Worried about stage 1 retinopathy

[Carolyndee]

I was diagnosed with Type 2 diabetes in May this year after being prediabetic for about a year (I'm 49 years old). After being on Metformin for three weeks one of the GP doctors asked me to stop taking it and do another blood test (I had called because of a completely unrelated issue with regards to my high blood pressure which I'm taking medication for). My HbA1C in May was 53 and in June it was 49. The GP then suggested that I try and control my diabetes through diet and exercise for three months and take another blood test which will be in a couple of weeks' time. I suppose depending on my result I might be put back on Metformin.

But my worry today is... a few weeks ago, I went for a diabetic eye screening and the results have come back showing that I have background retinopathy. The news was shocking when I received that letter. I can't believe they will send a letter like that without offering any help or to speak to someone to answer any questions. Everything I've read on the internet is frightening and is making me feel worse. There is no cure and it'll only get worse.

Does anyone have this and if so, what are you doing to keep it under control? I was prediabetic until February and I can't believe that this damage is already done. Is there any advice anyone can offer? Or even how you deal with this? I'm really worried because I've already lived with an eye condition since my 20s and now I'm worried that I'll completely lose my sight.

 

[Martin.A]

I haven't had this so far - all my screenings have come back clear - but there are members who've had the same letter only for the next screening to come back all clear, or no change, and I'm sure one or more will be along shortly to reply to your post.

 

[Bruce Stephens]

Does anyone have this and if so, what are you doing to keep it under control?

Yes, for decades now. I just do the things you should be doing anyway: keeping decent control of my BG and also blood pressure. (And cholesterol, which I imagine has some relevance.)

 

[Carolyndee]

I haven't had this so far - all my screenings have come back clear - but there are members who've had the same letter only for the next screening to come back all clear, or no change, and I'm sure one or more will be along shortly to reply to your post.

Thanks Martin, this is reassuring to hear. I feel a bit better now.

 

[Judithdalston]

Yes but I am over two decades down the line…about 2 -3 years ago had a single letter after my annual diabetic eye test asking to go back in 3 months. Which I did and apparently this was ok, and went back to the yearly routine, but this year seem to be having 3 3-monthly tests in a row ‘showing some retinopathy’. My HbA1c is fine at 40-41, but I have high BP from Long Covid … a complex 4 1/2 year saga of Gp putting me on 5 hypertensives, and specialists trying to remove/ fine tune them as I have postural hypotension to. I am surprised that no eye specialist has been involved, as I would like to know if there is anything else I can do to limit damage. I remember reading on a forum, not sure which, one member had been advised to take vit A, so I take drops hoping it will help.

 

[Carolyndee]

Yes, for decades now. I just do the things you should be doing anyway: keeping decent control of my BG and also blood pressure. (And cholesterol, which I imagine has some relevance.)

Thanks Bruce. Do you mean that you keep getting the Retinopathy stage one letter after your eye screening and it stays the same at stage one? If that's the case then I'm feeling a little better. I will continue doing what I'm doing with diet and exercise and hopefully, it won't get any worse. Still so scary though

 

[Carolyndee]

Yes but I am over two decades down the line…about 2 -3 years ago had a single letter after my annual diabetic eye test asking to go back in 3 months. Which I did and apparently this was ok, and went back to the yearly routine, but this year seem to be having 3 3-monthly tests in a row ‘showing some retinopathy’. My HbA1c is fine at 40-41, but I have high BP from Long Covid … a complex 4 1/2 year saga of Gp putting me on 5 hypertensives, and specialists trying to remove/ fine tune them as I have postural hypotension to. I am surprised that no eye specialist has been involved, as I would like to know if there is anything else I can do to limit damage. I remember reading on a forum, not sure which, one member had been advised to take vit A, so I take drops hoping it will help.

Thanks Judith. Seeing that I was only diagnosed with T2 this year after being prediabetic last year (they never mentioned it before so I assume I was ok) and I've had untreated high blood pressure for years. My readings at the GP were always high and it took them four years to start me on medication for it.

