I've had active TED for 2.5+ years, it doesn't seem to be getting any better - seems like it's getting worse, and all I get from the online meeting with the opthalmology department is 'we'll see you in 6 months' (now 10 months ago).
Thank you in advance.
Henriette
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Henry6
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OK Will look at getting those tests done. I have only slightly raised cholesterole - (5.5 - runs in the family) but I would be willing to take the statins if it would help my eyes.I don't get the same brand of levothyroxine - I tend to just get a generic box. But my thyroid seems to be quite happy - it's only my eyes that are really struggling.
I take selenium 200 mcg a day, then cod liver oil, D vitamins.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Hi Henriette,I received great advice and information from TEDct & they helped me locate a TED specialist ophthalmologist in my area. I have TED with Hashimotos and have still have persistent dry eyes and light sensitivity. The swelling is intermittent but my eye alignment is much better than 18 months ago. I’ve not required steroids (to date) but found that having T3 higher in range really helped reduce inflammation. I continue to take 100ug selenium daily and lutein & zeazanthin for overall eye health.
That's very interesting about the T3 - I will look at that.I did get the list of specialists from the TEDct - unfortunately, they showed a doctor I've already seen who seemed quite uninterested :-D. I did see another doctor when I was first diagnosed who seemed very helpful - so might go back to him.
What about contacting the ophthalmology dept and pushing for a date - tell them their six months are up and your eyes are getting worse. I don’t know for sure but I don’t think they will do anything until your eyes have settled - are you getting double vision or having big problems with dryness?
In the meantime make sure any eye drops you use are preservative free - you will probably have to buy your own and they are not cheap. Use them very regularly throughout the day - I keep a bottle in my pocket or backpack so that I’ve always got them - so use them a lot not just morning and night and get yourself a gunky ointment for night time use- you won’t be able to see well once it’s in so do it just before you go to sleep.
If I’m really stuck in an emergency I’ll just buy the cheapest drops I can find in the chemist but normally I go for something that’s preservative free.
You can get also an eye bag that you put in the microwave and put over your eyes or you can hold a warm/hot damp face flannel over your eyes too, that makes them feel more comfortable. I’ve got an eye bag but to be honest I prefer the hot damp facecloth.
But contact the ophthalmology dept secretary, say you are overdue and yes, you know times are tough for hospitals (maybe put it a bit more tactfully than that ) and see if you can get an appointment or even a cancellation.
I contacted them about 3 months ago and they promissed me an appointment - which they then gave me for July, and now they've cancelled that. But I'll get back to them. The reason I was looking at the Statins was because I read it seems to help while TED is active, and I could do with something that makes it better now. I'm also not convinced that this will get any better by itself, I'd sort of set my self up for the 'it will be over in 18 months' which is what it states everywhere, but now 2.5 years in it's only getting worse. There were times at the beginning where I had days where my eyes were ok, not brilliant but ok, now they are irritated and uncomfortable from I get up to I go to bed.I do get eye drops on prescription, Hylo-Forte and also use Boots' eye spray. And as others, I have them in every pocket and bag
I was given statins (simvastatin) many years ago when all I had to worry about was a touch of high blood pressure and increased cholesterol. I started them as we left for a three week break in our camper in the south of France.
Within a week my muscles were so painful that I could barely walk to the bus stop across from the camp site we went to - in the past I used to think nothing of walking all the way into the town which was probably a forty minute walk. I also felt really depressed, I had the urge to curl up in a ball in the corner of a seat.
My husband said to stop taking them and I said ‘oh no, the doctor says I must take them’ and carried on. Eventually though by the time we got home I had stopped them. them. I spoke to my doctor who offered me what she described as a more expensive statin. I assume simvastatin was the bargain basement,
NHS cheapo starter statin. I decided against trying again.
I’ve got a feeling though that you can have tests to see if your muscles are likely to be affected like mine were.
I have always had a tendency to dry eyes - I was a contact lens wearer which probably didn’t help - but when I had Graves’ disease and my thyroid was overactive I found I used to get double vision, it was weird, I used to get vertical double vision where I had two images one on top of the other. Print in books and the credits at the end of TV programmes used to have a sort of shadow image underneath the writing.
My muscles also felt very sluggish. If I read for too long then my vision was really blurred even though I used to regularly look into the distance to give myself a break. It was very annoying because reading was always one of my pleasures and as Graves left me feeling pretty wiped out for a long time and reading was something that didn’t require any energy I found the double vision very difficult it was a real pain.
My Graves has been in remission since 2013 but I still get the double vision from time to time depending on what I’m doing and I still have dry eyes. It’s not a bad as it was at the height of my illness but it’s still there lurking in the background.
What treatment have you had for your thyroid or are you having at the moment? What are your thyroid and vitamin levels at the moment? How high are your thyroid antibodies? There are so many factors to consider.
I eventually went totally gluten free when I developed yet another autoimmune condition a couple of years after I went into remission for my Graves (this time it was inflammatory arthritis) and I feel that calmed down my thyroid antibodies although it may just have been a coincidence and they would have reduced anyway.
Hopefully you can get them to reinstate your eye appointment - preferably a face to face appointment rather than Zoom or whatever your hospital uses.
Like Fruitandnutcase every bag I have has (preservative free) eye drops in. I rate HycoSan and Hyloforte…. just don’t let your eyes get overly dry as this can lead to ulcers. I was only at the eye hospital last week as I thought I might have an ulcer, luckily it wasn’t but I was recommended some thicker drops for overnight use. I actually get my eye drops on prescription as I have Hashimotos. I was once prescribed cheaper generic preservative free drops but was allergic to them so now get what the TED ophthalmologist recommended (Hyloforte).
Buddy’s favourites are my favourites too, plus I also like Theolose Duo and I’ve just discovered Artelac which is quite good too. Artelac make a night time version but it’s not particularly thick, it comes as drops rather than thick and gunky.
I’m not that keen on the night time Artelac drops - I wake up and my eyes feel a bit funny sort of puffy. I’ve got some Xiailin too but I don’t really like the really gunky feeling so I tend to avoid it.I’ve been taking a daily Vegan omega 3 algae oil capsule for about two years now, it’s 100% plant based and contains 250mg DHA and I’ve found a massive improvement in my dry eyes since starting that. I ran out a while ago and only realised what a huge difference it made when I wasn’t using it so I’m back on that.My husband is a retired optometrist which is how I have tried so many different dry eye drops and potions. I used to get rep’s samples - alas now I have to buy my own.
I also find the xailin gunky, so please post/ PM me if you have further recommendations re any night time drops you come across.
I’m taking omega 3 but it’s not plant based (it has fish gelatin as a shell) so will look at the algae when I buy more. Some members report black seed oil helps with dry eye, but it made no noticeable difference to me.
I too find the Xyalin night time gel difficult to use. Sometimes it will not come out easily and I end up trying multiple times with my lower lid pulled down. Which I am sure is not doing eyes any good. I began searching to see if anyone does the ointment in a drops equivalent solution. I couldn’t find anything (preservative free). I cannot believe it’s not been thought of as the ointment really is difficult to use. I’ve tried leaving it out but just wake up with gritty eyes. If you have heard anything please let me know thanks.
Sorry, I forgot to get back to you. I bought Artelac night time drops from Boots and used them for a while, I was using Artelac day drops too but recently I’ve bought some Blephawipes and use them before I go to bed and I’ve now gone back to using normal HycoSan - the red one.
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