New in retinopathy

Hello. I am a 32 years old man from greece. I have T1D from the age of 11 (21 yrs now). A couple of weeks ago I was diagnosed with moderate NPDR at optho exam. The doctor asked me how is my a1c (around 9 for many years) and that there is no need to panic, we are gonna control it. A week ago I went to another optho (a retina specialist). His words exactly was “you have severe to very severe NDPR, actually you maybe starting the proliferative stage”. After those words everything gone blank, I am desperate and crying almost all the time. Is even possible to develop severe NPDR in just two years? My retina was clear at my last exam two years ago, not a single microaneurysm.

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Focus in on getting treated with laser or injections. I’ve been dealing with this on and off for many years and so far avoided a vitrectomy surgery, though that is an option too. The worst part is when I have a leak and see many speckle things for awhile. Used to be as long as a year, but honestly not as bad lately. Maybe because I had a few injections. Establish a good doctor and good relationship. I might add, years ago a dr (who was sadly my friend’s husband) said my “good” eye had a terrible leak going on. Well, there was no leak at all. Nothing. I found an excellent friendly surgeon (who even called me at home) and it was a far less scary ordeal if I had any issues going on. don’t be afraid, just tackle it.

I’m scare to death. I think that in time i’ll be almost blind (or at least lose most of my peripheral vision).

I have had extensive laser treatments, vitrectomies, and cataract surgeries, in past 30+ years. T1D 55+ years.

I still see pretty well, drive, etc.

The treatments available today are even better than what I had in mid-80s 90s.

Best advice is to have regular appt with retinal specialist, not optho. The optho appts you had maybe didn’t have the extensive knowledge and equipment the retina specialist has. The retina specialist is likely to treat earlier and has access to tools the optho does not.

And yes, some changes can come on suddenly.

Reducing your A1C would also help. Do you have endo or CDE to help you? If they think 9 is ok, find a new endo.

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The truth is that I have an excellent endo. All these years I was just pretty inmature to look after my self. Anyways. What are the possibillities to halt it…i don’t know…5,10,20 years before it becomes PDR? If I do everything right how fast it can progress?

No one can predict how fast it will progress.

You can influence if it will and by how much if you avoid/reduce time with high BGs.

A1C gives average. So 2 people with A1C of 8 may have different results if one ranges 50-250 bg, while the other ranges 80-180. Focus on your carb ratios and pre-bolusing to reduce spikes after meals. Many people eat less carbs, more protein/fat with meals which can also reduce spikes after meals. Maybe there are certain meals where you spike high no matter what. Decide if its better to avoid them (for me this is pizza).

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Is it true that a fast reduction in a1c can drastically progress retinopathy? Is there anyone with some experience in this?

Hi Philip,
I have had diabetes since age 11 too, now 52 years. Seems like eye trouble is one of our scariest complications. Please try to remember you are not alone. Focus on attitude and solution and reaching out to others…as you are doing now. You are in the solution! I agree with the suggestions mm had. Don’t beat yourself up! We all do the best we can which is never perfect! Hugs to you. Kim

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Yes, it’s true. Though it can be frightening in the beginning, note that with treatment it tends to resolve after about three years.

Here is a 2018 article from the journal “Diabetes, Obesity and Metabolism”:
https://dom-pubs.onlinelibrary.wiley.com/doi/full/10.1111/dom.13538

And a 1985 study in the British Medical Journal:

Further discussion at the UK website “Diabetic Retinopathy”:
http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

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I had what I consider to be “moderate“ control for a number of years. A-1 C of 8 to 8.5. In the last eight months, with Dexcom, my sugars have been much better. A-1 C of 6.3. My retinopathy suddenly got much worse. I’m hoping it will stabilize. I am now getting injections, vision remains good. I’ve had type one for about 30 years.
You should know that you are not alone and we all deal with this the best we can. Better control is certainly the best bet for the long run. Dexcom, for me, has been a life changer!

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I’ve had type1 for 34 years. I got my tandem last year and my a1cs went from 6.9 to 5.5.
I also had my eyes checked and they are fine with no issues.

I think fast changes can cause bleeds in your eyes, but in the long run you are better off down in the normal range.

My ophthalmologist told me after a year you are beyond the window for that transient worsening issue.

I suppose I was lucky to come through this far with no eye issues. Just like neuropathy and kidney disease. Some people get it with good control, some never do with poor control.

However, overall, people with normal or near normal a1c s are far less likely to have issues with eyes and kidneys.

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I’m so much happy that I found this forum. Thank you so much all of you!

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I’ve had some minor retinal issues clear up once I got sugars in good control and tossed in a few supplements to address diabetes sugar and complication pathways.

You should look into Taurine it’s a very cheap supplement with big impact on diabetic complications and the eyes.

Taurine and oxidative stress in retinal health and disease - PubMed.

Just read the titles of the “Similar Articles” section on the above link and see what Taurine is involved in. It’s quite a cheap, broad, safe, and effective supplement.

It’s heavily involved in the health of the eyes.

Regarding control and lack of control not necessarily determining outcomes…

Have you looked into haptoglobin. Interesting information on haptoglobin polymorphisms and succeptibility to diabetes complications.

I may order a test just to see what my haptoglobin genotype. Not conclusive complications multifactorial but interesting to see…

Holy cow. I just read up on retinopathy. It says that 80 percent of diabetics passed the 20 year mark, have retinopathy.
That sounds insane and well maybe a bit dated?
I personally know dozens of diabetic people passed 20 years with no retinopathy. I’m 34 years, is this something that inevitable at some point

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This was definitely “normal” to see “diabetic” changes in eyes at 15-20 years back in the 80s. My first laser treatments were in 1985-86, but had been told of noticeable changes several years prior.

My first treatments were scheduled, but delayed due to equipment problems, and not that many places had equipment. The lasers today are so much better, along with other treatments (injections) done earlier.

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Huh, well, I just got a retinopathy diagnosis myself this week. I’m at 31 years. At least I know it’s not just me…

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Any idea if Alpha lipoic acid, vitamin E and vitamin A omega-3 and n acetylcysteine can help in diabetic retinopathy?

I was dx with the very beginning stages of retinopathy after 22 yrs of urine testing. Luckily A1c testing started around then and also at home blood testing. I reduced my A1c by several points and have had no retinopathy in the last 40 yrs.

I’m glad you could turn that around!
From what I’ve read, tight control of glucose is the best way to prevent it.
I had moderate control most of my life and only really good control for a year.
So it doesn’t make sense that it can be just glucose control that drives it.
Probably everything that’s good for kidneys and heart is also good for our eyes.

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