Complications: preventing them is the motivation behind almost everything we do in managing our diabetes. Yet how much do we really know about how to live with them? After all, life doesn’t stop with a diabetes complication.
I’ve been thinking that even if you’re diligent with your diabetes management, that isn’t necessarily a guarantee (nor is it easy!). You could have amazing BG control, but still develop some damage. Totally unfair, right? This is the catalyst behind a new monthly series here at the ‘Mine, taking a closer look at complications one by one, to help all of us be well-educated and prepared to deal with what may come. Because you just never know…
btw, did you know that January is National Eye Care Month? So we’re kicking off this series with diabetic eye disease. We discovered a great source to turn to in Dr. Paul Chous, an optometrist in the Seattle, WA, area who was diagnosed with type 1 diabetes at age 5. He himself dealt with diabetic retinopathy as a PoliSci grad student in the mid-80s, before making a career change to become an optometrist. He has written a book called Diabetic Eye Disease: Lessons from a Diabetic Eye Doctor and has contributed numerous articles to dLife. He also speaks at conferences around the country to eye doctors on life with diabetes, so if your doctor sounds especially well-versed in diabetes management, you can probably thank this guy.
Let’s get started…
What exactly is diabetic eye disease?
Most people are familiar with the “Big Bad” of diabetic eye disease: diabetic retinopathy. It’s the most well-known complication associated with the eyes, but there are actually seven different conditions that can affect a PWD’s eyes: Cataracts; Glaucoma; Dry Eye Disease; Cranial Nerve Palsy; Ischemic Optic Neuropathy; Retinal Vascular Occlusion and Retinopathy. Whew. Retinopathy actually has several stages of severity, ranging from “microscopic areas of blood vessel damage” to “small areas of bleeding and fluid leakage” to “abnormal blood vessel growth causing lots of bleeding and formation of scar tissue resulting in permanent vision loss.” Whoa.
Diabetic retinopathy is indeed the most common eye complication, causing nearly 24,000 cases of blindness in PWDs each year. It’s also in the same family of complications as kidney disease and neuropathy, because it’s a microvascular complication, meaning that it’s caused by damage to your small blood vessels.
Warning signs and getting checked
What’s tricky is that most eye diseases appear with minimal symptoms, so the majority of the time, you won’t even be aware that you have any problems with your eyes. In other words, even someone with perfect 20/20 vision and no pain or vision loss could find themselves facing diabetic retinopathy. Patients may have early symptoms with cataracts (blurred vision), dry eye disease (watery or burning eyes, though sometimes dulled from neuropathy in the eye), and cranial nerve palsy (sudden double vision). Most of the time, eye disease isn’t noticeable until bleeding spots appear or vision loss is severe, which means the complication has already progressed. Ugh.
This is why it is crucial, experts say, to get a year dilated eye exam from an ophthalmologist, a medical eye doctor (optometrists — who generally deal with routine exams and corrective lenses — are also qualified). Only a qualified doctor will be able to look deep inside your eye and into your retina to see if there is any damage. Diabetic retinopathy is a progressive disease, so even the smallest sign needs to be taken seriously. We all know how annoying the eye drops and sensitivity to light are, but that’s temporary discomfort that could prevent a lifetime of vision problems. So get the darn exam, will ya?!
How to get a proper diagnosis
While either an ophthalmologist or optometrist can handle your yearly eye exam and give you the info you need, only the ophthalmologist can provide surgical treatment, including laser surgery for cataracts, glaucoma, or retinopathy. Patients with severe diabetic retinopathy may also need to see a retina specialist.
But how do you know if your eye doctor is up to snuff? There’s no “certification” in handling patients with diabetes, so like most specialists, you need to do some interviewing. In his book, Dr. Chous outlines a few key questions you can ask, including:
* Do you have a lot of experience with diabetes and its various effects on the eyes? Do you have any special interest in diabetic eye disease?
