Background Retinopathy

laurakirkup · Jun 25, 2018

Hi all,

So a while ago I went for the annual rettena test, I missed the previous year due to moving and change in doctors but thought nothing of it.
Today I got the results which say there has been a change in both eyes but no treatment is needed at the moment, bellow it says there is background retinopathy on both eyes.
I have been diabetic for nearly 22 years and my results have always come back clear, I remember horror stories of people going blind from poor control when I was younger and although my control is not perfect, (although I am soon to be on the pump to help manage this!) I am terrified!
I really have no idea what happens now, I have never had to worry about the results of these tests but to see that there is now a sign of it has really scared me, how quickly do your eyes deteriorate since it’s first spotted and what is the treatment, also how do you prevent further damage?
Also I am only 25 years old and was not expecting to have to seriously worry about my eyes for a long time, this has come as quite a shock and really next?
I get quite anxious about my health and I don’t want to be worrying every day about my eye sight if there is nothing to worry about.
Thanks for taking the time to read

Laura

Juicyj · Jun 25, 2018

Hi @laurakirkup my last eye test came back with background retinopathy, I've been dx over 6 years now and first few years I had it but then stabilised my levels and it came back as normal so was really disappointing to get it back again this year. I am staying calm about it though as I know I it can go as easily as it came and that as long as it doesn't progress then it's not a problem, it is common so try not to worry.

laurakirkup · Jun 25, 2018

Thank you, it’s good to know it can go away again. I have tried googling it which I think was actually a really bad idea as it co,es up with everything that happens once it get to the advance stages.
I’m trying so hard with my control but it’s just unmanageable, I’m either being resistant to insulin or hyper senesitive to it, I’m hoping the pump will make a big difference but I’m not on that until August and I’m still waiting to go on a Dafney course. It’s just a scary realisation that my body isn’t doing what it’s meant to, which after injecting since I was four you would have thought I was used to by now!
Thank you for replying so quickly, just trying to wrap my head around it and not get worked up X

Knikki · Jun 25, 2018

Yep got the same problem. However once you have been "diagnosed" with it you can't get rid of it. The easy way to manage it is to a) obviously control your sugars, mainly not running high or very high for a long time b) getting eyes checked at least once a year an the back of your retina photographed. Easy

The problem is the way the NHS deals with it by sending out a scary letter with little on no real explanation, I had my eyes check the other week and I am waiting for the yearly "You have background retinopathy......" letter to arrive in the post, it's just printed out by someone and posted out.

I think that is you have had the condition for a long time, over 50 years in my case and 22 years in @laurakirkup then I am afraid then there will be some damage somewhere

laurakirkup · Jun 25, 2018

Knikki said:
Yep got the same problem. However once you have been "diagnosed" with it you can't get rid of it. The easy way to manage it is to a) obviously control your sugars, mainly not running high or very high for a long time b) getting eyes checked at least once a year an the back of your retina photographed. Easy

The problem is the way the NHS deals with it by sending out a scary letter with little on no real explanation, I had my eyes check the other week and I am waiting for the yearly "You have background retinopathy......" letter to arrive in the post, it's just printed out by someone and posted out.

I think that is you have had the condition for a long time, over 50 years in my case and 22 years in @laurakirkup then I am afraid then there will be some damage somewhere

I think your right about the letter! It doesn't have any information other than it's there and it's just such a shock.
Funnily enough my mum just said the same things about the amount of time I have had diabetes for.
thank you for replying!

Juicyj · Jun 25, 2018

You can return to normal again @laurakirkup and you should of received a leaflet with the letter about it ?

laurakirkup · Jun 25, 2018

Juicyj said:
You can return to normal again @laurakirkup and you should of received a leaflet with the letter about it ?

Thank you for posting the leaflet, I only had the letter itself!

