less effective in moisturizing our eyes. Some days, it doesn’t seem to make much difference, and other days, your eyes are exposed to many irritants (flourescent lights, computer screens, excessive wind), and they can be very uncomfortable. Oddly, when they get dry, they tend to produce even more tears, which are similarly ineffective in moisturizing, and so they produce even more tears. See if using preservative-free artificial tears (NOT get-the-red-out drops) helps at all. They are simply extra moisturizers, and when you buy them preservative-free, there’s no limit to how often you can use them. Under some conditions, you may want to use them every fifteen minutes. It also may help to buy thicker drops for nighttime, just to give some extra moisture boost while you sleep. You wouldn’t need the gels that the people with TED use, but a bit thicker eye drop may give you some relief. I hope that helps.

[bishop76]

#1075689

This is my first post. I am new to this site. I am 32 and was diagnosed with Grave’s almost 5 months ago. It is in my thyroid. In fact, I have a huge goiter growing out of my neck. I am going into surgery next week to remove it. After the roller coaster of changes and symptoms in my body, the one that has stayed constant is the pain in my eyes. I see about 5-6 doctors/specialist per week and and seeing an optoplastic doctor tomorrow for the first time. I was told today I may need plugs in my eyes. I am confident the swelling in my lids will go away. I know I have to wait some time before surgery, but I will have them done by a cosmetic surgeon. The lids do make me feel embarrassed, as well as does the swelling in my face and the ‘mini me’ growing out of my neck. The eye bulging isn’t TOO bad, but it is there. In fact, the bulging was worse, but has subsided to give way to the pain. I have to wear dark sunglasses while in my house, some days. It feels like someone threw acid in my eyes. I started steroid drops today, as well and been on rewetting drops for about a week. I was so excited to finally have my surgery since they originally said I couldn’t have it for another 3-4 months due to risk of dying in surgery, but now that my thyroid is constricting my windpipe, it must come out. I learned 2 days ago that the burning will not stop after surgery. My heart was crushed! It is the worst part of the symptoms, well, at least after they controlled the rest by PTU and Inderal. I am a smoker, but am quitting now, before my surgery. I read on the board earlier that some lady had 6 surgeries on her eyes after they killed her thyroid! I pray for her and hope that won’t be the case with me… ” title=”Sad” /> I am glad I found this site today, to talk with people that understand what I am going through!! Nice meeting all of you.

[Ski]

#1075690

Hello, and welcome!

The first thing you should know is that the thyroid disease and the eye disease paths have no relationship to each other, so treating one does nothing to help (or harm) the other ~ well (let’s get too complicated right off, shall we?) unless you have RAI, in which case there is a chance it can worsen the eye symptoms temporarily. You’re having surgery instead, so at least it shouldn’t make the eye symptoms worse, but it will not resolve the situation either. In addition to that, your chances of having very severe symptoms of eye disease are incredibly small, so try not to worry about that. For the most part, they have found that all of us with Graves’ Disease actually have SOME level of thyroid eye disease, but in some it is so very tiny that we don’t even notice.

Now, there are two elements to the eye symptoms you’re experiencing. The fact that we have Graves’ will always render our tears less thick, less effective. For that reason, we will always need to protect them from dryness to some degree. If you use preservative-free artificial tears liberally, especially in situations that are hard on your eyes (under flourescent lights, using the computer, out in a strong wind), you’ll be glad you did. The drops you use today will help keep your eyes more comfortable tomorrow, so try and use them every so often even if you don’t necessarily feel that you need them right that minute.

Thyroid eye disease is a completely separate disease in which antibodies attack the tissues behind the eyes (either muscle or fatty tissue, kind of depends on the age of the patient), and those tissues swell, which causes the eye to "stick out" because it has nowhere else to go. In some people, the fluid comes out into the tissues surrounding the eye instead of the eye sticking out, I’m not sure why. The best doctor to determine your status with Thyroid Eye Disease is an ophthalmologist.

If you are experiencing symptoms of thyroid eye disease, it’s not quite as simple as having surgery immediately. The disease follows several phases ~ a "hot" phase and a "cold" phase, along with a period of a little of each in between. If you have surgery while your eyes are in the hot phase (this is defined as a period with high levels of activity, bulging increasing and decreasing with some regularity), you risk stimulating the antibodies and experiencing even WORSE symptoms following surgery, which can be a real problem, because then your options for fixing that situation are more limited due to the prior surgery.

In any event, it’s impossible for us to say what you’re experiencing ~ whether it’s just dryness, or whether it’s actually TED. My first symptom, the one that sent me to the doctor before I even knew I had thyroid disease, was puffy tissues around my eyes (made me CRAZY) and it was just from the hyperthyroidism ~ the swelling lessened pretty rapidly once my levels began to drop. That was NOT thyroid eye disease. I did experience some symptoms, much later on, of thyroid eye disease, but my eyes have pretty much gone back to the way they were when I started. My story began a long time ago (first symptoms – ack – 12 years ago!), but that’s another lesson of Graves’ Disease ~ patience is important, nothing happens rapidly, getting sick or getting well. Once you know where you stand and begin treatment, just remember that you’re getting CLOSER all the time. You’ll get there. Glad you found us!

