Thyroid eye disease

[Kari55]

Hi everyone, I have just joined this forum as my husband has been diagnosed with Graves and Thyroid Eye Disease. He is on a medication and we hope he starts feeling better soon however we got worried about TED. What can he do to look after his eyes? I would be grateful for and info or shared experiences.

[Clutter]

Welcome to the forum, Kari55.

The most important thing your husband can do is to not smoke nor permit people to smoke around him as the smoke can exacerbate TED. He should use preservative-free eyedrops and ointment if he has dry, gritty and protruding eyes.

Have a look at the posts in the links below. shambles is particularly knowledgeable about TED.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[Kari55 in reply to Clutter]

Thank you so much Clutter! I will check out the links. Luckily, my husband has never smoked, he was also given an eye ointment to apply before going to bed. I want to educate myself about this condition as much as possible.

[nomaam10 in reply to Clutter]

Is it JUST cigarette smoke? Or any type of smoke? Like hookah, or mary jane?

[helvella Administrator in reply to nomaam10]

It is all tobacco smoke.

I wouldn't want to be the person who proved other smokes also cause problems by exposing myself, or anyone else, to them and seeing the negative effect.

[Fruitandnutcase]

Great that he doesn’t smoke. How badly is the TED affecting his eyes? It can vary quite a lot.

I get a kind of double vision, like I see two vertical images - or one and a shadow half - when there is writing on TV credits etc. If I read for too long regardless of whether I look away regularly my vision can be blurred. I had that before I was diagnosed with Graves.

I keep it under control by using preservative free artifixpcial tears. I like Theolose Duo Gel but I also use Theolose Duo, HycoSan and Hyabak all are good. I don’t bother with a night time ointment because I don't like that blurred smeary feeling.

I put my artificial tears in frequently throughout the day and I was given a sample of Blephaclean Wipes and I think they are good enough to actually buy for myself even though they aren’t cheap.

The other thing that I use that is good is an eye bag - from your high street optician or Amazon - you put it in the microwave for a little while then lie down with it over your eyes. Bliss! He could use a face cloth squeezed out in hot water, that’s good too but it doesn’t hold the heat for very long.

I went completely gluten free about three years ago in an effort to reduce my thyroid antibodies. I was only going to try it for three months - I use Blue Horizons Thyroid 11 Home fingerprick test to see what’s going on with my antibodies. The results were so impressive - my thyroid antibodies have plummeted - that I am still GF. So it could be worth your husband doing that. When I started taking carbimazole my pharmacist came out and told me to take high strength vitamin C with it so I always took 1000mcg slow release vitamin C.

I think the best thing your husband can do for his eyes is to get himself some preservative free eye drops and keep putting them in throughout the day as well as making sure that the ointment he is using at night is preservative free and so doesn’t irritate his eyes any further. I buy my own because generally doctors don’t like prescribing preservative free drops because they cost a lot more than the alternative.

[Kari55 in reply to Fruitandnutcase]

Thank you so much for this informative response! Much appreciated. He hasn’t seen the ophthalmologist yet so we are not sure how bad it is. He has usually sore eyes and struggles to focus. One eye appears to be a bit a big bigger than the other. He hates the ointment so we will definitely look into the drops you recommended. Also, great tip about vit C - thank you!

[Fruitandnutcase in reply to Kari55]

It’s so hard when your eyes feel like gritty and horrible. Even now if I read for too long I end up unable to see well when I stop. I read a lot so I find that very hard.

Dry eyes are a total nightmare - sounds so simple to say you have dry eyes. In actual fact it can make your whole face hurt, my eyes water too or used to, wrong kind of tears! It can be so uncomfortable. He has my sympathy. Hopefully if he has an appointment with an ophthalmologist he will get more help but I think it really just has to burn itself out.

What sort of treatment is he getting for his Graves? Make sure you get a copy of his blood test results with their ranges. Also ask to have his very tamin D, B12, ferritin and folate tested (I had to do that myself) you want them to be well up in their ranges to help the thyroid.

