Signs of diabetic maculopathy found in recent eye screening

[kaya1991]

Long-time lurker here, hello!

I'm a 32-year-old woman who was diagnosed with type 1 back in 2012 at the grand old age of 20. My management was terrible at first, but has improved a lot since I got the Libre - not perfect by any means, but much better than it was.

I've had background retinopathy for the last 4-5 years, and on Monday I had my most recent eye screening. I got the results yesterday which said they found signs of diabetic maculopathy, and I've been called in for an OCT next month to check it out.

What's confused me, though, is that I had an OCT last year that came back clear, and I had my routine eye test with an optometrist last week where she also didn't see anything concerning. I honestly don't understand how I've gone from 'nothing to worry about' to 'we've seen signs of maculopathy' within literally days.

I had diabetic cataracts removed within my first year post-diagnosis (doctors said it was because my blood sugars decreased dramatically so quickly) and haven't had any issues since, so this has really scared me.

I struggle with severe anxiety, so naturally this has sent me into a real tailspin. I'd love some reassurance if possible that this letter isn't the start of the end for my vision, and I'd love to hear what other people's experiences were after receiving this letter. Is it sometimes a false positive? Are they just being extra cautious? Is it likely I'll need treatment right away? Any and all experiences are welcome, but positive ones would be particularly welcome at the moment so I don't spend the next month beside myself with worry. Thanks!

 

[Juicyj]

Hello Kaya,

Sorry I don't have any knowledge of this to add anything, except I am sure someone can respond soon and hope you're ok, sending you a hug x

 

[kaya1991]

Hello Kaya,

Sorry I don't have any knowledge of this to add anything, except I am sure someone can respond soon and hope you're ok, sending you a hug x

Thanks Juicy

My mind is in complete overdrive at the moment - it feels so out of the blue because I JUST had an eye test where nothing was found! I'm hoping that means that whatever they've found is very minor, but I still have a full month of waiting and worrying.

Doesn't help that I'm pretty squeamish about eye things too, so the idea of eye injections turns my stomach!

 

[Rokaab]

I know a few years ago I got a similar letter and omg I was in a hell of a panic as well.
It may just be that stuff like that cannot be seen at the regular optician thus them not seeing it.

As for me, I got sent to more often checks at the actual hospital for different screening that I normally get at the yearly check (which are at an eye screening clinic not at the hospital), but said maculopathy disappeared in about a year, it was definitely there for a while but sorted itself out (phew!)

And yes, I do have background retinopathy - probably for a good decade or two - but its staying as 'background' and whilst not getting better is not getting worse so it fine

 

[kaya1991]

I know a few years ago I got a similar letter and omg I was in a hell of a panic as well.
It may just be that stuff like that cannot be seen at the regular optician thus them not seeing it.

As for me, I got sent to more often checks at the actual hospital for different screening that I normally get at the yearly check (which are at an eye screening clinic not at the hospital), but said maculopathy disappeared in about a year, it was definitely there for a while but sorted itself out (phew!)

And yes, I do have background retinopathy - probably for a good decade or two - but its staying as 'background' and whilst not getting better is not getting worse so it fine

Thanks Rokaab, this is hugely reassuring!

That's what I'm hoping is the case for me too - I feel like if there was anything really obvious and awful it would've been spotted by the optician, so I can only assume it's something pretty minor?

I'd also be so happy if the maculopathy sorted itself out - obviously I'll now be taking extra care to keep my blood sugar in check, but even the thought of the treatment is really scary to me, so keeping everything crossed it goes away on its own.

 

[esussex97]

I've had Type 1 diabetes for almost 25 years, I was 2 years old when diagnosed, and have had background retinopathy for probably 15. I received this letter a couple years back saying they had detected maculopathy and I went for further screenings, luckily that time it was a false alarm and I didn't require any further investigation. However I have received the letter again recently and am waiting for more tests.

Loss of eyesight is possibly the scariest complication for me and I am praying that it isn't anything too serious. Any updates on your situation?

