I went to the eye doctor last week and he told me i had the beginnings of nonproliferative diabetic retinopathy. i was floored, as ive only been type 1 for about four years, and aside from the last 6 months with a1cs of 7.3 and 7.1, ive always been in the 5s and 6s.
of course, i immediately googled this complication and it seems that it is common and doesnt necessarily mean that it will progress to complete blindness, etc.
so, i just was curious, what was your first complication? when did it appear? what had your a1cs been like? have you been able to slow/stop progress of said complication?
i was at my doc in june for the results of my last a1c-down to 7.1 from 7.3 in march-not great. i said to her that i wished i was still as scared as i had been at the very beginning, that it was much easier when i was absolutely sh*tting myself. well, now im that scared again!
i have one retinopathic dot, way off the macula, which is good. It got picked up 2 years ago at LensCrafters (I’d blown off an official eye doc for years, as they did retina scans there, that were negative). I asked the doc what they’d do and she said nothing so I went to a doc last year. This year, she said it was unchanged. This was like 29 years in. A1Cs were unknown or irregular 1984-2000ish, 5.8 when I went in the first time, middling 6s and then spiked up to 7.2 and 7.7 when I started working out. Then I got a pump in 2008 and they were 5.8, dropped to 5.2-5.4 with the SofSensor “harpoons” and then 5.0-5.1 when I switched to Enlites and, most recently 4.9. I totally understand being scared!
Coming up on 32 years T1 and so far… nuttin’. Knock on wood. My most recent visit, my endo used a more sensitive exam and found some loss of nerve sensitivity toward the outside of my right foot. “It would be really surprising if you didn’t have any neuropathy at this point,” she said, and I do feel a bit of numbness there, so I guess that’s something. Mostly I’ve had really good control, though there were a number of years back when I was on R/NPH when I was really a shoot-up-and-forget-it T1, so maybe there’s just some genetic luck involved, who knows…
My senior year of high school (1997) I was diagnosed at my yearly eye exam with retinopathy. But that didn’t come with any symptoms yet, it was just beginning. The one that hit me like a ton of bricks and really screwed with my quality of life was when I started having neuropathy symptoms (although I wasn’t aware it was neuropathy until many years later); those started in 2007. I had to leave my very physically active job, of which I loved, because of the pain.
My impression is that optometrists with their photographic retina scanners find “early retinopathy” in pretty much everyone who has diabetes, but real ophthalmologists do not. I had a very similar experience to yours with an optometrist-- and the MDs I’ve mentioned it to since then pretty much just rolled their eyes and scoffed.
acid, yes, mine was also one little microanuerism. i just dont know how this could be happening so quickly and with good/ok control. bad genetics? ugggh!
i hope you are right sam! i went to an optometrist as well for this-here on holiday in the states i get the contacts and glasses and everything-usually so much cheaper when the dollar is not doing well. i go to the diabetes clinic at the hospital where i live in february and ill bring these results with me and see what they say.
Thank you everyone for your sharing your complication info. it is really interesting to see how some of us have remained relatively complication free for ten or 20+ years and how others develop them much earlier despite being careful!
I’ve been diagnosed with T1D for almost 32 years but my diabetes was slow onset and I had symptoms a year or two before that. I encountered pain in the bottom of my feet within a few years of my diagnosis. I always thought it was peripheral neuropathy but after recent treatment of plantar fasciitis, I think those early symptoms may have been more plantar fasciitis than peripheral neuropathy.
In 2012 I was diagnosed with moderate delayed stomach emptying or gastroparesis (GP). This diagnosis made me really sit up and take notice. I completely revamped my attitude and motivation to take care of my diabetes. I cut my daily insulin dose in half, reduced my BG variability, and dropped my A1c from 6.8% to 6.0%. I still have symptoms of GP but I think that I’ve slowed down its progression.
The landmark Diabetes Complication and Control Trial found that better blood sugar control does in fact reduce the risk and slow down diabetes complications. You cannot eliminate the risk of diabetes complications since so much depends on genetics but you can reduce that risk a lot by lowering your A1c. The A1c number alone is not a great number to evaluate your blood sugar exposure.
I think there’s a lot to be said to reduce BG variability. Less variability means you can reduce the average BG with undue risk of hypoglycemia. Most importantly, it means you can spend more time in your BG target range. While a CGM is a great tool to evaluate control, strategic fingersticks are also effective. Testing before and after meals can give you good insight into the effects of meals you like to eat. I’ve recently experimented with an app called Meal Memory. With your cell phone, you take a picture of your meal and then record your mealtime BG and your BG two hours later.