I agree that it is strange that no eye specialist has been involved. I hope the drops are working and I am going to look into this too.

 

[rebrascora]

Hi, yes, I had a background retinopathy result a year after my diagnosis, but I have been all clear since then (5.5 years since diagnosis) These letters are perhaps a little more frightening than they perhaps need to be, but it is important to do your best to manage your diabetes well to reduce the risk and give any damage a chance to heal. I consider this level of retinopathy, a bit like having a bruise or small cut. If can heal itself and disappear totally, but if you are not careful and continue to cause cuts or bruises in the same place, the tissue eventually scars and you have a blemish... be that on your skin or on your retina. Background retinopathy is like a small cut or bruise in than it can repair itself if you look after it and give it optimal conditions to heal and there is no reason why it should get worse unless you don't look after it. Keeping your blood pressure and blood glucose as stable and in range as possible reduce the risk of it deteriorating and improve the chances of ut repairing.
What dietary and lifestyle changes are you making to manage your diabetes? One of the things I would suggest is to start testing your BG levels if you don't already, to help you adjust your diet to reduce spikes and keep things more in range. Metformin can only do so much anyway, whereas dietary changes can be significantly more powerful in managing your diabetes providing you understand which foods cause problems and which you can get away with, and that can be quite individual. I find that testing allows me to "see" my diabetes in numbers and make informed decisions about whether a particular treat is worth it or best avoided. It helps motivate me to avoid the stuff that raises my levels to much and by experimenting, find foods that I enjoy which don't raise my levels too much. It is also motivating to see how simple exercise like walking lowers my levels. Maybe you already test, but if you don't, it is worth considering it to help you make better dietary choices and help reduce your risk of your retinopathy getting worse and perhaps even enable it to repair and recover. It is definitely not just a progressive one way street and at the moment you are really just at a small bruise stage which is not something you would worry about if it was anywhere else on your body, but you don't want it developing into a large bruise or deeper damage because you keep injuring it.

I would like to stress that high Blood Pressure is also a big part of the risk with retinopathy and so that also needs balancing.

 

[Bruce Stephens]

Do you mean that you keep getting the Retinopathy stage one letter after your eye screening and it stays the same at stage one?

I mean I get the letter that says I'm R1M0 in each eye, warning that I have background retinopathy. The wording is a bit disturbing but you get used to it. I just look to make sure they want to see me again in 12 months.

(I've once had a screening that showed things were a bit worse and they wanted to see me in 6 months, but only once.)

 

[Carolyndee]

I mean I get the letter that says I'm R1M0 in each eye, warning that I have background retinopathy. The wording is a bit disturbing but you get used to it. I just look to make sure they want to see me again in 12 months.

(I've once had a screening that showed things were a bit worse and they wanted to see me in 6 months, but only once.)

Thanks Bruce and I'm really glad that you're managing to keep it in check.

 

[Carolyndee]

Hi, yes, I had a background retinopathy result a year after my diagnosis, but I have been all clear since then (5.5 years since diagnosis) These letters are perhaps a little more frightening than they perhaps need to be, but it is important to do your best to manage your diabetes well to reduce the risk and give any damage a chance to heal. I consider this level of retinopathy, a bit like having a bruise or small cut. If can heal itself and disappear totally, but if you are not careful and continue to cause cuts or bruises in the same place, the tissue eventually scars and you have a blemish... be that on your skin or on your retina. Background retinopathy is like a small cut or bruise in than it can repair itself if you look after it and give it optimal conditions to heal and there is no reason why it should get worse unless you don't look after it. Keeping your blood pressure and blood glucose as stable and in range as possible reduce the risk of it deteriorating and improve the chances of ut repairing.
What dietary and lifestyle changes are you making to manage your diabetes? One of the things I would suggest is to start testing your BG levels if you don't already, to help you adjust your diet to reduce spikes and keep things more in range. Metformin can only do so much anyway, whereas dietary changes can be significantly more powerful in managing your diabetes providing you understand which foods cause problems and which you can get away with, and that can be quite individual. I find that testing allows me to "see" my diabetes in numbers and make informed decisions about whether a particular treat is worth it or best avoided. It helps motivate me to avoid the stuff that raises my levels to much and by experimenting, find foods that I enjoy which don't raise my levels too much. It is also motivating to see how simple exercise like walking lowers my levels. Maybe you already test, but if you don't, it is worth considering it to help you make better dietary choices and help reduce your risk of your retinopathy getting worse and perhaps even enable it to repair and recover. It is definitely not just a progressive one way street and at the moment you are really just at a small bruise stage which is not something you would worry about if it was anywhere else on your body, but you don't want it developing into a large bruise or deeper damage because you keep injuring it.

