12 years into type 1, I finally got stage 1 of diabetic retinopathy in my recent eye screening. I don't know how to feel and I'm scared.

[Catsymoo]

Heya..

I need some reassurance on this if possible and not to panic. My control has been awful since I had covid in 2021 and I hit the 20s most days. I woke up low yesterday, ate about 30g of carbs and fell back asleep, and it had barely raised my sugars by the time I got up but was enough to shut up my Libre alarm. I was then was dipping all day and couldn't get to a comfortable place where I didn't have to scan every 10 minutes. Apparently 3 units of Novorapid covered a latte 10g, 20g yoghurt, sweets, and glucose gel and macarons as I was still dipping even after eating all that to avoid a hypo while I was out and dropping FAST. I felt so wobbly when I went out. Other days 3 units wouldn't even cover a 10g carb breakfast bar and I'm just so worn down by this and tired of it. I've given up alcohol and so many things because I get gastritis pain. I've had to limit my favourite hobbies due to TMJ/neck nerve pain, I limit my diet due to diabetes. It just seems like every single thing in life that makes me happy has negative consequences on my body and I'm feeling quite depressed.

I lowered my basal by 1 unit last night and woke up on a 15.7 before breakfast which really irritated me having to skip food until I get lower.

The letter said no treatment needed atm but obviously, it's not good. I'm 33 and I've just had enough of having diabetes, and feel like it's just a downward spiral from here. I know these eye screenings can be over zealous at detecting even the smallest things, and I've even heard stories of people that have been tired with achy eyes during their test and had this letter - then 6 months later it was gone.

In the last 2 years my eyes always feel dry, strained and typing text on a screen is awful. Very sensitive to focus and certain types of light - but I am a gamer and I work on computers so I thought this was just part of my job type. Starting to wonder if it's actually diabetes related. :/ Anyone else had this letter?

 

[eventhorizon]

Hey! If it helps I had that letter about 12 years into my type 1 journey at about 33 years old as well. I remember being really upset about it, like diabetes was finally catching with me. Anyway since then I needed a tiny bit of laser in one eye, about 5 zaps and since then my control has been better (thanks to pumping) and my eyes stable. Going from 4 monthly eye checks back to the regular yearly.
Try not to dwell on it and don't beat yourself up when the diabetes doesn't play nicely.

 

[Nicola M]

My control before going on hybrid closed loop was terrible, 20's most days all through the day and night. After closed looping I'm not in range for 70%+ of the time. Kind of ironic that at my eye screening after getting the really good control I had signs of retinopathy (stage 1) and was referred to the hospital for screenings every 3 months. I also currently don't need treatment, I'm only 26 (I was 25 when I got the letter) so to say I was scared was an understatement but at the end of the day it is reversible with the right treatment plan and you may never end up needing any treatment if you can get your blood sugars under control. I would definitely talk to your team about your worries and try to get a plan in place to get your blood sugars down but don't expect that your eyes are instantly going to get better as you can see in my case they got "worse" before they got better. Don't beat yourself up, I mean diabetes isn't easy and sometimes you've just got to take things slow and 1 day at a time.

 

[EllieM]

I've had good and some extremely bad periods of diabetic control in my life, and I first got told I had diabetic retinopathy decades ago. That's been on and off over the years, though mostly on now. But they still reckon it's stable and they don't need to treat it (yet).

I suspect they are also better at spotting the minutest changes now, some of which turn out to not be real.

Try not to panic.

 

[Ushthetaff]

Have had letter basically saying some signs but nothing to worry about ! Every year For the last 30 odd years , so I wouldn’t stress out ,

 

[EmmaK_2907]

A lot of T1s will have background retinopathy - it’s very common! My consultant reassured me by saying that it basically means that they can tell your diabetic by looking at the backs of your eyes. It’s not affecting your sight and isn’t anything to be hugely worried about. Just keep your control as tight as possible, love a healthy lifestyle, and make sure you get regular checks as per their recommendations.

I got my first background retinopathy latter about ten years ago - I’d been diabetic for around 25 years at the time. I panicked - not going to lie! There have been no further changes since then, though

 

[Catsymoo]

Thanks all

I did wonder if my eyes always feeling like **** is down to my diabetes. My eyes are so strained and sensitive to light all the time!