Background Retinopathy Bingo!

[Burylancs]

Just had my results delivered electronically. Not sure whether I’ll also get a follow-up printed letter, but I suspect I will?

Pleased to be back in the ‘all clear’ club again after last years’ ‘background’.

12 month review, so seen again Nov 2025.

2025 doesn’t sound like a real year at all to me. Much more like something out of science fiction 😱

Interesting result. Can background retinopathy changes clear up. I asked and got an NHS reply ...'
'No. Background changes are
irreversible. However, the progression of the disease can be slowed or stopped with treatment and proper management
Diabetic retinopathy occurs when high blood sugar levels damage the blood vessels in the retina, which can lead to vision impairment. In the early stages, some symptoms may fade, making it seem like the retinopathy is no longer present. However, the damage to the eye is usually permanent.'

 

[helli]

Interesting result. Can background retinopathy changes clear up. I asked and got an NHS reply ...'
'No. Background changes are
irreversible. However, the progression of the disease can be slowed or stopped with treatment and proper management

Funny, I find the diagnosis of background retinopathy has come and gone many times over the last twenty years.
My eyes have been clear for the last five years with no signs of any retinopathy which sounds like background retinopathy has “cleared up”.
Or was previously misdiagnosed?

 

[everydayupsanddowns]

Interesting result. Can background retinopathy changes clear up. I asked and got an NHS reply ...'
'No. Background changes are
irreversible. However, the progression of the disease can be slowed or stopped with treatment and proper management
Diabetic retinopathy occurs when high blood sugar levels damage the blood vessels in the retina, which can lead to vision impairment. In the early stages, some symptoms may fade, making it seem like the retinopathy is no longer present. However, the damage to the eye is usually permanent.'

Yes I was told that by one screening person too.

And yet I’ve had 3 separate ‘background’ notifications over the past few years, and in between them I’ve had ‘all clear’.

Of course I suppose it’s perfectly possible that it’s the same damage that is being spotted, and then fading, and then being noted again?

I don’t seem to be the only person on the forum who has a sequence of ‘background’ and ‘all clear’ screening assessments.

Personally I’m just happy that I’m now in a period of ‘fade’ again 🙂

 

[rebrascora]

@Burylancs Many of us have had the background retinopathy letter and then the all clear a year or two later. Perhaps it is misinterpretation of the retinal photos or perhaps the retina can recover and clean up from a small bleed in the same way as other tissue heals after a bruise, but if there is a weakness in the blood vessel and conditions, be it high BP or variable BG, cause it to keep bleeding, then perhaps the damage becomes more permanent. I think we may see these improved results more frequently as technology enables us to manage our diabetes better and the previous medical thinking that things will always get progressively worse will hopefully gradually become a thing of the past.

 

[Burylancs]

Yes I was told that by one screening person too.

And yet I’ve had 3 separate ‘background’ notifications over the past few years, and in between them I’ve had ‘all clear’.

Of course I suppose it’s perfectly possible that it’s the same damage that is being spotted, and then fading, and then being noted again?

I don’t seem to be the only person on the forum who has a sequence of ‘background’ and ‘all clear’ screening assessments.

Personally I’m just happy that I’m now in a period of ‘fade’ again 🙂

Or does the 'all clear' mean there was no further damage since last time but the background damage previously detected remains ? Interesting that you have 'good control' but can still experience complications as in background retinopathy.

 

[Bruce Stephens]

Or does the 'all clear' mean there was no further damage since last time but the background damage previously detected remains ?

My interpretation is that the score is reporting the absolute level of retinopathy they're seeing. I'm R1M0 in both eyes, again, and I'd be rather disappointed if that meant my retina has been getting worse (but only linearly) over the past couple of decades. I'm hoping (and expecting) it means my retinas are about the same as they have been since the damage started.

 

[rebrascora]

Or does the 'all clear' mean there was no further damage since last time but the background damage previously detected remains ? Interesting that you have 'good control' but can still experience complications as in background retinopathy.

My test results letters since I had a background retinopathy early on after diagnosis state...

"Your test result showed no signs of diabetic eye disease. This means you are at very litle risk of sight threatening diabetic retinopathy at this time"

From this I assume that whatever they saw in my earlier test has resolved itself.

 

[everydayupsanddowns]

Or does the 'all clear' mean there was no further damage since last time but the background damage previously detected remains ? Interesting that you have 'good control' but can still experience complications as in background retinopathy.

No the results explicitly state that there are “no signs of diabetic retinopathy”.

When I was diagnosed, it was pretty much expected that all T1s would have some damage to their sight after around 20 years.

I’m a relative newbie compared to some on the forum, and have only racked up 33 and a bit years so far

 

[Eddy Edson]

The specificity for DR diagnosis of the 2-field fundus cameras approved for NHS screening seems to be about 70%, so false positives presumably will be pretty common, which means it shouldn't be too surprising to see things bouncing around between "DR" and "no DR" from year to year, in somebody without DR.

Because the treatment protocol for non-proliferative DR is usually just "yearly monitoring" I guess this isn't an issue.

More importantly, sensitivity seems to be around 100%, so minimal false negatives.

See eg https://pubmed.ncbi.nlm.nih.gov/31668742/

FWIW, I doubt that actual reversal of DR is at all common?

Also FWIW, I get an OCT exam (more accurate) every few months and it never finds any reversal (but also no progression) of my background DR.