 

[Mark the Spark]

I have been T1 for 46 years.
Retinopathy started about 20 years ago.
I have had laser treatment to both eyes approximately 10 years ago.
About 2 years ago they picked up diabetic maculopathy which appears to be fairly stable , currently. I am now screened every 4 months .
Apart from my teenage years my control is generally very good.
The only positive thing I can offer is , a previous consultant ( who I respected ) informed me that the university hospital where he/ we are based have appx 20,000 diabetics on the books and he could recall only 2 going blind through diabetic complications.

 

[esussex97]

I have been T1 for 46 years.
Retinopathy started about 20 years ago.
I have had laser treatment to both eyes approximately 10 years ago.
About 2 years ago they picked up diabetic maculopathy which appears to be fairly stable , currently. I am now screened every 4 months .
Apart from my teenage years my control is generally very good.
The only positive thing I can offer is , a previous consultant ( who I respected ) informed me that the university hospital where he/ we are based have appx 20,000 diabetics on the books and he could recall only 2 going blind through diabetic complications.

That’s fairly reassuring, so I’m guessing that these days with the treatments we have now and timely diagnosis the likelihood of blindness is extremely low then.

Thanks for the info

 

[Jaylee]

That’s fairly reassuring, so I’m guessing that these days with the treatments we have now and timely diagnosis the likelihood of blindness is extremely low then.

Thanks for the info

If it’s any consolation to you.

I had “macula oedema” diagnosed a number of years ago. (Now named “diabetic maculopathy.”)
I did have treatment as a course of ant VEGF jabs.
The outcome for the last 3 years is stable on regular checks with no further need for treatment. & I still have a driving licence…

 

[Mark the Spark]

That’s fairly reassuring, so I’m guessing that these days with the treatments we have now and timely diagnosis the likelihood of blindness is extremely low then.

Thanks for the info

That's my thinking..!
All the best

 

[Nicola M]

That’s fairly reassuring, so I’m guessing that these days with the treatments we have now and timely diagnosis the likelihood of blindness is extremely low then.

Thanks for the info

I have Maculopathy (started in both eyes) when my HbA1c dropped from 78 -> 38. A significant drop in HbA1c can unfortunately also cause Retinopathy to develop. I was diagnosed in June 2022. As of November 2023 (don't have my results from March 2024 yet!!) the maculopathy has gone in my left eye although some background changes still do exist and unfortunately, it is still present in my right eye but there have been no significant changes to it and it is stable, it hasn't got worse and at present, I don't need treatment. I think with the advances in technology these days (think insulin pumps and cgms) the likelihood of it ever being serious is very slim as you can keep on top of your diabetes control a lot better. I was also diagnosed at 1 years old and I'm 27 now! so fairly similar age to yourself.

 

[Cumberland]

Long-time lurker here, hello!

I'm a 32-year-old woman who was diagnosed with type 1 back in 2012 at the grand old age of 20. My management was terrible at first, but has improved a lot since I got the Libre - not perfect by any means, but much better than it was.

I've had background retinopathy for the last 4-5 years, and on Monday I had my most recent eye screening. I got the results yesterday which said they found signs of diabetic maculopathy, and I've been called in for an OCT next month to check it out.

What's confused me, though, is that I had an OCT last year that came back clear, and I had my routine eye test with an optometrist last week where she also didn't see anything concerning. I honestly don't understand how I've gone from 'nothing to worry about' to 'we've seen signs of maculopathy' within literally days.

I had diabetic cataracts removed within my first year post-diagnosis (doctors said it was because my blood sugars decreased dramatically so quickly) and haven't had any issues since, so this has really scared me.

I struggle with severe anxiety, so naturally this has sent me into a real tailspin. I'd love some reassurance if possible that this letter isn't the start of the end for my vision, and I'd love to hear what other people's experiences were after receiving this letter. Is it sometimes a false positive? Are they just being extra cautious? Is it likely I'll need treatment right away? Any and all experiences are welcome, but positive ones would be particularly welcome at the moment so I don't spend the next month beside myself with worry. Thanks!

Finding myself in the same position as yourself

Last eye screen in January - got a letter with appointment for next month as they’d detected maculopathy

Retinopathy for years and had both eyes done for cataracts

It’s a case of wait and see until after next appointment

Good luck for you going forward