I used to jot down how I felt every day - just a quick line or two at the most. I did it in a notebook but someone else on here is doing it on her phone which is good too, if I hadn’t done that I would just have said fine’ when my endo asked how I was. That way I could look the night before and tell the endo how I really felt. Also it was good to be able to look back and see the progress I had made. I also used to jot down any questions I wanted to ask the endo other wise I would forget what I wanted to ask.

[Kari55 in reply to Fruitandnutcase]

My husband says he is happy to go GF so we will both do this. We are on healthy diet anyway as trying to conceive so going GF won’t be too difficult for us. I will look for the fingerprick test and shall get him Theolose Duo tomorrow. Thank you!

[Fruitandnutcase in reply to Kari55]

I didn’t f8nd it too difficult. Just a matter of reading the lists of ingredients o; the back of everything you buy - you’d be amazed at where gluten can turn up - I joined CoeliacUK and you get an amazing handbook which lists every GF ingredient known to man. Plus you get a magazine and web access. Worth the money.

Good luck with it all 😊

[shambles]

Kari55, you are absolutely doing the right thing learning about the disease on behalf of your husband and especially the eye disease element. Good work!

I was diagnosed with Graves' disease by my eyes and have found to be the most cruel part of the disease. Unlike you I did not do my homework.

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 and double vision. Some like me need surgery.

It is important that your husband is referred to an ophthalmologist if he has not already. The treatment of the early stage of the eye disease will often dictate the long term outcome. An ophthalmologist will have a much better knowledge of how to treat both his eyes and maintain the correct thyroid levels. This is very important and I have yet to find an endocrinologist that has the knowledge or idea of how to maintain the correct levels in relation to the eye disease. You must keep the TSH suppressed and this will make the endo nervous, oh and will make a GP faint and they will try change your meds. Never let anyone do that other than the ophthalmologist and that is my biggest learning point.

Keep the eyes well lubricated, over do it I would say. Heating, cleaning products or chemicals can be bad and sunglasses when it's bright. Stress is another factor but obviously difficult one to deal with. You've mentioned he doesn't smoke but he may find heavy traffic pollution may affect him. Tell him to carry eye drops with him and use them.

As far as foods and supplements, it's all about inflammation. I altered my diet and added supplments.

I use a facebook page which is mostly for those that have probably a more advanced stage of the disease but still find it valuable. ttps://facebook.com/groups/3129984...

Happy to help with any questions at any time as I know the eye side of things can really distressing.

[Fruitandnutcase in reply to shambles]

I put them in so often that I used to joke that I overdosed on artificial tears. I also find travelling in the car an absolute killer. Think it’s more the ventilation system rather than traffic pollution, that and the fact concentrating on the road ahead, either as a driver or as a passenger means that I don't blink as often as I should. I always carry eye drops - I’ve got them in every pocket and every handbag.

[Kari55 in reply to shambles]

Shambles, thank you so much for your response. I’m really sorry to hear that you needed surgery That is interesting about keeping TSH suppressed. He is on 40mg Carbimazole at the moment as his TSH was 0.01. He is still waiting for more detailed blood results. He had overactive thyroid 9 years ago but was in remission for years and GP didn’t seem to notice the falling TSH over the years and was saying to him that his thyroid is “fine” and he was told this as recent as last November. Then 2 weeks ago, his heart rate started being really high and after a huge palaver in 2 hospitals and seeing GP it was obvious his thyroid has flared up again. On top of everything we have been dealing with unexplained infertility which now I think might be also related to his thyroid. Once again, thank you for listening and all tips, I’m sure I will be back with more questions.

[shambles in reply to Kari55]

You are very welcome.

I believe I had Graves' off and on for 20 years but was fobbed off by doctors as having everything under the sun. It was me that went and told them I had Graves' even with my eyes bulging they were still reluctant!

Graves' disease will affect nearly ever cell in the body and will cause hormone imbalance but I know little about how that relates to males! You will hear the words from the medical services of being optimally treated, optimally treated is when you feel better, not when the numbers fit into a bracket they think they should be. I am sure once you husband gets to the correct levels, most of his problems will resolve.