I would like to stress that high Blood Pressure is also a big part of the risk with retinopathy and so that also needs balancing.

Thanks Rebrascora. This is very helpful and I want to start testing my BG. It's the top item to talk to my doctor about after my next blood text in a couple of weeks. I have completely changed my diet. I'm originally from Malaysia so I love rice and noodles and now only have them on occasion and even then, half a small packet of noodles and a small serving of brown rice. I've introduced heaps of salad leaves into my meals. Luckily, I love vinegar so add a tablespoon as dressing. My proteins are mostly chicken and fish. I also make a lot of Asian style soups with vegetables. I think I'm lucky because I'm a little particular about what I eat so I almost never eat takeaways or 'outside' food - I prepare and cook pretty much everything I eat. I also aim to walk 50,000 steps a week. And if I fall short like last week, I will make it up the following week. I've lost a bit of weight since I started these changes and also feeling better so I hope I'm doing all the right things!

 

[Bruce Stephens]

Thanks Bruce and I'm really glad that you're managing to keep it in check.

It's not something I think about specifically, to be honest. When I'm thinking about diabetes, I just think about keeping reasonable control. The wording on the letter is known to be a bit disturbing, but I suspect those of us with R1 are in the majority and it's not something to worry too much about.

When I was first diagnosed (long before these high resolution photographs were available) retinopathy was thought to be an unavoidable and irreversible complication. (Not that everyone would get it: for some people it would get worse more slowly and quite possibly they'd grow old and die before it ever caused a problem.)

That's known not to be the case so you can reasonably expect it not to get any worse (and quite likely better). We're much better at measuring and controlling BG and BP.

 

[trophywench]

Despite having worn glasses since my late teens 99.9% of hospital diabetes consultants and opticians I ever saw who looked at my eyes with an opthalmoscope - Bruce will remember this, turns light in consulting room off and shuts window blind then instructs you to look at X corner of the ceiling while they peer into whichever eyeball they choose first, then the other one. At the time we didn't have a D consultant at our hospital so one of the 'ordinary' endo consultants was seeing me. Now - I knew he wore glasses because his child went to the same nursery as one of my friends daughters and she happened to say she'd almost walked into him just as he was coming out of his opticians in the town the previous week. I'd not actually been to an optician near my home and had just carried on to going to one in Birmingham near where I worked but had been thinking I ought to change to somewhere more local - so I asked the endo who his optician was and promptly booked an appt to see the same one. 2 years later when I had my next eye test he did the 'peer in her eyes' again and pronounced that I indeed did have evidence of a bleed in my left eye. My most recent test in August says exactly the same.

I agree there is what looks exactly like a knot in one of the little veins at the back of my left eye which for all I know may have been caused by having a smack in that eye with a bat, ball, someones wrist or hand, my own finger accidentally poked in it when I was growing up sometime since, or God knows what. Oh - and I've had Type 1 diabetes for over 50 years but background retinopathy in my left eye for only the last 35+ years. As long as the letter keeps on saying 'see you in 12 months' I'm happy!

 

[Bruce Stephens]

As long as the letter keeps on saying 'see you in 12 months' I'm happy!

Yes, that's what I look for. They're not shy about asking us more often if they're worried.