Deanuz · Jun 25, 2018

I got the same letter from my last screening its pretty anxious waiting weeks for an appointment for them to tell me that it's slight changes, the letter said significant changes which really does make you panic a bit. But my vision was 5/6 6/6 so it's unaffected yet the advice given was control my sugars better and not to worry, I'm taking both pieces of advice doing the best I can on both

Don't let troubles trouble you until troubles trouble you

Fairygodmother · Jun 25, 2018

I’ve had the same result a couple of times since retinol photos were first instigated and it always disappeared again. I think it’s quite common for T1s to get background retinopathy and for the very small thickening of a tiny blood vessel, or very very minor bleed, to clear up completely.
You’ve been told that no treatment’s required which is a signal that it’s entirely possible to clear it with good control and elimination of other factors that may have an impact on the health of your blood vessels as listed in the leaflet.

EllieM · Jun 25, 2018

Yes, I've had on again off again background retinopathy for years. 25 years ago, at 30, the eye doctors at the hospital said I'd probably need to start laser treatment for it by the time I was 40. I'm 56 now, and they're still monitoring, no treatment yet required. The other thing to remember is that there is treatment available if your eyes do deteriorate: that's why they keep monitoring. Although diabetics do still go blind, the incidence is much rarer than it used to be.
So yes, if you've been ignoring your sugars then use the letter as motivation to do some more blood tests. If you haven't, then don't panic.

laurakirkup · Jun 25, 2018

Deanuz said:
I got the same letter from my last screening its pretty anxious waiting weeks for an appointment for them to tell me that it's slight changes, the letter said significant changes which really does make you panic a bit. But my vision was 5/6 6/6 so it's unaffected yet the advice given was control my sugars better and not to worry, I'm taking both pieces of advice doing the best I can on both

Don't let troubles trouble you until troubles trouble you

Thank you, after years of having all clear results it's a shock to see something different, I am going to check in with my diabetes team next week and see what they say, I just wanted conformation that it's nothing to worry about but all I really know about it is it's a very bad thing and there was nothing else on the letter, so grateful for this site as it really has put my mind at rest!

laurakirkup · Jun 25, 2018

Fairygodmother said:
I’ve had the same result a couple of times since retinol photos were first instigated and it always disappeared again. I think it’s quite common for T1s to get background retinopathy and for the very small thickening of a tiny blood vessel, or very very minor bleed, to clear up completely.
You’ve been told that no treatment’s required which is a signal that it’s entirely possible to clear it with good control and elimination of other factors that may have an impact on the health of your blood vessels as listed in the leaflet.

Thank you, it's good to know it can go and after reading he leaflet that someone was kind enough to post I'm going to have a chat with the clinic. Other than getting a tighter grip on my control there is nothing else I can do to improve the chances of it slowing down or going according to the leaflet but I will chat with the team and see what they say. Be lovely if getting control was easy though!

laurakirkup · Jun 25, 2018

EllieM said:
Yes, I've had on again off again background retinopathy for years. 25 years ago, at 30, the eye doctors at the hospital said I'd probably need to start laser treatment for it by the time I was 40. I'm 56 now, and they're still monitoring, no treatment yet required. The other thing to remember is that there is treatment available if your eyes do deteriorate: that's why they keep monitoring. Although diabetics do still go blind, the incidence is much rarer than it used to be.
So yes, if you've been ignoring your sugars then use the letter as motivation to do some more blood tests. If you haven't, then don't panic.

That's very comforting to hear, thank you. When I was younger going blind and losing a leg was frequently talked about so I jumped to the worst conclusion!
Ignoring my blood sugar is not something I do, I test upwards of 20 times a day to try and keep control, still having issues but hopefully it will improve and make sure my eyes don't get any worse!

Applenerd81 · Jun 27, 2018

Same issue here and ******** my pants! Told there’s nothing to worry about and to focus on keeping right control of my bgs and blood pressure. I’ve been insulin dept. For 24 years ‍

Cumberland · Jun 27, 2018

My retinopathy has steadily got worse that I now have a cataract in my right eye which is causing me some vision impairment so been referred to the hospital

I too was worried when being informed by letter it’s a natural reaction that I think everyone feels

Make an appointment to see your GP or diabetic nurse as retinal screening will have informed your practice

I have had background retinopathy for years

I know it’s a bit daft to say don’t worry because you probably will so I will end by saying best wishes to you x

laurakirkup · Jul 3, 2018

Applenerd81 said:
Same issue here and ******** my pants! Told there’s nothing to worry about and to focus on keeping right control of my bgs and blood pressure. I’ve been insulin dept. For 24 years ‍

