Maculopathy reversal miracle?

[christi_987]

Having been type 1 for over 30 years, it came as no surprise to me 12 months ago when I was diagnosed with early maculopathy (3 small dots in one eye). 6 months later I was told I had bilateral maculopathy in both eyes, but as it was in the very early stages that no laser treatment was required. However, the results from my annual review a few weeks ago when my eyes were photographed (unusually not dilated this time as the clinic was busy), I was told I had no maculopathy in either eye, just background retinopathy, so will not be tested again for another 12 months. Now while I am delighted I can't help wondering is this kind of reversal normal giving that my HbA1c has not been below 9 this past year and is currently 9.8 (with major fluctations between lows and highs)? Can this be a minor miracle? Has anyone else had this complication disappear despite poor control. I have noticed my vision is more blurred but this could simply be due to high levels, also my night vision appears to have totally disappeared as well - I've been told this is old age (and I'm only in my mid 30s). I hope to hear if others have experienced this, and to give hope to others who suddenly receive such a diagnosis that mini miracles can happen!

 

[StephenM]

Sadly I believe that any changes are permanent. The issue is interpreting them. In reality anyone who has been Type I for over 20/25 years usually has some minor changes. With Type II this can occur after a few yrears and be present on diagnosis. I once had photographs done. A few weeks later I got a letter and an emergency appointment. Feeling extremely apprehensive I went along and was told there were changes not unexpected after over 40 years on insulin. The consultant said the people that scan the photographs tend to try and be "better safe than sorry" so you do get a few false positives. Better than a false negative though.

 

[Northerner]

Hi Christi, welcome to the forum 🙂 I think Stephen is probably right, and it is a case of interpretation. I've had to go to the eye hospital for my last three appointments, rather than just having the photos done because they had spotted changes close to the macula. However, on closer examination the consultant has decided that there is no intervention required.

I hope that you manage to escape the need for any treatment. I'm a little worried though by your control - what insulin regime are you on? Having an HbA1c in the 9s and wide fluctuations will not help your eyes, as you know. Do you carb count? From reading many people's experiences here I have seen that, even though a person has been diagnosed a long time they might not be up to date with all the latest thinking and treatment options, as they are often assumed to 'know everything' - sometimes a refresher can really help turn things around. I hope that, if you can continue to post and read the other people's experiences here we can help and support you in achieving better, more stable levels, so please stick with us and let us know a little more about you 🙂

 

[imtrying]

From reading many people's experiences here I have seen that, even though a person has been diagnosed a long time they might not be up to date with all the latest thinking and treatment options, as they are often assumed to 'know everything' - sometimes a refresher can really help turn things around.

That's me!!

Hope you're doing ok Christi - welcome to the forum. This is definitely the best place to learn and improve control. I've learned so much from being on here I can't even begin to tell you how invaluable its been to me.

I have finally managed to get myself on a carb-counting course and am really enjoying it, feeling more empowered than ever before and making better decisions.

I hope you'll get as much out of this site as I already have.

 

[Robster65]

Hi CHristi. Welcome 🙂

I have to agree with Stephen and Northerner. I'm sure it feels like a miracle but as said, just a different opinion on the same set of results.

I've been T1 for a similar time to you and have got away without any real problems. Since joining the forum, and listening to advice (and even taking some of it 🙄) my HbA1c has come down from the 8s to the low 6s.

If you want to regain some control, we may be able to offer you some simple methods that will help you to get your BGs down and hopefully stop any complications in their tracks.🙂

Rob