Retinopathy


#41

It’s probably important to know that these days diabetic retinopathy (even though it’s a “leading cause of blindnes among adults”) rarely actually leads to blindness. I think I read a statistic somewhere that only 0.2% of cases of diabetic retinopathy lead to legal blindness. So if you have diabetic retinopathy it means that you need to be closely monitored or treated, but it certainly doesn’t mean you’re in for major vision loss (though at increased risk, yes).


#42

I’ve had Type 1 for 25 years with no signs of any retinopathy. I do have retinopathy of other causes, though, so my retina isn’t normal to begin with. I personally would only see an ophthalmologist to get my eyes checked for retinopathy. I see a retinal specialist myself. I think an optometrist is fine to screen most people who don’t have any conditions that raise their risk of serious eye problems (and therefore have no reason to be referred to an ophthalmologist for regular screening), or to get new glasses, but otherwise I’d be seeing an ophthalmologist.


#43

My Optomotrist does diabetic screenings with the same machines the Opthamologist uses. when they find something you get referred to the Retinal opthamologist whi is also a surgeon.


#44

Great point, and probably the same thing could be said for a number of diabetic complications, assuming they are monitored well.


#45

I was diabetic for 45 years before retinopathy showed up in my eyes, and it was an opthalmologist with all the specialties for identifyiing it in the early stage like mine was. He did a pre-emptive laser blast and it did not show up for 15 more years till this year. One reason this time is cataracts were masking what was going on for perhaps two years. This time it was farther along and in both eyes. I am now 64. I could do better with my post meal highs. Am working on that, plus getting more exercise.

Definitely try to get to a retina specialist. Worth it. And keep A1Cs down.


#46

I seriously doubt he has the same tools as an opthalmologist who deals with retina problems. That involves a very special and expensive set of equipment that serves no other purpose than to find retina problems.


#47

It’s obviously not true that EVERY Type 1 will get retinopathy, but when I was diagnosed with DME (which was explained to me to be a form of retinopathy) after 25+ years, and looked up the statistics, I was SHOCKED at the percentage of Type 1s with retinopathy after 20 years (I want to say 80% or something, I’m too lazy to look it up). It weirdly made me feel a little better-- I figured I was a BAD DIABETIC for getting complications-- and a little confused. I think I’ve been thinking my whole life that all complications are completely avoidable, and I don’t think that’s necessarily true. Not that it doesn’t help a ton, of course. But it does seem some people have better “luck” than others.


#48

I can’t prove it, but I have a hunch that those percentages will slowly edge downward. If someone has been T1 for, say, 30 or 40 years, they almost certainly lived for some years during a period when tools, knowledge and control mechanisms were far inferior to what we have now. Whereas someone diagnosed within the last 10 or 15 years can, if they choose, manage better control than was readily achievable back then. Not each individual, of course, but statistically overall. So I suspect that the overall incidence of that complication, as well as others, will gradually shrink in the T1 population as a whole.


#49

Wish I could share your optimism. Unfortunately, T1D statistics remain abysmal (2015). Numbers have barely moved from early 1990’s. In fact, for adolescents, there have been no improvements at all. Here is the 2015 mean A1c by T1D age group:

and here is the % of T1D people achieving (inadequate) ADA targets:

People who post good results here on TuD may give a misleading impression - they are on the far tail end of the T1D distribution, which still looks terrifying. We have long ways to go in terms of access and, even more so, education.


#50

The problem with that graph is that it doesn’t consider how many years someone has been diabetic, which was my point. Or at least it isn’t so labeled. Saying that a 60 year old who has been diabetic for 8 years has a lower A1c than a 30 year old who has been diabetic for 25 years is really comparing apples to oranges. It also doesn’t consider the possibility that a newly-diagnosed PWD is often going to have a worse A1c than someone who has been at it a long time. The graph is—or at least appears to be—a general shotgun that doesn’t distinguish between or control for any of those differences. Or any others for that matter, like accuracy of diagnosis.

More fundamentally, the graph is about A1c readings, not incidence of complications, which was the subject. And complications are very strongly associated with the length of time.

In any case, 1990 til now is only about 25 years and my thesis is that the change is likely to be very slow. That may not be enough time. I wasn’t trying to paint a rosy picture for people alive now; just speculating on possible long term trends. And that’s all it is: speculation. Feel free to disagree.


#51

I agree completely with this. For all the complaining I do about how I struggle for tight control compared to others on this site, my endocrinologist has nothing but praise for me when I see him. (And he has tighter targets than my previous endocrinologist, wanting my A1c in the 6s.) Those of us on TuD are not the average as far as control and the effort we’re willing to put towards diabetes goes, and as a result are probably not the average in incidence of complications, either. Also, I think the population of TuD tends to skew towards those diagnosed with Type 1 as adults, and so maybe has more representation from those who have only had diabetes for 5-15 years compared to those who have had diabetes for 20-30 years or longer.


