Stage 1 retinopathy 4 months after T1 diagnosis

[jasmine]

Hi all. I got diagnosed with T1 four months ago. It’s been a shock, but I’ve been working super hard to stay in range and get a handle on things. I was starting to feel good about it all — and now I just had an eye exam which came back as me having stage one retinopathy. I know it’s common for diabetics to get at some point, but four months after diagnosis?! I assumed that the long term complications would be… long term. I don't think I can physically get my TIR much higher -- it's hovering between 85-90% -- so I’m feeling a bit hopeless. How could this happen so fast, while I’m doing everything that I’ve been told will prevent complications? It's made me feel pretty crappy about the future. I've been working so hard to work out how to take care of myself and felt like I was doing a good job up until now.

 

[Bruce Stephens]

How could this happen so fast, while I’m doing everything that I’ve been told will prevent complications?

As I understand it the diagnosis of retinopathy (particularly R1) isn't that reliable in that two experts with the same images might differ in whether they describe it as R0 or R1. Regardless, we can only do the best we can, and R1 doesn't (as far as I can tell) mean it'll get any worse. (I suspect I'd have been described as R1 (certainly they said I had signs of background retinopathy) when I was 18 and that was quite a while ago, and I'm still at R1.)

Keep doing what you're doing, keep blood pressure in control (apparently another factor in retinopathy).

 

[helli]

Sorry you have received this diagnosis.
There may be a few reasons why this has happened
- it is very likely you have had diabetes for longer than 4 months
- some people find that bringing their BG down too fast can affect their small blood cells
- the scans you have had done are checked manually. Although these are always checked by at least two people, it is still subject to errors.

Regardless of the reason, the most important thing to remember is that Stage 1 retinopathy can be reversed. Many of us on the forum would have had Stage 1 one year and not the next.
Do not feel too disheartened. You are doing a good job. You are doing the job of a major human organ on top of living the life everyone else does.

 

[PhoebeC]

Hi @jasmine as both Bruce and Helli have said this is quite common and can be reserved in most cases.

I would say speak with your diabetes team about the result, your concerns etc.

You may be able to have another test sooner.

Don't beat yourself up about it, easier said than done, it sounds as though you are having really tight control with that TIR.

 

[everydayupsanddowns]

Sorry to hear about your retinopathy notification @jasmine

Try not to feel too disheartened. The amazing work you have been putting in may even have been somewhat involved? There is a temporary form of eye changes (and sometimes nerve pain) which can result from very rapid improvements in BG levels after an extended period (eg pre-diagnosis or pre-insulin-treatment).

It could well be that follow-up eye screening comes clear, or that if you maintain your good management, that your R1 can just remain static (and non-sight-affecting) for years or decades.

 

[rebrascora]

Many of us here have had that background R1 diagnosis and then come clear a year or two following it. I am not sure whether it is an error in assessing it as it is at a very very minor level or possibly just that the eye can recover from small amounts of damage similar to getting a bruise somewhere else on the body, which heals itself if you don't keep banging/damaging the same place.

I got my R1 letter the year after my diagnosis and I suspect it was linked to my levels coming down into range following starting on insulin therapy as they were pretty high before that. Since I have maintained good management I have had the all clear for the past 5 years and I have now moved on to 2 yearly checks as I was all clear again in Feb this year. I don't even give it a thought anymore, but the letter you get with the report of background retinopathy can be pretty scary so I do understand why you are so upset about it. Hopefully, you will have the same experience as many of us here and be clear next year or maybe just stabilise at R1 which should not affect your sight.
It sounds like you are doing brilliantly so well done and don't let this very minor issue derail you. Hopefully your clinic staff can also reassure you.

 

[Lucyr]

Hi all. I got diagnosed with T1 four months ago. It’s been a shock, but I’ve been working super hard to stay in range and get a handle on things. I was starting to feel good about it all — and now I just had an eye exam which came back as me having stage one retinopathy

Sounds like you’ve been working too hard sadly. Bringing your blood sugars from too high to in range too quickly can cause retinopathy.

 

[rebrascora]

@Lucyr I brought my levels down relatively slowly after diagnosis but still got an R1 diagnosis after a year. I didn't have Libre until 1.5 years after diagnosis. I do however wonder if people being prescribed Libre right from diagnosis may enable them to bring their levels down much quicker and possibly lead to more early diagnosis R1 screening results and also make them much more reliant dependent upon CGM than they perhaps should be.

 

[Lucyr]

@Lucyr I brought my levels down relatively slowly after diagnosis but still got an R1 diagnosis after a year. I didn't have Libre until 1.5 years after diagnosis. I do however wonder if people being prescribed Libre right from diagnosis may enable them to bring their levels down much quicker and possibly lead to more early diagnosis R1 screening results and also make them much more reliant dependent upon CGM than they perhaps should be.

Yeah I don’t think people should get libre straight away, or at least should be told to ignore it other than hypo alarms. I worry that libre also leads to hypo unawareness as new diabetics are relying on alarms when you have to be able to identify a hypo without cgm to be allowed to drive.

 

[mashedupmatt]

Sorry to hear about the result @jasmine but this webinar that @JITR kindly shared provides dome excellent information regarding retinopathy and will give you some good advice

J

Thread 'Diabetes and Eye Screening Webinar'

Sunday at 12:58 PM

The InHealth webinar mentioned in Learn everything you need to know about diabetic retinopathy - 19 June 2025 is now available on YouTube

I advise you to skip the preliminaries and start here at 14:42 to learn about the need for screening and the process itself OR here at 1:06:09 if you want to focus on the images of retinopathy and maculopathy.

• JITR
• Replies: 3
• Forum: General Message Board

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