Desperately trying to find the cause of my dry eyes, anyone have any suggestions?

[CarlyS123]

Hi, firstly I'm 20 and from the UK.
Over 2 years ago I got dry eyes completely out of the blue and despite seeing the doctors who knows how many times and being referred to 3 different hospital departments I have gotten absolutely no where. I have just been diagnosed with MGD and one of my eyes isn't producing enough tears (though it isn't too bad) but I can't accept that I have this at my age for no reason at all! I have other symptoms such as extreme tiredness which I've had for years, some digestive problems and brain fog/concentration issues. The tests I've had are thyroid, ANA, ENA (which includes Sjogrens, Lupus etc), Kindey and liver porfile, ESR, CRP and Rheumatoid factor. All came back negative. The only things they have found is a borderline VitD and VitB12 deficiency, the vitD has been treated but b12 is taking longer to sort out.

My mum has hypothyroidism so I'm having my thyroid antibodies done now and my gran has coeliac disease which has now been ruled out because I had an endoscopy. So there are some autoimmune diseases in my family but I'm just testing negative for all of them at the moment.

This dry eye problem is driving me crazy. I'm at university right now and its so difficult to get work done with this and I'm really worried about getting a job in the next year or so because I don't think I'm going to be able to sit at a computer all day at this rate which most of the jobs in my field will require. I've already done as much as I can at the moment for my eyes, I have plugs put in the lower lids, I have a humidifier and I do the warm compress and massage everyday. I use Lacri Lube probably 3-5 times a day now the plugs are in (which the doctors think is crazy) and VitA-POS at night.

Does anyone have any suggestions on what could be causing this or are there any other tests I can get done?
Thanks

[Rebecca Petris]

Hi and welcome. Happy you're here, sorry you have reason to be!

Over 2 years ago I got dry eyes completely out of the blue

Can you tell us anything about what was going on at that time or immediately prior? Any other medical issues? Any recent changes in life, environment, school, etc?

Have you ever been to a naturopathic doctor by chance? Sometimes a dual-trained doctor - both conventional medicine and naturopathy - can be a really good resource for better diagnosis of some of these elusive things where the symptoms all sound suspicious for auto-immune disorder of some kind but where conventional tests come back negative.

On a practical level: For school, and computer work now and in the future, I'd definitely pursue moisture chamber glasses to keep your eyes more comfortable without having to use so much Lacrilube.

From what you've said it sounds like your clinical signs of dry eye are not severe, but can you describe a bit more about your symptoms? What are your eyes feeling like and how much of the day? How are they at night?

[CarlyS123]

Hi Rebecca
This all started when I was studying for my exams and I was using the computer A LOT, probably most of the day. I was used to getting eye strain a lot because of this but one day I just woke up with such bad eye strain that it was just unbearable to read anything for more than an hour. My eyes just felt really weak and uncomfortable and subconsciously I must have clocked dry eyes because I found small relief in putting water on my eyes. It also hurts to move my eyes up and down and side to side and it still does now. I went to the opticians expecting to be told to get glasses but he said my vision was perfect but they were just dry. They gave me eye drops and an eye spray but this didn't help my eyes at all. Even though it was the summer holidays and I stayed away from computers and reading my eyes were really painful and still uncomfortable. It was only after I was given Lacrilube and rested my eyes for the whole holidays did my eyes start to feel better.
The doctors have always said that my dry eyes were mild but they've always felt a lot worse. They can't understand how I use Lacrilube so often but I know I do need to use it that often because I only use it when they get really uncomfortable and red and start watering. Thats why I'm wondering if something else is going on that they can't see.
After all my treatment my eyes now are okay. I can use a computer for a while but after a few hours I can headaches and my eyes get too uncomfortable to carry on and in general its difficult to read things for too long which is very difficult because I'm at university right now. At night I usually put VitA-POS in once/twice a night, its this really thick gel and its very effective. Before this I would usually put Lacrilube in several times a night. I have been prescribed drops loads of times before but they do not have any effect at all, they tend to just leave my eyes after a few minutes. I think buying the chamber glasses would be the next step.

It would be interesting to see a naturopathic doctor but because I'm on the NHS here I don't know how easy it is to see one and I can't really afford private healthcare.

[khmedia]

Hi Carly,

Your condition and current treatment sounds similar to mine. One of the main differences (and you mention this) is the moisture glasses. I now wear mine 100% of the time at work, even when I am walking about too. I find they are helpful in retaining any moisture in the eye. The pair I have is '7Eye Cape'.

