Weird Vision issues: Hi, I have Graves' disease... - Thyroid UK

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Weird Vision issues

HarryPotterWho profile image
34 Replies

Hi, I have Graves' disease since 2000. A few years back my vision changed (Not TED), but I started seeing static, trails, afterimages from bright lights, list sensitivity, etc. Not too long after that I started having issues with tracking movement in my peripheral vision. I am wondering if this might be thyroid related or related to the fact that my TPO antibodies are through the roof high>900 (range ,9).

My neuro thinks it's from the antibodies and is trying to find different ways to decrease the antibodies naturally or medically (LDN). Has anyone had any issues with their vision before? My childhood friend has Graves' disease and the vision static stuff too, but not the choppy vision.

Thanks!

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HarryPotterWho
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34 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I have visual snow and have some of the visual symptoms you decribe. I was told by a doctor that it might be due to some sort of migraine process but some researchers have other ideas.

kclpure.kcl.ac.uk/portal/en...

theguardian.com/lifeandstyl...

HarryPotterWho profile image
HarryPotterWho in reply to Sleepybunny

Thank you so much for replying!! I was actually in the very first study on Visual Snow. I am in FL and flew out to California for it.

Did your VS start after the thyroid condition?

Sleepybunny profile image
Sleepybunny in reply to HarryPotterWho

I do not have a diagnosed thyroid condition (my TSH levels are normal range) but think I am hypothyroid. I believe that my VS was triggered by B12 deficiency.

I usually post on PAS forum. Lots of info there about B12 deficiency.

Katepots profile image
Katepots

Yes I have vision issues, very blurry. Just don't seem to focus properly. Sensitive to light too.

You do know that the antibodies show that you have Hashimotos? Just checking that you know?

HarryPotterWho profile image
HarryPotterWho in reply to Katepots

Hi! Yes, I have always wondered about that and told my endo, but she said it was common in Graves'. I still feel like I have both, Graves' and Hashi's because my antibodies are always so elevated.

Fruitandnutcase profile image
Fruitandnutcase

I am in remission fro Graves Disease. I haven't got TED but for quite a while before I was finally diagnosed I had problems with my vision.

Basically I think most of my symptoms came from having extremely dry eyes. It's surprising (well it was to me!) the effect that dry eyes can have on your vision.

I use preservative free artificial tears several times a day. I'm using Theolose Duo at the moment but I also like Xailin drops and HycoSan Extra.

I just carry a bottle in my bag and shove them in either when my vision is blurred and I realise I'm not seeing as clearly as I could or just regularly throughout the day in which case my vision tends to be better. I was given a sample of Theolose Duo Gel to try at night time and while it is more liquid than gel tears it is really good. I put the drops in as I put off my bedroom light so I close my eyes on it. Definitely one of the best I have ever used and I've tried a lot of that sort of thing. I do think that eye drops are a matter of personal preference though.

I find if my eyes get too dry my muscles just don't work well and I can't read for long, the vision gets blurred, then when I look up I can't see in the distance. They also get sore and feel as if I have got something in my eye. It is really not nice at all.

I went totally gluten free in September last year in an all out effort to reduce my antibodies and I would say it is working well.

In September last year when I started my antithyroidperoxidase was 31.3 (<34) and my antithyroglobulin was 410.0 (<115).

In July this year after being totally gf my antithyroidperoxidase was <5 (<34) and my antithyroglobulin was 140.8 (<115)

140.8 is still too high but it is far less than it was back in September so I'm hopeful it will keep coming down so I'm going to stick with being gluten free. It isn't very difficult really and I've found that most restaurants and eating places are GF aware. My coeliac friend is fine about non-coeliac people eating gf - he says it is because of people like us that coeliac snow have so much choice when eating out. I joined CoeliacUK and got their amazing 'bible' - a book with lists of every sort of food you can imagine and where to buy it. It is definitely worth the annual subscription.

The worst I've come across is my neighbour who had a BBQ recently, and whose daughter baked masses of wonderful cakes - all with regular flour - then when I admired them and said how sorry I was that I couldn't sample them said "Yes I know you are flourless but I can't organise just for one, unless it is really medical". Considering I've always done exactly that for a group that I cook for - well actually I don't, I make everything I make for the day gluten free and everyone has that.

