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Hello – Sorry you are dealing with all of this! Once the eye disease runs its full course, it is *usually* gone for good. (Although there may be residual issues such as proptosis /bulging or double vision that need to be surgically corrected). However, in rare cases, the eye disease *can* flare up again. One theory is that a relapse is more likely if the patient ends up hypO — or goes hypER again. Again, this is just a theory — but hopefully, you are getting to the point where your thyroid levels are stable again. And it would also be a good idea to establish a relationship with an ophthalmologist who can see you through this process.
There are plenty of folks here who have been through the eye disease, so feel free to ask questions. Best of luck!
Thank you Kimberly. I saw an ophthalmologist in November and have another appointment in May. She told me to use lubricating eye drops and lacri lube. She also took eye measurements. So I guess that’s all I can do.
I have had Graves’ since I was 19 (I’m now 54). It has gone into remission several times with medication, but in early 2005 it came back with a vengeance and I finally had RAI in December of 2005. Everything seemed to go fine, went hypo in 3 months and was put on Synthroid. My TSH has really never stabilized (readings from .63 to 17). In January of 2009 my eyes started bothering me and I soon discovered I now had Graves’ Eye disease. Fortunately it has stayed in the mid-moderate stage. I have been told this could last for years before it burns itself out. For me the eye disease is the worst part. It changes the way you look, sometimes I hate to look at myself in the mirror. I thank God for the last 13 years I have had a wonderful husband who has stuck with me through all this.
I was wondering if there is anyone out there that had Graves’ Eye disease run its course and then reoccur later in life. I really don’t want to go through this again!!!!
I know how you feel. Having our appearance change due to the eye disease is a major emotional issue for many of us. One thing I discovered, that may help you (I hope so, anyway). I found that when I smile, I don’t look as "bad" as when I don’t smile. Give it a try. It’s a small thing, but knowing that when I’m happy, or laughing, or smiling that I look more like my old self allows me to relax a bit and not feel so self-conscious. I started getting comments from doctors about how much better my eyes looked, too. Some of that, over time, was due to the fact that some of the symptoms remit when we go into remission with the eye disease, but I am pretty sure that some of it is due to me being happy again, as well.
Wishing you a good day,
Thanks Bobbi. I do try to smile especially out in public because my husband says otherwise I look kinda mean.
” title=”Smile” />I too was dignosied with TED in Nov 09. I hate the way I look on top of that I had to start wearing my glasses, my contacts were not fitting my eyes correctly. It seemed the glasses made my head hurt more with the swelling and eye pressure. I was given three options wait and see, steroids or radiation. I’m fat enough didn’t need the steroids so I chose radiation. Friday Feb 12th was my last day, I had ten days straight of low dose radiation, WOW what a hugh difference it has made. I still have some vision problems and lots of tearing but no swelling, I almost look normal. I was told that it takes a month or longer for this to work, can’t wait for the final results.
One thing to remember about steroids and radiation ~ they are temporary fixes. If you are in the active phase of TED, they will help only so long as you are using them. The radiation does take some time to show its full effect, but if you do not continue treatments, the swelling is likely to return. Another thing to remember is that steroids and radiation have not been proven to have any effect if you have moved into the cold phase, where no active changes are occurring.
The eye disease part of Graves is extremely demoralizing psychologically, yes. Some "Gravers" avoid it, but I know people for whom the eye part occurred many years after the onset of Graves, or many years after the treatment. (Graves itself, and the eye part of it, seems to happen more during hormonal changes in a woman’s life, – puberty, pregnancy, menopause. My Graves and GED happened while/because of pregnancies).
I had RAI in December 2005, too, – but my GED started just prior to RAI and kept going on after, for a year. That was the time that I don’t want to repeat, ever. The wondering, how bad I would end up with. The drastically diminished social life. I think for many people this time (of active GED) feels like the black hole in their lives.
But, the active stage does come to an end. You will stop feeling any pain and sensations. Your eyes will start feeling just like before GED, when you didn’t notice them (of course, depends on how much the lids are affected and the optic nerve…) Personally, I didn’t have any optical nerve involvement, or double vision. But looking in the mirror for a year was just as devastating. Well, after that year, too, since the eyes stopped where they stopped after the development, and that was not pretty. Orbital decompression (and other lid surgeries, as needed) is a savior for this disfigurement.
Post-RAI and post-GED, I feel pretty good, I don’t think about my eyes anymore. The level of self-consciousness is gone from 100% down to 5% (just because my other eye is still not done yet, but its proptosis is much smaller). I feel like GED is gone for good. I just don’t feel my eyes. And I don’t have any strict Graves diet, save for common sense healthy food. But, during the active stage I tried to stay away from anything "toxic" (no fish, no fish oil, no household chemicals). I have started a job, and don’t feel like hiding anymore. But it’s been 4.5 years since the onset of GED, and more than a half of that time is "lost life" for me. I don’t remember much of those years. My kids turned from toddlers to school children during those years, and I don’t remember much (I’m 46, an older mother). GED robs you of the capacity to enjoy life. But it does come to an end!!!!!!!!!!!!!!!