May I ask, those tests you got done. Where they completed via a regular GP visit? The reason I ask is I too am in the UK and would like to get tested for these too.

I'm far from a doctor, however it sounds like your dry eyes are not a 'mild dry eye' - given what you have said. With similar symptoms to you, 2 months ago a doctor looked into my eyes and said "they don't look that dry to me". He had no idea that I had probably just completed hot compress and added drops prior to entering his room. Doctors can be frustrating.

Lastly, given you exposure to screens so much (just like myself) you should consider downloading this piece of software which will help reduce brightness and glare. It also makes the screen look cool I think:

https://justgetflux.com/

Anyway, keep us informed of your progress.

Kevin

[cathy8889]

Hi Carly,

Your experience and symptoms sound similar to mine, minus pinguecula. I started having trouble when I was 20, developed pinguecula which was partly due to me working in smokey pub. Doctors prescribed me lacrilube and did not tell me it was only really suitable for night time use, in the end I only used it at night and did so on and off for 6 years, finally stopping in dec last year as a realised it was exacerbating my problems, at time I did t know I had mgd but now I do I think that the thick ointment was causing more trouble for my meibomian glands, in fact I know it was, I'd wake up in night with eyes glued together.
Have you tried any drops for day? I've found that for last six months I've had to put drops in every half an hour but I'd rTher do that then be unable to see and they are much more refreshing on my eyes.

I have only just had my bloods taken for deficiencies but I suspect that I was b2 deficient earlier this year when things got really bad.

Just last night I started to look in to symptoms of bread/gluten intolerance as I ate a pizza for tea last night and my eyes were terrible in night and upon waking now, I have experienced extreme tiredness, brain fog, digestive problems most acutely over the past year and I really feel there is a connection to this and gluten intake, have you tried a food elimination diet? I started doing one 5 months ago but started to let chocolate and bread cereal back in.

I hope you can find out what's causing it, I have to do warm compresses three times a day and once in night on bad night. They are really helping now I'm in a routine, have you ever been prescribed doxycycline?bit took two years for anyone to prescribe it for me, feel quite sad about this as been struggling by for too long.

I was also meant to say if you're taking any medication for anything else check the side effects.

It took me seven years to find the right drops too, wasn't until a fellow kind dry eye member told me about vismed multi pres free 0.18 that things changed. As I said I' have been putting vismed in 2-3 times an hour, I now know that the drops weren't lasting long in eyes as the toxic oils from meibomian glands were making it unstable. Since being on doxycycline and doing warm compresses, there are parts of day where I don't have to put drops in.

I also do eye exercises 3-4 times a day, usually when my eyes feel bad, I found them on the internet, I do them after my warm compress, I just squeeze my eyes shut for 5 seconds and then leave them open for five seconds, I do this about ten times and my eyes feel much better. I'm also concerned I'm an incomplete blinker so I now consciously do a long blink now and then. All these little things I believe are really helping.
Take care x

[cathy8889]

Hi khmedia,


I've just had blood taken to check whether my body is taking up nutrients properly, I've seen 2 diff opthalmologists neither of them even mentioned it the last one I saw did this test as standard, I couldn't believe it could be done so easily and felt so upset that no one had bothered in past. I feel so let down by my gps and I'm having a meeting with pals to sort it all out as in future I want to ensure that I'm not fobbed off like I have been over past 7 years.

I'd ask your gp about it and if you have an appointment with an oph coming up is write to them prior and explain you've never had such tests done.

Hi Carly,

Your condition and current treatment sounds similar to mine. One of the main differences (and you mention this) is the moisture glasses. I now wear mine 100% of the time at work, even when I am walking about too. I find they are helpful in retaining any moisture in the eye. The pair I have is '7Eye Cape'.

May I ask, those tests you got done. Where they completed via a regular GP visit? The reason I ask is I too am in the UK and would like to get tested for these too.

I'm far from a doctor, however it sounds like your dry eyes are not a 'mild dry eye' - given what you have said. With similar symptoms to you, 2 months ago a doctor looked into my eyes and said "they don't look that dry to me". He had no idea that I had probably just completed hot compress and added drops prior to entering his room. Doctors can be frustrating.

Lastly, given you exposure to screens so much (just like myself) you should consider downloading this piece of software which will help reduce brightness and glare. It also makes the screen look cool I think:

https://justgetflux.com/

Anyway, keep us informed of your progress.

