[Ski]

#1064977

We’re so glad you found us! Sorry you need to join the club, but it’s good to have a community of supporters!

I can’t give you much of a response right now, running to the next thing for today, but I wanted to make sure your post got approved/posted so you could gather some responses.

Things WILL get better!

I notice you posted twice, I’m going to delete the other message ~ it’s not a "bad" message, just a repeat. ” title=”Very Happy” />

[airboss]

#1064978

Thank you Ski!

[Sue_Conard]

#1064979

Hello there "Lost"!! You’re not LOST any longer, you found US!! This is one of the most informative websites you’ll ever find for our common thread, GD and TED. I too have TED (thyroid eye disease). When I read your post, I relate. I was scared to death when I was first diagnosed b/c I love to bead, read and sew. I’ve been officially diagnosed since Aug. ’08. I remember days that I cried b/c I could not thread a needle and had to have my son thread it for me. I remember standing in my kitchen attempting to write a grocery list and every time I looked down, I saw 2 of everything and it was so blurry I couldn’t write on the paper and my heart would pound. I remember crying and the pain in my head got worse. I remember burning my hand with hot water when I went to make a cup of hot chocolate b/c I missed the cup and didn’t understand what was going on. I remember waking up in the middle of the night and closing one eye, opening the other and everything was GRAYED OVER in one eye and so blurry I couldn’t see.
Every morning I wake up with double vision and have since Aug. 08. What I couldn’t understand is "why" and what could be done. After understanding more about TED from this wonderful website, a lot of research, 22 months, 3 IV solumedrol treatments, 20 prism glasses, 10 days of radiation to my superior rectus and medial rectus muscles in my right eye, my vision is TOLERABLE. My GD TED specialist explained that the reason for the double vision in the morning is from laying flat in my bed at nighttime. Apparently the cranial area fills will fluid during the night while lying flat and until it drains from standing upright, I experienced the double vision.
Where I am now is "living with TED" the best I know how. There are surgeries available to correct your vision, but I’ve opted NOT to have that surgery. The other treatment my dr. recommended has personally helped tolerate my vision. I have double vision EVERY DAY, EVERY MORNING, but if I patch the affected eye for approx. 1 hr. per day, I have perfect vision (a little blurry now & then) where I can function to work, to bead, to sew, to enjoy life once more. The most difficult part for me has been "accepting" who I am now. I don’t like having anything control me, including a disease. I feel limitations with who I currently am now, but MUCH HAPPIER than I was 22 mos. ago!!
What I’ve gained through this disease on this website are FRIENDS, SUPPORT and some of the most knowledgable facilitators that have walked your walk and are HERE to tell you that things will get better for you with the right treatment. There were many nights of frustration and heartache when friends I’d never met before on this website lifted me up and made me feel whole again. Best wishes on your new GD/TED journey…we’re here for you!!

[airboss]

#1064980

Thank you for your reply Sue,
I hope you will feel even better than you do now!! You sound like you know what you are doing.

[Bobbi]

#1064981

I can try to answer some of your questions. First off, the eye disease runs a separate course from the Graves. One small study, almost twenty years ago, seemed to demonstrate that RAI could cause a "temporary" worsening of the eye disease symptoms in about 16% of the patients studied. That study has not been duplicated by other researchers, so its validity is in question these days. That same study, however, showed that a concurrent course of steroids with RAI eliminated the temporary worsening of eye symptoms, so if there is significant eye disease our doctors may still prescribe steroids if the patient is to do RAI.

There are several sets of muscles which must work together in our eyes to move the eyeballs in synch with one another. When we get TED, some muscles are affected more than others. And it varies from one person to the next, as to what type of visual oddities will occur. Typically there is a hot phase during which we see symptoms develop and worsen. Getting "some" symptoms does NOT mean, however, that you will get horrid eye disease. Some people get minor symptoms which go away over time. Whether or not things return to normal depends upon how bad the disease becomes. I was told at one point in my hot phase that the likelihood of complete remission (i.e. going completely back to normal) was not likely because the eye muscles had been too badly affected. That said, when the hot phase ended, and the symptoms started to remit, I did get a huge reduction in problematic symptoms. My double vision went away except for times when I am very tired, or sick, or temporarily hypothyroid. So, the key is to be aware of issues, but not to panic.

