And the not-so-good news ....

[libbylondon]

Last week I posted about my delight that my hba1c had come down from 88 in February to 41. A couple days later I received a letter telling me that my retinopathy check the week before showed that I have pre-proliferative retinopathy. I have an appointment with a consultant on 11 July which I guess is a normal waiting time but feels like a lifetime away right now. I am now terrified and can't think about anything else. I have now read that a rapid drop in bg can worsen retinopathy so feel like my hard work has done as much harm as good. I am wondering whether to try to find a private consultant or just wait it out. Has anyone else done that and if so would you advise it? Coincidentally my two yearly eye test is due next week which includes a retinopathy check too. I don't know if the optician will be able to give me any more information or not (and almost scared to hear it anyway).

 

[Bluetit1802]

I have no personal experience of this, but there are many reports on this forum that they have had abnormal retinopathy checks following a rapid reduction in blood sugar levels but this has rectified itself by the time of the next check. I believe @Rachox may be one of these.

 

[Rachox]

Thanks for the tag @Bluetit1802 . I had my first retinal screen shortly after diagnosis two years ago and it was clear. Last years screen after reducing my HbA1c from 70 to non diabetic in four months showed background retinopathy, I was upset and disappointed. I received info and support from this forum, especially from @Dark Horse who explained that a rapid reduction in HbA1c can have an initial detrimental effect on your retinas but if good control is continued it can put itself right. Here’s the thread: https://www.diabetes.co.uk/forum/threads/worried-by-my-retinal-screening-result.148002/
I recently had my third retinal screen and am waiting impatiently for the results.

 

[Member496333]

Yes it’s not uncommon. I was diagnosed diabetic through retinopathy. Initially it got better but then exploded as I got myself under real control. I had to have bilateral laser which brought about serious macular oedema in one eye, for which I had to have anti-VEGF injections. Everything mostly cleared up, but just very recently, with even further improved glucose, I’ve developed oedema in the other eye, which may also require anti-VEGF if it develops further.

Unfortunately it’s often a classic case of something getting worse before it gets better. It can apparently take up to three years before everything fully settles down. For me, I’m just waiting and hoping. Nothing further I can do but stay on the righteous path. Look after yourselves folks. Complications are no fun.

 

[libbylondon]

Thanks for the tag @Bluetit1802 . I had my first retinal screen shortly after diagnosis two years ago and it was clear. Last years screen after reducing my HbA1c from 70 to non diabetic in four months showed background retinopathy, I was upset and disappointed. I received info and support from this forum, especially from @Dark Horse who explained that a rapid reduction in HbA1c can have an initial detrimental effect on your retinas but if good control is continued it can put itself right. Here’s the thread: https://www.diabetes.co.uk/forum/threads/worried-by-my-retinal-screening-result.148002/
I recently had my third retinal screen and am waiting impatiently for the results.

Thank you Rachox. I had read some of the previous threads and wasn't sure whether it was just the earlier background stage which could eventually right itself. Fingers crossed for your results and hope you get good news.

 

[libbylondon]

Yes it’s not uncommon. I was diagnosed diabetic through retinopathy. Initially it got better but then exploded as I got myself under real control. I had to have bilateral laser which brought about serious macular oedema in one eye, for which I had to have anti-VEGF injections. Everything mostly cleared up, but just very recently, with even further improved glucose, I’ve developed oedema in the other eye, which may also require anti-VEGF if it develops further.

Unfortunately it’s often a classic case of something getting worse before it gets better. It can apparently take up to three years before everything fully settles down. For me, I’m just waiting and hoping. Nothing further I can do but stay on the righteous path. Look after yourselves folks. Complications are no fun.

Thanks Jim, sorry to hear you have had a further complication and I hope it gets resolved. I saw your comment on another thread about how nasty the injections were so I hope you don't have to go through it again. Good luck.

 

[Member496333]

Thanks Jim, sorry to hear you have had a further complication and I hope it gets resolved. I saw your comment on another thread about how nasty the injections were so I hope you don't have to go through it again. Good luck.

Thank you. The injections aren’t really that bad. Unpleasant at the time but I’d have another tomorrow if necessary.

Best of luck to you and of course @Rachox. There’s nothing you can do other than keep good control and stay positive that eventually everything will right itself. I’m sure it will, and if it doesn’t, the technology and treatment available is very advanced.

 

[libbylondon]

Thank you. The injections aren’t really that bad. Unpleasant at the time but I’d have another tomorrow if necessary.

Best of luck to you and of course @Rachox. There’s nothing you can do other than keep good control and stay positive that eventually everything will right itself. I’m sure it will, and if it doesn’t, the technology and treatment available is very advanced.

Yes that's good advice. I saw something yesterday which said to focus on what we can control and not what we can't. Will keep that in mind. Thanks again.

 

[Member496333]

To add, if at any stage you need treatment, and have the choice between laser or injections, choose the injections. It’s far less likely to cause any damage to your vision. Also the laser treatment is far more unpleasant. I’m sure it won’t come to any of that, but just a heads-up and something for you to consider if the time comes.

 

[libbylondon]

To add, if at any stage you need treatment, and have the choice between laser or injections, choose the injections. It’s far less likely to cause any damage to your vision. Also the laser treatment is far more unpleasant. I’m sure it won’t come to any of that, but just a heads-up and something for you to consider if the time comes.

Thank you for that advice, will bear that in mind.

