Coping with diabetes eye diseases

I had vitreous bleed in one eye back in mid 80s, about 20 years of T1D, treated with Lente only. (Soon after switched to NPH+Reg until 90s).

My left and right eye had many lasers prior to bleeds, but vitrectomy only performed in left eye. I can still see out of left eye, but not as well as right eye. Cataract surgery in both eyes within last 10 years.

My current retina specialist has done minor tweaks the past 15 years to catch new bleed quickly, which still occur even though I have maintained 5-6 A1Cs.

The only change is to avoid night driving, and caution when going from dark to light (eg movie theaters), as it takes longer for my eyes to adjust.

T1D 55+ years.

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I had something similar happen about 20 years ago. I was a freshman in undergrad and standing in the cafeteria line. As I was standing there, it seemed like someone was pulling a blanket up over my eyes. My vision in both eyes was blacking out. Slowly, from the bottom up. Went the ER, and they pretty much said there was nothing they could do, sent me back to the dorms fully blind, and set me up with a specialist the next day.

Surprisingly, the specialist told me it had nothing to do with being diabetic, and that I had no retinopathy. (I can’t claim the same thing now). He said that it’s completely normal for the vitreous to shrink, and pull away from the retina. Sometimes there’s blood if it happens quickly. It happens most often in near-sighted people. And it was just :poop: luck on my part that it happened in both eyes at once.

I kinda have to think that my diabetes was a contributing factor to make it happen like that, though. Maybe I was running high and really dehydrated, causing the shrinkage? I hardly ever tested back then.

My vision was coming back hazy within the week, and nearly clear by 2. I got some pretty cool pictures for souvenirs. The sheets of eye pictures were still pretty rare back then.

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My experience with eye issues is very similar to others responding so no need to repeat details. 45 years T1. Retinopathy laser treatments in both eyes, vitrectomy one eye. Stable for last 20 years after vitrectomy when I got more serious with steady control rather than on-again, off-again. With a CGM for last 2-1/2 years I am “enjoying” being a bit obsessed with control and A1c has been in low 5’s.

My endocrinologist told me that 25-30 years into diabetes is a common time for complications to start, even in people with stable control. The retinal doctor told me a few years ago that almost all of his diabetic patients receive injections and that laser treatments are now rare.

Cataracts often develop in people who have had other eye surgeries & treatments in the past, so I was told by the retinal doc. I did not get the sense that they were related directly to diabetes. I had both eyes treated for cataracts 6 years ago & no issues. You can bet I was a bit stressed, but had a good doc who calmly answered all my questions (even the repeat ones) right up until the time of surgery.

Go to all the exams, follow ups, and treatments even when you feel fine and are in good control. These docs look at & measure your eyes with extraordinary precision. Find a good specialist who explains to you in detail the retinal scans, especially for what has changed since the last time. Very best wishes.

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thanks Janine! I go by bhakti.
i love the advice to remain calm! I worked on that all day sunday and feel much better! I even think the blur is a little better. My retina guy is out for a funeral today so I will have to wait to wednesday to see someone. will stay relaxed and upright until then.
I appreciate the support greatly!

EmojiBhakti Cypressi

thanks Robyn,
I think the cataract brought this on, but who cares. Cant get in there until wednesday so i am remaining calm and cool. Your story and those of others sure helps!
Be well and thanks!
Bhakti ( lisa)

EmojiBhakti Cypressi

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200 sounds too high and how long is extended time over 200. Better to go with the International Consensus on Time in Range.

Time in range is great at tracking overall, and different goals can be set for each person.

BG limits are also individual, and simply helps to be decision point to take action. For example, after meal, over 200, can exercise or take more insulin, etc. Would need to know what insulin is still in system, to avoid stacking insulin.
Agree some may have lower BG trigger points.

About the “25-30 years is a common time for complications to start” thing…that seems too long.

With microalbumin/nephrology, unless clinically present by 20 years or so, your risk is actually only 1% per year after that, showing a sort of “proof” phase that your particular body isn’t prone to that complication.

I don’t know if retinopathy is the same way, because I read conflicting arguments that retinopathy is more common the longer you have diabetes, then i’ve read a1c and length of diabetes only accounts for a small portion of the equation.

It would be great if such a susceptibility phase could be identified for retinopathy, if it exists

I just want to say that while my eyes are clear after 23 years of type 1, I dread retinopathy because I like to lift heavy weights.

Can anyone assure me that IF I ever develop NPDR in the coming years, or even PDR that is under control, that i’ll be able to continue to weight lift? For example compound exercises etc.

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I complained after my first laser treatment about how I didn’t want to have to go in for treatment again. Another patient in the waiting room said you have to go back, or you’ll lose your vision. The push helped me as I felt her concern for my health, and I realized others go through it, too. I hope you’ll go back if you need the treatment to save your vision. I’ve lost hearing in my left ear, not related to diabetes, and at that time which was years ago; the doctor informed me how precious our senses are to us. I can’t explain how much I miss not being able to hear out of one ear. I’m so grateful it hasn’t happened to the other ear. Take care!

My vitreo-retinal surgeon said I can continue to do any type of exercise unless it’s a retinal bleed. Then it’s rest. Your eye pressures are independent of your blood pressures. They recommend that you exercise as it is good for your eyes.

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I hope it goes well today, Bhakti! Take care!

Cataract dr. told me to hang 2 weeks and see the retina guy. May need a vitrectomy,they said its 50/50 chance.
thans for support!

EmojiBhakti Cypressi

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Every state has a Division for the Blind under Rehabilitation Services, qualifications vary ,but with severe vision loss this may be where you need to go. Nancy50

It’s normal for cataracts to start developing after 40 but not noticeable until age 60. What I wonder is if the prevalence of cataracts is higher in diabetics than non?

A lot has been said in this thread, and my experience has been covered by other posts. I have been T1D 57 yrs., retinopathy in late 70’s, extensive laser treatments in both eyes - no room left for any more. Cataracts in both eyes 18-14 years ago. Vitreal retraction in left eye with subsequent vitrectomy, and loss of vision in left eye. In the 80’s I had two bad hemorrhages and partial or full loss of vision in one then the other. I was advised to sleep at an incline to speed the clots settling to the bottom of the eye; that worked. 20 years ago gave up night driving completely.

The statement that complications take 25-to-30 years to appear is not correct. Within 5 years of dxd heart disease is established, just not clinical. Even in adolescent T1D. Within 10 yrs of dxd PPDR is seen, and about the same for kidney disease (again not clinical, just on autopsy). Going from poor control to highly improved control can trigger retinopathy progression, while at the same time improving outcome. And etc. By 25-30 years if you haven’t developed a complication, it is unlikey you would. Look up review articles by Arthur Vinik.

Mike

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I did not develop any serious complications until I had been a type 1 diabetic for 51 yrs, when I suddenly needed a heart stent. I didn’t get retinopathy until this year. I have now been a diabetic for 62 yrs. I started to get retinopathy after 23 yrs, but I tightened control and for the next almost 40 years, my eyes were remarkably clear of retinopathy.

Regarding eye diseases, I found this NYT tribute to Dr Bito’s very inspiring. He found cure for glaucoma (his work at Columbia Uni led to the drug Xalatan): Laszlo Z. Bito, Scientist, Novelist and Philanthropist, Dies at 87 - The New York Times (behind paywall but you might get a free read if you clear the cache or use a different browser).