19 Responses

  1. Sysy
    Sysy January 6, 2011 at 7:20 am | | Reply

    This was really comprehensive and a wonderful post. Thanks, I needed to hear this info.

  2. mollyjade
    mollyjade January 6, 2011 at 7:31 am | | Reply

    Thank you for this. I always dread going to the eye doctor each year. Now that I know the actual odds of getting retinopathy and the success at treating it, maybe I won’t be so nervous.

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  4. Scott Strange
    Scott Strange January 6, 2011 at 10:11 am | | Reply

    Thanks Amy for the very informative post. I have a followup with my retina doctor next week to check out a small bleed I had in the macula of my left eye. Still trying to figure out why I scheduled it first thing in the morning, going to be pretty much worthless at work until noon…

  5. Bernard Farrell
    Bernard Farrell January 6, 2011 at 11:28 am | | Reply

    Amy, thanks for a really useful post. One tip, if you’re going to have photographs of your eyes, I’d suggest taking acetaminophen, aspirin or motrin in advance. Those flash photos can be (temporarily) painful and this helps take the edge off.

    I’ve got some retinal damage on my right eye, but not because of diabetes. It was caused by steroids to treat my asthma. Result is that I can’t see clearly in the center of my field of vision. It’s annoying, but you’re absolutely correct, life does go on and I can stick do most everything the same as before.

  6. @elizabethcraft
    @elizabethcraft January 6, 2011 at 11:30 am | | Reply

    I know I should read this post, but it just scares me too much. I’ll work on that.

  7. Kerri.
    Kerri. January 6, 2011 at 12:10 pm | | Reply

    I have pregnancy-exacerbated diabetic retinopathy, and it’s been a hard pill to swallow, seeing as how I’m both reasonably young, reasonably healthy, yet feeling the effects of a few decades of type 1 diabetes. I’m thankful that my medical team at Joslin is on top of things. Helps me stay on top of things, too.

  8. Dr. Paul Chous
    Dr. Paul Chous January 6, 2011 at 12:24 pm | | Reply

    A few points need further clarification and/or emphasis:

    1. Virtually ALL people with diabetes develop some degree of diabetic retinopathy (in fact, sophisticated research shows subtle abnormalities within six months of diagnosis that cannot be detected by dilated eye examination). The key thing is the SEVERITY of the retinopathy. Mild and moderate retinopathy do not cause vision loss (though they do signify increased risk of kidney and cardiovascular disease), so the important thing is to prevent retinopathy from progressing to more severe stages. A good statistic for every PWD to know is that every 10% reduction in your A1c value (for example from 7% to 6.3%) lowers the risk of diabetic retinopathy progression by 43% – a big payoff for a relatively small reduction in blood glucose.

    2. It is important for readers to be aware of pharmaceutical treatments for severe retinopathy, which in some cases give as good or better results than conventional laser treatment or surgery. Vascular endothelial growth factor inhibitors (anti-VEGF drugs like Avastin and Lucentis) are increasingly being used as stand-alone treatments or in combination with laser and/or steroid medications.

    3. We have very good scientific evidence that nutrition plays a major role in the development and progression of eye diseases, including diabetic eye disease. I would encourage all patients to seek out eye doctors who are knowledgeable about nutrition and provide this kind of education. A relatively new organization called the Ocular Nutrition Society now provides a forum for optometrists and ophthalmologists interested in nutrition to exchange information and get continuing medical education about this topic. Although I am professionally biased, optometrists typically spend more time discussing nutrition and lifestyle modification with patients having diabetes than do ophthalmologists (it’s a matter of time: the average ophthalmologist examines 35-70 patients each day while the average optometrists examines 10-20).

    4. While it is true that the lifetime risk of becoming blind from diabetic retinopathy ranges from 1-19% (depending upon the duration of diabetes and metabolic control), it is important to know that diabetic eye disease often impairs vision to a lesser degree than blindness. The bottom line: get good control of your diabetes as soon after diagnosis as possible (with an A1c <= 6.5%), get a dilated eye exam by an optometrist or ophthalmologist every year (or more often if recommended by your eye doctor) and get educated.

    A. Paul Chous, MA, OD, FAAO
    Tacoma, WA

  9. Dave H.
    Dave H. January 6, 2011 at 12:39 pm | | Reply

    Thanks for the great eye info! I had searched the web for info on Lasik surgery on Type 1 diabetics and did not find alot of info. I went ahead and had wavefront lasik surgery done on my eyes December 2010 and the results were fantastic. I have had type 1 for 34 years and have had excellant control my whole life. I now have 20/15 vision in both eyes and could not be happier. I have always been worried about the complications of our common foe which has probably made me work harder on my Blood glucose levels. Thank you for such a great site!