* Do I have any signs of diabetic eye disease? Do I have any cataract, glaucoma, corneal problems, retina problems or eye muscle
problems that are being caused by diabetes?
* If I do have diabetic eye disease, how do you recommend we manage or treat it? When do you want to check my condition again?
Are you experienced with the surgical or laser treatment of diabetic eye disease? If my condition worsens, will you refer me to a sub-
specialist?
Dr. Chous also recommends asking if your doctor photographs your retina. Why are pictures so important? The only way to tell the progression of the eye is to keep a record of how it looks. Most eye doctors have to rely on memory, written descriptions, or drawings. Do you want your vision in the hands of your doctor’s artistic ability? Look for someone using more advanced visual equipment.
What do you do if you are diagnosed with diabetic retinopathy?
Diabetic retinopathy is sadly not reversible, but it is highly treatable, in terms of halting the progression. For one thing, if it isn’t affecting your vision now, chances are it never will. 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%. With today’s tools and technologies to treat diabetic eye disease, it’s even less.
Early detection is the big key here. The sooner you find it, the sooner you can slow or stop the damage from progressing — through tightening BG control, regular follow-ups, and in advanced cases, called proliferative diabetic retinopathy, using laser treatments or surgery to treat and restore vision.
Dr. Chous also recommends adding lots of fiber to your diet and cutting saturated fat, and says to keep exercising unless the retinopathy is severe, so make sure to check with your doctor before you start or stop your routine.
Managing diabetes with vision loss
In the case of vision loss (not always complete blindness), here are a few new tools being developed to help PWDs:
* Prodigy Voice is an audible glucose meter designed with help from the National Blind Associations as well as CDEs. It’s programmed to speak to the user, verbally sharing their BG value as well as blood sugar averages. The meter features tactile buttons and a noticeably different test strip for easier use. Prodigy also has an audible insulin pump in the works.
* Insulin pens can also be useful for people with vision loss, as most insulin pens will “click” when drawing up a dosage. Insulin pens are available for both long-acting and short-acting insulin.
* Syringe magnifiers, that provide about 2X magnification to make those tiny needle markings easier to see.
* Count-A-Dose, which helps you measure out insulin with a click-wheel that audibly indicates each unit.
* Syringe Support, which also helps you measure out insulin, mix insulins, and hold a syringe in place for injections.
… to name a few. Dr. Chous actually recommends that PWDs who don’t have any vision problems investigate and learn more about these tools, just in case. It’s better to learn about a product when you can still see it properly, no?
Where can I get help for living with vision loss?
The National Federation for the Blind is the go-to resource here. Their site includes a full section on helpful tools and products for those with impaired vision.
Most states also have a Commission for the Blind, which offers assistance and resources for people who are legally blind. To find yours, just google “Commission for the Blind” and your state’s name.
It’s not the end.
Being diagnosed with a complication — or even wondering if you might have it — is scary as hell, no doubt. The big message to remember is that “life goes on…” as I know it has for many of you out there. There are tools to cope and resources available to help you keep going. If you have diabetic retinopathy or another diabetic eye disease, we’d love to hear your experiences in the comments and make this a real go-to resource for anyone facing eye complications.
This was really comprehensive and a wonderful post. Thanks, I needed to hear this info.
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.
[...] This post was mentioned on Twitter by DiabetesMine, jeff and JCampbell. JCampbell said: DiabetesMine: On Complications: The 411 on Diabetic Eyes http://bit.ly/eD0Uvf #diabetes [...]
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…
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.
I know I should read this post, but it just scares me too much. I’ll work on that.
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.
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
Amy,
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!
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
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!
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…. ?
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.
@All – I suppose I should have mentioned that I’m personally scared senseless of eye damage. I was born with bad eyes. Had surgery for “wandering eye” in kindergarten, and have worn corrective lenses for near-sightedness ever since. Now my doctor is saying I might need bifocals soon. Can you say “Old Lady”?!
Right after needing dialysis, this is the complication I fear most. Just so ya know…
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.
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.
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!
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.