Diagnosed with AS - experiencing eye symptoms B... - Thyroid UK

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Diagnosed with AS - experiencing eye symptoms Blurred Vision, Light sensitivity, Pain, Redness, Floaters and finally white blood cells

Karganeth profile image
12 Replies

I've got the long end of the story just below but I'll try to sum it up for those with brain fog hah :p. My eye symptoms began at the age of 18, I am now 24. Over the past 6 years I have gained eye symptoms one after the other. I've accumulated the following symptoms in order:

Blurred Vision

Light sensitivity

Pain

Tearing

Redness

Floaters

White blood cells in my eyes that I can see swimming all the time

I went to see the opthalmologist twice while suffering from all the above symptoms excluding the last symptom on the list. Everything came out completely clear in both visits. I have not reported this new symptom which is this new ability I have that allows me to see my white blood cells swimming all over my vision.

What might be going on? Thank you for any help!

-------------------------

Alright first a little history. Since a child and upto about the age of 18 I had eagle eye vision (you get what I mean :p). I'd pass all eye examinations with 100%, these were eye assessments we done with the nurse in my respective schools. Never once did I complain of any eye symptoms or troubles of any sort. Fast forward on the age of 18 and I began experiencing blurred vision. At first I thought nothing off it and since it wasn't too troublesome I tried to ignore it. I noticed that during bright sunny days my vision improved greatly over gloomy days so I just blamed it on the weather. Through this time up until the age of 19 my vision continued to deteriorate. I'd say I'm at 50% of my normal 100% in regards to vision strength. I went for an eye check up and got told what I knew they'd say and that was that I'd need goggles as I was short-sighted. I refused to acknowledge it because there were continuous periods where my sight would be brilliant and at other times it would be very poor. Is this normal?

At some point in this time I developed my second symptom and that was sensitivity to light accompanied with pain. Again at first it was relatively easy to deal with but with time the sensitivity of my eye in regards to light became extreme. It is now to the point where I struggle to walk into supermarkets and other shops. I had to quit my part-time job because the pain was so excruciating and during this period I had colleagues mention on several occasions that my eyes were red. I went to see an opthalmologist and when he used his 'torch' to look into my eye I forced my head back as it felt like a beam had gone through my eye, it was excruciatingly painful and my eye responded to that with a hell of a lot of eye tearing. He then used a low powered 'torch' and after his assessment said everything looked perfectly fine. At first with the light sensitivity my eyes did not turn red (the white part) and this followed for several months. I only began to take a more detailed approach when my colleagues at work made mention of it. I'm now at the point where my eyes will turn red in a matter of minutes if I stay under lighting that causes it grief.

During this time I was diagnosed with Ankylosing Spondylitis and also developed an undiagnosed bowel condition that baffles every medical expert I meet to this date. Again a little while later while trying to manage all this issues I experienced my first floater when I was having a walk. I believe they're referred to as 'squiggles'. Mine was long and thin. Eventually this increased to 3 floaters and were all transparent so I could see through them. I had another eye examination as the doctor thought I might be suffering from Uveitis which came out negative upon examination by the Opthalmologist. How relieved I was but frustrated at the same time as I have so many eye symptoms but none of it makes sense. Eventually these large floaters disappeared and instead were replaced with much smaller floaters and these move around in my vision at quick speeds. They are all over my vision and look like particles going off in all different directions without me moving my eyes. I.e if I look forward and keep my eyes focused in one place I can see them swimming/flying all over my vision.

These are transparent and are most noticeable in bright lights but can still be seen in low light. There has been a few ocassions when I've switched the lights off and am just about preparing to go to bed where I suddenly experience these flashing orange lights in the corners of each eye. This has only happened about 4 times and now for a while I have not had another episode of it. Also there are times when I'm out and about where a coloured floater (purple) will appear and this is different to the small 'particle' ones I described earlier as I am unable to see through them and it is much bigger but from what I can understand they seem to come and go.

Thank you for reading!

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Karganeth
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12 Replies

I googled AS as I didn't know what it was (!) and Wiki suggests it's associated with eye disorders such as acute anterior uveitis and iritis, and the bowel disorder ulcerative colitis. I'm assuming they've ruled out these things first?

Looking back at your previous question in which you listed lots of symptoms, and coupled with this post, I would also ask have you ever had your B12 and folate tested? Optic neuropathy can be associated with nutritional deficiencies. Blurring, light sensitivity, night blindness, floaters and eyelid twitching commonly reported, but in rare cases more serious optic neuropathy can be seen. Some full symptom lists here:

pernicious-anaemia-society....

b12d.org/b12-signs-symptoms...