[bishop76]

#1075691

Thanks Ski! I do know about a lot of what you said. And I appreciate you writing since the posts of yours that I have read today shows how knowledgeable you are!! ” title=”Smile” /> At the moment, I think it is just the drying out of the eye. I had an MRI today and should know the results tomorrow. I am waiting to see what the oculoplastic says tomorrow. I have the tissue build-up around the eye, as you said you had. It is bad, even puffy into the eye corners going to my nose. Though, I thought they looked like Catherine Zeta Jones eyes and, before they got this bad, actually like them. LOL. I am really scared now about the surgery… I am trying to sike myself out of this feeling. And I am sorry you’ve had 12 years of this! I never even heard of Graves before I was diagnosed! All of this has happened so fast. Good to know that it won’t get much worse due to me having surgery vs the RAI. Thanks so much for that piece of salvation of knowledge!

[Ski]

#1075692

Thanks for the kind words, and I’m so glad it helped! I haven’t been going through BAD times for twelve years, that’s just the time that’s passed since the first step I took on this road ~ for the most part, I have felt pretty good. If you take the entire experience and picture it as one big pie, the segment that was "awful" was a really small slice. Since my levels came into the normal range and stabilized (many years back, now), I’ve really felt nearly normal. ” title=”Very Happy” /> Take heart! Information is power, and knowing what you’re in for is half the battle.

[rpdcad97]

#1075693

I was diagnosed with Graves in 1997 treated with RAI basically after that my numbers were in line I am taking 150mcg of synthyroid. Now I have developed Graves’s ophthalmology double vision, blurry vision, bulging eyes, dryness, resulting in my first orbital decompression in September 2008, then needing the second decompression in March 2009 which minimal positive results. Meeting with another ophthalmologist at the Mayo Clinic I had eye muscle surgery on three muscles August 2009, on both eyes helped with the correcting of my crossed-eyes but then I got twisted vision then I needed a second surgery to correct the twisted vision and double vision a month later and lucky me I developed scleritis of the left eye and Oh my Gosh the pain that I had with that makes childbirth seem like a piece of cake so now I am on an anti-inflammatory drug to help with that. I now still have double vision, extremely droopy lower eyelids and very swollen uppers, my left eye is now turns outward causing more eye issues Dr. now thinks I have Myasthenia Gravis which is a condition that attacks my eye muscles. Maybe I am crazy but I sure feel like if it’s going to go wrong it’s going to happen to me. I don’t drive, go out of the house much because I feel like everyone is looking at me because of how bulgy my eyes are, I live with lubricating eye drops, anti-inflammatory eye drops and the fear that I will have more surgeries that may or may not fix my vision. I am scheduled for lower eyelid surgery the end of October 2009 for my right eye then 2 weeks later the left. I just hope the inflammation is gone so they can at least try to correct my droopy lids and that surgery is going to interesting as I’ve been told they harvest cartilage from the roof of my mouth to put in my lower lid, great a hole in the roof of mouth and eye patches sounds wonderful doesn’t it. Sorry if it sounds like I’m whining but I have very few people who can understand what I am going through.

[Ski]

#1075694

I met a lot of people at the Graves’ Disease Foundation conference this weekend who could sympathize, believe me! Once they get home and start posting again, you’ll see some very empathetic responses. Without a doubt, the eye symptoms are the most difficult thing to deal with, especially emotionally. I really hope you can find a way to get some dark glasses and join the world again. That’s really the hardest part ~ seeing people lose their connections with others. It’s SO important! Please let us know how it’s going.

[lulu72]

#1075695

Hi Everyone,

I would have to say that the eye disease is the hardest part. I was diagnosed two years ago and I seem to be having more problems with my eyes now than in the beginning. I am seeing an opthomologist who specializes in Grave’s disease. My lacmiral glands are enlarged and he doesn’t know why. He did an MRI and a CT scan and nothing showed up except the enlarged glands. He has me on artifical tears and that helps the discomfort sometimes. My lids are puffy all the time and my eyes hurt often. So I want to know if anyone else has enlarged tear glands and if anyone gets headaches from this? Also, on and off I get this clear, wavy line that outlines my eye. It doesn’t change my vision, but i can see it out of the corner of my eye and it is annoying. It lasts from 5 to 20 minutes and I usually get a headache afterwards. It is hard to explain, but if anyone else has experienced this please let me know. I am trying to figure out if all of this is related to Grave’s or if something else may be going on. Thanks!!

Lulu

[Ski]

#1075696

The "wavy line" may be the visual aura that can accompany migraine headaches ~ some people get them along with the headache, some as predictors that a headache is coming. As far as I know, they have no direct relationship with thyroid eye disease. I’m lucky, somehow I get the aura with no headache (PHEW). I’m not sure which is the right doctor to ask about those, so I’d start with my general practitioner, if I were you. I find that it helps to pop 2 aspirin when I first see the aura (most times it begins as a sparkly dot in the middle of my vision, then it grows into a circle with normal vision in the middle and a sparkly rim, then disappears when it’s too big to see), but you should get a recommendation from a doctor. I know there are true migraine medicines now, and if you are getting migraines often, you may want to take advantage of those.

Not sure what to say about the lacrimal glands, please do let us know what you find out in the end! New info is always appreciated….

[Author]

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