Retinopathy :( - UPDATE

I visit my ophthalmologist every year, like clockwork, and for the first time yesterday, he told me that I have some bleeding associated with neovascularization in both of my eyes. He said it's not bad yet, and it's nowhere near my maculas, but I'm still trying very hard not to freak out. I know almost all diabetics experience some degree of retinopathy, and I know that after 17.5 years, it was about time for my number to be up, but...I'm not ready. This is the first complication I've experienced, and I'm really scared.

I'm not scared about the retinopathy in and of itself, per se, at least not yet. He referred me to a retinal specialist (going the day after tomorrow), but he said it was just as a precaution, he doesn't think I'll need laser treatments yet. So it's not so much this stage of the retinopathy that is bothering me. It's more that I know that this is just the first in a long list of problems that are going to start happening with my body. Even if it's 5 years, 10 years, before something else, this is the beginning, and that's a really sobering and disheartening thought. I'm only 25, I'm not ready for my body to start shutting down.

I always knew the diabetes would catch up with me, and I guess it's surprising that it took this long, but it's just a huge bummer. Please, someone, make me feel better. Tell me you've been experiencing retinopathy for 30 years with no problems. Tell me you've had complications and you're still alive, healthy, and happy. Please just tell me you understand. Because right now, despite my amazing support system (specifically my parents and my husband), I feel so alone.

Edited to add: Please no horror stories. I literally don't think I can handle hearing that right now.

Hey there -

Getting bad news is never easy - especially when you think you've done the best you can with your diabetes.  I've been diabetic for 23 years and I'm 30 years old.  I've had stage 1/2 kidney disease since I was 14 and went on ACE Inhibitors.  After a few years of watching my diet and limiting my protein, I was able to get off of the ACE Inhibitors.  About 3 years ago, I had 'floaters' behind my eyes that appeared to be 'bleeds' too.  I knew I hadn't been paying attention to my diabetes and my eye doctor told me it could get worse, but it could also get better if I took care of myself.  So, 3 years later, I'm still not 100% the best diabetic in the world, but I have improved and the floaters have gone away.  I'm hoping this is the same for you!! Also, it sounds like you have a great doctor who is being pro-active rather than re-active by sending you to a specialist.  So good luck when you go to the doctor and let us know how things turn out !!  I'm sure there will be ways that this can be resolved or treated!!


Don't stress.  Sometimes these things develop into something worse and other times they dont.  When I was in college an eye specialist saw a spot that looked like the first stage of retinopathy.  I'm 38 now (diagnosed at age 4) and while the spot hasn't gone away, it hasn't turned into anything worse. 

I don't have extraordinary diabetes management.  My A1c has been 6.7 for the last few years, with plenty of highs.  My control was terrible through most of my 20's.  But despite that I've not had problems with reinopathy.

Of course it's good to have the best control you can.  But in the meantime stressing won't help and retinopathy many never develop.  Take care.

I am sorry to hear this Bari. At least it has not progressed enough to the point of laser surgery, so that's good news! I got diabetes at age 8 and started having laser treatments right after college. The good news is, if you keep up good control, it can stabilize and I haven't had any more treatments for the last few years. I also have had some kidney problems, and nerve damage, but my 27th birthday will be here soon, and I am still alive and due to have my first baby, a baby girl, in June. My A1C is 5.6 now and the baby has been perfectly fine and I am not doing too badly either. When they catch retinopathy early, it is easily manageable and treatable- mine was the most advanced kind and it was not caught in time so you are in a much better boat than I was. Just because one complication happens, doesn't mean the rest will follow suit. Don't stress out about it, because that won't fix anything. Just make sure you stay in tight control and that will either delay or stop anything else bad from happening and that's all you can do.

what is retinopathy?

I had some retinopathy very early after the year 2000. It was my first complication after my diagnosis in 1945. My doctor was ready to start laser surgery. Soon after that I tightened my control more than ever and stopped having so many highs 140-180. the spots in my eyes began to fade and laser surgery was put on hold. Then I started pumping in 2007, and my BG was much more stable. The spots disappeared completely, and have not bothered me since that year. The secret is to have very stable control with few highs and lows. I advise you to everything possible to avoid a roller coaster control. A good A1c below 6.5, or even below 6.0, is not enough. Having a good A1C combined with a much more steady/stable control frequently causes the reversal of retinopathy. It also caused me to stop having any neuropathy pain. Now I am complication free after 65 years of T1.

[quote user="Jozef "]

what is retinopathy?


"Diabetic retinopathy is the most common diabetic eye disease and a leading cause of blindness in American adults. Diabetic retinopathy is a progressive disease that destroys small blood vessels in the retina, eventually causing vision problems. In its most advanced form --proliferative retinopathy--it can cause blindness.  According to the National Eye Institute (NEI), between 40 to 45 percent of Americans diagnosed with diabetes have some stage of diabetic retinopathy."