Also spinal problems with this disorder if untreated - subacute combined degeneration:

neurology.about.com/od/Auto...

You also mention an undiagnosed bowel condition, stomach issues are extremely commonly reported, usually caused by atrophic gastritis/low stomach acid, sometimes underlying Coeliac Disease or Crohns, or H Pylori infection to name but a few.

From a genetic point of view, a defect that could affect your processing of B12 and folate would be mutations in the MTHFR gene:

stopthethyroidmadness.com/m...

So you can ask your GP to carry out straight forward serum B12 and folate tests, but coming back normal does not necessarily exclude deficiency. Better but less widely available tests are Active B12, Methylmalonic Acid (MMA) and Homocysteine, just in case you were interested/still reading!

Hampster

Karganeth profile image
Karganeth in reply to

Hello Hampster,

I guess I'm a little worried about visiting the eye specialist and being told I have some form of eye inflammation especially since for the past 2 days I've been able to see my own white blood cells swim in my vision, which I've never in my whole life experienced before. The bowel issue is one of my most debilitating conditions...it's the one that keeps me pinned home. I've had it for 5 years straight and I truly can't even remember what it feels like to feel normal anymore. This bowel condition I have doesn't rest. I've been to some good recommended gastro departments, which has done me no good. Worst part was for the first 3 years everywhere I went seeking help, all I received was that I had IBS and I should learn to live with it. I've been on countless Fodmap diets designed to ease IBS and they've done zilch for me. I was referred to a dietitian who had a group of us go on a FODMAP diet for 8 weeks. After this time I was the only one who experienced no change whatsoever in symptoms. Luckily I had some help from my father who has AS, Lupus and god knows what else. He recommended I'd try the starch free diet based on a book he read. As I was so desperate to fix or relieve my gut symptoms I began the diet the next day. One thing to note before I began this diet, right after meals I'd experience a huge production of gas and this was the sort of gas I couldn't expel and worst of all I felt like it was swimming near my tailbone. How infuriatingly annoying! This would last for hours and hours. First day on the starch free diet and I was expecting the gas and to my surprise...I literally had NOTHING. Fast forward a few days and my stiffness also decreased and I felt far more mobile. I had never felt so good in my whole life. Damn I've rambled a little too much. All I've been checked for is Ceoliac Disease which came out negative. I've many times asked to be checked for Ulcerative Colitis and Crohn's Disease but because I don't have blood or mucus mixed with stools they automatically flag it off. Although I have all other symptoms that are common in those conditions. Perhaps my condition just hasn't gotten to that stage and it is still developing.

I've had several Full Blood Counts done and as they tell me, everything is perfectly fine. Will the vitam deficiency tests show up on this count? The only thing I've ever heard the doctor tell me regarding deficiencies is Vitamin D and that was 2 years ago. I wish I could just ask my GP but most of the time they are so reluctant to do anything. I've managed to bypass this somewhat by visiting different doctors each time. Got tired of my main doctor telling me that I should just try to ignore it. Does she really not think I've tried that already?

I'm going to try and push the gastroenterologist to check me for the conditions you mentioned. Oh H.Pylori came out negative by the way! I've had my thyroid test done a few times and on each occasion it seems to fluctuate from being high to being perfectly well within range.

Thank you for bringing these to my attention!

in reply toKarganeth

I can only echo what the others have said, get yourself to A&E or an eye hospital and get yourself checked out. You can worry about the other stuff once you've done this.

H x

Fruitandnutcase profile image
Fruitandnutcase

Have you been checked out for auto immune disease, AS is a rheumatic condition, it sounds like you have blepharitis - artificial tears and hot compresses will help with that. Had a friend who had similar, she started with RA then her eyes got bad, she ended up with iritis, uveitis and blepharitis. She was treated with cortisone etc. if you have bowel problems that could be auto immune too.

Maybe your symptoms have not been active when you have been to the consultant. I'd give the glasses that have been recommended a try. If the light is good then you will see ok without them because the amount of light affects your pupil size and lets you see better but if you are short sighted then you are bound to benefit from having that fixed.

Liz x

Karganeth profile image
Karganeth in reply toFruitandnutcase

Hi Liz

I had a look at blepharitis and I don't think that matches my symptoms because I don't get any swelling whatsoever in or around my eyes including eyelids. Ouch how does one manage with all those eye conditions? I feel for her. I know I might be talking out of my backside and I mean this literally but I've gone and asked my gastroenterologist who's a professor of gastro. I asked could my bowel condition be caused by AS. He said 'no'. I'm thinking perhaps I phrased the question poorly and should've said could it be an autoimmune bowel condition like you mentioned? Well I'm about to find out if the swarm of white blood cells in my vision will make a difference this time. I've tried the glasses on several occassions and yes my vision improves especially being able to read text at a distance but my other symptoms still persist. The goggles really only help with focusing! Thanks Liz! Appreciate it.

helvella profile image
helvellaAdministrator

You have a LOT of sympathy from here!

