Mild retinopathy for first time - worried about longer term driving

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Lizzy78

Lizzy78

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Relationship to Diabetes
Type 1
Hi all.















I'm 44, was diagnosed Type 1 at age 40. At my eye screening this year, I received a letter saying there was mild retinopathy in my right eye, but no further action was needed. I am starting to worry about longer term, and of it gets worse and I get my medical licence revoked. I need to drive to work and have a car on finance and really need my car. When I spoke to my consultant, she said it was very mild, and to just try keep on top of my levels. Just wondering if anyone can share any of their experience on this. This year has been the first sign of complications, and it's thrown me a bit.

Thanks
 
I am guessing the results letter said "background retinopathy" I had one of those letters a couple of years ago and then last year it was clear again and I am far from the only one to experience that where it has rectified itself. The important thing is that it doesn't need any treatment and you are still just on annual screening. Even if it was something more serious, there are plenty of treatment options before you would be at risk of losing your licence, so really no cause for concern at this stage, but maybe just a slight prompt to manage your levels as well as you can.
If you are experiencing any difficulties with your BG management then seek help and support with that, but sometimes it just happens despite your very best efforts and good BG control, so try not to worry too much and hopefully you will be like many of us and it will sort itself out in a year or two and you will be back to getting "all clear" letters again.
 
I had a background retinopathy verdict from the first consultant appointment after T1 diagnosis in 2001. Same result every screening since, despite a few years of less than great control, but never progressed to the point of needing treatment or in any way affected my vision.
I'm sure you already know, but you should be getting regular sight tests from an optician in addition to retinopathy screening, which you don't have to pay for as a T1.
Keep on top of your levels and there's no reason for it to go any further.
 
rebrascora said:
I am guessing the results letter said "background retinopathy" I had one of those letters a couple of years ago and then last year it was clear again and I am far from the only one to experience that where it has rectified itself. The important thing is that it doesn't need any treatment and you are still just on annual screening. Even if it was something more serious, there are plenty of treatment options before you would be at risk of losing your licence, so really no cause for concern at this stage, but maybe just a slight prompt to manage your levels as well as you can.



If you are experiencing any difficulties with your BG management then seek help and support with that, but sometimes it just happens despite your very best efforts and good BG control, so try not to worry too much and hopefully you will be like many of us and it will sort itself out in a year or two and you will be back to getting "all clear" letters again.



Thank you. My levels haven't been great the past year or so. But I have seeked help and I am also going on the Dafne course in the new year. It is a wake up call.
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iharding said:
I had a background retinopathy verdict from the first consultant appointment after T1 diagnosis in 2001. Same result every screening since, despite a few years of less than great control, but never progressed to the point of needing treatment or in any way affected my vision.



I'm sure you already know, but you should be getting regular sight tests from an optician in addition to retinopathy screening, which you don't have to pay for as a T1.



Keep on top of your levels and there's no reason for it to go any further.


Hi. Thanks. It's just a thought, maybe losing my license due to eyesight issues.
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DAFNE is great and I am sure will help you iron out any problems you are having. Is it an in person course or an online version. I would highly recommend in person, if you have that option. Spending a week in the company of other Type 1s is in itself incredibly beneficial even before you consider the course content. You realize just how individual we all are and the different challenges we each face with our diabetes and you learn how to problem solve for each other, so that 10 years down the line, if you face that issue, you have learned how to go about fixing it.
 
rebrascora said:
DAFNE is great and I am sure will help you iron out any problems you are having. Is it an in person course or an online version. I would highly recommend in person, if you have that option. Spending a week in the company of other Type 1s is in itself incredibly beneficial even before you consider the course content. You realize just how individual we all are and the different challenges we each face with our diabetes and you learn how to problem solve for each other, so that 10 years down the line, if you face that issue, you have learned how to go about fixing it.

I can only do the online one unfortunately due to work commitments, but have heard its a great course. I have a good friend with Type 1 who I actually met when we were admitted to hospital at the time, so I know what you mean about that peer support.
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Mate I've had T1 for just over 50 years. Background retinopathy first diagnosed in the mid 1990s (by my optician when going for a normal eyesight check) not by the hospital D clinic checks. When I told my endo the next time I saw him, he checked himself and commented that Mr J the optician must have better eyesight than him, as he couldn't spot anything!

Anyway I moved area in 1998 and the new hospital actually had an eye hospital and yeah, they agreed I had it. I have never ever so far needed any treatment for it or had anything other than annual checks. Latest check earlier this year said 'No changes detected' - to which we both said 'What?' but anyway since then I've as usual had a normal optician's eyesight test and new spectacles and had all the usual peripheral vision checks they do for folk with driving licences and no prob whatever - there never have been.

For goodness sake - don't spend your life worrying about summat that might not ever affect you!
 
Lizzy78 said:
Hi all.















I'm 44, was diagnosed Type 1 at age 40. At my eye screening this year, I received a letter saying there was mild retinopathy in my right eye, but no further action was needed. I am starting to worry about longer term, and of it gets worse and I get my medical licence revoked. I need to drive to work and have a car on finance and really need my car. When I spoke to my consultant, she said it was very mild, and to just try keep on top of my levels. Just wondering if anyone can share any of their experience on this. This year has been the first sign of complications, and it's thrown me a bit.