So if you do try gf it's probably better just to tell people like that that you are coeliac.

Good luck with the vision - start with a couple of days of 'eye drop overload' then just use them regularly through the day and put a gel of some sort in for the night.

Oh and you can buy a thing called an eye bag that you microwave for 30 seconds then lie down and put it over your eyes - sometimes I get a film like mucus that floats about and the heat of the eye bag gets rid of that - if you use it regularly - you can also squeeze a facecloth out under hot water and hold that against your eyes,I do that too but the eye bag holds the heat for longer. If you buy one make sure it has a removable cover that you can wash - the one I'm using at the moment doesn't have that and it isn't washable.

Ask your local optician what samples they have. I don't know about large chains but my local independent optician is very good at giving me whatever free samples they have. I also think they also have a better stick of preservative free products or they certainly used to.

HarryPotterWho profile image
HarryPotterWho in reply to Fruitandnutcase

Thank you so much for your reply!

I have been gluten free, egg free, dairy free, oat free, corn free, cocoa free and soy free for a few years now. I feel like it helped me a lot with the migraines I was having. I still have so many external allergens too and I feel like those have a lot to do with my immune issue.

I did have a 23andme test done and I couldn't believe that it actually showed a predisposition for Graves' disease. I feel like I must have turned on that gene somehow. The food allergies came up in my teenage years, but the external allergens have always been there.

I do eye drops too since I was first diagnosed. I used to deal with the sticky gritty eyes... eeeww hated that!

I hope that your antibodies keep going down for you. That is great news and it gives me hope to keep trying. I am taking selenium now and continuing on the allergen diet, as well as the autoimmune anti-inflammatory diet. Good luck to us both!! =)

Fruitandnutcase profile image
Fruitandnutcase in reply to HarryPotterWho

Tempted to say 'Gosh, what do you eat' but there is lots you can still eat. Definitely good luck to us both 😊

Sounds like you are doing all the right things. I know I'm guilty of falling by the wayside when it comes to using my eyedrops so even though you are using them it might be worth using more and making sure to always use preservative free products.

Do you use a vacuum with a HEPA filter or an air filter or ioniser? That might help with the external allergens? It's all such hard work not to mention expensive trying to beat all these things isn't it.

I have had simalar problems since a child. Used to get the most awful migraines and blotches, flashing lights in front of my eyes weekly. I don't have Graves or hashi's though just hypo so wonder if it's something directly from the thyroid itself for me. Funnily enough since starting thyroid meds it's ceased. Or happens only once in a while now.

HarryPotterWho profile image
HarryPotterWho in reply to

I've read only before that Hypothyroid can cause migraines. I used to get stomach migraines when I was a little girl. I wonder if I've always had some form of thyroid issue as I went through a period of time where I was heavy as a child and then when I got the graves' disease it changed. Maybe I was hypo at first and then swung to hyper.

I am glad your migraines have eased up!!

in reply to HarryPotterWho

That is very possible. I was told I also had stomach migraines at one point in childhood . So bizarre. Remember the doctors giving me this horrid orange stuff to drink.

Glynisrose profile image
Glynisrose

My vision is not right either. Most of the time its like looking through a heat haze!

HarryPotterWho profile image
HarryPotterWho in reply to Glynisrose

Yes, I get that heat haze thing too. Or dirty lenses for me.

SewingBee profile image
SewingBee

I keep all my prescription glasses as I never know which ones I'll need on any given day. I now suffer from AMD which obviously is no help at all. I lost my vision temporarily which what was pain free migraine and also suffer from Labyrinthitis. Some of this is surely not connected but the day to day changes I'm convinced are. Most days I find it difficult to read at all and I had to give up sewing a few years ago.

HarryPotterWho profile image
HarryPotterWho in reply to SewingBee

I am sorry to hear that! Do you have Hashi's or Graves'? I am so convinced that these antibodies are playing a part.

SewingBee profile image
SewingBee in reply to HarryPotterWho

HarryPotterWho

Initially I was told that I had the Pituitary gland Hypothyroidism but since I had to change the practice I was with, Drs have assured but not reassured me that it must be thyroid gland. To quote ,"Because the Pituitary gland one is rare' !!!!!

