What does it feel like to have thyroid eye disease?

I'm 19, my mum has hypothyroidism and I'm being investigated for thyroid eye disease. I have been having tests for years now to find out what's wrong with me and for the first time I think TED seems to match me quite well but its hard to tell from a list of symptoms so I was wondering if someone can tell me how their eyes feel with this disease and how they got diagnosed. I know that they are only looking at mild thyroid disease because there are no obvious changes to the appearance of my eyes and I think that makes it harder to diagnose. Besides my eye symptoms I have extreme tiredness and long term chronic constipation. I have had a basic thyroid function done several times but the only result I have got on me is TSH:3.5 (0.2-5) t4:19 (9-24)

The problems with my eyes started 2 years ago where it basically felt like I had really bad eye strain, they hurt and felt incredibly uncomfortable and weak. The also feel stiff and it hurts to look up,down and sideways and I do feel there some sort of pressure behind them. Another weird thing is that my friends are always telling me to stop zoning out because sometimes my eyes feel most comfortable just staring at something... I went to the opticians and they said that they were just dry and gave some drops. After a year and constant visits to the dr I finally got to see the eye specialist who have said that I have mild blepharitis and one eye wasn't producing as much tears as it should. I got plugs put into my lower lids to help with the dryness. Theres just a few things that haven't made sense to me and the dr's and that seems to be that my eyes feel so much worse than they appear to be dry. I only use 'lacri lube eye ointment' 5 times a day at least (drops do not work what so ever) which doesn't make sense to the docs because they say even people with severe dry eyes don't use that much and mine looks mild.

Last week the doctors decided they would finally test my thyroid antibodies, does it sound like I could have mild thyroid disease?

Thanks and sorry for how long this is!

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16 Replies

  • I assume Sjogrens has been ruled out?

  • Yes, I saw an endocrinologist and they have ruled pretty much everything else out including sjogrens. I've never had the thyroid antibody test though

  • I would think if you had TED you would be getting some sort of double vision. Dry eyes feel terrible though, when people say they have dry eyes it doesn't even begin to describe how bad their eyes can feel.

    I've got really dry eyes, sometimes they are so dry that they water. Often when I watch TV and the credits run I see them double. Looks very odd. My vision gets blurred, if I read or compute for too long I can't see when I stop. My muscles feel stiff too. Often my whole face hurts radiating out from my eyes.

    I use Hyco San preservative free drops and sometimes gel tears. Trouble is I don't use them enough, I get fed up putting them in after a while so when my eyes get better and my symptoms drop off I tend to give up using them which is stupid of me.

    I don't think having to use them five times a day is excessive at all to be honest. I find when my eyes are bad I put whatever I am using in at least that often - it is only really morning, coffee break time, lunch, mid afternoon, then tea time and you could do it again at bed time. I keep a bottle by the bed and sometimes reach out to get it and them in if I waken during the night. If I'm a passenger in the car I find the air coming in the vents really dries them out and air con just kills them so I keep a tube of gel tears or bottle of Hyco San handy and keep stuffing them in.

    I have a thing called an eye bag that I put in the microwave for a little while and I also love to squeeze a face cloth under hot water and hold that over my eyes like a hot compress - morning and night Just don't make it too hot if you try it. Don't want to burn yourself! Keep blinking too when you are using a computer or watching TV and look into the distance as well. It's very easy to get 'fixed' and stare.

    Dry eyes are really much more painful than people realise but you can do a lot to help them feel better, it's just that you've got to keep going once you see an improvement or they get dry again. Blepharitis looks painful too and the hot compresses ought to help that.

    You can't overdose on dry eye drops so use them as often as you can and try and get preservative free drops if you can then you won't have any problems with the preservatives.

    Really good that you are being checked out for antibodies though that will put your mind at rest.

  • Hi, thanks for the reply. Sorry I should have been more specific I don't use eye drops I just use the eye gel constantly, it used to be around 10 times a day before the plugs. I also use the eye bag as well. Drops just don't work on me, I've used a load of different powerful prescribed ones but they just give me no relief. I suppose the problem is that the dr's keep saying its mild and its not that bad at all yet it feels terrible and I'm using so much stuff in my eyes and its not like I can forget to use it, I have to use it. Like you I only get double vision or 'ghost imaging' with bright things against a dark background like tv credits or car headlights at night. I suppose its a good sign I don't have real double vision but its just come to the point where I really want some kind of diagnosis

  • I agree with Fruitandnutcase that you should be using preservative-free products - at least for a trial period. When I had dry eyes, I started using various drops and gels - but it was only when I stopped using any that contain preservative that I started to improve. Until the, the more I used the worse I became.


