Background diabetic retinopathy

[Beth12]

Hi, I’m new to this site with this being my first post. My then 18yr old son was diagnosed August 2023 with Type 1 diabetes. I had it in my head it was diabetes as it’s in the family with a brother, nephew and niece with it.
He said he felt fine but I could see he was losing weight and drinking lots so after lots of nagging we went and got his blood sugars tested at my brothers house and then of to A & E we went as his sugars were high
It was only weeks later after treatment that he realised how well he started to feel as I suppose when it comes on gradually you don’t notice it.
He has looked after himself well since diagnosis, keeping his blood sugars down and going to all appointments necessary.
Hospital have been really pleased with him. He had his first eye screening around Nov 2023 and all came back well.
He had another screening November 2024 and we have just received the results and it states stage 1 background diabetic retinopathy which came as a shock to be honest as he has looked after himself well. Does not have high blood pressure as I believe that can contribute.
Is this kind of result normal after 15 months, just can’t help worrying about it.
They don’t need to see him for another 12 months now but it’s just a bit of a knock back to be honest.
Hoping someone can offer some kind of reassurance.
Thanks

 

[Robin]

Hi, I’m new to this site with this being my first post. My then 18yr old son was diagnosed August 2023 with Type 1 diabetes. I had it in my head it was diabetes as it’s in the family with a brother, nephew and niece with it.
He said he felt fine but I could see he was losing weight and drinking lots so after lots of nagging we went and got his blood sugars tested at my brothers house and then of to A & E we went as his sugars were high
It was only weeks later after treatment that he realised how well he started to feel as I suppose when it comes on gradually you don’t notice it.
He has looked after himself well since diagnosis, keeping his blood sugars down and going to all appointments necessary.
Hospital have been really pleased with him. He had his first eye screening around Nov 2023 and all came back well.
He had another screening November 2024 and we have just received the results and it states stage 1 background diabetic retinopathy which came as a shock to be honest as he has looked after himself well. Does not have high blood pressure as I believe that can contribute.
Is this kind of result normal after 15 months, just can’t help worrying about it.
They don’t need to see him for another 12 months now but it’s just a bit of a knock back to be honest.
Hoping someone can offer some kind of reassurance.
Thanks

It’s hard not to worry! But try not to!
I can’t comment on whether it’s unusual to get it after 15months, but what I can say is that there are quite a few people on here who have had 'that' letter (and the way it’s worded is quite scary) and then the next screening has been clear.
I know our Admin guy, @everydayupsanddowns, has been having the letters on and off after screenings for years. It doesn’t need treatment (all it is, is that some bumps have been detected in the veins) and only a minority of cases progress to later stages where treatment is advisable (and very effective).

 

[Beth12]

It’s hard not to worry! But try not to!
I can’t comment on whether it’s unusual to get it after 15months, but what I can say is that there are quite a few people on here who have had 'that' letter (and the way it’s worded is quite scary) and then the next screening has been clear.
I know our Admin guy, @everydayupsanddowns, has been having the letters on and off after screenings for years. It doesn’t need treatment (all it is, is that some bumps have been detected in the veins) and only a minority of cases progress to later stages where treatment is advisable (and very effective).

Thanks so much for the reply,much appreciated

 

[trophywench]

I've had background retinopathy on and off for the last 30 ish years. Never ever needed any treatment for it - and if what they find is near the fundus of that eye (that's the major 'seeing' bit of the eye) they'll usually send you an appointment to see the opthalmology dep't at your hospital and tell you in the letter after your retinopathy check, rather than the uninformative one just telling you you've got b.r. As long as they say 'See you again in 12 months' I say Good - and stay happy.

 

[Beth12]

I've had background retinopathy on and off for the last 30 ish years. Never ever needed any treatment for it - and if what they find is near the fundus of that eye (that's the major 'seeing' bit of the eye) they'll usually send you an appointment to see the opthalmology dep't at your hospital and tell you in the letter after your retinopathy check, rather than the uninformative one just telling you you've got b.r. As long as they say 'See you again in 12 months' I say Good - and stay happy.

Thank you so much for the reassurance, it was just sheer panic when we received the letter. This site is very informative and very helpful. Thanks again

 

[rebrascora]

I am guessing that his first retinal screening appointment was not long after diagnosis when his levels may have still been quite high, but his subsequent screening where he shows signs of background retinopathy are since he developed more confidence and experience at managing his diabetes with insulin and his levels have been mostly in range. It can be the change from high levels down to normal levels which can trigger a small change like this. I had the all clear a month or two after diagnosis, but my next one a year later when I was managing my levels much better showed background retinopathy. The 4 years since then have all been "No sign of diabetic retinopathy" so that first year background retinopathy had presumably healed up and no problems since then. Hopefully your son will find himself in the same "all clear" situation next year or possibly the year after and it was just that his levels coming down into range more quickly than they increased, caused a very slight bleed. I tend to think of them a little like a bruise somewhere else on the body. As long as you give it good conditions to heal, then it can, but if your BG is very unstable or high, then it will have difficulty healing or be prone to more bleeds.

