Diabetic Retinopathy - VERY Frustrated

I am a 44 year old type 1 diabetic since the age of 12. I developed background retinopathy at the age of 21. My diabetes is brittle and sugar control does not come easy for me but I have worked hard to control it… When I was young, my sugar would spike for no reason to 500. It has been a long journey for me. The retinopathy progressed to proliferative and in 2000 I underwent a vitrectomy in my left eye. I regained my sight but the vision in that eye has never gotten better than 20/40. I had laser on my right eye in the mid nineties but never lost sight in this eye. I am now on an omni pod pump and have near perfect sugars since I have been on it. However, I have had bleeds in the right eye 3 times in a year and just had another one last night! My Doctor has given me shots of Avastin to kill off the blood vessels that grow and bleed but here I am again. I do not understand why I am getting bleeds with near perfect sugars and I am really frustrated. Even when I was not on the pump my A!C’s ran in the 6’s for the last 15 years. So has anyone had situations like this -where good sugar control doesn’t seem to make a bit of difference in complications? I feel like the normal rules of sugar control do not apply to me.

I’m pretty sure they say really good control can actually lead to temporary problems, though having problems over a year seems a bit unsual to me.
I had 1200 laser burns to my left eye and it still cannot be corrected well, but it hasnt leaked since.
Have you had the scattered laser in your good eye?
That’s the one that really seals things up.
The focal laser (which is less hammering and far less painful) doesnt seal everything or stop the growth of the bad stuff.
Havent hear of Avastin…?
Hope you can get it fixed because oh i know how frustrating the bleeds are. And my doctor would never laser them until it had dried up and cleared up. So I missed a lot of activity when I couldnt drive or see well.

He hasn’t lasered my right eye yet. He has been using this new drug AVASTIN. it is actually a cancer drug but they have found it works wonders for retinopathy. They inject the eye and it literally destroys the blood vessels on contact. My doctor likens it to “weed killer”. I spoke to my Doctor and I see him Wednesday for this new bleed and he is thinking it may actually be scar tissue from the old laser I had in the nineties that is bleeding.

So they say tight control can actually worsen complications temporarily? Why would that be?

Ya know, I read it back when I was dealing with my eye troubles. They used to say tighter control had an effect on retinopathy and could temporarily worsen it but that wouldnt last that long. I had a book and everything on the subject, and gosh I dont remember the name now.
Ah ha on the Avastin…my FIL had it for cancer.
If that works better than laser, more power to them! I’m happy to hear they have something new, and sorry you’re going through what you are. I hope that this works for you!


That’s the guy. Dr. Chous.
Used to read his stuff all the time.

I tightened my control about 2 1/2 years ago. About 2 years ago is when I started getting retinopathy. This month I was told that the retinologist could see marked improvement, but no improvement until I had an A1c around 6.5 for 2 years (below 6.9 for 2 1/2 years).

Sorry I haven’t had a situation like yours. I do know, though, that an A1c as high as 6.8 will keep my kidneys from working properly and brings back the tingling in my feet. Lowering my A1c makes them work properly again. I also know that in order for me to keep my A1c below 6.8, I have to walk 1/2 each day, as well as keep my carb intake below 100 grams/day.

Wish I could help more.

I have an A1c in the 5’s (most recent was 5.6) and I too still get bleeds.

I have had type 1 for 20 yrs now and just found out I have retinopathy in my right eye. I am waiting on a new insurance to kick in before I see a doctor for it. I dont have blood in my eye. What type of doctor should I see (retinologist or optomologist?) and what can I expect?

I see a retinal surgeon, but most ophthamologists will do.
She uses computer scans (not sure on the term).
Years ago they used dye in your arm to take photos of your retina, they probably still do.

Hello Mary:

Your experience is NOT in the least “abnormal”. That is the harsh, brutal truth…

We do our best and can still fail


I’ve had retina photos taken three times in the past few years. No dye! I was dilated and then they used this special camera device to take photos very quickly by putting it up very close (almost touching) to my eyeballs. Painless and simple :slight_smile:

Also had a few ultrasounds on my eyes…but I think that was more to make sure my retina wasn’t detaching post-vitrectomy.

Good to know, because the dye can make you feel a bit sick.
Not everyone, just some.

Mary, When I was told I had retinopathy, I cried… I did everything to prevent complications My A1C has never been above 6.9. I thought my control was great.My retina Dr. said “Mark, you could have pricked your fingers 50 times a day and took a dozen injections… retinopathy is just a long term complication”. Period. It is nothing that you did or I.
Since my diagnosis, I have had over 100 lasers and 3 vitrectomies. I now have glaucoma but Thank God, I am 20/20 as of last Monday…I feel and care for you. I have been through it all…when it reaches that stage, you are in the hands of The Dr.s and The Lord. Bless You , Mark

Great article. Mark

Thank you Mark. It is amazing how strangers can come together when there is a common bond. I really appreciate your thoughts and caring and right back at you. I am praying and hopeful this can be resolved. The left eye is stable but as I said, vision never improved beyon 20/40 in that eye. I talked to my retain specialist and he thinks this is not from the diabetes per se’ - but scar tissue from old laser that is bleeding. I see him Wednesday morning and will know more.Tthank you again for the kind words.

I might add, things can happen to non-diabetics too. I was talking to a grocery store clerk, and she said one day her BP went very high and she had a bleed into her retina which required laser surgery.
Totally unexpected.
Poor dear. I accidentally said, “dont worry, the laser doesnt hurt that bad…” and she got all upset.
Boy, had to cover my tracks take my foot out of my mouth and reassure her that she was going to be just fine.
And she was…:slight_smile:

Dear Mary: You are right, this is very frustrating. I am going through all the this right now myself. I had been doing fine for 25 years and then about two years ago, I started to get the warning from my local eye doc that I was going to need to see the retina specialist. I finally went last year to the ophthalmologist and have had quite a year–several laser sessions in both eyes, one major bleed that would not stop on its own until the doctor finally went in via vitrectomy and made it stop, several shots of Avastin. I have been going to the eye doc every week practically for the better part of a year. I go again Friday and I can’t wait. I have been having some small bleeds in my right eye this week, which is my GOOD eye by the way. I’m scheduled for a laser session which will hopefully seal up what ever is leaking. This is not fun and all very scary stuff. Just know that you are not alone. You are not the first person that this has happened to and you won’t be the last. Try to take care of yourself as best you can, body and mind. Other people don’t realize how hard this is because you probably look fine from the outside. Inside, though, you die just a little every time you see the black streak go across the inside of your eye. And, yes, it seems like when I really started to tighten things up, all the problems started. Maybe it’s just coincidence, but I have heard others say the same thing. Take care…