Fruitandnutcase profile image
Fruitandnutcase in reply to SewingBee

Ha! So why could you not have it then? Such a shame you have had to give up sewing. It's hard when you have to give up the things that make you 'you'. I felt like that when I was struggling to read for long periods of time. Although I do have to say a regulat clean of my glasses and some dry eye drops makes a huge difference. Suppose there are always talking books, it's actually quite nice to listen to a story.

SewingBee profile image
SewingBee in reply to Fruitandnutcase

Fruitandnutcase

Exactly! I had a second blood test taken after 2wks of taking thyroxine which , he said, would tell if it was a faulty pituitary gland. When the results came in he said that I had the pituitary problem and autoimmune. It's not been acknowledged since.

HarryPotterWho profile image
HarryPotterWho in reply to SewingBee

Hmm, I have never heard of that one before. How do they even test for it?

helvella profile image
helvellaAdministratorThyroid UK in reply to HarryPotterWho

They inject some synthetic TRH - if the pituitary responds by increasing its TSH output that shows it is working.

pathology.leedsth.nhs.uk/dn...

Yep same for me blurred vision

Angelic69 profile image
Angelic69 in reply to

I have the odd day when my vision is normal, I can see stuff around me and I can judge distance ect. If I'm in public spaces that are full of people rushing around, walking whilst on Mobil phones ect I tend to be pre occupied with finding space to walk in. There usually isn't any space and nobody will give you any that's when I go blind mostly. I feel the atmospheric pressure of other peoples movements and it seems to blow, even on a windless day straight into my eyes and this also effects my vision. As a consequence the muscles around my eyes have been affected quite bad and I too have had to give up a lot of the things that make life worth while. My eye condition seemed to start after my hypo diagnoses. At first I put it down to acacia which is present in most versions of levothyroxine, but even on acacia free versions my eyes still had symptoms. I've been on lots of different eye drops, gels ect but only keeping my eyes closed seems to relieve s problem. I'm beginning to believe that I'm allergic to quite a lot of stuff these days. Since being diagnosed I can no longer tolerate, the general public, Mobil phones and there users, caffeine, sugar and breads although I do occasionally indulge.

in reply to Angelic69

Sorry I can't help you I only get dry, itchy eyes and blurred vision I find it hard to focus on objects when this happens. some days their OK weird

Angelic69 profile image
Angelic69 in reply to

Is there anything that you've ate, places you've been, high pollen that could account for the intermittency.

in reply to Angelic69

I haven't noticed, will keep a check on it and see if anything triggers it.

I have graves disease and my thyroid was hyper then stable for a short time after radio iodine treatment, now I have a under active thyroid don't know whether this is why its comes and goes

Angelic69 profile image
Angelic69 in reply to

Has anyone actually diagnosed what is wrong with your eyesight? They're treating mine with acute dry eye? Treatment isis waste of time, drops don't work. under the NHS so I lead to believe they are only prescribing certain meds and GPS can only give prescription for those products on the list regardless whether they work or not. We have real problems here with this system. When your young and contributing the worlds your oyster when your the wrong side of 40 it seems to be the opposite. If I discover anything that can help I'll post it to website. Hope you get relief soon fellow sufferer.

in reply to Angelic69

No but I do have a stigmatisum in right eye, due to have eye test soon will ask them about it

Thanks

Angelic69 profile image
Angelic69 in reply to

Is that like the movie stigmata, you have the eye of our lord Jesus Christ?.

in reply to Angelic69

No loads of laughs Its shape like a rugby ball That's about as much as I know and having to wear glasses since a young kid

Angelic69 profile image
Angelic69 in reply to

Hope its not painful. Did you have it at birth?

in reply to Angelic69

Its not painful just effects your vision. But I haven't had problems wirh blurred vision before My father has it as well I think it's hereditary

Angelic69 profile image
Angelic69 in reply to

I take from the fact you've had it since chi!dhood there's no cure.

in reply to Angelic69

Not 100% sure but I think they can do surgery now I don't fancy that so haven't looked into it

Angelic69 profile image
Angelic69

A friend of mine has it too but think his was due to excessive computer use.

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