Retinopathy

[Suzi]

Hi All,
I am 40 year old who has had diabetes type 2 for about 8 years. There were a lot of issues about my diagnoses and treatment but it settled down in the last few years when the medication mix seemed to start working.
I have attended my eye screening appointments since I was diagnosed and never had a problem until today, I received the results of my screening that I attended a couple of weeks ago. They have confirmed that I have some background retinopathy but that I don't need treatment yet and I will have an appointment next year.
However this has come as a massive shock and I am really stressed out by it, I cannot get through to my doctors surgery to speak to my doctor (however in all honesty every time I speak to her I end up in tears out of sheer frustration). The NHS website really does not provide many details about this and I really need to know what I can do to try and stop it from getting any worse - all it says is manage your diabetes, which I have been doing particularly over the past few years, I have a level of 48 at my last blood test (about 6 months ago). I have my yearly check-up in a couple of weeks but due to the shortage of blood testing bottles I cannot get my up to date HBA1C .
I am watching what I eat (speaking to a dietician to help), losing weight, exercising, ensuring my meds are taken and generally looking after myself - what else can I do to try and prevent this worsening?
If anyone has any ideas or tips it would be much appreciated?
I have been crying non-stop since the letter came through a couple of hours ago but I really need to try and do something pro-active instead of dwelling on the results.

 

[Bruce Stephens]

However this has come as a massive shock and I am really stressed out by it, I cannot get through to my doctors surgery to speak to my doctor (however in all honesty every time I speak to her I end up in tears out of sheer frustration).

Please try to relax! The letter is worrying, but it's just something to do with the wording.

If they were worried you would be getting an appointment much sooner, so you fall into the rather common category of having signs of background retinopathy that just needs monitoring so see you next year. Many of us (including me) have been there for decades.

It used to be assumed that retinopathy was inevitable (that's what I was told), but it's now known that it's not. And it can improve as well as get worse. So keep good control, make sure your blood pressure is OK. And don't panic.

 

[Drummer]

I had background retinopathy at my first screening, and it was gone the following year.
I did take my Hba1c down to 41 though, the top end of normal, but I don't know it if was relevant or my doing two meals a day 12 hours apart as that seemed to keep my blood glucose very even, no spikes.
It can, and has been seen to go away, so it is possible to survive retinopathy without treatment or damage.

 

[Suzi]

Thanks Bruce, I tend to panic very easily. I will try and stay calm, my partner didn't know what to do when I just dissolved into tears. I remember them telling me early on that it would more than likely develop and get worse much like the diabetes, I suppose I just didn't expect it. But thank you for the response and re-assuring me that it doesn't necessarily spell disaster straight away!

 

[Suzi]

I had background retinopathy at my first screening, and it was gone the following year.
I did take my Hba1c down to 41 though, the top end of normal, but I don't know it if was relevant or my doing two meals a day 12 hours apart as that seemed to keep my blood glucose very even, no spikes.
It can, and has been seen to go away, so it is possible to survive retinopathy without treatment or damage.

Thank you, that helps to know it can go away. Interesting what you are saying about the 2 meals a day, I was considering looking at some fasting ideas to see if it helps with the weight loss, however my doctor is a bit reluctant about me doing anything like that due to my medication. I'll try to get a phone call with her (yeah like that'll happen!) and see what she thinks.

 

[Drummer]

Thank you, that helps to know it can go away. Interesting what you are saying about the 2 meals a day, I was considering looking at some fasting ideas to see if it helps with the weight loss, however my doctor is a bit reluctant about me doing anything like that due to my medication. I'll try to get a phone call with her (yeah like that'll happen!) and see what she thinks.

What medication are you taking which would require you to eat?

 

[Leadinglights]

It is an alarming letter to receive and one I got when in prediabetic zone but the next year it was OK. I think it is important to try to get you HbA1C down to help the retinopathy from getting worse and hopefully seeing improvement.
Looking at your intake of carbohydrates and trying to reduce them will have the biggest effect on your glucose levels.
Establishing a good sustainable low carb regime works for many people. Although everybody has to go what is right for them.

 

[Suzi]

What medication are you taking which would require you to eat?

I take pioglitazone and inject liraglutide - when I suggested fasting last month to my doctor she said I could have a hypo so I shouldn't fast. However to be honest I don't trust my doctor I argue consistently with her about my treatment.

 

[Bruce Stephens]

I remember them telling me early on that it would more than likely develop and get worse much like the diabetes

Neither of those is necessarily true. Both may get better rather than worse. Or stay much the same.

For retinopathy I had one or two 6 monthly scans when it got a bit worse. But now I'm back to annually since it improved enough. (Thanks to removing the brain tumour which was causing higher blood pressure and blood glucose.)

 

[Barbie1]

Hi Suzi
I agree with Bruce and Drummer - don’t panic!
I have had “background retinopathy” every year for the last 25 years and as long as they say they’ll see you in another 12 months, that indicates it is nothing to get too concerned about at the moment. If it was, they would call you back much earlier than 12 months.

And if it was more serious, there is lots they can do to help resolve it if it is caught early. Which is exactly why we get these screenings every year.

Certainly good blood sugar control will be to the good, so the more you can do to achieve that, the better

The NHS letters are worded quite badly and I and many others have suggested they should be clearer, but to no avail, obviously!

 

[Suzi]

It is an alarming letter to receive and one I got when in prediabetic zone but the next year it was OK. I think it is important to try to get you HbA1C down to help the retinopathy from getting worse and hopefully seeing improvement.
Looking at your intake of carbohydrates and trying to reduce them will have the biggest effect on your glucose levels.
Establishing a good sustainable low carb regime works for many people. Although everybody has to go what is right for them.

