Hello everyone, I've been T1 for 18 years.
Three months ago I was told I have the earliest stages of retinopathy. And what a giant wake up call it's been! Long story short.. I've lowered my A1C from 9.7 to 7.9 (in progress to get to normal range) But I have been having an increase of floaters, I've been to an opthomologist twice in the last two weeks and all they have said is I have mild/moderate bleeding. No treatment has been mentioned, They've basically just told me to get my sugars in check. Is this normal? I mean these floaters scare the living day lights out of me, and I can see a few very faint 'cobwebs' too. Can anyone share experiences, ect. It would be greatly appreciated. Would really help me calm down a bit, since this is all very new.
Thanks.
Hi Ashley. Sorry about your news. It IS really scary when they tell you your eyes are changing, I well remember. Floaters can be small bleeds. Or excess protein blobs, maybe? I think the cob web-ish ones are tiny bleeds. I have gotten things that look like a giant spider - black with long fibers extending off a main blob. They gradually disappear over time. Normal people can get them too, if that's any consolation. The blood ones should slowly clear.
Good luck. And good job lowering your A!C! Sometimes People with diabetes who lower their A1C's get worsening retinopathy. I did. It's supposed to stop when you stabilize, they say. I always wonder if it is because of more lows, but I guess there isn't evidence on this.
Thank you for replying :)
I really hope they eventually fade away, they are really annoying. If you don't mind me asking what happened with your retinopathy?
Also, I met another diabetic who lowered her A1C from 12ish to 6ish in 9 months, and she went from no signs of retinopathy to proliferate. Really scary!
Hi Ashley.
So to clarify, were you diagnosed with background retinopathy or proliferative? You might want to ask if you don't know, as both have different guidelines for activity. ( you should not do anything to cause increase in head pressure when working out, if you have proliferative.
I don't think bleeding that you can see happens until the proliferative stage, so may you are seeing cotton wool spots or micro hemorages.
Lowering the a1c quickly after a long period of hyperglycemia can in some cases worsen the existing retinopathy. I had Moderate NPDR ( background) but when I went from an 8.9 to a 6.2 in 6 months it got worse in 1 eye. I don't need laser yet, but am going every 5 months instead of 6 now to get checked at Joslin. I am told by my endo, that it can and will stabilize eventually but may take a couple years to do that. So far it has been almost a year, and I still notice some worsening spots from time to time, but much less than when I first got into better control. The body needs time to catch up. It takes 2-5 years for the vascular bed to rework itself to the lack of chemicals that caused the breakdown to begin with...low blood sugar is worse than high from what I am told, as it can cause an increase in VGEF , which sends signals to the brain to grow new vessels if there is ischemia ( lack of oxygen in the eye) so avoid bad lows...a low A1c is not as important as a consistent blood sugar range.
I find any time I deviate outside ( 100-200) I get some issues. But mainly from lows, because the vessels are now going from pumping faster to slower...think of it like a bunch of garden hoses in a field. You have little holes in the hoses and high sugars tend to cause the dysfunction of the body to regulate the speed the water goes through the hoses...so you get leakage and such, then when you lower the A1c, the water pressure is lowered, which does less damage to the hose, but does not allow the field to get as much water because the water ( oxygen) is not getting to all parts as forcefully and some parts of the field die. I know it is a silly analogy but it made sense to me when I was trying to grasp the process. This is what causes the brain to eventually try to increase flow by making news vessels.
So stay in a tighter range, avoiding lows and get as much cardio as you can to increase oxygen. That is what I am doing. Good luck!
Ashley,
Also...keep the stress in check. I have obsessed about my retinopathy for 12 years and find when I try to relax and not think about it, or not get too high an anxiety level over a symptom, my eyes do better. There is another kind of retinopathy called Hypertensive retinopathy that is cause by increase in BP. I have two eye drs who both say even a small increase in pressure in an already compromised vascular bed can cause spots... the capularies constrict when you are in flight or fight mode and cause lack of blood flow and oxygen... If you have any other questions, I can try t help and this is something I have tried to understand from my questions to my drs and reading about the condition. I like you get really scared from the symptoms.
Josh, thank you for replying. It's greatly appreciated.
My opthomologist says I have Non proliferate with Mild/Moderate bleeding. I'm still trying to make sense of what that means. I was told no treatment is needed at this time, and to just keep my sugars in check, and increase my cardio. She wanted to see me back in 6 months but I insisted on sooner, so we agreed on 4 months. Although I would love to be seen every month (Haha, I am so paranoid.) But this is all so new still.
As for the floaters, cobwebs and squiggles.. I don't believe I see any blood. Only in very bright lighting do I see the "squiggles". The floaters are there all of the time. I'm getting better at ignoring them, sorta. My endo doesn't seem to be too worried for the moment. She's only said to increase my cardio, and keep my sugars in check so that hopefully I can stop it from progressing too fast.
I didn't know about the lows being worse than the highs, that kinda scares me since I have had more lows recently than I have had for years. I'm trying REALLY hard to stay in a consistent normal range. Very frustrating when I go to sleep at 114, and wake up 8 hours later at 300! I'm trying to slowly implement more exercise since my body is still getting used to being in normal sugar range.
Thank you again, your info is VERY helpful!
Ohh, just read your profile. Your line of work is AWESOME! :o
I see you fly ALOT, do you have any issues with the retinopathy and flying? I fly from Florida to California atleast once a month. My doctor says it's safe. What do you think?
Thanks