 

[everydayupsanddowns]

Thanks Bruce. Do you mean that you keep getting the Retinopathy stage one letter after your eye screening and it stays the same at stage one? If that's the case then I'm feeling a little better. I will continue doing what I'm doing with diet and exercise and hopefully, it won't get any worse. Still so scary though

Those letters are awful @Carolyndee

Sorry you’ve been caused upset, stress and worry, by what should have been a supportive and informative notification. I sulpose they don’t want people to be complacent, or think ‘this is nothing’, but there must be some middle ground where they don’t scare the heebie jeebies out of people

And rest assured, it’s not you being oversensitive - we’ve had many people who have been distressed by the wording in those letters over the years - I was really shaken up when I had my first one.

I was also told at the time that the changes were permanent and irreversible - but that has not been my experience.

I had my first ‘background changes’ letter several years ago, after about 20 years of living with diabetes. Then a couple of ‘all clear’ years… Then another ‘background’. Then a bunch more ‘all clear’. My most recent was ‘background’ again, and I’m not sure if I will stay at ‘background’ for a while now, or go back to ‘all clear’.

The changes they spot for ‘background changes’ are very small. And some times mine seem to have disappeared for a few years.

The important things are to keep up with regular clinic visits, and to attend your retinal screening appointments as they come around. It helps to keep your blood pressure in the recommended ranges, and to aim to keep your glucose levels as in-range and as stable as you can for as much of the time as you can manage.

Diabetes can be a bit of a swine, and some people are unfortunately more prone to eye changes than others, but hopefully your next screening will bring you some reassurance.

 

[Leadinglights]

Yes I have had one of 'those' letters but subsequent ones have all been OK. I wonder if it is so blunt as to scare people into taking their condition seriously and keeping their blood glucose well managed.

 

[Franthepotter]

Hi, me too. Retinopathy in background. But I'm in remission with diet so hopefully that will not get worse

 

[Carolyndee]

Those letters are awful @Carolyndee

Sorry you’ve been caused upset, stress and worry, by what should have been a supportive and informative notification. I sulpose they don’t want people to be complacent, or think ‘this is nothing’, but there must be some middle ground where they don’t scare the heebie jeebies out of people

And rest assured, it’s not you being oversensitive - we’ve had many people who have been distressed by the wording in those letters over the years - I was really shaken up when I had my first one.

I was also told at the time that the changes were permanent and irreversible - but that has not been my experience.

I had my first ‘background changes’ letter several years ago, after about 20 years of living with diabetes. Then a couple of ‘all clear’ years… Then another ‘background’. Then a bunch more ‘all clear’. My most recent was ‘background’ again, and I’m not sure if I will stay at ‘background’ for a while now, or go back to ‘all clear’.

The changes they spot for ‘background changes’ are very small. And some times mine seem to have disappeared for a few years.

The important things are to keep up with regular clinic visits, and to attend your retinal screening appointments as they come around. It helps to keep your blood pressure in the recommended ranges, and to aim to keep your glucose levels as in-range and as stable as you can for as much of the time as you can manage.

Diabetes can be a bit of a swine, and some people are unfortunately more prone to eye changes than others, but hopefully your next screening will bring you some reassurance.

Thanks Mike - I really appreciate you taking the time to share this with me. I was so unsettled and posting here was the best thing to do. Hearing from people who are and have gone through the same - and them sharing their experiences has really made me feel better and not so alarmed. I think I've been having minor panic attacks because of this which is probably not good for my blood pressure!

They did say come back in 12 months so I'm going to take that as a positive and keep looking after my health.

 

[trophywench]

Oh, by the way @Carolyndee - if ever you are concerned about your eyes whatsoever - once we have been formally diagnosed with diabetes on our NHS record, we're all entitled to one free sight test a year at an optician of our own choice, so get and do that if you don't already! (not every private optician tests free so tell them you have D when ringing for first appt)

 

[Carolyndee]

Yes I have had one of 'those' letters but subsequent ones have all been OK. I wonder if it is so blunt as to scare people into taking their condition seriously and keeping their blood glucose well managed.

I'm starting to feel that way. Not that I'm not scared enough by this condition. I'll keep doing what I'm doing and keep my fingers crossed for a clear outcome - or at leas the same one - in a year's time.