I have had three bouts of iritis over the years - and the excruciating pain caused by light has to be experienced to be understood. If you are getting something similar, I know what you mean. Only the drops allowed them to view my eyes - I couldn't even open them in an almost dark room on the first occasion. And the watering was almost spraying out of my eyes.

I was told that if it happens I should go straight to an eye hospital. And, yes, the ankylosing spondylitis question came up - luckily for me it seemed very unlikely.

However, sympathy is about all I have. I never needed to go much further as a dose of something and time sorted it out on each occasion. Afraid that becoming an expert at searching might be necessary.

Have a look at the result of the search in this link:

preview.tinyurl.com/TUK-HU-...

Might be something of interest.

Rod

Karganeth profile image
Karganeth in reply tohelvella

Oh my god. When light hits the eye it's like someone stuck a dagger in or a pin needle of some sort. Ugh painful indeed. Damn sounds like you had a pretty bad episode, I'm glad you managed to get it under control. Since having Iritis has your vision been reduced permanently? Is it possible to gain back lost vision? Yes I've been told to go straight to A&E if I have any more attacks too, but I've always been touchy about my eyes, so I've been skipping which I know is completely stupid. Damn these autoimmune conditions, it's like you can't just have one. You've got to experience a whole ancestry of it.

Thanks for the link by the way, it'll provide good reading time and now that I've been suffering with these conditions my hope is that I'll be able to go onto complete my studies and hopefully contribute some light haha! Stay strong Rod!

helvella profile image
helvellaAdministrator in reply toKarganeth

Haven't had anything for about twenty years. Thank goodness.

I don't think it affected my vision permanently but no-one seems to know why I got iritis in the first place! Don't think I have any autoimmune issues.

My first attack took place during a spontaneous 72-hour cross-channel trip. On my own. Ended up sitting on a window cill, unable to open my eyes at all. Someone noticed me and asked what was wrong. My non-existent French managed "mes yeux!".- got taken to a doctor. Phew. Recovered enough with treatment to catch the boat back on-time but felt very sensitive around the eyes for some time after. :-)

I do not know much about eyes. Would rather not guess answers.

Hi I don't wish to worry you but please,please get your eyes checked by hospital eye department.From personal experience I know that AS is definitely connected to iritis and left unchecked can have very serious repercussions.If it is iritis it needs steroid drops and pupil dilating drops to try to help with pain.these are a must it cannot be left.Hopefully your problem isn't iritis,but it sounds as though it could be.Please don't delay in getting it checked out

Karganeth profile image
Karganeth in reply to

I'll definitely be doing that as I've delayed it now for 3 days due to being quite anxious. Also a lot of the reading that I've done across this forum and the internet has convinced me to go. Thank the heavens for the internet or should I be thanking that British computer scientist instead :p? One thing I just find so strange is why am I able to suddenly see my white blood cells in my vision. That's definitely a question I want an answer to! My guess is that I'm having and inflammatory attack of some sort right now? Thank you cupi and take it easy!

paigie profile image
paigie

I was only diagnosed with Ank. Sp. aged 26, after 11 years of suffering the classic "text-book" symptons. When I was in late 30s I suddenly experienced your horrible eye pain,

redness, etc, and was told it was Iritis, which is linked to A.S. The eye was treated straight away with Atropine + steroid drops. That was the 1st of probably 100 attacks,

over many years, sometimes left eye, sometimes right, fortunately never both at once. The atropine enlarges the pupil which wrecks focusing + reading, & which takes weeks to resume normal size, but the pain is cured immediately. Because this gp surgery + the Eye Hospital seem to be overworked on weekdays & closed at weekends, I was allowed to keep a supply of unopened steroids and Atropine in the house, to self-medicate, but I always got the eye checked out by a g.p. afterwards. No lasting damage. Since my 50s,

I've had no further iritis attacks, strangely, but an overactive thyroid instead !

But it's important to treat Iritis promptly or damage will occur, and you should request a supply of both atropine and steroid eye drops to keep for the next attack (which is bound to be on a Friday evening when medical services are closed).

helvella profile image
helvellaAdministrator in reply topaigie

With your history, that sounds an excellent plan.

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