While we can’t control our genetic inheritance, we do have some power over what and how we eat. We also have some control of how much energy we devote to our daily routines of BG testing. Testing in pairs, like the Mea Memory app does, is a great way to learn about and hopefully improve post meal BG excursions.
Sorry you got this news. It would upset anyone. But now you can do something to help stack the odds in your favor. Good luck!
I was diagnosed in 1961, & my 1st complication was retinopathy in my left eye in the mid-80s. A line appeared in my left eye & wouldn’t go away with rubbing or drops so I went to the eye doctor & he said retinophy. I had laser treatments but the bleeds came & went but still only in the 1 eye. One was really bad, I remember walking around Santa Fe & suddenly it was like a curtain came down over my eye! I had extensive laser treatment & since the early 90s it has settled down though my sight is not very good in my left eye. So I think I’m really lucky not to have other severe complications. Who knows how good my control was in all those early years, I certainly never let diabetes stop me in my work environment or traveling. I have taken things more seriously since then.
I am 17 years since diagnosis. It’s been 16 years since my A1c dropped below 7 and has never been above 6.5 since. But still I have neuropathy. Some numbness in my feet and burning around the ankles.
First complication of diabetes came at 40 years out it was diabetic retinopathy and it was like the monster I chased for 40 years caught up with me treated with laser for about 20 years then had a vitrectomy thank goodness my eyes are stable now at age 64 no other complications
For two years or so, my eye doctor completely ignored my complaints of having blind spots in my right eye. Finally I went to a new eye doctor, she said I had retinopathy and sent my to a retina specialist. This was two years ago after having been T1D for 24 years. The neuropathy in my hands I think started about 5 years ago, but I never realized it may be neuropathy (we get bombarded with information about feet, not hands). It was officially diagnosed earlier this year and didn’t really get bad enough to complicate things until late last year.
I started sensing a numbness in both hands back in 2011/2012. I made a big push in early 2012 to better control my blood sugar. I went low carb, started daily walking, and paying very close attention to my blood sugar levels. My program was successful and I continue those better habits to this day. With much better blood glucose numbers, the numbness in my hands completely went away. I had not thought about this much until reading your comment.
After 45 years still going strong. I did way back at about 25 years in had some background bleeding, but cleared up and every year I sit in that chair waiting for the shoe to drop but so far so good. Got my eye exam next week and hoping and praying it stays that way. I was told by my endo back when I first had the background bleeding that she would see that kind of bleeding in patients that had diabetes for about five years. Kind of scary!
how can you keep your BG so low w/out fearing a crash? if i go below 70 i panic. my last A1C was 6.5. that’s as low as i’ve ever been and its been a lot of work to get there.
Daisy, I used to be like you due to the volatility of my bg’s, years ago. I’d FREAK when I saw a low number or when I felt low. Now I don’t worry much and I sometimes keep working (like heavy yard work) when I’m low, because I’m busy and now know that if I don’t run into the house the next minute to eat carbs, I’m not going to die. As long as I don’t get central vision blindness, I know I’m not getting to the point where I really need to eat quickly. It all comes with “experience”. It also comes by using LESS INSULIN and eating FEWER CARBS. If I pig out too much and therefore bolus a lot, I’m going to have lots of bg swings.
If I see my CGM trending downward (the graph I mean, not the arrow as I find that arrow lags behind the graph and is kind of useless) and it’s near or crossing my low limit (I have set to 4.5 or 80), I will frequently eat a single glucose tablet or, if I’m active or there’s IOB, I’ll eat 2-3 glucose tablets to bump it back up. However, if the trend is not actively trending down and is steady or just slightly drifting, I’m fine leaving my blood sugar at or slightly below my low limit for hours on end (which is something I never would have been able to do before getting a CGM). My last A1c was 6.0 and I have very few severe lows.
firstly, my basal rates are very low. my total basals for the day are 12 units. and i don’t stack my insulin; i usually wait out the 4 hours between meals/snacking so i can get an accurate bolus. (i do use the “wizard” feature on my MM, which i love, despite that it is not always correct) but, as you said, i definitely do freak out when i get what i feel is a low even though you describe it as relatively normal range. yup, i have OCD and i indulge in a good panic attack. ridiculously, i shoot for perfection, and when i am striving for the impossible, i dread every minute that i know that it cannot exist.
As long as I don’t get central vision blindness, I know I’m not getting to the point where I really need to eat quickly. It all comes with “experience”.