Retinopathy w/ good control

(Audrey) #1

Hi, friends.

I’ve had T1DM for 7 years now, and since I was diagnosed my A1c has been 5.5-6.7. In the last year I’ve let it run a little higher a few times (work, stress, some other health issues), but still stayed w/in goal with my A1c. Just learned today I have mild retinopathy of my left eye. Feeling pretty down about it, because it’s only been seven years and I feel like I really try to take good care of myself. (Y’all know how challenging that can be.)

Anyone else with a similar experience, or general words of wisdom or encouragement?

Thanks, y’all.

Audrey

(Tyler) #2

I’m sorry to hear that… unfortunately, T1 is something you can only try to manage.

What were your symptoms that led you to the discovery? With good BG levels, what has your DR said about it?

(joe) #3

@audge512 hello Audrey,

{I realize this post is very old - but this is also for those experiencing a retinopathy setback}

my experience is that after many years, and with no symptoms, I went to a retina specialist and we found prolific, on-disk retinopathy.

The growth of faulty blood vessels and the aneurysms of some blood vessels, in some people, may not be directly tied to sugar control. From what I’ve learned, there are many potential triggers for the new vessel growth, hormones, oxygen levels due to circulation, and a bunch of other stuff I don’t understand including autoimmune responses, all play a part.

Of course, if you have the issue, then better control of sugar is tied to less progression, but it’s not always root cause. If it makes you feel any better, i’ve had my retinopathy for 18 years, it has required some LASER in the beginning, and it’s been stable the last 16 of those years.

the encouragement part is that the treatments (both LASER and injections), have become more accurate and predictable,. The monitoring (with that IV glow in the dark stuff) and with the newer UV and photoscopes have become MUCH better, and if you don’t already have one, finding the BEST retina specialist available to you for a 1st or 2nd opinion is very important.

I know, these setbacks can make us feel bad. Just wanted to say that I’ve been there. got my fingers crossed for you.

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