Background retinopathy

[New-journey]

Hi all, I have been away from some time but have been doing well. HbA1c always around 34 and not many hypos. I am coming up to five years and just got a letter today saying I have some background retinopathy, first time. I am panicking hugely as they told me to reduce my levels which is impossible or I might risk going blind in the future. But they will see me in one year so not too urgent.. There is no dsn at my surgery at the moment and don't know who to speak to. Then I remembered how wonderful and experienced you all are! I hope everyone is doing well.

 

[Pine Marten]

Hi @New-journey, I got one of those letters once, although every other time (including last year - this year's appointment was cancelled) the letters have said everything was fine. I don't think it's much to worry about, to be honest. I think @Northerner has had these letters too and could comment 🙂

 

[Bruce Stephens]

I don't think it's much to worry about, to be honest. I think @Northerner has had these letters too and could comment

I've had background retinopathy for decades now. (It used to be regarded as inevitable, I think.) Apart from BG control I think the other major factor is blood pressure.

 

[Ditto]

I thought you could eat what you liked if you're type 1? So long as you do the thing. How do you reduce your levels then, it must be very hard to do. Type 1 is very hard. I can't even manage type 2. I hope you can get a handle on it, going blind is my biggest fear. They said I was fine at my review a month ago, I was so surprised, I was expecting bad news as I'm always blurry.

 

[New-journey]

I thought you could eat what you liked if you're type 1? So long as you do the thing. How do you reduce your levels then, it must be very hard to do. Type 1 is very hard. I can't even manage type 2. I hope you can get a handle on it, going blind is my biggest fear. They said I was fine at my review a month ago, I was so surprised, I was expecting bad news as I'm always blurry.

So happy you are doing ok, it is such an awful fear isn't it!

 

[New-journey]

Hi @New-journey, I got one of those letters once, although every other time (including last year - this year's appointment was cancelled) the letters have said everything was fine. I don't think it's much to worry about, to be honest. I think @Northerner has had these letters too and could comment 🙂

That is very uplifting to hear, thanks

 

[New-journey]

I've had background retinopathy for decades now. (It used to be regarded as inevitable, I think.) Apart from BG control I think the other major factor is blood pressure.

Thanks, that is helpful to know. I am going to monitor my blood pressure at home. usually ok except when I have it taken at the surgery!

 

[trophywench]

My BP does that t oo! - though I have to say it hadn't used to, only since I've needed to take BP tablets that it's done that. Whenever it was I had my last D review at the GP surgery it was so ruddy low it was obviously wrong, but fortunately I'd had it taken not ever so long previously so she used that one!

Background retinopathy - had it since the mid 1990s. It's still there. Haven't had a photo this year but had a letter to say as my eyes haven't changed in living memory they wouldn't bother this year. Suits me. Did have photos done with my normal eye test (so no drops) a few weeks ago and she said Oh, there's the sign of a very old bleed at the back of one eye so I asked is it my left eye? Yes - to which I replied That's exactly what my optician saw in his opthalmoscope in 1995 then!

Since then I've had a ruddy great cyst removed from my right lower eyelid and both cataracts done. Nob all else.

Seriously - be concerned, yes. Panic - No!

Was your A1c a typo for 54? If so that is tad higher than they recommend these days but having said that mine is always in the low 50s too and I haven't dropped dead yet either.

 

[Pumper_Sue]

Hi all, I have been away from some time but have been doing well. HbA1c always around 34 and not many hypos. I am coming up to five years and just got a letter today saying I have some background retinopathy, first time. I am panicking hugely as they told me to reduce my levels which is impossible or I might risk going blind in the future. But they will see me in one year so not too urgent.. There is no dsn at my surgery at the moment and don't know who to speak to. Then I remembered how wonderful and experienced you all are! I hope everyone is doing well.

Firstly don't panic (hard I know)
It's a bog standard letter sent out when BGR is found. They have no idea about your level of control so ignore that bit as you are doing very well.
The big pointer is that they don't want to see you for a year. If their was a problem you would have been seen very quickly.

