Thyroid UK
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Worried

Hi,

I am 23 years old.

I have been in remission from Graves' disease for 3/4 years. One thing that I am worried about every single day is if I am going to wake up with my eyes swollen and looking different. I know there's more important things to worry about but I suffer from confidence issues.

My question is: will I get the thyriod eye disease? Will I wake up one day with my eyes looking different?

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Nobody can answer that question, it can happen to anyone at anytime, hyper or hypo. I had Graves and my eyes have been fine, my sister who is hypo has thyroid eye disease so it's not predictable.

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I think smoking increases the risk though?

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So it depends? So will everyone with thyriod problems all have eye problems eventually?

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No not at all. To be honest, I think the majority do not have eye problems so I wouldn't worry too much unless it happens? I know approx 30-40 people personally who've been hypo and hyper for decades and only one has TED. The docs didn't deal with it fast enough in his case in my opinion? He was also diabetic.

My mum has it very mildly so won't count her - just puffy under eyes and slight change of position but nothing anyone who didn't really know her well would notice. This is how I knew her thyroid had finally busted but I'd been telling her for three years she needed it testing and to sort her nutritional levels out as she was clearly not well but she didn't listen. So not always the worst case scenario with massively bulging eyes.

I think the best way to avoid if you're that concerned is to ensure you read up and learn everything so you're not relying on docs to ensure you're being treated adequately and keeping yourself as healthy as possible will help and give up smoking if you smoke. I think selenium is supposed to help also.

Just had a quick check and this is the official line on it:

Overall, about a quarter of people with Graves’ disease develop TED either before, during, or after their thyroid disorder is diagnosed. In most cases the eye disease is mild. If you have no features of TED by the time the Graves’ disease is diagnosed and you are a non-smoker or ex-smoker then your chance of developing TED is less than one in ten. But if you smoke your chance of developing TED is doubled. If you are a heavy smoker, the chances of developing TED is increased eight times compared to non-smokers.

btf-thyroid.org/information...

So the chances are lower after diagnosis than before and therefore for you, less than 10% chance if you're a non smoker - higher if you are

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My son has not had that even before he went into remission so I don't think it is necessarily so. Co Q 10 is a very good supplement for the eyes. If you have gut problems it may be a matter of nutrient deficiencies that affect the eyes. You must be doing something right to be in remission.

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How did you achieve remission?? Was it through anti-thyroids or RAI? If you are in remission then the likelihood of TED should be pretty low. Its the thyroid antibodies that cause the eye swelling so if your tsh is normal than your antibodies are probably low. Have you had them checked? If you achieved remission with RAI then you are at an increased risk but even then i think that happens pretty quickly after d RAI cos d bodies freaks out at d damage done to the thyroid and releases buckets of antibodies. However if its been 3/4 year and your eyes haven't swollen yet, i still reckon you're good. Look into things that can help prevent TED- smoking cessation, aleo vera gel, immunomodulants (plant sterols for graves antibodies), acetyl l carnitine (proven to help eyes but be careful if your levels are normal cos it prevents cells from using thyroid hormone so it could push you functionally hypo).

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PS if I were you I'd also think about whats underlying this worry. Graves is a pretty terrifying and unpredictable disease and the language of irresponsible endocrinologists only increases that worry. Maybe you're having a hard time allowing yourself to relax and enjoy remission but you deserve a break and graves is a self limiting disease, it goes away naturally and remission is normal and worth enjoying

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I've suffered with ted since I was a child and am 43 now my eyes were bulging really badly and at 21 I was lucky enough to have an operation. The hospital are always monitoring me.you just need to stay on top of it. Make sure you getting regular eye check ups.

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Apparently, the overall chance of people with Graves’ developing TED is 1/4, down to 1/10 if you don’t have any symptoms by the time the Graves’ is diagnosed. Most cases are mild. Smoking seems to be a key factor, so best to stop if you do.

btf-thyroid.org/information...

This leaflet lists the symptoms .

If you have your eyes tested regularly anyway, it’s worth mentioning that you have Graves’ to the optician - they will then be on the lookout for any changes. Your endo should always ask you about any changes to your eyes at each appointment, and if they don’t, obviously you should report any changes yourself.

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I’ve been in remission for about the same length if time as you and if you’re like me you will no longer be seeing an endo.

I would find a recommended local optician, have my eyes tested and tell the optician that you’re in remission from Graves Disease etc and ask their advice. If they think you need to be referred to an eye specialist then they’ll do that.

My eyes are really dry and I get blurred vision and a sort of double image if I don’t keep my eyes moist so I use preservative free eye drops (Theolose Duo or HycoSan) throughout the day and that helps, I also have an eyebag that I can heat and put over my eyes. My eyes can feel dreadful if I don't do that.

If you smoke then definitely try and give up. I went totally gluten free about three years ago to try and reduce my thyroid antibodies - I’ve monitored my bloods every three or four months in that time and my thyroid antibodies are now a fraction of what they used to be so in my case it has worked.

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I had TED but then my thyroid disease was undiagnosed/misdiagnosed/undertreated over many years and I was a smoker. Eventually I had operations and okay now. So my advice is don't smoke or drink much and make sure your thyroid is okay. My daughter, brother and aunt also have Graves and none developed eye condition but their Graves was treated straight away. All the best for the future.

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