Four years and a little retinophathy :(

This week marks my 4th diaversary and most of the time I am coping reasonably well…or so I thought until the eye doctor identified 2 “subtle” spots in my right eye with retinopathy. I did have a pretty rough patch BG-wise over the winter (bad infection, stress due to a death in the family) but with increased activity this spring and summer (yoga teacher training, yard and garden work) I see my eAG dropping over the last few weeks. So I am hoping to see my a1c drop, too, and maybe the retinopathy will resolve as well. Paws crossed! :smiley_cat:

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I’ll keep my paws crossed for you for sure!

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@CatLady When I had my cataracts treated over the last few years the doc mentioned a couple of retinal bleeders that I had. But at my last appointment he said they were resolved! I think your current tight control can be of enormous help. The best of luck to you!

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Flat line… shoot for that flat line. I was diagnosed with retinopathy 6 months ago and was headed in for the first round of defense 3 months ago when my doctor said there had been enough improvement not to have to proceed yet. It’s not “reversible”, so they say, so unless it was just straight magic, it must’ve been my flat line.

Now my line is crooked as all get out, and I dread the next appointment, but follow the hope in this message (until it slipped into useless chatter).

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Once the retina has been damaged it’s not reversable. But if retinopathy is caught before any damage has occured (which is usually the case for people with diabetes if they are getting screened yearly), then those early signs can be reversed.

I hope your retinopathy doesn’t progress any further, @CatLady!

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Then I hope her “little retinopathy” is nothing more than a little blood sugar clean up. I’m not exactly sure where I was with it, but my retina specialist said he hadn’t seen this in his experience. And that I must be doing something right. Went right to my head, and I went home to celebrate. With cookies. :woman_facepalming: I do know doctors LOVE to compare everything they’re talking to you about to whether or not they’ve come across it in their experience. It’s probably a big motivator. With occasional unintended consequences. (Cookies). :grin:

I’m sorry to hear this. Can I ask if you saw a optometrist or an ophthalmologist?

Maybe most of his patients do not improve their blood sugars like you have :wink:

To add to the anecdotal evidence, a few years ago, before I got a CGM, I had one small bleed in my eye. The eye doctor said - it is nothing major but we need to keep an eye on it and see you in one year year. My blood sugars were not terrible but let’s say my A1Cs were not in the 5’s like they are now. That bleed turned me to the internet to find out more about what the heck I could do to lower my A1C. And I found lots of stuff that I had never been told and even bought myself a CGM (which I had never heard of) which was the best thing ever.

Last appointment, the retina specialist said something like - your eye’s are great no sign of retinopathy. And I said, are you sure? because a couple of years back there was something there. But he said, the blood had all cleared up and there was no lasting damage. So there is a small hope for those with minor damage.

Back to @CatLady - I am cheering for you. Keep doing all the right things - visiting the eye doctor to keep on top of things and working on those BGs :slight_smile:

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@CatLady I am rooting for your eyeballs! And reading all of these posts is really encouraging.

Thanks to everybody else for sharing your experiences, I’m so glad to read that there are some positive outcomes.

As I was reading, I begin to wonder how much exercise has to do with this. My dad is in his 70s, no diabetes, but when he went in for his annual exam his doctor asked him “do you walk every day?” And my dad was flummoxed. He is not an exerciser! He does not like walking or running. The doctor kept prodding, “what kind of exercise do you do every day?” Finally my dad realized that what he did every day was go dancing. He danced five days a week at the time, maybe more. The doctor said that it was what was keeping him young, and that the backs of his eyes had a fantastic veins for somebody his age. He really emphasized how important exercise was for eye health. :stuck_out_tongue_winking_eye:

I am excited to hear about your better control, yoga teacher training, and improved health and wellness! And everybody else’s exciting improvements!

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I’ll share my “retinopathy” experience here, I hope that the circumstances are such that it might offer a little peace of mind.

Shortly after my diabetes diagnosis I went and saw a local optometrist. I made a point when scheduling to mention it was for a “diabetic eye exam”. He scanned photos of my retinas, and then barged into the room saying, “diabetic right, I thouht so… “ clearly before he’d read my medical history or even looked at my chart. He pulled up my retina images on the monitor in the room and he had already circled two darker looking spots. He then proceeded to elaborate that these were mild non proliferation diabetic retinopathy from wildly out of control diabetes and the same thing was probably happening in my kidneys.

Then he looked at my chart and saw I had an a1c or 5.3 and had been diagnosed with diabetes less than a year prior and started mumbling. He then charted that I had “diabetes insipiditis” which isn’t even the right disease.

So I went to my diabetes doctor and explained to him, who said—- “you absolutely do not have diabetic retinopathy.” Then I scheduled an apt with a highly regarded ophthalmologist (a real doctor) who also said, “there is absolutely nothing wrong with your eyes…”. I’ve since heard many other stories from many other people around town about the same optometrist essentially making up nonsense diagnosis for people…

So please get a second opinion, particularly if this exam was done by an optometrist. My personal opinion/ belief that I’ve come to after investigating due to this experience is that the system is such that optometrists are highly incentivized to find “diagnosis” that are well beyond their expertise in order to allow them to bill medical insurance at much higher rates than they’re able to bill vision insurance for. That’s not to say that I think that many of them are making false diagnosis on purpose, just that I think that their reimbursement arrangement is so dysfunctional that it leads to finding issues where there are none.

Hope this might be helpful

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Would this include my optometrist asking me if she could feel the lump in my neck when I answered yes to having any lumps? And then proclaiming, “Ew! Feels like cancer!” Like that kind of misdiagnosis?

I broke up with her.

Come to think of it, she was also the one who had “zero concerns” about retinopathy development during pregnancy even though my a1c dropped from 10.3 to 6.3 in like 8 weeks. Told me she’d see me after pregnancy. You know who else released me till after pregnancy? My endo… said there was nothing he could do for me, good luck, and come see him when I was all done. He did the same for me during brain surgery.

I could tell stories until Friday…of next week…about doctors and some crazy things I’ve seen. But I’ll go funnel that energy into something that will feel good.

I’ll take that and :running_woman:t2: with it. :grin: I’ve been putting in work.

So then @CatLady, jury’s out. I think. Looks like there’s tons of evidence to support putting in the work. Paws crossed. :grin:

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Doc, that is so good to know! :smiley_cat:

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Specialist opthamolgist, a very sharp guy!

Wow, I hope that’s an exaggeration…that is SO unprofessional!

Just a quick update: I am very happy (relieved!) to report that my a1c has dropped from 7.3 to 6.7!! Thanks, FUD family, for all the info, help, and support! :hibiscus:

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That is AWESOME @CatLady!

There is something satisfying about making the number in the ones column smaller.

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:bouquet: congratulations!! :bouquet:

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Amazing progress! So glad this forum was helpful!

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That is fantastic news! Thank you for sharing.

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