UK Keratoconus Self-Help and Support Association

Hi

I'm 25 years old and was diagnoised with Keratoconus 5...6 years ago. Can't quite remember. It was also the same time I was diagnoised with a thyroid condition and was starting uni so there was a lot going on at the time. Hated it to start with because I have a fear about things being in my eyes so getting use to wearing contacts was a challenge. My left eye is totally screwed - I can't even read the biggest letter on the board and I've got really bad double vision without my lens in. Right eye has got progressivly worse over the years. I've had all sorts of lenes. Hard and soft. For the last year, maybe more, I've wearing a hard lens with a soft lens over it in my left eye (a reverse piggy backing kind of thing) because my lens kept fogging up everytime I blinked. Over the years I've swapped between hard and soft lens in my right eye because of the fogging up thing. This seems to have stopped a bit so on my last visit I was given a new hard lens which I do wear sometimes but getting use to hard lens again makes me just want to put the soft lens in and forget about it.

I'm having CXL done on my right eye next month and am terrified because of things coming near my eye. Normally I'm pretty good at facing things I don't like because I can just close my eyes and pretend it's not happening. Not an option here. And I just stupidly read the post about a lad that had it done and it didn't seem to go that well...

Been reading other posts on the site and it was nice (doesn't seem the right word but anywho) to hear other people have the same problems. Wind and dust drive me mad and sets my eyes streaming and hurting and I can't concentrate on anything else. So I'm also distracted or scared of getting something in my eye when I'm out at work or just with mates and especially when driving. My eyes get irritated and I'd love to be able to take my lens out but without them I can't do much. I love to read but without my lens can only manage 10-20 minutes before vision gets blurry and my eyes strain. Watching tv with double vision hurts. Due to breaking and losing my variety of lenses I was without them for about a week which made work a real pain - I spend everyday at a computer.

It seems I moan a lot to my friends and family about my lenses but without them or when something goes wrong it really interupts my life. To be fair I do have times when my condition is fine and my lenses are fine but when there's problems I just wish I had a different condition like short/long sighted 1) so you have the option of an off day from lenses and can use glasses and 2) could easily get lenses and solutions from a chemist. Also would make explaining why I need lenses to people and why I have such a variety of them easier.

I don't usually write this much but I'm having a bad lens day (I've torn the soft lens in my left eye and it's irritating but won't have a replacment till next week. my own fault for not reordering sooner but still grrr) and needed to rant to people that I'm hoping will understand.

Hope you made it to the end!
Cath

Cath

I have moved your post from the backwater in which you originally posted it to the more readily accessible General Discussion Forum, and want firstly to welcome you to the Keratoconus Self-Help and Support Group forums.

I know how daunting the prospect of surgery can be, and I am sure that there will be someone along in a moment who can give you reassurance and advice. In the meantime please know that you are not alone; others share your condition and some have passed the way you are taking.

Every good wish

Andrew

Dear Cath,

I was reading your post and I thought at last...somebody just like me! I was diagnosed with an underactive thyroid when I was fourteen and Keratoconus when I was fifteen. I started to go to university to study Primary Education but I had to give it up due to not being able to wear my contact lenses for a long period of time.

I have now been looking for a job for over a year and nobody seems to want me! I do try to keep positive, though. My family and friends are a great support. I also noticed you said you like to read, well I am the same but I just get so frustrated not being able to see the small print! So, I bought a Kindle from Amazon and I can tell you it has totally changed my reading experience, you can change to font size to MASSIVE and have extra spacing between the lines!

How are you coping with your thyroid condition? Are you overactive or underactive?, I know myself that I still can feel pretty rough, even though I am on 150mcg Thyroxine everyday. Well, it is just so nice to finally write to someone who is completely in the same boat as me! I hope that everything goes well with the CXL and try to keep calm about the lens thingy, you will get the hang of it eventually.

Jennie x

Hi Jennie,

Thanks for your message. It is nice to know someone is in the same boat as you though I'm sorry you've been having a tough time on the job front. How's that going? As to my thyroid; I was originally overactive for about 18 months before having the radioactive iodine treatment which eventually sent me underactive. There was 12 months in between where I was normal according to my blood tests but I still felt utterly rubbish. I'm on 75mcg daily now, though I'll be getting my results from my latest blood test next week so that might change. I'm actually feeling fine so the doctor will probably say my dosage needs to go up. For some reason how I feel and what my test results show never match up. Do you find that? Hope you're doing ok with it all.

Thanks for the advice on the Kindle. Buying an e-reader will go against all my book loving notions but maybe in the future needs must overule. I'll probably have to put up with audio books for a bit after CXL. Only 11 days to go...eek!

Take care
Cath

Hey

So yes 11 days to go until CXL. If anyone reads this before then that has had it done...what's it like and what was your recovery time like? I know it'll be different for everyone and if my medical history is anything to go by I'll be the awkward patient with complications. Don't know if asking these questions is going to be reassuring, especially if everyone's just got horror stories but I'll keep my fingers cross that someone's had a good experience with it...

Thanks
Cath

Dear Cath,

I totally know how you feel about the blood test matching up with how you feel! I just think it might be the condition! You poor thing - going from overactive to underactive, that must have been so frustrating! Sometimes I do feel like a pin cushion with all the blood tests! Lol. I didn't get my diagnosis for ages so I do not really have a thyroid left!

I am so glad that you have decided to get a e reader, mine is very good even though I really miss the feel of a good paperback! Where about in the country are you? I am in Kent! I hope everything goes smoothly with the CXL and it helps you out.

Take Care

Jennie xx

I found the valium they gave me before my CXL did wonders. lol.

Hi Ozfiz

Do you know if CXL work well with intacs? I had mine put in about 5 years ago now. All in all they are working really well but still have some off days. I have considered looking into the CXL if it works just to try something new really.

Kathy

I had an intac put into my right about 3 years ago, then had CXL on the same eye about 12mths later.

Unfortunately my intac was pushed to the surface of the eye and was removed last week.

I do not believe the intac being rejected was a result of the CXL being done after, when the cornea was scraped he did this manually rather then using the brush.
I am seeing my doctor again in about 6weeks, so I will enquire if the rejection and the CXL were related.

My left eye is not as far as advanced and has only had CXL treatment on it. I think it may have progressed VERY slightly, but i still have 20/20 vision in the left eye and can still read the bottom line on the chart (for comparison i can only just read the top line on the chart with the right eye lol)

The theory my doctor gave me for having the CXL done after the intac was that CXL will help maintain the shape in which the intac has corrected.
I haven't been able to get decent topographies due to the light sensitivity that the intac caused. However I feel that now the intac is removed i should be able to get decent ones to see how the progression is going.

Getting it done is not a bad idea i feel, they say the reason behind the CXL is to strengthen the eye and slow the progress, so I don't think you would have any thing to loose by doing it.