#52

This terrifies me. My son is 2. He will barely be out of college when he celebrates his two decade “diaversary”. It kills me to imagine him dealing with these things, and it makes me feel so frustrated and powerless that we have just one tool (a slow, defective tool at that) in our fight against the big D. In my opinion doctors and scientists have completely ignored that there’s a war going on in the body of a T1D, an ongoing autoimmune or inflammatory process that clearly plays a role in some of these complications. How else could, for instance, some people develop signs of nephropathy within months of diagnosis even with very good control?

Yes, A1C is important and we do all we can to control it, but we are kidding ourselves if we pretend that some people with tight control and good A1Cs don’t develop the complications early on anyway.


#53

Studies demonstrate that good blood glucose control reduces the risk of developing complications. It is not an absolute elimination of risk. As long as we remain alive, we are subject to that risk. I believe that striving for tight glucose control betters my odds and that is reason enough for me. I realistically concede that I may still experience some secondary complications but I like to be able to answer “yes” to the question, “Am I doing everything within my power to increase my chances of avoiding a complication diagnosis?”

Keeping my blood sugar level in a more normal range also produces significant benefit in the here and now. I’m thinking that that in itself a good enough reason to seeking BGs that spend a high percentage of time in range. It’s a better quality of life.

In addition, the Diabetes Complication and Control Trials showed that good BG control moderated the complication intensity and progression. Some people even showed a reversal of complication symptoms.


#54

That’s true - those graphs are just a snapshot in time over an aggregate population of people with T1D, which certainly bundles together many important differences such as years since diagnoses, gender, etc. However, a similar snapshot was taken some 25 years ago, and I do not see why the mix in that population would have been substantially different compared to 2015. So, a comparison of the results is meaningful, and it reveals that we have, collectively, not made much progress over the past 25 years. Nevertheless, I agree with you - we can and we should do better tomorrow than today, individually and collectively.


#55

Even allowing for all that and assuming (“assuming”, we all know that joke), that all the variables are swallowed up to give a valid comparison, it’s still measuring the wrong thing to permit drawing conclusions: A1c. Not complications.


#56

Tia - I’m sorry to hear you are terrified by this. Your 2 year old will benefit from much better BG control simply due to the new treatments and technology available today.

By comparison, I lived with diabetes for first 20 years, taking 1 injection/day, with constant 4+ urine tests indicating BG averages of 200-300. My first A1C test was in early 1980’s and was in the 'teens for several years. My A1C wasn’t consistently under 8 until I started using insulin pump in 1996, with better carb control. Since using CGMS in 2009, it has averaged under 6.5. With that history, surely you would think I’m totally blind by now.

Do I have retinopathy ? Yes, diagnosed in 1985 after 20 years of very poor control. I received many laser treatments in both eyes and a vitrectomy in one, but now stable since 1987. With 50+ years of T1D, I have successful career, and minimal impact due to retinopathy.

I do think the statistics sound scary. But having retinopathy does not always mean vision loss, as many have reported in this discussion. Very minor changes to the blood vessels of the eye can be documented as retinopathy, and in most cases does not progress to vision impairment or loss of vision, or even require treatment.

However, a small bit of ‘fear’ or worry about possible vision loss can be a great motivator to keep good control, and doctors and the media like to play that card.


#57

I know that retinopathy scares a lot of us. But really things have gotten much, much better. Not only treatment, but also detection. And that early detection makes a huge difference because early detection and treatment can significantly reduce the chances of vision loss as @MM1 notes. Another factor that we must remember is that because detection is greatly improved that also results in something called “detection bias.” Detection bias means that today we see more cases of retinopathy because the detection techniques are much better. If you were screened 25 years ago you may well have had retinopathy but it just wasn’t detected. This means that the statistics which say that retinopathy rates have decreased are actually biased higher in more recent years. Actual retinopathy rates have likely decreased even more than noted in these studies.


#58

Thanks for a great explanation, Brian. I’ve been thinking about this a lot lately, with all the posts about retinopathy rates. Detection of both diabetes itself and its related complications has improved/increased drastically, so the numbers are going to be higher. I agree that overall we’re probably doing better in terms of actual retinopathy rates or at least rates of vision loss. It would be interesting to see all that information laid out.


#59

Welp. I’ve got it and, currently, my a1c is 6.8. :confused: I’m going to try to get it to the low 6s or even into the 5s. I’ve also had type 1 now for almost 30 years.

Last time I had an eye exam, I had mild retinopathy. Today I spent the whole day in acute care for a vitreous hemorrhage in my left eye. I can see out of it, and they didn’t see an obvious indication of a retina tear.

I’ll head back on Monday for more tests. For now, no more ibuprofen or aspirin and I have to sleep with my head elevated.

I’m sure it’s aging combined with how long I’ve had type 1. I’m also sure I’m going to have to go for eye exams more frequently than ever now. With my last visit, they’d already bumped it up to twice a year vs. once a year.

Let’s see what they tell me on Monday. Fun times! :tired_face:


#60

Agreed. My medical team is awesome, so I’m hoping between me keeping my current level of control or bettering it, they’ll keep me from going blind. They were so thorough, and I’ve read a few threads on it here as well as some research.