The wording of the "background retinopathy" letters can be unduly scary, especially when you are already putting a lot of effort into your diabetes management and wonder what more you can do to prevent things getting worse, but this may very well be a transient issue and probably due to his levels coming back down into range and him getting used to managing his diabetes with insulin. I really hope we have been able to reassure you about this and by the way..... Welcome to the forum and very best wishes to your son.

 

[Beth12]

I am guessing that his first retinal screening appointment was not long after diagnosis when his levels may have still been quite high, but his subsequent screening where he shows signs of background retinopathy are since he developed more confidence and experience at managing his diabetes with insulin and his levels have been mostly in range. It can be the change from high levels down to normal levels which can trigger a small change like this. I had the all clear a month or two after diagnosis, but my next one a year later when I was managing my levels much better showed background retinopathy. The 4 years since then have all been "No sign of diabetic retinopathy" so that first year background retinopathy had presumably healed up and no problems since then. Hopefully your son will find himself in the same "all clear" situation next year or possibly the year after and it was just that his levels coming down into range more quickly than they increased, caused a very slight bleed. I tend to think of them a little like a bruise somewhere else on the body. As long as you give it good conditions to heal, then it can, but if your BG is very unstable or high, then it will have difficulty healing or be prone to more bleeds.

The wording of the "background retinopathy" letters can be unduly scary, especially when you are already putting a lot of effort into your diabetes management and wonder what more you can do to prevent things getting worse, but this may very well be a transient issue and probably due to his levels coming back down into range and him getting used to managing his diabetes with insulin. I really hope we have been able to reassure you about this and by the way..... Welcome to the forum and very best wishes to your son.

Hi Barbara, yes his first retinol screening was around 2-3 months after diagnosis and the results were all clear on that first one. He has managed his diabetes so well since diagnosis, keeping his bloods within range apart from when a certain food has caused his bloods to go over and then he will sort that out immediately and back to within range quickly.
This is why it came as such a blow to get this dreaded letter.
You have given me a lot of reassurance with your reply. Your story seems very similar to his regards the eye test. When he was first diagnosed his bloods were around 28 and he had ketones so he was in hospital overnight, the hospital said it was a good job we had come to the hospital.
I’m just so glad I kept up with the nagging, as a mum I think you know when there’s a problem. I think as it came on gradually he didn’t realise how bad he was and the diagnosis came as a shock to him.
It really does make sense what you have said and how you have explained it so thank you so much.
Hoping the next one it has maybe cleared up, he dreads having these tests and appointments but he goes to every single one and looks after himself and that’s all he can do.
Thanks so much again

 

[everydayupsanddowns]

Sounds like your son is doing a great job managing his diabetes @Beth12

Those letters are really scary, and often the way they are written makes things worse for the person receiving them! When I had my first letter I was terrified. And as you say, it can feel like a real knock when you have been trying so hard. But I’m currently back to ‘all clear’ again.

The changes they are spotting can be very tiny, and may turn out to be nothing at all (false positive), or may fade over time. And as others have said, rapid BG improvements early on can trigger temporary changes to eyes and nerves that resolve in time.

Hope you can find some reassurance in the “see you again in 12 months” - which indicates that they have no immediate concerns.

Keeping his glucose levels as in range as possible, and with as gentle undulations as he can manage will help to reduce long term risks.

 

[Beth12]

Sounds like your son is doing a great job managing his diabetes @Beth12

Those letters are really scary, and often the way they are written makes things worse for the person receiving them! When I had my first letter I was terrified. And as you say, it can feel like a real knock when you have been trying so hard. But I’m currently back to ‘all clear’ again.

The changes they are spotting can be very tiny, and may turn out to be nothing at all (false positive), or may fade over time. And as others have said, rapid BG improvements early on can trigger temporary changes to eyes and nerves that resolve in time.

Hope you can find some reassurance in the “see you again in 12 months” - which indicates that they have no immediate concerns.

Keeping his glucose levels as in range as possible, and with as gentle undulations as he can manage will help to reduce long term risks.

Thank you so much for your reply. I am so glad I joined this site as the replies I have received have helped so much, as the saying goes it’s always good to talk as you don’t realise there are people out there with similar stories to yourself who can help. I have shown these replies to my son and I think they have given him some reassurance so thank you to everyone