 

[Dark Horse]

Last week I posted about my delight that my hba1c had come down from 88 in February to 41. A couple days later I received a letter telling me that my retinopathy check the week before showed that I have pre-proliferative retinopathy. I have an appointment with a consultant on 11 July which I guess is a normal waiting time but feels like a lifetime away right now. I am now terrified and can't think about anything else. I have now read that a rapid drop in bg can worsen retinopathy so feel like my hard work has done as much harm as good. I am wondering whether to try to find a private consultant or just wait it out. Has anyone else done that and if so would you advise it? Coincidentally my two yearly eye test is due next week which includes a retinopathy check too. I don't know if the optician will be able to give me any more information or not (and almost scared to hear it anyway).

Pre-proliferative retinopathy is not considered urgent so an appointment on 11 July is fine. You will have further tests to confirm whether or not you do have pre-proliferative retinopathy and, depending on the result, you may be offered a) treatment b) more frequent monitoring in the eye department, c) more frequent monitoring in the eye screening service or d) annual monitoring in the eye screening service. It's just a matter of wait and see at this stage - early pre-proliferative retinopathy does not need treatment and may revert to 'background retinopathy' if control is good.

As @Rachox has mentioned, a sudden improvement in diabetic control is thought to increase the risk of worsening of retinopathy in the short-term but reduces the risk in the long-term. There's some info here:- http://diabeticretinopathy.org.uk/pre-proliferative.html

 

[libbylondon]

Pre-proliferative retinopathy is not considered urgent so an appointment on 11 July is fine. You will have further tests to confirm whether or not you do have pre-proliferative retinopathy and, depending on the result, you may be offered a) treatment b) more frequent monitoring in the eye department, c) more frequent monitoring in the eye screening service or d) annual monitoring in the eye screening service. It's just a matter of wait and see at this stage - early pre-proliferative retinopathy does not need treatment and may revert to 'background retinopathy' if control is good.

As @Rachox has mentioned, a sudden improvement in diabetic control is thought to increase the risk of worsening of retinopathy in the short-term but reduces the risk in the long-term. There's some info here:- http://diabeticretinopathy.org.uk/pre-proliferative.html

Thank you Dark Horse, that's really informative and reassuring. It was my first test so don't know how early it is or if I have had it for some time, but will hope for the best and try to calm down in the meantime! I was discharged a couple of years ago as a Moorfields out-patient after regular screening for glaucoma. It wasn't (and not in my family) but they seemed a bit puzzled by high pressure readings which were eventually attributed to thicker than normal cornea. Not sure if the retinopathy would have been picked up then had it been present. Anyway, thanks again for the advice.

 

[Listlad]

As @Rachox has mentioned, a sudden improvement in diabetic control is thought to increase the risk of worsening of retinopathy in the short-term but reduces the risk in the long-term.

This implies that a gentle (not so sudden) improvement in diabetic control might be more appropriate?

 

[Rachox]

This implies that a gentle (not so sudden) improvement in diabetic control might be more appropriate?

I’m going with the thought that a rapid improvement reduces the retinal risks long term. By reducing my HbA1c quickly I have improved so many other things quickly, BP, weight, symptoms of arthritis, energy levels etc...

 

[LittleGreyCat]

Coincidentally my two yearly eye test is due next week which includes a retinopathy check too. I don't know if the optician will be able to give me any more information or not (and almost scared to hear it anyway).

Well worth going.
My Optometrist always gives me a really good going over.
I had a notification after my annual eye screening that there were some signs of background retinopathy.
My Optometrist looked really thoroughly and couldn't find anything wrong, so it may have cleared again.

I now have my retinopathy photos and my Optometrist appointment scheduled 6 months apart so that my two checks a year are as far apart as possible. They were originally close together.

I have an eye test every year (long term spectacle wearer) but most Opticians will give you an extra test if you are diabetic. SpecSavers did this for me when I thought my prescription had changed and I also wanted a set of cheap single vision lenses.

 

[Dark Horse]

This implies that a gentle (not so sudden) improvement in diabetic control might be more appropriate?

Some people think so. It's discussed here:- http://diabeticretinopathy.org.uk/retinopathyprogression.htm

 

[libbylondon]

Well worth going.
My Optometrist always gives me a really good going over.
I had a notification after my annual eye screening that there were some signs of background retinopathy.
My Optometrist looked really thoroughly and couldn't find anything wrong, so it may have cleared again.

I now have my retinopathy photos and my Optometrist appointment scheduled 6 months apart so that my two checks a year are as far apart as possible. They were originally close together.

I have an eye test every year (long term spectacle wearer) but most Opticians will give you an extra test if you are diabetic. SpecSavers did this for me when I thought my prescription had changed and I also wanted a set of cheap single vision lenses.

Thanks, yes will definitely go and they won't hand over my new batch of contact lenses if I don't! That's good advice about spacing out appointments, will try to do that too.

 

[LooperCat]

I have no personal experience of this, but there are many reports on this forum that they have had abnormal retinopathy checks following a rapid reduction in blood sugar levels but this has rectified itself by the time of the next check. I believe @Rachox may be one of these.

I had exactly this. Reduced my HbA1c from 89 to 43 in a few months and went from background in both eyes to pre-proliferation in one and maculopathy in the other. By the enhanced scans came round a few weeks later, there was no detectable damage in either eye. I do take vitamin D supplements too.

 

[Rachox]

Just a quick update on my recent retinal screening. I am now ‘normal’, I’m so relieved!
Proof that background retinopathy can disappear
I hope this provides some reassurance for you @libbylondon x

 

[libbylondon]

Just a quick update on my recent retinal screening. I am now ‘normal’, I’m so relieved!
Proof that background retinopathy can disappear
I hope this provides some reassurance for you @libbylondon x

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@Rachox - thanks for letting us know. That's great news, so pleased for you!