  • Thanks for the reply, everything I use is preservative free including the eye gel I use. I think most the stuff optometrists prescribe nowadays is preservative free. 'Lacri lube eye ointment' is by far is the best thing that has worked for me

  • Oops, I've just pretty much repeated all this below so very sorry.

  • I used Lacrilube at night and ViscoTears single dose unit during the days.

    I certainly had to be quite firm about getting ViscoTears in SDU form rather than bottles with preservative - though that was a couple of years ago.


  • Hi Rod, could you explain why preservative free eye drops are the right sort to use! Thankyou

  • Many people,even those who initially appear to tolerate the preservative(s) used in eye drops, in time become sensitive to it. Once that happens the eye is sitting in a war zone between the soothing effect of the other ingredients and the irritating (or whatever it actually is)effect of the preservative. You take more to increase the soothing but that increases the irritation.


  • Thanks Rod preservative free it is then !

  • No, sorry, I knew you meant you didn't use eye drops. I just use them because they are really easy to put in and I can see right away without any blurring.

    I should use them all the time too but I don't, it isn't that it is difficult to do but I just get fed up with having to do it and when my eyes feel a bit better I drop off - I kind of overdose on the meds then stop, then get dry again etc. Gel does last longer but like you have a little while when you can't see clearly which I don't like.

    Do you know you can get gel tears that are preservative free? That might help if you aren't using them already. Visco tears and something like Systane - they both one in individual minims which makes them more expensive to prescribe.

    It's all just such a pain isn't it and like you say it might look mild to the doctor but it sure doesn't feel like it when you're on the receiving end. Have you asked your optician if he / she could recommend a consultant who specialises in dry eyes, there must be someone who does that.

    Hope you find something that helps soon.

  • I think thats what has the doctors confused that I can put an eye gel in so many times a day and not get any blurriness which is making them think theres a further problem than just dry eyes. I'll ask them next time if there is any experts in this field at the hospital but right now I'm not getting much look! Thanks for the advice too

  • I found I could use ViscoTears at least six times a day with no more than transient blurriness. Maybe a few tens of seconds.


  • Your blood test results do not indicate hypothyroid, but could indicate thyroid hormone resistance, which has the same symptoms as hypothyroid. This is genetic and your mother's thyroid problem could be a further indication of this.

  • Hi Carly - our ages are at the opposite end of the spectrum. I am 57, and last year, I opted to remove my cataracts from both eyes. The Opthamologist, (for a variety of reasons) stuffed up the operations on both eyes. I went into his care as being short sighted, but, after his intervention, came out needing glasses for both distance and reading. I actually NOW need to use a magnifying glass to read, as his script for my reading glasses were inaccurate!.

    Fortunately, through synchronicity, my husband had a colleague who kept talking about his son, who was "Brilliant" in terms of eyes, studied in Sweden/Switzerland (?} specialising in Orbitology. I got my GP to write a referral to see him, and after the 1st appointment (which was extremely lengthy, due to tests), He actually TOLD me of my symptoms, some of which are what you describe.

    Can't look up/down or side x side without extreme eye pressure; throbbing of the eyes; dry eyes that would constantly "weep"; blurred vision; headaches (migraine type); not being able to cope with ANY glare. He diagnosed me with Thyroid Eye disease, and recommended me follow up with some reading articles that I suggest you read.

    The only "medication" he suggested is "Opti Mel" which is essentially based on Manuka honey, which again I would suggest you research - purely natural. I simply put drops in my eyes when I feel any of the above mentioned symptoms, or lie down with ice over both eyes, in the case of headaches (which are now gone).

    After my 2nd apt, he said he didn't want to see me for 18 months, but gave me his mobile number just in case - I have used that a couple of times at the beginning of that time, but he was happy that it was just mild, and after he and my original Opthamologist discussed. he will sort the orbitology, and then hand me back to the Opthamologist to rectify the outcomes of my poor cataract surgery. If all of my symptoms disappear, he suggested eyelid surgery due to the bulging eyes (which I really didn't think was so bad!) So, for what I thought was age, and heavy eyelids (as described in the symptoms above), I learned so much! Goggle the VISA classification for TED.

    The reason for the length of time he stipulates ( and argued with my Opthamologist about) is that once the symptoms & disease have been diagnosed, it needs time to rectify them - ie. for mild TED.

    I spoke to the distributors of Opti Mel in Australia, and it is not freely available, but it can be ordered in by even optometrists. I still have some throbbing and eye movement problems on occassions, but especially those symptoms are connected to too much reading, computer work etc. I feel like I am at least informed now, and know what to do, to keep things at a preventative level. PS - NO PRESCRIBED & EXPENSIVE EYE DROPS WORKED FOR ME EITHER!

    hope this helps


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