Thanks everyone, it's just a sobering reality that this disease isn't just a day-to-day thing that affects my blood sugar, but a legitimate autoimmune disease that has the ability to destroy my body, one piece at a time. Just very depressing is all.

I recently started on a cgm and it's absolutely changed my life. My a1c's have always been in the 5.5 - 7.0 range, and this January I had a 7.8, my highest ever. I started the cgm shortly after that, and this week I got an a1c result of 6.0, so I'm on my way back on track. The best part is that I achieved a 6.0 with only 2% of my blood sugar readings being lower than 60 (out of 288 total readings every day). I think that's a pretty good percentage. I'm working very diligently to get it down even further, I'd love to see a 5.5 next time. Hopefully this better control will prevent the retinopathy from progressing and it will prevent any other complications from starting.

I'm not looking forward to meeting with the specialist tomorrow, but at the same time, I'm hoping he'll tell me it's not that bad and that we just need to monitor it. I had a pretty depressing day yesterday because of this (aside from hearing about my 6.0!), so I could really use some good news and peace of mind tomorrow. I'll update my post after my appointment.

Thanks again. It's so nice to have people to talk to who really understand. :)


Went to the retinal specialist yesterday and got the best news I could have gotten. Basically, it's nonproliferative, there's no bleeding, just some microaneurysms, and based on my a1c's, there's no reason to think this would get any worse in the near to distant future. It may even reverse. Obviously no treatment necessary. He wants me to follow up in six months to see what my retinas look like then. Needless to say, I am VERY relieved! Thanks to everyone for your encouragement. :)

Yay! You should celebrate!

That must be a relief. I've just noticed some retinopathy myself and I'm hoping I'm in the same boat as you. 



Do not be discouraged.  I have had type 1 for about 13 years and have had no complications, thankfully.  I'm on the pump and occasionally (rarely) use a CGM, and my a1c was most recently 6.7.  

Your post caught my eye because I found out 2 days ago that my dad, who has had type 1 for about 8 years needs bifocals and has diabetes related eye damage (I assume it is nerve damage).  My dad isn't as fortunate as my mom and my stepdad (my parents are divorced) so he can't afford an insulin pump.  It makes it really hard to watch someone I love start to develop complications, but then I remembered my great aunt, who has had type 1 diabetes for 50 years, and she has absolutely no complications, whatsoever. :)  

She really gives me hope and keeps me staying optimistic, even though I worry about complications, too.  I know it is almost inevitable to get some kind of minor eye damage, etc. but knowing that things could be a lot worse keeps me going.

I always think of this quote when I'm having a bad day with type 1: "Even your worst day could be somebody's best."  That always reminds me that I'm really lucky to even be able to have a meter, insulin, let alone a pump available to me.  Obviously, I don't wish eye damage or nerve damage on anyone, but it is still reassuring to be reminded that I have it a lot better than some diabetics in 3rd world countries.

I'm not trying to belittle your feelings (I totally would feel the same way as you if it were me!), and I sincerely hope that your blood sugars stay as stable as possible and that you be optimistic. :)  I'm not sure if you're religious, but I think praying also helps a lot.  I will pray for you:)

Don't feel alone! 



Bari, I just saw your update (oops haha).  I am so relieved!!!  I hope you still find comfort in my words.



thats great! im glad ur eyes r okay


God only gives you what he knows you can handle. Even though this is the beginning of something it is not the end. it can be prolonged and sometimes stopped. Just keep yourself in the best control you can and live your life. I live with retinopahty and some vision problems. I had my retina detach in 1998 but it has made me stronger and more determined to be the best i can be. The honest truth is that i have been blessed with a transplant and try to help others by pointing out my mistakes.  

I know how you feel and it's ok and normal to be scared!  I'm also 25.  I've been diabetic since July of 1992, when I was 6.  I was diagnosed with proliferative retinopathy almost 3 years ago.  

See the retina specialist - he or she will know exactly what to do. You may need to see them pretty frequently but it's worth it!

I know some people who have retinopathy and developed it many years ago, but never developed other complications. It DOES NOT necessarily mean you will develop others!

Just continue to take care of yourself, and take things one day at a time.  If your blood sugar isn't under the best control, start to get that in line.

If you have questions, you can always ask - we're all here to help.

I can relate to being scared with retinopathy. The first signs of mine appeared in 2008 at my regular eye doctor, so I was referred to a retina specialist. About a year later, the retinopathy became proliferative and I had massive bleeds in my left eye. I had laser treatments in that eye, but eventually I had to have a procedure called a vitrectomy to remove the blood from the center of the eye. Rinse and repeat for the right eye a year later. The good news is that here I am in 2011 and both eyes are floater and blood free, and I can see wonderfully out of my right eye. My left isn't as good as it could be, but I can still see out of it, which is a miracle.

Don't sweat it. If you keep good control then your chances of complications will reduce dramatically. They won't be eliminated, but it really helps. I had poor control through college which I believe contributed to my retinopathy.

If you have any questions, feel free to ask!