I was referred to an ophthalmology consultant for something completely non-thyroid related. I attended my appointments, saw a consultant and was told that everything was normal, my vision was good, they couldn't find anything wrong with me and after my next appointment they expected to discharge me. Initially they were concerned that I see trails and blurry edges (all very minor, doesn't affect my sight, reading, driving, etc, and I only have a very minor prescription for reading) but couldn't find anything wrong and the consultant seemed to think it was maybe age-related but all benign.
I arrived last week for what I expected to be my last appointment and he started talking about 'thyroid eye disease' which had never been mentioned in the past. He skirted around it and kept telling me I was 'doing very well' which I thought was odd considering they told me there was nothing wrong with my eyes. I asked him to clarify that nothing was wrong as he had continually been telling me all along and now out of the blue he tells me I have ted.
I'm going to write to him for clarification because this doesn't seem right to me. It's as though there's been some kind of mixup. I haven't had any letter from him or any official diagnosis before today. It just seems weird to me.
I googled ted when I got home and apparently I'm supposed to notify my insurance -?? Does this mean I shouldn't be driving? Is the consultant meant to provide some kind of documentation to say whether I can drive or not? (He more or less said I had perfect vision before this bombshell.) If there is some kind of protocol for this I don't know how it's meant to work because he doesn't want to see me for another year. I'm completely perplexed by the whole matter.
Thanks in advance. x
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puncturedbicycle
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Don't know for sure but I think it is probably only if you have full time double vision that you would have to report it.
If you are not getting that then I imagine you are ok especially as your man isn't doing anything about it.
I know I've got mild TED, a bit blurred if I read for too long, especially if i am sitting reading on a bus, very little double vision and only if I lie on my back and watch the TV which is on a shelf at my feet so it is at an odd angle and above me - not a good position for viewing. I have got very dry eyes, so dry they water at times but other than that, I wear glasses as I always have done and have no problems driving day or night. I told my endo I had dry eyes, occasional blurred vision and double vision depending what position I was in for reading and TV and he wasn't remotely interested.
I also had my visual problems quite a while before I was found to have Graves.
If he isn't doing any follow up work then it sounds like you must be ok.
Did he prescribe eye drops or anything to make your eyes feel more comfortable?
I think you are right to write to him for clarification. There are so many degrees of TED, on the other hand if you are regularly driving behind one and a half vehicles at a time then driving might not be the best idea.
Thanks Liz. Sorry to hear you've got uncomfortable eyes too.
Do you drive? And if so have you been advised about notifying your insurance?
It's funny - they keep referring to it as "double vision" and I keep saying it's not double vision, it's just a shadow at the edge of things (and I sort of thought everyone had it). And they keep telling me that my vision is excellent and my eyes are very healthy, so I don't know where this 'diagnosis' has come from. I know it doesn't interfere with my driving but I want to make sure all my ducks are in a row in case there was an accident. Not that I go around crashing into things mind.
I'm sorry, I don't understand your last sentence - "if you are regularly driving behind one and a half vehicles at a time"? It's probably obvious and just went over my head.
I just meant that if you are see the car in front of you and half of it again when you drive then that might not be very safe.
My version of double vision is just that I see an extra little bit of the image or probably a shadow as you describe it, I only get it when I watch TV and I only notice it when the credits roll or there is writing on the screen. Sounds like it might be what you see, I don't see two of anything - just a sort of 'shadow' image of it. If I sit reading for a long time, my bus journey to the nearest big town tales an hour - a lot of reading time - if I read for too long I feel blurred for a few minutes, increasing the print size on my kindle helps stop it as does looking out of the know regularly.
My eyes are tip top apart from being slightly dry but I've always have had a tendency towards dry eyes so that's nothing new.
I'm sure your consultant will say you are fine to drive.
I am confident I'm okay to drive and there is no reason why he shouldn't say the same (for all my other visits he has told me there is nothing wrong with my eyes!!) but it's more a matter of protocol. I'm worried about accidentally invalidating my insurance if I have left an i undotted or a t uncrossed. So it's more a question of the bureaucracy of the thing and making sure that I do whatever I'm supposed to do.
The shadow thing reminds me a bit of when you look at an image for a long time and then you look away at a blank wall or something and you see a shadow of the original image. Like you, there is a little edge of everything I see that is a tiny bit blurry or has a light shadow, similar to when I read without my glasses. I don't see two of anything.
Ah, the kindle! I love it that if I'm tired or if the room is a bit dark or if I'm too lazy to get up and get my glasses I can just increase the print size. It really helps when I'm reading late at night (with a head torch!) and my husband is asleep. And I don't have to get up to turn the light off.
Sounds as if he has gone off and thought about your symptoms - which may not have had anything to do with your original problem (what were you referred for in the first place that you didn't have. Do you know? ) and thought 'Aha - TED!'
My original problem was a registrar who insisted my muscle weakness could not have been caused by undertreated uat(!!!) so referred me for a whole huge series of tests for something related to the thalamus (I can't remember what it was called). When I eventually saw the consultant endo he dismissed the whole thing and bumped up my t4 but by then I'd had loads of tests and referrals (thanks taxpayers!). I did stick it out with the eye referral because everyone seemed so concerned about what they were calling double vision, and my vision has deteriorated noticeably and I wanted to see if they could figure it out.
Eye guy was a bit of a t*t. When I asked him to clarify that everything was okay he said "Why, do you want something to be wrong?" And then told me I had ted, the @rse. So I was less inclined to ask the questions I might have asked a person with a different approach.
I think your theory is very plausible, though this is my third visit in a year, which seems a long time to mull this over, considering he knows I have uat. And he said it as though he thought I already knew, so it seemed like maybe he wrote it down at some stage but neglected to tell anyone.
Got a friend whose daughter has MG, her optician noticed it, her muscles were weak so I can see how someone might think weak eye muscles = MG but not if you had thyroid problems that you were already aware of.
Weird how you get sucked into the hospital system. Another friend is finding that the department treating one part of her body doesn't seem to want to link to any other parts of body that could possibly be causing her problem - she has been having test after test since December.. Trouble is there are huge time gaps between the tests - fortunately they don't seem to be finding anything wrong - hate to imagine what would happen if there was (is) anything drastically wrong when it is all so slow.
Yes, it all goes very slowly. The registrar reduced my t4 down to 25mcg and it was another three months before I saw the consultant, so a delay of five or six months between the referral and anything getting done. I hope your friend turns out to be okay. x
Wow, thanks, that was just what I was looking for (and I'm sorry to hear about your eye problems of course).
And yes, I know what you mean. I have a friend who has retinitis pigmentosa, bless him, and he drove until I suspect he did something that frightened him (he didn't tell me that but he has a lot of chutzpah so I assumed something bad had to have happened to make him hand over the keys). He has had quite severe night blindness for a while now and I fear his vision must have been awful while he was still driving.
Out of curiosity, how did you know you didn't have to tell your insurance company? I was giving this more thought and wondered whose job it is to tell you these things. Whose responsibility is it to tell you you need to tell your insurance? (Usually everything is down to the driver, which is why I got so paranoid.)
My ophthalmologist told me. I did have a couple of occasions when it was so bad I chose not to drive but mostly I did just about cope.
Its very difficult when your eyes physicallying can't move left or right, when you've got no colour vision, can't judge distance, have a constant haze and can only get rid of the double vision by shutting one eye which is virtually impossible because you can't actually close your eyes at all (you have to tape them shut at night to get some relief)
I did come very close to being taken off the road but managed to maintain enough vision in one eye to scrape through the tests but it's quite alarming how bad they will let you loose in the road.
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