The thing I noticed though, as you were describing some of your problems is that you are at the age where many people develop a need for glasses and/or bifocals. Somewhere around the age of 40 the lens of our eyes becomes less flexible. We become more far-sighted. It is normal, and it happens to just about everyone. So, some of the symptoms that are plaguing you may not be TED related.

Similarly, bad night vision can be caused by cattaracts (sp?). Many of us develop them, or start to see them develop at about this stage of life, too. They may not be bad enough to warrant the surgery, but they might be present, and causing vision problems particularly at night.

Anyway, the main thing is to find a good ophthamologist and work with him/her. I do hope you find answers to your issues soon.

[airboss]

#1018455

Hello everyone,

Firstly, I would like to thank everyone who has posted their story on this site, as well as the people who created this forum……in the face of many unanswered questions, sites such as this has done a world of good for me in accessing my situation….THANK YOU!!

[snelsen]

#1064982

Hi, of course you are concerned @ your job and your vision. I went the same road you did, being told I needed numerous paitd of glasses, when the real problem was TED.
To talk only about vision for a minute. I suggest that you find a good neuro-ophthamologist, get a baseline exam. All through this TED experience, I continue to go to him. They do visual fields, plus carefully checking your optic nerves.
I have been anxious waiting UNTIl I can have strabismus surgery, or eye muscle surgery. I have had my eyes measured all along by another eye doc who does strabismus surgery. But we can’t have that until our eyes are as damaged as they are going to get. All people I know who have had the surgery, have had significant improvement, if not outright resolution, of the double vision. Because our eye muscles are fibrosed (thicker, do not expand and contract as they are meant to do when we look different directions) by the antibodies attacking them they will not get better on their own. What the strabismus surgeon does, is to move the insertion and origin of they eye muscles so that we can regain normal, or almost normal vision, and get rid of the diplopia. My best gaze is downward. I cannot look straight ahead, or up without double vision and discomfort. So the main move will be on the muscles at the bottom of my eyes, although the oblique (looking up sideways and down sideways) are a little bit affected. I am counting the days and the minutes until I can have this surgery!
I had had to wait until my eyes are no longer changing (as determined by many appointments over the last 1.5 years.)
So-for TED, you need a eye doc who is a neuro-ophth doc, and that doc would be able to recommend you to a pediatric ophthamologist (the only folks who do strabismus surgery, you don’t want anyone else.) After both appointments, plus your history (of how you see your eyes changing a lot, or not so much anymore,) you would be ready for strabismus surgery.
I will be happy to tell you of my experience, for I hope to have this done as soon as possible. The past two years have been total hell with TED. I understand about job, for I finally did resign because I could not read all the moniters at work. I am much older than you, so retirement was an option, but I sure hated to quit work.
I am encouraging you to re-consider the eye muscle surgery, for that probably is your ticket to improved vision.
When I first went to the eye doc who diagnosed the TED by looking at me, plus having an orbital CT (have you had one? that will tell which muscles, and how much, they are affected.) he held up two fingers and five fingers. He said that this whole process would take as much as two years, and I could have as much as five surgeries. Because I DID have optic nerve damage, I had an OD orbital decompression, which is done to relieve pressure on the optic nerve, and also for cosmetic reasons and medical ones, when eyes are really bulging out. I am ready for more than one strabismus surgery if necessary, for they do the best they can with the measurements to place the muscles to help the most. Sometimes it requires a repeat. I am fine with that. After that, with all the adjusting, eyelid surgery helps our poor retracted eyelids, which is also a part of TED for some people.

Re having and endocrinologist for Graves, it definitely should BE an endocrinologist, who follows you carefully, with labs TSH and T4, plus being in touch with your symptoms. Are you ok now with your thyroid? Feel neither hypo or hyper? It is the endo who should be following all this, not the eye guy.