  10. Christine
    Christine January 6, 2011 at 10:49 pm | | Reply

    Thanks, Amy. Great post on the eyes. Vision is of great concern to me. I have worn corrective glasses since I was 6 years old. My eyes have been checked every year but most especially since I was diagnosed with T1 diabetes 22 years ago. This article really helped me understand this complication better. It is always good to be informed. Christine

  11. Jamie
    Jamie January 7, 2011 at 10:48 am | | Reply

    Thanks so much for this Amy. I’m definitely going to be saving it for future reference. My last appt with an opthamologist was less than satisfactory – not because of my retinopathy (mild), but because he told me, “It will be highly unlikely that you will ever face any diabetic issues with your eyes. I’m not sure who referred you to me, but you don’t need to come back to see me.” Interesting that he felt free to gaze into his crystal ball but he didn’t even ask me what my last A1C was or read my chart ahead of time (he didn’t know coming in whether I was T1 or T2, or whether ask me how I was managing with my bg. Maybe I should send him a link to your post here. At any rate, I won’t be going back to him, and I’ll be armed with this post for next year!

  12. T1 in Boston
    T1 in Boston January 7, 2011 at 2:07 pm | | Reply

    I’ve been told I have “microscopic changes,” or “trace” retinopathy for over 15 years (db diagnosis = 29 years ago). My optho has never taken pictures, however, and yes, does rely on comments or drawings from the previous year. One year he commented that he couldn’t see the changes at all upon dilation, but they were still probably there. Reiterating Dr. C’s comment that virtually all T1′s will see SOME changes to our eyes, he always says that my mild changes are not anything to be concerned about. (In fact, he says, after nearly 30 years, he feels my eyes are in darn good shape.)

    I think that means, try to normalize my Bg’s as much as poss (zoinks), eat well, exercise, and hope for the best.

    I’m wondering from Dr. Chou, however, if I shouldn’t also be asking for annual photographs…. ?

  13. Erik
    Erik January 7, 2011 at 2:31 pm | | Reply

    As a recently diagnosed 44 year old Type 1 with an analytical mindset, one of my biggest frustrations is trying to glean actionable information about this disease from articles and findings that all too often contain significantly flawed statistical analysis or presentation. This article is ripe with examples. I am not sure that the recommendations are flawed, but I know that the statistics are. With my confidence already shaken in the validity of the article, do I take its recommendations on faith or throw the baby out with the bathwater. As usual, I evaluate was presented and the agendas of the author, draw my own conclusions about what may be useful, and typically don’t do anything differently.
    I was originally floored when I read that, “Dr. Chous says that one of the biggest fears patients have about diabetes is going blind, but adds that our actual lifetime risk of going blind from diabetes is only about 19%.” Only 1 in 5 will go blind? Hardly a cause for concern to an optometrist I guess. The statement that follows, “With today’s tools and technologies to treat diabetic eye disease, it’s even less.”, is equally troubling to anyone with an basic understanding of random selection and sampling. How can our lifetime risk currently be 19%, but lower because of today’s technology? Are we to assume that no one in the 19% is actually taking advantage of modern healthcare? This is not some unproven promising advancement we are talking about — they are today’s tools. If the past rate of occurrence was 19% (which is not risk by the way), then look back at the data, make an scientific estimate of the number of cases that are not expected to occur due to technological advances, then back them out to come up with a meaningful rate. Otherwise call past occurrence rates, not the actual lifetime risk. Does anyone really even know what the 19% really pertains to?
    Before availability of insulin, an analysis would have properly concluded that survivability with Type 1 was almost 0%. Once insulin was readily available, the use of “today’s tools and technologies” made further reporting of that number grossly inappropriate. Could you imagine an article saying that being diagnosed with Type 1 is a definite death sentence with almost a 100% short term mortality rate, but with today’s tools and technologies, the likelihood may be reduced. Not much of a rallying cry encouraging the use of insulin. How useful or harmful would a news story like that be to someone newly diagnosed and making current and future life plans. Instead of going to a doctor, I’d cash in my life insurance and clean up my affairs instead after reading an article like that.
    So now I know the article is flawed, but can I glean anything from it to make my life better, or do I write it off as just another bunch of daytime talk show fluff. My lucky day, there is a follow-up from Dr. Chous himself in the posted comments, “While it is true that the lifetime risk of becoming blind from diabetic retinopathy ranges from 1-19% (depending upon the duration of diabetes and metabolic control), …”. Wait, wait, wait. The lifetime risk was a range, and the highest it goes is 19%? Well that’s different. I thought the definition of risk required it to be based on a particular sample (remember the big N and little n) which he originally said was “our”. So the average risk for “our” diabetics should be 19%. But wait, how can the average be 19% if some people are 1%, but no one is higher than 19%. Don’t we need people with risk levels higher than 19% to offset the lower ones. But then wouldn’t “our” risk be lower than 19%? Are we to assume that you can have an A1c of 11 for decades and only be in the 19% risk group. Then again, maybe their risk is lower because they die before they go blind. Maybe blindness in inevitable if you control diabetes and live to a ripe old age. I was scheduled for a full ophthalmologic exam next week, but with a 5.7 A1c, maybe I have a better chance of going blind by getting poked in the eye on my way to appointment. Later in the same quote he says, “depending upon the duration”, are you kidding? You mean that the chance of going blind later in life may increase if you live longer? Does this imply that being dead decreases the likelihood that you will develop blindness in the future. Hardly earth shattering, even if we weren’t misrepresenting occurrence rates as risk levels that may be irrelevant because they don’t reflect the current technological situation.
    Give me something to act on. Great, eat fiber. That must be what the 1% group did. Right? Not really sure, but maybe? You just think I should? Why? Tell me who has the risk rate of 1%, I want to know that they are doing. You can’t assign probability (risk) retroactively or we could pick a group of tight control ophthalmologists that fly kites and died of heart attacks under age 50 that have a risk profile of 0%. “Flying Kites Reduce Blindness” would be the headline. Heck, by slight omission why not expand it to the entire non-diabetic population and run it across every media outlet. Just make sure that somewhere in the article it says that the finding was based on a subset of a larger study. Doesn’t matter that no one really understands how that relates to the promising new finding and that it will never be mentioned again now that the cure for blindness has taken on a life of its own. So we will all start flying kites and years from now, when asked why, our children will say it is good for your eyes like carrots. Also make sure that the guy that publishes the article doesn’t own a kite company.
    As we learn more of the egregious misrepresentations drawn from the vaccination/autism related study, we should realize how much influence statistical results can have on the society. While outright fraud is an entirely different case, the scandal provides an example of the impact that the throwing around of statistical results can have on the health of our population. In most instances, the issues in articles are minor and may easily brushed over as differences in interpretation of how it was written, but there are correct and incorrect ways to use statistics. Because I function under the assumption that scientists and medical professionals should have a firm grasp of the importance of accurately and properly presenting findings or supporting facts, to me improper usage amounts to the equivalent of accidentally saying that you WILL die from something, versus you MIGHT. Once it gets reprinted though, a game of telephone begins. Do we need to have legal disclaimers, I think not, but care must be exercised.
    Simply put, if the likelihood of going blind for some highly at risk diabetic subgroups may be as high as 19%, then say that. Follow that with a recommendation to get checked out by your regular doctor and an ophthalmologist to ensure that you are not in a high risk group and explain for those not in high risk groups, the risk is very small and give a percentage or a way to determine what key factors or behaviors can help you to assess your risk. If you think fiber and exercise is good way to combat blindness, don’t just throw it out there without support. If I am able to easily spot statistical inconsistencies in a an article, I am automatically skeptical of any potentially helpful inferences accompanying from them. Had I not looked into it more, I would be much more worried about blindness than I already am. Maybe I am having a cranky day, but hey, this morning I thought I had a 1 in 5 chance of going blind.

