Thyroid eye disease??

[Inafunk63]

I was wondering what I should look out for in regard to TED? Apart from the symptoms listed on google because they all seem like fairly escalated symptoms. Is there anything I should watch out for early on? Before it progresses? I posted in the Elaine Moore forum and was told that based on my previous tests I was at high risk for developing TED which worries me cuz my eyes have felt more strained lately. I went to my optician and had my eyes tested and she herself had graves, apparently, so I told her I was worried and she said they usually just look out for a change in appearance of the eyes....and that my eye test was normal and no change from last prescription. That should have put my mind at ease I suppose but when you’re an obsessive thinker like myself....it doesn’t. Especially with the kind of zoned out symptoms I’ve been having I I feel like I don’t know what’s actually real anymore....like are my eyes actually strained or am I making them feel strained. But I felt my concerns were a little brushed off and not taken as seriously as I’d like. Thanks again you guys are awesome!!

[greygoose]

But, you don't even know if you really have Grave's.

[Inafunk63 in reply to greygoose]

This made me laugh a little actually so thanks for that! Yes I suppose that is true. It doesn’t stop me from worrying though

[greygoose in reply to Inafunk63]

Oh dear. These damned endos! Why can't they do their jobs properly!

[MiniMum97]

My understanding the key risk is smoking. About 1/4 of Graves patients have TED and often only mildly. Mild TED can be just dry and gritty eyes I understand. I have also read that if you don’t have it by diagnosis you are less likely to suddenly develop it.

I have Graves and I understand why you would worry as this was my main worry when it was suspected and I was diagnosed but if you haven’t developed it in 12 years I would expect it’s probably unlikely.

My aunt had Graves and smoked like a chimney and didn’t have TED. So it’s not a sure thing even for a smoker!

If you have TED there is evidence to say it is helped by taking 200mcg of selenium so I take that in the hope it has some sort of prevention effect. Makes me feel better that I am doing something. I also took turmeric for a bit as this is meant to help with inflammation. Helps me to feel like I’m doing something which might be preventative.

If you are going to take selenium it’s a good idea to test your levels first and then retest periodically as too much can be toxic.

Try not to worry.

[Inafunk63 in reply to MiniMum97]

Thanks for your reply! It made me feel more relaxed! I don’t smoke although I did for a few years around my initial diagnosis and I do take selenium in a supplement but I don’t think it’s as much as 200mcg. I’ll double check that....thanks for the advice.

[Bob00752 in reply to MiniMum97]

If you’ve got it (by diagnosis) you’ve got it, so it is almost inescapable that if you haven’t been diagnosed then you are less likely to get it. True for almost any chronic condition!

[Valarian]

My endos asked me about change to vision, including blurred vision, double vision, changes to colour vision and grittiness on every visit. It gets more complicated during the summer if you have hay fever, but if it responds to antihistamines, it’s unlikely to be TED.

[Brackenholme21]

I had Graves for three years then last month had a thyroidectomy.

From my experience you would certainly know if you had TED. I have never smoked but found any artificial light very difficult screens etc and eyes very sore this resulted in ops as eyelid turning under all very sore and upsetting as felt looked strange.

Did take selenium found heated eye mask helped soothe etc.

Anyway after thyroidectomy feel much better .

So be positive from my experience you would certainly know if you had T E D.

[bantam12 in reply to Brackenholme21]

TED can occur randomly anytime, I had Graves for 32 years before I had it, thankfully very mildly with just itching and dryness, my sister has never had Graves but is hypo and she had severe TED.

[KatKrazy]

Hi. I've just been diagnosed with TED 3 weeks ago and am currently taking Carbimazole. My eyes are `wide awake` and protruding slightly. Looking back my eyes were watering loads no matter what time of year is was and my upper eyelids were puffy (and still are) on numerous occasions I mentioned this to my optician and pharmacists, no one even mentioned I may have TED and recommend I see my doctor. As a result it progressed making my eyes super light sensitive. As a result of puffiness at night the eyes do not shut properly so you get `dry eye` which has resulted in a corneal abrasion and the gritty eye feeling which is talked about, in my experience this is the most painful thing I have experienced - gritty is an understatement! I now have anti-bacterial eye drops (just the standard ones) and lubricating eye drops. I found to ease the pain a warm bottle or similar helps. This condition is far from nice, so please don't hesitate to contact a health professional if you notice these changes in your eyes.

Best Wishes

KK