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.
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Stage 1 retinopathy 4 months after T1 diagnosis
- Thread starter jasmine
- Start date
Bruce Stephens
Well-Known Member
- Relationship to Diabetes
- Type 1
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).
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.
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
Well-Known Member
- Relationship to Diabetes
- Type 1
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.
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.
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
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.
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.