Re CSO, it is true that this condition happens, mostly in males, right in your age range, and that it can resolve.
I imagine the retinal specialist did the appropriate tests to give you that diagnosis. I rarely recommend Wikipedia, but it does have a nice summary of CSO, you may know all of that already. But is true that the CSO symptoms can confound the picture of TED.
I think I have written enough. My heart goes out to you, and am so glad you are back with us. I don’t know what I would do without this board. Having said that, as you said, you have big things to think about because of your job.
To my knowledge, surgery is the treatment for strabismus, double vision, not radiation, and would want to learn much more about that subject. Strabismus surgery is done all the time on little kids. It is a relatively simple surgery for the right surgeon, and I am happily counting the days and minutes until I can get it done! I have waited two years to get to this point!!

[Kimberly]

#1064983

airboss wrote: If I ever become hyperthyroid again….will my eyes go screwy again as well?
Is it true that surgery is not advisable unless double vision exists in a forward gaze?
I have noticed that I have gained a lot of weight in the past week….have I gone hypo?? Will this make my eyes worse??
I have also noticed that for the past year or so….my brain is not what it used to be….I cannot remember what I read, nor am I able to access my memory as well, cant seem to think well….will this change or is this they way it will remain?

Hello – I wanted to address a few additional questions…

I’ve heard one theory that being in a hypER or hypO state can affect the eyes, so you definitely want to get your levels checked regularly. The good news with TED is that once it has run its course, it is pretty rare (although not completely unheard of) for patients to have to go through another cycle.

Yep, many of us struggle with concentration issues, which we often call "brain fog". This should get better once our thyroid levels are normal, but I still find now that if something pops in my head, I’d better write it down right then…or it might be lost forever. ” title=”Very Happy” />

If you do a search for "weight" on this site, you can find that many of us have struggled with weight issues following treatment. It’s not a sure sign of hypO, but if you haven’t had levels tested for a while, it might be a good idea to get checked.

My understanding is that the goal of eye muscle surgery is to ensure that the patient has an improved field of vision on forward and downgaze. Some issues with lateral and upward gaze may persist.

Hope this helps – best of luck!

[snelsen]

#1064984

Just a small comment about the eye muscle surgery. If all of the world were below me, on the floor and the ground, my vision would not be a problem. That is cause the muscles that allow me to look down, read, etc., have not been affected by TED.

In my case, the muscles most severely fibrosed (much larger, aren’t elastic anymore) are the inferior muscles.
so the eye muscle surgery for me, will be to move the inferior muscle, to allow me to look directly at someone, and look up at least 40 degrees more than I can at this time. So for me, most of the muscle moving will be on the inferior (bottom of the eye) muscles. I am excited to have this surgery, and will be sure to post all post op progress.
Another person might have the superior muscles affected, which limits the ability to read, look down at the ground, etc. etc.
So the surgery is based on the muscles which have been damaged by the antibodies. This can include the muscles that allow us to look to each side of our head. I have instinctively learned to turn my head to see sideways, but for a while, I did not realize that my visual field was not full. Not too handy when looking both ways for cars, so people need to be very aware of that.

[Sue_Conard]

#1064985

Hello Lost…what I’ve learned from this site is that every person is "individual" on how this disease affects their daily living. What I can tell you, is that this is a MONSTROUS disease to endure and we are here to support, listen and help in any way we can. As you can tell, my treatment has been very different than Snelson’s on this site. When I was in my hot phase, my doctor was very aggressive and I allowed him to do whatever was necessary to take the pressure off the optic nerve and to help my vision. I believe, b/c he was aggressive, that my vision is "tolerable" at this point. My dr. also recommends strasbismus surgery, but I too have learned to turn my entire head on my downward gaze b/c of the muscles the antibodies have affected, to turn my head when driving and there are days, when I’m not tired, that I can control my dbl. vision by looking way up and then bringing my eyes back down. It’s exactly what Nancy says in her post.

It sounds crazy, but my dr. is amazed I have this much control and understands that surgery will be my last resort. The reason I don’t want to have surgery is b/c you can have several different surgeries b/f your vision is perfect again and given my lifestyle, I choose to work around the damage that has been done. What I don’t know, and maybe someone can answer this for me on this site, is how a dr. can tell how much damage that’s been done to the muscles once you’re in a cold phase. Would a CT scan show this or is this something that happens with the measurements b/c my measurements change every month, depending on what my eye muscles choose to do the day I’m at the GD opthalmologist.