I am new to the board …i was diagnosed last year with graves disease …i also have the GED …but it started pretty much the exact same time that i was diagnosed…and i was reading these posts and 1. I am glad i am not the only one self-conscious of my eyes bugging out…but 2. it goes away? It stops ??? My oldest sister also has graves disease she had the RAI and her eyes got worse..to the point they bulged out so much her eye lid fell behind her eyes….so it freaks me out to have the eye problems…i’ve been diagnosed since dec 08 and my eyes hurt ..i get double vision..i’ve never had to wear glasses in my life but i do now…although it doesn’t seem to help much…i am also very sensitive to light, sometimes just looking at the computer screen hurts…so i guess i’m blabbing but my question is …do these side effects go away???
snapshot wrote: my question is …do these side effects go away???Welcome! Yes, many patients do see an improvement in their eye symptoms once the eye disease has run its full course. (Which can sometimes take 2-3 years). This is one of the reasons surgery is usually postponed until patients are in the “stable” phase, where symptoms are not getting better OR worse. Some patients will still have residual issues (like bulging or double vision) that need to be surgically corrected once this stable phase is reached – but other patients will see enough improvement that surgical intervention is not necessary. It’s a good idea to get an experienced ophthalmologist on your team early in the process, so he/she can monitor your progress.
Snapshot- the short answer is Yes, these "side effects", or sensations, do go away. — When the active stage is over and the "cold" stage starts. How does one know when she/he is out of the "hot" stage and in the "cold" stage? When there are no gritty feeling, no tearing, no sensitivity to light/wind/air conditioning etc. It takes anywhere from 18 months to a few years to reach that stage.
However, it’s just the "feel" part that will disappear. Your eyes may still look bulgy, or slightly (marginally) improve after the hot stage is over. Only then, if you are so inclined, you may improve your looks surgically. Some people prefer not to take that route, and that’s fine. Surgery is not mandatory, if there is no threat to your vision. And, people just plain may be scared of surgeries, – I was, to the tune of a few years until I got the courage to do OD. Usually, after OD, people say, Why didnt’ I do it earlier. But the fear is also understandable.
Well my DR suggested I join a support group and there is none in my area. So here I am …. I too had radio-iodine for the first part of this disease in 05. The Hyper…… I regret that decision ever since. But it was behind me and I had learned to accept a new body and way of thinking of myself.
There was a day just around the beginning of Dec 09 that felt like I had a sudden loss of vision in my right eye. So I started paying attention to my eyes. I noticed swelling, more pronounced in one, headaches, overwhelming tiredness. Finally 2 weeks later I ended up in the ER because I became frighted over the distorted vision …. no stroke, no infection…ER sends me to the eye specilist.
GED is the diagnoses. I thought that when they nuked my thyroid I was done with this disease…. I guess not.
So now I can not drive at night and even some days are scarey. I can’t read for any length of time, bright lights, flouresent is the worst. If I have a busy day it takes me 2 to recover. I have been put on disability, that’s a whole other subject. I can not take steroids, for I would go to jail for murder…..seriously.
So I wait….
Hi, and welcome to our board, frefluterb.
Unfortunately, the eye disease can crop up at any time — some folks get it long before their thyroids go wonky. I had it many years ago, and it is frustrating and frightening to have to wait and see. That is, however, the typical approach our opthamologists take. They watch it. If it gets severe, there are things that can be done besides steroids. Radiation to the eye muscles is sometimes used as a temporary measure to reduce swelling. In severe cases, doctors will operate to open up more room for the optic nerve. But in a lot of cases, nothing needs to be done but wait it out. That is what happened to me. And once the hot phase subsided, my symptoms gradually went away, until things are almost back to pre-disease normal. I still get double vision if I am very tired, but that’s about it.
Wishing you well,
Wow, I am so glad I found this site. I was diagnosed with Graves in Sept 08 followed by RAI in Oct 08, I kept chalking all my symptoms up to hot summer in Oklahoma, must have a stomach bug, post-meopausal so I have dry skin, etc. Obviously my fatigue got so bad I couldn’t lift myself off the floor and decided it was time to see a doctor. Within 24 hrs my doctor called with the diagnosis. I thought once the radiation was done I would be okay if I stayed on my meds. In April 09 I went to work, turned my computer on and 3 hours later couldn’t distinguish 5, 6 or 8. Scared me to death, I thought I was having a stroke or brain tumor. Went in to urgent care they sent me for brain MRI which was negative-but still had no answers. Went to optomotrist who diagnosed TED and called my endocrinoligist that day. I had radiation on my eyes in May 09 as the swelling was so painful I couldn’t do much. It has been almost a year since my "thyroid storm" . The opthamalogist says my eye swelling is significantly reduced. But I still have alot of tearing, sensitivity to light and sun, double vision, and my left eye drags behind the right so I’ve been unable to read a book for the last year. Has anybody had the surgery to correct the eye muscle or lid retraction? Am looking for a second or even third opinion, I only have one set of eyes and would rather have what I have than lose everything. Would appreciate any thoughts or experiences. Thanks so much!
MBSorry, just stepping in quickly to say that when Thyroid Eye Disease rears its head, it is in no way a "thyroid storm." Thyroid storm is a separate condition that comes on due to uncontrolled hyperthyroidism, it is life threatening, and it has ONLY to do with your thyroid. TED symptoms can come on rapidly, but they are not related to the condition of your thyroid. It’s a separate disease process.
MANY people here have had the corrective surgeries associated with TED, so you will surely get lots of responses on that. The good news is that a majority of patients never need the surgery, as their eyes improve somewhat at the end of the disease process, removing the need for surgery. While your disease is active, see an ophthalmologist (not an optometrist). They are the real experts in this field.
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