Kevin

[dominorose]

I have Hashimoto's, tested negative for rhumatoid factor, ANA, SSA, SSB too. I'm thinking about doing the lip biopsy, but very scared and not convinced since I don't have joint pain or dry mouth. But I'm tired all the time, suffer from IBS, plus a lot of hormonal problems. The more I read about dry eye patient stories, the more I'm convinced it's not JUST an eye problem. The eye problem is a symptom of something wrong in the body... But what, I don't know. My blood tests were normal, except low estrogen, low progesterone, low AMH and low Vit D.

[CarlyS123]

Hi Kevin
All those tests were done by an endocrinologist. I was referred there because dry eyes is commonly a symptoms of an autoimmune disease and I have a family history of autoimmune diseases (my grandma has coeliac disease and mum and an overactive thyroid). I was also referred there because I had other symptoms such as tiredness etc. Honestly my GP didn't really care, it took them a year before they would even send me to the eye specialist. I think the eye specialist can run a few of these tests too, one mine recently repeated some that the endo did but it is difficult to find an optometrist who cares about dry eyes. Also when I go to the eye specialist I don't put anything in my eyes all day (though I usually only have morning appointments) because like you say you want them to see them naturally, not how they're doing with treatment.
I'll definitely look at that software link and I'm going to get some glasses soon too.

[CarlyS123]

Hi cathy8889 thanks for the reply
Honestly the only relief I've ever had is from LacriLube, eye drops have never really worked on me. The drops I've tried is Hylo-Forte, hyabak, Systane, hypromellose and a bunch of drug store eye drops. I don't really get blurry vision but you make a good point and I think I may have to try giving eye drops another go and see if I improve at all. Its interesting you mention deficiencies because I'm thinking of asking to have my vitamins tested because I have been borderline/low on a lot of the ones they have already tested. I have checked so many of medications but I can't find anything that would suggest dry eyes. I will definitely try those exercises too, right now I'll try anything

[CarlyS123]

Hi Dominorose
I completely agree, this can't just be a random thing you just get for no reason! Have you had your b12 tested too? I've noticed a link between dry eyes, IBS and low B12. Some doctors won't tell you if your B12 is on the low side because the test has really low reference ranges, apparently you can be within range and still get symptoms. I trying to get my b12 treated at the moment but no luck yet. I also had low vitamin D which has been treated now but it didn't make too much of a difference. Someone was telling me that some autoimmune diseases like Sjogrens are called 'slow burners' meaning that you could have the disease and the symptoms but it could take up to 10 years for them to show up on the lab tests. I wonder if that is our problem at the moment

[lizlou29]

Hi Carly

Sorry you are going through this especially whilst at university.

I've also had all the auto-immune blood tests and I've got a pre-op tomorrow for a lip biopsy to test for Sjogren's despite my ANA and RF being negative. I am hypothyroid and take levothyroxine. I also had a severe vit D deficiency but that is resolved now. I've heard that B12 deficiency can make you feel pretty bad so it's good you have found out about that and are increasing your levels. Even though getting your levels up may not make your eyes feel better I think it's easier to deal with dry eye when you are feeling more energetic.

My GP is pretty hopeless too. I just use her to push for referrals and since I made a complaint about her ineptitude she'll happily do these. A nauropathic doctor may be a good idea as Rebecca says. Unfortunately the one I saw wasn't very helpful, said my estrogen levels were those of a menopausal woman when I have since been diagnosed with endometriosis and my estrogen levels are fine. She also tried to sell me a few hundred £'s worth of natural remedies which I didn't buy. If anyone has a recommendation for a good naturopathic doctor in the South East I'd love to know! Can you tell us what area of the UK you are in?

[cathy8889]

Hi Carly, I'm glad you don't get blurry vision with them and they give you relief. I tried a lot of drops too, the last oph I saw said try systane ultra single dose but in a but worried about moving away from vismed and theratears. I just read your symptoms of tiredness and fogginess and reminded me of me, and I really think I may have a candida infection in my gut. Take care x

Hi cathy8889 thanks for the reply
Honestly the only relief I've ever had is from LacriLube, eye drops have never really worked on me. The drops I've tried is Hylo-Forte, hyabak, Systane, hypromellose and a bunch of drug store eye drops. I don't really get blurry vision but you make a good point and I think I may have to try giving eye drops another go and see if I improve at all. Its interesting you mention deficiencies because I'm thinking of asking to have my vitamins tested because I have been borderline/low on a lot of the ones they have already tested. I have checked so many of medications but I can't find anything that would suggest dry eyes. I will definitely try those exercises too, right now I'll try anything