I agree with SNelson too …you MUST obtain a CT Scan and find the BEST Neuro-opthalmologist in your area. I was blessed, in that, I found an eye specialist that specializes in GD patients too. He LOVES treating and understanding how each TED patient is different and marvels in the research for this disease. My eye dr. is WONDERFUL and his wife goes to the same endocrinologist I do in my area. Good medical care is very important with this disease…I changed endocrinologists 3 times b/f I found the right one for my treatment. Please keep us posted…no one wants to lose their job in this economy, but in order for you to maintain and keep your wits about you through this diagnosis, finding the right dr. in your area that understands TED and all the treatment available for you is so important!!

[Kimberly]

#1064986

Sue Conard wrote: What I don’t know, and maybe someone can answer this for me on this site, is how a dr. can tell how much damage that’s been done to the muscles once you’re in a cold phase. Would a CT scan show this or is this something that happens with the measurements b/c my measurements change every month, depending on what my eye muscles choose to do the day I’m at the GD opthalmologist.

Hello – someone who has been through the eye surgeries might be able to add something here, but from the book I have on TED, the primary diagnostic tests have to do with observation of the orbits, as well as checking one’s vision under various circumstances (for example, following a penlight with one or both eyes covered). There is also one test mentioned that is done under local or general anesthesia, where the doctor physically tests for muscle restrictions.

I’ve seen images of patients with TED, and you can see where the eye muscles are enlarged, but I’m not sure if this was done via CT scan or some other imaging technique…and I’m not sure if/how this is used for diagnostic purposes.

[airboss]

#1064987

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[airboss]

#1064988

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[mamabear]

#1064989

Crazy is so underrated…ya know it CAN BE cool ! ” title=”Very Happy” />

Good to hear from you and I am so sorry that you are dealing with this. I have some info but not sure how it will help except show you a similar situation BUT without the graves involved.

My ex husband was having issues with his eyes when we were married. Around 1995 he came home from the dr. and said he needed glasses and he got them. I was dumbfounded. I wear glasses, needed them for years before finally getting a pair at age 14. Ex never needed them or so it seemed, he said once he got them his eyes seemed to be better and no more headaches.
I left him shortly after that but several years ago he was telling me that he had gotten new glasses and something about prisms in his glasses and then finally the dr’s said that he had strabismis and he was born with it. He never knew he had it and swore he didn’t have any issues with this eyes.
He had the surgery and he seems to be ok now.
The point is I remember him complaining every once in a while about headaches adn stuff but he never associated it with his eyes.

Ex does not have Graves disease or any thyroid related disease and never has. This was just strabismis. He had shingles about 10 years ago and I am not sure if this is what triggered the strabismis or not but thought I would add that as well for you to know.

Something usually Triggers graves disease well maybe your graves disease triggered the strabismis. I’m not an expert and I know there are serveral who have graves and strabismis but my ex never had graves so maybe it’s a "trigger" thing.

I hope this helps

[genuinruby]

#1064990

Hi Airboss, I am glad to see your latest post, when you wrote your first post, I felt a kinship as my eyes were weirding out like yours. I had surgery 8 months ago, and I feel much more stablized vision-wize. I feel a loss, because I miss my perfect vision. I have double vision on the up-gaze, so when lying in bed I always see two lights on the smoke alarm. I now have 4 pairs of glasses with 4 different perscriptions, and I ofton have to swich pairs more than once in a day. Because sometimes my vision will change several times a day. Sometimes the same pair will be good for a few days in a row. I cannot find a rhyme or reason why. Like you, the doc’s say it looks good from their point of view. I have noticed that as I have been going thru the balancing act of getting the thyroid replacement meds correct, that my eyes are a good indicatior as to how my levels are. Too hypo -I have issues, too much synthroid and I have issues. My biggest challenge is communicating to the eye docs who can’t seem to understand or explain why my vision changes many times in a day. Hang in there.

Ruby in Reno

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