Blindness from Graves

[nhsummerday]

First post, spent months here reading so finally..just want the truth. Will I go blind..will my eyes bulge? After two years on methimazole 5mg every other day, now my blood is normal but still told I am hyper and Graves. Thing is.. looking in the mirror and hoping my eyes don't bulge..just want to know.

[shaws Administrator]

I cannot reply but those who have Graves will do so, to reassure you.

I thought that only someone on no treatment may have a problem with their eyes. There is a condition called Thyroid Eye Disease but I think it can be controlled.

btf-thyroid.org/information...

[nhsummerday in reply to shaws]

Appreciate your reply

[shambles]

I have Graves', thyroid removed and thyroid eye disease, this was how I was diagnosed, by my eyes!

Around 50% of Graves' patients may be affected by thyroid eye disease but affected can mean dry or gritty eyes which can be treated with drops and will be temporary whilst the disease is at it's worst, the eyes will then settle or return to to normal. A very small percentage have severe eye disease, just 3% and they might suffer with bulging eyes as you ask. Blindness is exceptionally rare and often the disease is caught and treated well before that stage. There are treatment options for all levels of thyroid eye disease.

From experience, you can feel the change in your eyes in that they become dry but still this is not a reason for concern, just important that you tell you doctor or endocrinlogist so you can have them checked.

It is also suggested that if you treatment for your thyroid that you do not have RAI as this can lead to eye problems. I had my thyroid removed surgically.

Graves'disease does not mean you automatically get thyroid eye disease and if you do there is a good chance it will be low to moderate.

[nhsummerday in reply to shambles]

Thank you. I have cancelled an eye appointment three times so far..they want to put a dye in my eye to exam me. Just don't want to hear results so I keep cancelling.. I understand what your saying. Reading these posts help and sometimes I avoid this site because all the posts. I could be the 2 per cent that loses sight..but..so many posts are startling. So many posts are from out of the U.S. was wondering if folks take the same medicine that I take? Thank you for responding!

[shambles in reply to nhsummerday]

Trust me I understand your fear, it's real but often not knowing is worse!

If you were on your way to anything cynical in your eyes, you'd know about yourself by now.

This disease is hard work and mix in the idea that you have and it makes it even harder.

I think you should if you can, take a deep breath and have your eye exam, either at doctors, opthamologist or optician. I am pretty confident that your concerns about blindness are unfounded.

I am happy to stay in touch and talk you through anything that causes you concern.

[nhsummerday in reply to shambles]

It's Saturday morning here.. I will make the call monday morning. I got a reply a few minutes ago. The lady said she was in remission. Spent the past 20 minutes googling..remission means a recess from a terminal disease. Your right. Sometimes reading these posts messes with my mind. Thank you for taking time for me.

[Fruitandnutcase]

Hi, I've got Graves, I've been in remission for quite a while now.

I've got very dry eyes and probably had the dry eyes before I was found to have Graves. They don't bulge at all though.

At one point I was having a sort of vertical double vision - when I watched the credits on TV or a film I used to get a double image of the names one above the other, I also found my eye muscles got very stiff so that if I was reading or doing any sort of close work I couldn't see clearly in the distance.

I used (and still do )an eye bag that I heated in the microwave as well as eye drops for dry eyes, always preservative free, I use HycoSan and Theolose Duo, don't know if you get them in the US but you will be able to get some sort ofpreservative free drops.

If you use them frequently throughout the day and also use the eye bag maybe morning and night or whenever you get a chance to stretch out your eyes will feel much more comfortable.

I wonder what type of dye they want to use to examine your eyes? If it's just a yellow stain that they put in in drops you won't feel a thing, you blink and your world goes yellow, it lets them look at the surface using a blue light, after it's done you have yellow tears until it gets washed out but there is no pain involved and nothing touches your eye.

If your eyes haven't shown any signs of bulging by now I can't imagine they will (but I'm only going by my own experiences I have absolutely no medical qualifications)

If I were you I would find out exactly what sort of dye or stain they want to put in and whether it is done by drops or how they are going to administer it. Then I'd be brave and go for an eye test. If you are still too nervous try using masses of eye drops and the eye bag because that will make your ur eyes feel an awful lot better. Just make sure once you have got them feeling good that you keep using the eye drops regularly, I'm dreadful for 'forgetting' to use mine when my eyes feel better and of course they aren't really better so they get dry again. Good luck

Should have said that I was treated by block and replace - it took almost exactly a year and I was treated with carbimazole which sounds like what you are taking. It knocks out your thyroid production.

In my case I took 40mcg a day all the time then when my bloods reached a certain point I was given levothyroxine to take as well, eventually I was taking 40mcg carbimazole plus 100mcg levothyroxine everyday and when my bloods were where my endocrinologist wanted them to be I stopped everything.

One day I was taking all that - next day I stopped it all, I've been in remission fir a few years now.

[nhsummerday in reply to Fruitandnutcase]

Thank you for all the information!

[Helena877]

Feel for you! I used to have a massive phobia about going to the opticians .

Please email them . Tell them your fears and I'm sure they will bend over backwards to accommodate you . That's what I did and they were so lovely to me, helped me relax etc

[nhsummerday in reply to Helena877]

Thank you. The best thing I did was to have the guts to do this post. Thank you and everyone that responded.