First T1D Complication

Diabetes Complications and other Conditions Eyes
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After 31 years with T1D, I have my first complication. I was told at my eye doctor appointment earlier this week that I have the beginnings of diabetic retinopathy.

It has taken me a few days to process this information. It’s been so long with T1D and no complications…31 years…3/4 of my life…that I almost felt like I was immune to them. (Yes, I do realize that this is delusional, but I saw it more as being optimistic…). Anyway, I was in shock when I was told and a bit depressed.

I am now trying to pull myself out of this funk and think a bit more about it. My ophthalmologist told me that it was the beginnings of diabetic retinopathy, that it was minor and doesn’t require treatment, and not much else. When I asked her what I should do, she just told me to keep my blood sugars under control. She said that she doesn’t need to see me again until my usual annual appointment in a year.

Does this sound reasonable? Should I not be checked again before a year? I also found her advice to be somewhat unhelpful… “control” is, I think, a bit subjective. I think that my control is decent, but a far cry from from the superb control that many on this forum have. My last A1C was 6.5. My endo has been happy with that, but is that enough?

Any advice is appreciated.

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A1C under 6.7 should keep your retinopathy well in control. Are you on a CGM? If not that would be highly recommended because there are really more important targets than A1C which is just an average which could be the results of too many highs averaged out by too many lows. A CGM will give you far more actionable data to keep your time in range where it needs to be as well as your standard deviation. These are really what you need to control if you are worried about any future complications.

I was diagnosed with mild retinopathy about 30 years ago, before we had today’s great technologies and by keeping my A1C low in the high 5’s to mid 6’s, my retinopathy did not progress for these past few decades, so it is under your control. You just need to find the balance you are comfortable with how tight you want to keep in control vs living the life you want.

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I have been in this position now for about 15 years. I find it ebbs and flows. I started six month appointments to get my eyes dilated and I find that sometimes the ophthalmologist can see it and sometimes not.

The six month appointments are a bit much and the doctor says each time it is not needed. I remind him it is needed for my mental health.

rick

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Yeah, control is a loaded word, especially between a doctor and someone with a T1D pancreas.

I whole-heartedly agree with @CJ114’s recommendation to wear a CGM. This tool can single-handedly teach you about your glucose control. It will open your eyes about certain foods you thought were healthy and were not. There is nothing more motivating for me than to watch a real-time CGM trace range too high from a food I thought I could trust.

There’s a lot to learn from closely watching your glucose trace. Get a CGM, if you can afford it. It earns its keep!

Diabetes is hard on every cell in your body. Some of us are luckier than others. One of the few things we can control is what and how much we put in our mouths and the glucose level that will follow.

Our eyes are precious and something we’ve probably taken for granted in the past.

I have made some of my most influential positive long-term treatment commitments following a complication diagnosis. This time can feel threatening but can also be considered an opportunity.

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Thanks.

I do have a cgm. I’ve only had it for a few months, but yes, it’s been eye opening. Actually, it was this forum that convinced me to give it a try, so thank you to everyone for that.

Okay, well, I’m glad to know that this diagnosis does not necessarily mean that I’m going to go blind…. Though I think I may be similar to @Rphil2 in that my mental health will require 6 month check ups.

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I’m a T1D and have retinopathy since I since 1980. I was exercising with my feet higher then my head and when I was done my vision was blurred. Well you can figure out the rest. Now I see 2 different doctors a year, my A1C is usually 7 and my eyes have improved. Not everyone can handle an A1C at 6 or even in the 5s. Getting close to 70yrs old but have always maintained an A1C close to 7. If you are uncomfortable with ur doc find another 1. I’ve done that many times and am still here. God bless.

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After 22 yrs of urine testing, I was dx with the beginning stages of retinopathy. It really scared me. At about that time A1c’s started being used as did at home glucometers. I quickly lowered my A1c and my eyes cleared up and have remained clear for another 40 yrs.
You might try lowering your glucose levels a bit and see if your eyes clear up.

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I was diagnosed with minor retinopathy in my right eye. My Ophthalmologist at the time had me come back at 6 months, then 9 months and back to yearly. As I have been keeping my HbA1c around 6.2% the one suspect area has improved over the years.

Since I began MDI as a long time (30 years) type 2 DM, my HbA1c is better at 5.2%.

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I’ve been a Type I for 43+ years, and 20 years ago, I started seeing retinal specialists, separate from my ophthalmologists. There wasn’t a major problem, but she noted mild non-proliferative retinopathy. At some point, after another annual exam, I asked her if she thought it would ever affect me in my lifetime. Her answer was no.

I’ve been well-controlled for most of the past 3 decades, working out, taking my ACE inhibitor as prescribed - I’ve had HBP for 33 years, even though at the time I was considered by most boney and fit, eating a vegetarian diet - but I would think unless someone has told you otherwise, that you should not worry, nor make any drastic changes to your regimen. The annual retinal exam is standard, but if you have concerns see a specialist, or at least another specialist, to get a second opinion.