  14. Total Diabetes Supply
    Total Diabetes Supply January 9, 2011 at 3:30 pm | | Reply

    Great post, for those with vision loss, we would recommend the Prodigy Auto-code talking glucose meter. We find that most of our customer’s prefer this over the voice model. The one button operation and lower price makes this a great choice for individuals with poor vision.

  15. zip
    zip January 10, 2011 at 10:25 am | | Reply

    Thanks for this post. I find that there is a lot of information out there about trying to prevent complications, but very little about how to live with them. I have proliferative retinopathy that has caused varying degrees of vision loss over the past 7 years (due to persistent hemorrhages). And even though I adore my doctor and trust him whole-heartedly, I was never offered any kind of help on learning how to live with partial vision loss. Even decisions like whether my vision was too poor to drive or not was left completely up to me. Kind of scary when you think about it.

  16. Angela
    Angela January 10, 2011 at 2:27 pm | | Reply

    Great post! I didn’t know January was National Eye Care month, and your post put my at ease or at least somewhat helped my worries. My eyesight has always been one of my biggest fears about diabetes, maybe because it started diminishing only after a few months of being diagnosed. After 26 years of having diabetes, I am at roughly 20/200 vision, and can barely see at night or in the dark. I’ve gone to my yearly checkups and he always tells me he’d never guess I was a diabetic if I hadn’t told him. I take eye support vitamins, but I know the best thing I can do is control my blood sugars. That isn’t always easy!

  17. kate
    kate January 13, 2011 at 1:54 pm | | Reply

    thanks for this. I’m newly diagnosed and when my bs is high, i definitely notice that I get blurry vision. thankfully everything with my eyes checks out ok so far, according to the testing I had done at the Joslin Clinic.

    DARLENE May 20, 2014 at 11:24 pm | | Reply

    Does everyone with diabetes go blind? My doctor says just keep you glucose levels in check and everything will be fine and don’t worry

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