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Retinopathy Questions

Hi everyone-

I (25F) had my first eye exam after being diagnosed in September. The doctor said I have some mild retinopathy which makes him wonder how long I’ve actually been diabetic.

The general consensus online is that it takes almost 5 years of high blood sugar to cause retinopathy. Wondering what you all have heard?

Also interested in what you know about caring for my eyes now that I know. Yearly exams and wear my glasses of course.

Any support is appreciated. I’m feeling pretty down on myself, feeling like I should have known sooner.

  1. Hi . Welcome to the community! I am glad you found us. Please, don't beat yourself up for not realizing you were diabetic sooner. The changes that come with diabetes can happen so slowly that we don't really recognize them. Often, we adjust to them as they set in or attribute them to other causes. For instance, if high blood sugar left you exhausted, you might have blamed it on age or stress or a lack of sleep. At 6-foot-5, my husband always drinks a ton, so the thirst that came with pre-diabetes was just more of what had always been normal for him. He is always low on Vitamin D, so he blamed his exhaustion on that, too. Hindsight is, as they say, 20/20. Don't judge yourself by looking backward. Here is a wonderful article about diabetic retinopathy that might interest you: Fortunately, your case is mild, so chances are good that you can avoid further damage. Regular eye exams are key as is keep blood pressure and blood sugar. Hopefully, some members will chime in here with their own experiences. Are you on a good treatment plan for your diabetes? Wishing you the best. - Lori (Team Member)

    1. I got my first, perceptible bit of retinopathy two years ago, about 12 years after my pre-diabetes diagnosis. And that was with some spotty glucose control along the way. My A1c's have bounced around between 5.5 and 8.5 over the years. Yeah.... I know.

      I feel for anyone receiving the news of retinopathy, even mild retinopathy. It's a difficult thing to find out that you're anywhere on a continuum that eventually leads to blindness, even if you're just dipping your toes into the water.

      At fifty, I've had to learn that this is the case on many fronts. I'm going a little bit blind, a little bit impotent, a little demented, a little bit arthritic... Given that being alive is basically to exist on an "ashes to dust" continuum that culminates in eventually being dead, it makes sense. Other than youth, the elderly are the happiest among us. That, presumably because they have achieved acceptance of that which is inexorable.

      My retinopathy is in one eye only which drive me nuts. I abhor asymmetry in myself and would rather have it in both eyes.

      As for care, I don't know that there's much to be done other than to use it as motivation for better glucose control moving forward. Retinal surgery is an intermediate option but both of us are surely a good long ways from that.

      1. Hi . I hope you are a very long way from progressing any further along that continuum. I have always found it interesting that so many people who develop chronic or autoimmune diseases in their younger or middle age years outlive their healthy peers or live more fully as they age. When you have a chronic disease, like type 2 diabetes, you see doctors all the time. You have to pay close attention to your health. Those who don't have to continually monitor their health are often taken by suprise by advanced cancers, heart attacks, etc. Maybe that's where that acceptance comes from in old age. Wishing you the best. - Lori (Team Member)

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