Retinopathy
jamie_lee80
Posts: 176 Member
so.....after 24 years of being T1D...my first complication has risen and i'm terrified. Last year I went for my regular eye check up and he found some slight bleeding in my eyes. I was referred to a specialist and he did a laser correction which was successful. I went back once per quarter and again just a week ago and was told that everything looked great and I didn't need to be seen for 6 months.
Last week I went to a new eye Dr (my insurance changed and I had to switch drs). He dialated me even though I had just been dialated at my specialist a few days before. The new Dr found some new blood vessles that had formed and said that it needed to be dealt with right away because it could lead to major problems. I am now freaking out, I have an appointment with my specialist in June and am upset that they didn't catch this at one of my 4 appointments there over the past year. Has anyone else had issues with their eyes? I have made huge improvements in controlling my diabetes over the past 18 months.....i'm on a pump now with cgm, i exercise, watch what I eat.......i brought my A1C down from 11+ to a 7.2. I am terrified that my lack of caring in my teens and 20's are going to now catch up to me. At 34 years old I can't believe how freaked out that I am with the thought of going blind.
Last week I went to a new eye Dr (my insurance changed and I had to switch drs). He dialated me even though I had just been dialated at my specialist a few days before. The new Dr found some new blood vessles that had formed and said that it needed to be dealt with right away because it could lead to major problems. I am now freaking out, I have an appointment with my specialist in June and am upset that they didn't catch this at one of my 4 appointments there over the past year. Has anyone else had issues with their eyes? I have made huge improvements in controlling my diabetes over the past 18 months.....i'm on a pump now with cgm, i exercise, watch what I eat.......i brought my A1C down from 11+ to a 7.2. I am terrified that my lack of caring in my teens and 20's are going to now catch up to me. At 34 years old I can't believe how freaked out that I am with the thought of going blind.
0
Replies
-
We must have been diagnosed at the same age, because I'm now 35 and have been a T1 for 25 years....you mentioned you are 34 and going on 24 years of being a T1. I can imagine how freaked out I would be to have any complications, but when you talk about complications with your eyes, it ups the freak out scale in my opinion. I hope your next appointment brings you answers and will calm some of your fears. Since one doctor didn't see any additional issues but the new one has, it may be worth getting a third opinion just to make sure everyone is on the same page. Doctors are funny in that some of them see one thing and others see something else, so don't rule out anything until all of the information is in and you find the doctor you're most comfortable with.
Also, just from having my eyes checked every year, a few years ago I needed to get my eyes checked before the end of the year (last minute at it's finest) so I found an eye doctor with Saturday hours and could me in the last Saturday of the year. She dilated my eyes and did all of her tests, determined my eye sight, gave me a new prescription for glasses and sent me on my way. The following year I went to a different doctor (I actually planned it out ahead of time and did some research), and he said my prescription was way off and had no idea why the doctor who saw me before him even gave me the prescription she did. I know eyes start to change as you get older, but they don't change that much in a year. Needless to say, I've seen the new doctor the past several years and I'm happy with him. Point of the story was that I got 2 very different exams from eye professionals, so they don't seem to always be on the same page, which is why I think getting a few opinions is not a bad thing. It's also good to hear that you are taking better control of your T1. Just remember, we may have T1, but T1 does not have us - it does not define who we are or what we are, we determine that for ourselves.0 -
I've had type 1 for 20 years and had a lot of challenges with A1C's for most of that time.... particularly in my teen years when I had both type 1 and type 2 and it was less common.
Anyway, the only problem I have had with eyes is that I had some trouble in 2009 with my right eye, which ended up being a brain tumor. The symptoms didn't quite match what the brain tumor should have caused, so they were thinking Myasthenia Gravis. That is another auto-immune disease that is common with those of us who have problems with HLA genes on chromosome 6, which leads to autoimmune diseases like type 1, Hashimoto's, Celiac, etc. They couldn't conclusively say whether there was myasthenia or not, and I opted not to have surgery for the tumor because the chance of survival was 50/50. Fortunately, I haven't had any retinopathy yet, but I'm sure it is a question of when, not if.0 -
@tmlandgraf , I was diagnosed at the age of 10.
@midwesterner , that sounds really scary. We all have our things that we have to deal with I guess. Its hard not to let it all get you down sometimes.
I go to my specialist on the 17th of this month. I am really anxious for the results0 -
Good luck with the specialist. I was diagnosed with retinopathy in high school (1996) by the same doctor that did my diabetic grandfather's laser surgery. There was fluid very close to my retina and maybe a very small bleed. Anyway they decided to watch it and to this day I have never needed surgery. In fact at my last checkup they said my eyes were fine and that there was no retinopathy at all. The point is that your eyes can get better! Also as control tightens, eyes tend to get worse. I don't recall why this is but my doctor did say that it is not uncommon to see negative changes in the eyes as A1C improves. If this happens I think you just need to watch is closely cause eventually your body will adjust. I have had great A1C for several years but they were not great before I had a pump and CGM.0
-
@okulyd That is encouraging! Thanks!! It is awesome that you were able get rid of the retinopathy! I hope to have the same results!0
-
Update- I went back to my specialist. He ran tests for approximately 3 hours and said that everything looks good. The damage that the new eye dr saw was the damage that I was already being treated for. He said that everything is improving and to keep up the good work! It was very encouraging, after the last appointment I was terrified.0
-
Jamie, Congrats on the good news! What a huge relief
0
This discussion has been closed.