Thanks for the advice on the carbs which I am doing Yes I have to say I don't think the wording helps, it tells you there is something wrong but then doesn't elaborate much. I have now arranged an phone call with my doctor but not until the 28th. Everyones responses here have been helpful and I have stopped the crying now. Hopefully I can get a blood test at some point to see if my HBA1C has hiked up.

 

[Suzi]

T

Hi Suzi
I agree with Bruce and Drummer - don’t panic!
I have had “background retinopathy” every year for the last 25 years and as long as they say they’ll see you in another 12 months, that indicates it is nothing to get too concerned about at the moment. If it was, they would call you back much earlier than 12 months.

And if it was more serious, there is lots they can do to help resolve it if it is caught early. Which is exactly why we get these screenings every year.

Certainly good blood sugar control will be to the good, so the more you can do to achieve that, the better

The NHS letters are worded quite badly and I and many others have suggested they should be clearer, but to no avail, obviously!

Thanks Barbie, I am attempting to bring the panic into check, I have calmed down a bit after reading the responses from everyone they have all been very helpful and I am so grateful for the advice - diabetes has a horrible habit of making you feel very alone! I will continue with my carb monitoring and exercise and hope that when I get my blood test that the HBA1C has not shot up. Yes that wording is not the best, they just tell you there is an issue and that they'll see you next year, but as everyone else has said it can be controlled and changed which is the main thing.

 

[helli]

In England, retinal scans are checked by humans. They are double checked and, if necessary, triple checked. But it is still susceptible to human error looking for very small bleeds or marks.
I have had background retinopathy a few years back but been completely clear for the last 3 years.
As others have said, it is nothing to panic about and it is something that good diabetes management can reverse.

Whilst the letters are not great, I prefer to think of it as positive that I am on their radar - in some areas, if you have a clear scan, it can be 2 years before your next one.

(FYI in Scotland, where one photo is taken of each eye, the scans are checked by AI computer program but this does not work in England where two photos are taken of each eye. I had a chat with the "photographer" last time I had my scan.)

 

[ianf0ster]

I too was told I had background retinopathy at my last check (just a few weeks ago).
Strangely, that was after having my HbA1C in the normal range for about 1yr.
I didn't have any retinopathy at my last review, however I'm not too concerned since I have heard of lots of cases where either it has reversed or was mistakenly diagnosed in the first place.

 

[Suzi]

In England, retinal scans are checked by humans. They are double checked and, if necessary, triple checked. But it is still susceptible to human error looking for very small bleeds or marks.
I have had background retinopathy a few years back but been completely clear for the last 3 years.
As others have said, it is nothing to panic about and it is something that good diabetes management can reverse.

Whilst the letters are not great, I prefer to think of it as positive that I am on their radar - in some areas, if you have a clear scan, it can be 2 years before your next one.

(FYI in Scotland, where one photo is taken of each eye, the scans are checked by AI computer program but this does not work in England where two photos are taken of each eye. I had a chat with the "photographer" last time I had my scan.)

Yes, I know I shouldn't moan about getting the screening, as I am luckier than most that I do get mine regularly (my dad is in Scotland and he hasn't been able to get a yearly check up for the past 2 years). The whole thing just shocked me I think because of the effort I have put in since the lockdowns with exercise and weight loss which is now working, to hear that was just a bit of a slap in the face to be honest. But as everyone has said it is not necessarily permanent and can improve.

 

[Suzi]

I too was told I had background retinopathy at my last check (just a few weeks ago).
Strangely, that was after having my HbA1C in the normal range for about 1yr.
I didn't have any retinopathy at my last review, however I'm not too concerned since I have heard of lots of cases where either it has reversed or was mistakenly diagnosed in the first place.

Thanks Ian, it sounds like you are in the same situation as me, I got my HBA1C to 48 and it has been in the 50's for the last 2 years so I was shocked at the response particularly with the weight loss I have achieved. But I have calmed down a little now and stopped bubbling after reading all of the responses about getting it improved. I will speak to my doctor soon and see what I can do to try and get this reversed.

 

[everydayupsanddowns]

So sorry you have had *that letter* @Suzi - and yes I agree, it really shook me up when I got one, and the wording made me feel like sight loss was just around the corner.

But the next year I had an all clear, then a couple of years later I had another ‘background changes’ letter (much calmer that time), and I’ve been all clear ever since.

Glad you have found the responses on the forum reassuring.

As @Bruce Stephens suggested, trying to keep your BG as stable and in range as you can for as much of the time as you are able, and keeping your blood pressure under control are good strategies.

As far as I understand it eyes and very fine blood vessels don’t like erratic BGs, and also big changes in averages from generally running high to rapidly dropping into averaging in-range.

So try to keep hold of your calmness, try not to be stressed, and aim for some gradual, gentle steadying of your BGs.

And let us know how you get on 🙂

 

[trophywench]

I've had background retinopathy since the mid 1990s, by now in both eyes. Meanwhile I've had cataracts in both eyes removed. I needed specs to correct my eyesight from approx 1967 and still wear glasses with much the same prescription but 'plus a bigger number' approx every couple of years - literally natural progression as I age and nowt more concerning than that. (and I don't waste time worrying about anno domini cos nobody can stop that!)

Don't worry, mate!

 

[DaveB]

Hi. Your HBA1C is very good and better than mine so you are doing well. Yes, keep the carbs down. You mention Pioglitazone which can work well but does have some rare but undesirable side effects so you may want to talk to your GP about swapping it to another med? Liraglutide is usually prescribed to reduce excess weight and BS. For some it has side effects. If you are happy with it then fine, if not again discuss with the GP and you may not need it once your weight comes into a good range.