It's so scary isn't it! Still waiting to meet with the nurse but I have eventually calmed myself down after speaking to others about it!

laurakirkup · Jul 3, 2018

Cumberland said:
My retinopathy has steadily got worse that I now have a cataract in my right eye which is causing me some vision impairment so been referred to the hospital

I too was worried when being informed by letter it’s a natural reaction that I think everyone feels

Make an appointment to see your GP or diabetic nurse as retinal screening will have informed your practice

I have had background retinopathy for years

I know it’s a bit daft to say don’t worry because you probably will so I will end by saying best wishes to you x

Thank you for replying, sorry to hear it has now affected your eye.

It is a strange comfort to hear people have had it for years before any effect has taken though, I'm hoping it will be some time before anything happens!

Thank you, and yes appointment made with the clinic already! X

Bon83 · Jul 13, 2018

laurakirkup said:
Hi all,

So a while ago I went for the annual rettena test, I missed the previous year due to moving and change in doctors but thought nothing of it.
Today I got the results which say there has been a change in both eyes but no treatment is needed at the moment, bellow it says there is background retinopathy on both eyes.
I have been diabetic for nearly 22 years and my results have always come back clear, I remember horror stories of people going blind from poor control when I was younger and although my control is not perfect, (although I am soon to be on the pump to help manage this!) I am terrified!
I really have no idea what happens now, I have never had to worry about the results of these tests but to see that there is now a sign of it has really scared me, how quickly do your eyes deteriorate since it’s first spotted and what is the treatment, also how do you prevent further damage?
Also I am only 25 years old and was not expecting to have to seriously worry about my eyes for a long time, this has come as quite a shock and really next?
I get quite anxious about my health and I don’t want to be worrying every day about my eye sight if there is nothing to worry about.
Thanks for taking the time to read

Laura

Hi there I'm so glad you started this thread, I got a letter today saying that you do have some background retinopathy. No treatment required. I have always had normal results back. So yes it was quite a shock. Also last year my control probably wasn't anywhere near as good as it is now. Ironically last week I had a check up where the nurse said my blood pressure was great hba1c was good etc etc...I was riding high lol. I was really worried until I read some comments - plus I have only had diabetes 6 years my dad went 60 + years with normal. I'm hopeful that someone said it can go

Bon83 · Jul 13, 2018

laurakirkup said:
Hi all,

So a while ago I went for the annual rettena test, I missed the previous year due to moving and change in doctors but thought nothing of it.
Today I got the results which say there has been a change in both eyes but no treatment is needed at the moment, bellow it says there is background retinopathy on both eyes.
I have been diabetic for nearly 22 years and my results have always come back clear, I remember horror stories of people going blind from poor control when I was younger and although my control is not perfect, (although I am soon to be on the pump to help manage this!) I am terrified!
I really have no idea what happens now, I have never had to worry about the results of these tests but to see that there is now a sign of it has really scared me, how quickly do your eyes deteriorate since it’s first spotted and what is the treatment, also how do you prevent further damage?
Also I am only 25 years old and was not expecting to have to seriously worry about my eyes for a long time, this has come as quite a shock and really next?
I get quite anxious about my health and I don’t want to be worrying every day about my eye sight if there is nothing to worry about.
Thanks for taking the time to read

Laura

Juicyj said:
You can return to normal again @laurakirkup and you should of received a leaflet with the letter about it ?

It's reassuring to know you can turn it back. I'm just gutted it happened when I thought I was doing ok - oh well. I sort of knew it would come back wierd result- I had extremely bad hay fever the day of the screening - not a good year for me

laurakirkup · Jul 15, 2018

Bon83 said:
Hi there I'm so glad you started this thread, I got a letter today saying that you do have some background retinopathy. No treatment required. I have always had normal results back. So yes it was quite a shock. Also last year my control probably wasn't anywhere near as good as it is now. Ironically last week I had a check up where the nurse said my blood pressure was great hba1c was good etc etc...I was riding high lol. I was really worried until I read some comments - plus I have only had diabetes 6 years my dad went 60 + years with normal. I'm hopeful that someone said it can go

It's just quite a shock! I am going to the clinic next week and will let you know what they say with regards to it being reversed!

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