I should add that I was pressured to have my thyroid removed because they said my eyes would worsen if I didn't. Two points here, I had not been seen by an eye specialist by then and I was not optimally treated, hence the reason my eyes were not mending. Secondly, my eyes got worse after I had my thyroid removed as I still wasn't being properly medicated, until I seen the eye specialist. I could have kept my thyroid which I would have prefer if only I'd know to see the eye specialist.

Small steps, slowly but surely. Knowledge is the answer.

[Fruitandnutcase in reply to Kari55]

You’ve answered my questions. Is he going to start block and replace treatment?

Such a shame that he has relapsed after such a long time.

Just watch that taking 40mcg carb doesn’t make him hypo. I had four weeks on 20mcg and nothing happened. Then I got a letter from my endo telling me to get more and take 40mcg a day which I did.

By the time I finally got to see my endo two months later I had become very hypo which was a bit of a pain. I could have done with a blood test after I had been taking 40mcg carb for maybe four weeks. It all worked out ok but hypo is just as unpleasant as hyper but in a different way.

Hope it solves you ur fertility problems too.

[Kari55 in reply to Fruitandnutcase]

I’m not sure what sort of treatment he will be having going forward. At the moment apart from 40 mcg carb, he is taking 40mg propranolol also. This was based on a blood tests from hospital which weren’t detailed. He will have his thyroid scanned on Wed and then see endo the following Friday. His endo mentioned about him being referred to ophthalmologist but hadn’t done it yet as he was in a very bad way (still is) so priority was to give him meds first. It is a shame we cannot trust the doctors in thyroid matters.

[Fruitandnutcase in reply to Kari55]

The propranolol is to stop his palpitations. I didn’t get that because I’m asthmatic. He will feel awful until the carb and propranolol kicks in. Tell him to get as much rest as he can and to be kind to himself and a bit selfish - no feeling he ‘should’ do things. He might not look it - I lost so much weight I looked better than I had done for years - but he is very ill. Good luck on Wednesday and Friday. Let us know how things go.

[magnoliauk]

My dry eye was diagnosed by my optician using some yellow stain that showed how quick the tears deteriorated. She told me not to bother with drops and sprays and to go with Carbomer Gel but not the expensive stuff they sold. She said to go to Boots and buy one tube then get some generic from the internet.

I get these from Pharmacy First pharmacyfirst.co.uk/carbome...

I use them morning and night and have very little problems with the grittiness which I find most uncomfortable.

Oh yes - I do clean my eyes with Wet Ones antibacterial wipes - works out much cheaper.

Hope he finds relief soon.

[Kari55 in reply to magnoliauk]

Thank you so much Magnolia. I will check the gel out. He might need to try few things to see what works best for him. At least there are things he can help himself with so I feel a little more optimistic now.

[helvella Administrator in reply to magnoliauk]

Afraid Pharmacy First have just put me off them for life.

a) No list of ingredients;

b) Use of the Americanism "generic for";

c) No maker name, product licence number, etc.

If that product contains preservative, you could become sensitive to that. I used expensive Visco-Tears single dose units when I needed them - as they are preservative-free.

[helvella Administrator in reply to helvella]

Link to details of several such products:

medicines.org.uk/emc/search...

They are all different and I would not consider them direct substitutes for each other - you'd need to check the different ingredients.

[Kari55 in reply to helvella]

Lovely, thank you for this!

[Fruitandnutcase in reply to magnoliauk]

Well, it depends on whether or not your polymer gel stuff is preservative free - a lot of the preservatives are what cause people problems and when I used wet ones to wipe my dashboard it took the surface off it so I wouldn’t be sure about using it in my eyes.

[magnoliauk]

Do some research on Amazon.co.uk (lost of reviews) - make sure it is a generic brand. Most people find the gel easier to use as it doesn't need as many applications. It does say for night time use but many use it throughout the day as well.

Winter is worse for me being indoors much more. When we are away in our motorhome for the summer I hardly use it!

[Silver_Fairy in reply to magnoliauk]

Is it free of preservatives? Very important if using more than about 4 times per day (on advice from my ophthalmologist)