Thanks
Click to expand...

There are great type 1's on here, with amazing advice.
It's worth trying to get on top of anything they advise to be honest.
 
trophywench said:
Mate I've had T1 for just over 50 years. Background retinopathy first diagnosed in the mid 1990s (by my optician when going for a normal eyesight check) not by the hospital D clinic checks. When I told my endo the next time I saw him, he checked himself and commented that Mr J the optician must have better eyesight than him, as he couldn't spot anything!















Anyway I moved area in 1998 and the new hospital actually had an eye hospital and yeah, they agreed I had it. I have never ever so far needed any treatment for it or had anything other than annual checks. Latest check earlier this year said 'No changes detected' - to which we both said 'What?' but anyway since then I've as usual had a normal optician's eyesight test and new spectacles and had all the usual peripheral vision checks they do for folk with driving licences and no prob whatever - there never have been.















For goodness sake - don't spend your life worrying about summat that might not ever affect you!







Mate I've had T1 for just over 50 years. Background retinopathy first diagnosed in the mid 1990s (by my optician when going for a normal eyesight check) not by the hospital D clinic checks. When I told my endo the next time I saw him, he checked himself and commented that Mr J the optician must have better eyesight than him, as he couldn't spot anything!







Anyway I moved area in 1998 and the new hospital actually had an eye hospital and yeah, they agreed I had it. I have never ever so far needed any treatment for it or had anything other than annual checks. Latest check earlier this year said 'No changes detected' - to which we both said 'What?' but anyway since then I've as usual had a normal optician's eyesight test and new spectacles and had all the usual peripheral vision checks they do for folk with driving licences and no prob whatever - there never have been.







For goodness sake - don't spend your life worrying about summat that might not ever affect you!





Thanks for your reply. Do you drive yourself? I know I'm worry about what ifs. I checked DVLA and its says you only report retinopathy if its in both eyes, but not sure if that's if you need treatment for it. I'm thinking too far ahead. Something I need to try and stop.
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You don’t report background retinopathy to the dvla no, you’re panicking about nothing.
 
Forgot to add… I also have background retinopathy in my right eye. I use insulin, drive long distances, not needed any treatment just normal annual screening, and haven’t needed to notify the dvla of my retinopathy.

Even if you (incredibly unlikely) completely lost the vision in one eye you still don’t need to even notify the dvla so long as you can still meet the standards of vision required with the other eye
 
One of sister's neighbours lost the sight in one eye when she was about 18 months old - she learned to drive and drove same as anyone else. My licence due for renewal again next June and I've never needed to tell DVLA anything in between renewals. I obviously had to take a break whilst I was having cataract surgery, but only a couple of months until I was signed off from it and got my specs updated.
 
Thanks for your reply. Do you drive yourself? I know I'm worry about what ifs. I checked DVLA and its says you only report retinopathy if its in both eyes, but not sure if that's if you need treatment for it. I'm thinking too far ahead. Something I need to try and stop.
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Only need to report retinopathy if you have had laser treatment in both eyes.

Again as long as you pass their field vision test you can still drive. 🙂
Only problem with worrying to much is you end up growing worry warts 🙂
 
Lucyr said:
Forgot to add… I also have background retinopathy in my right eye. I use insulin, drive long distances, not needed any treatment just normal annual screening, and haven’t needed to notify the dvla of my retinopathy.

Even if you (incredibly unlikely) completely lost the vision in one eye you still don’t need to even notify the dvla so long as you can still meet the standards of vision required with the other eye
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Thank you. I'm getting myself in a tizz about it.
 
trophywench said:
One of sister's neighbours lost the sight in one eye when she was about 18 months old - she learned to drive and drove same as anyone else. My licence due for renewal again next June and I've never needed to tell DVLA anything in between renewals. I obviously had to take a break whilst I was having cataract surgery, but only a couple of months until I was signed off from it and got my specs updated.
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Thanks, thats good to know.
 
Pumper_Sue said:
Only need to report retinopathy if you have had laser treatment in both eyes.

Again as long as you pass their field vision test you can still drive. 🙂
Only problem with worrying to much is you end up growing worry warts 🙂
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So you mean if you had laser treatment in both eyes, they would then send for a field vision test, and I would be fine as long as I passed that?
 
Lizzy78 said:
So you mean if you had laser treatment in both eyes, they would then send for a field vision test, and I would be fine as long as I passed that?
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Yeah, if you lose sight in one eye or you need laser treatment in both eyes you need to notify DVLA but it doesn’t actually mean you can’t drive. Just means they need to do extra tests to check if you’re safe to drive. Given you only have background retinopathy and only in one eye then driving is absolutely nothing to worry about.
 
Lucyr said:
Yeah, if you lose sight in one eye or you need laser treatment in both eyes you need to notify DVLA but it doesn’t actually mean you can’t drive. Just means they need to do extra tests to check if you’re safe to drive. Given you only have background retinopathy and only in one eye then driving is absolutely nothing to worry about.
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Thanks Lucy, that's reassuring to know.
 
I don't actually mind doing the peripheral vision test - I mean you are supposed to keep an eye out for eg disappearing children, dogs etc whilst you're driving normally. I'd rather be sure I still have the likelihood to do that, all in all.
 
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