Control can be a bit of a catch-all, but as long as it is under 7, I’ve yet to see a study that showed that getting under 6 benefits Type 1’s greatly, in fact, at all. No matter what, the only thing most can explain causation with is blood sugar control, either A1c or A1c time-in-range (TIR), and then the side effect of high blood pressure (HBP) or a bad diet, or genetics.

A few suggestions:

  • Read what you can from respectable sources.
  • Maintain your current level of control. There seem to be some anecdotes from people that things got worse with their eyes after they tightened control, and although anecdotes are not science, and it needs to be treated skeptically, I can’t ‘unsee’ that.
  • Look at other causative factors, since kidney, blood pressure, and vascular problems tend to be mirrored in the eyes

Yes, no one likes to have complications, but you’ve made it very, very, far without problems. You’ve been lucky, and I hope you continue to be lucky, but one cannot just rely on luck. Take this as a wake-up call to look at your lifestyle and see what can be improved.

And again, don’t worry, it might really be nothing.

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I, too, was diagnosed with retinopathy about 20 or more years ago, back before I went on a pump. My A1c’s at that time were running between 7.0 and 8.0. Since I’ve been on the pump, they’ve never been higher than 6.5 and, in more recent years, they’re typically between 5.8 and 6.1.

One of the important things to know is whether the retinopathy is considered non-proliferative. Mine is, and it hasn’t deteriorated at all since I was first diagnosed. My understanding is that it is easier to keep non-proliferative under control (NPDR) vs. proliferative retinopathy (PDR). Nonproliferative retinopathy has three stages: mild, moderate and severe, after which it progresses into proliferative.

Perhaps knowing the stage of yours, Brianna, would be reassuring, as stage one (mild nonproliferative), can last decades without getting worse.

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You know what is really weird.
Your retina is actually an extension of your brain, so it is made up of essentially specialized brain cells. And they are exposed to daylight.
That’s kind of a crazy concept. We need to be nice to our brains.

Yup, I’ve been reading about retinas a lot lately. I got a blown up photo 8x12 inches of my last retinal photo… And I put it on my wall next to a “ normal retina” they pretty much look the same and I’m aiming for that.

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Thanks, that’s a good idea. I will call my ophthalmologist to get mote information about this diagnosis.

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My first retinopathy signs came about 25 years in, and both my endo and retinal specialist said I was “right on schedule.” Not the schedule I wanted to keep. First exams were 12-month spacing, but the retinal doc said biggest thing is how quickly they change, not just what they look like at a single point in time. About 2 years later was my first retinopathy treatment. My A1c’s were about the same as yours.

I had been seeing an ophthalmologist, but was glad after he referred me to a retinal specialist. Not all general eye disorder docs are up on the latest in diabetes. Exams were far more thorough.

Best wishes on the control. We’re in it for a lifetime.

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I was diagnosed with retinopathy in 1983. Laser surgery saved my sight (20 / 200 to 20 / 30). I go to my retinal specialist every 6 months. I have had microaneurisms from time to time since then, but they always resolve. I tighten up my control. I think you should have an annual checkup sooner. If I were you, I would want to keep a closer eye on it (pun intended).

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I have had T1D for 44 years and have had zero signs of retinopathy or any other diabetic complications and have never been on pump. I attribute it mainly due to diet, exercise, and control but I have also been taking a supplement that I say is as close to a “miracle” supplement for close to 7 years call Astaxanthin, which is derived from microalgae in our oceans and it gives krill and wild salmon and other seafood that eat krill their red color. It is the perfect anti-aging supplement as numerous studies have show it is good for protecting the skin, eyes, heart and more and more good data is rolling in! It guards against sun related skin damage, retinopathy and macular degeneration (I rarely need readers), fights certain cancers, slows DHT related hair loss, helps with arthritis and much more. The best is that people say I look like I am in my 40’s not 62! This is not what I saw in my older siblings that have all sadly passed away.
One thing is that you need to take it for several months to see the full benefits and you need to take natural derived from microalgae (Haematococcus pluvialis) Astaxanthin 10 to 12 mg daily preferably with some oil to aid in absorption (I take it with a fish oil supplement). There are a couple of extremely rare side effects (discussed in Webmd link) but I have not seen them after taking it for 7 years and if anything my libido is better than ever, but I would avoid it if you are allergic to seafood.
Here is a link on an overview of Astaxanthin from Webmd and to a study paper on effectiveness on protecting against retinopathy but there are many other papers on this and other benefits.

Probably the most popular and expensive brand is Bioastin but I found this brand just as effective for about 1/4 the price.

Seriously, give it a try and tell me after a few months what you think? I bet you will be thanking me…

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That’s about true for this 30 year T2DM. I don’t have the date firmly in memory but it was around 5 or 6 years ago.

I have a cycling friend who is a retina specialist. I may get him to do my next eye exam. I do have *unripe *cataracts in both eyes. I know we are more prone to those than non-diabetics, but they are quite common in in sunny Texas.