 

[Northerner]

Hi all, I have been away from some time but have been doing well. HbA1c always around 34 and not many hypos. I am coming up to five years and just got a letter today saying I have some background retinopathy, first time. I am panicking hugely as they told me to reduce my levels which is impossible or I might risk going blind in the future. But they will see me in one year so not too urgent.. There is no dsn at my surgery at the moment and don't know who to speak to. Then I remembered how wonderful and experienced you all are! I hope everyone is doing well.

Sigh! It does annoy me how they upset and worry people unnecessarily with these letters and the poor wording/explanation of what it means It is most likely a temporary situation, won't affect your sight and may or may not be present at your next appointment, so please don't be concerned 🙂 There are many more stages before any of this becomes sight-threatening, and there are many excellent treatments to prevent that in any event 🙂 An appointment 12 months away means there is no cause for concern, just alerting you to the findings 🙂 It sounds like you are managing your diabetes well, so I would say to continue as you are. Probably the only advice would be to try and maintain steady levels that do not swing between extremes, should that be the case 🙂

Good to hear from you @New-journey 🙂

 

[Northerner]

Just another thing - do you use a Freestyle Libre? If not, do ask for one, they are much easier to get on prescription these days, you just need to be able to show that you do 8+ finger pricks a day. They are excellent for warning you of potential hypos - I have virtually eliminated them thanks to the Libre, and I also have much smoother control (as I suggested might be helpful in my previous post). The Libre shows very clearly when you spike after eating and can therefore help you to time your insulin to reduce the possibility 🙂

 

[helli]

Each year I seem to alternate between background retinopathy and none. My diabetes management Hb1AC around 48) doesn't change and my blood pressure is not high.
Some people are more susceptible to it but the testing is not perfect - a small harmless shadow on your retina maybe incorrectly interpreted.
The other thing I have noticed is the letter is the same for all. If it was serious you would need treatment. As this is not suggested, carry on doing what you are doing and don't worry.

 

[Bruce Stephens]

Some people are more susceptible to it but the testing is not perfect - a small harmless shadow on your retina maybe incorrectly interpreted.
The other thing I have noticed is the letter is the same for all. If it was serious you would need treatment. As this is not suggested, carry on doing what you are doing and don't worry.

The testing nowadays is pretty good. A few years ago it was usual for them to show the photos and they're really high resolution so I'm inclined to trust them. But yes, the details of my letter (where they give the detailed result) varies from year to year, and I mostly just check that they want me in 12 months as usual. (Obviously I'm still trying to keep my BG and BP in range but I'd do that regardless.)

 

[helli]

A few years ago it was usual for them to show the photos and they're really high resolution so I'm inclined to trust them.

Yeah, I got a copy of my photos one year. They are pretty cool but I decided not to use them as my screensaver as they looked a little gory ... once you realised they were not a pair breasts!

At the time, I was told they were checked by a person not a machine so it was possible for one person to interpret a shadow as retinopathy one year and, a year later, the checker would interpret it differently. But, as I say, that was a few years ago and I would like to believe technology has progressed in the last 5 to 10 years.

Like you, my concern is when they next want to see me and continue to keep an eye on my BG if it is not within the next 12 months (it never has been).
I don't check my BP as often but never had a problem and am pretty active so currently not concerned.

 

[Bruce Stephens]

Like you, my concern is when they next want to see me and continue to keep an eye on my BG if it is not within the next 12 months (it never has been).

It's only happened one year for me (just wanted a 6 month review too), but I'd had a (benign) brain tumour so various things were out of whack at that time.

 

[New-journey]

Firstly don't panic (hard I know)
It's a bog standard letter sent out when BGR is found. They have no idea about your level of control so ignore that bit as you are doing very well.
The big pointer is that they don't want to see you for a year. If their was a problem you would have been seen very quickly.

Thanks Sue, you always have a way of speaking such sense! Feeling very relieved and slightly angry that the standard letter is so alarming. .

 

[New-journey]

Sigh! It does annoy me how they upset and worry people unnecessarily with these letters and the poor wording/explanation of what it means It is most likely a temporary situation, won't affect your sight and may or may not be present at your next appointment, so please don't be concerned 🙂 There are many more stages before any of this becomes sight-threatening, and there are many excellent treatments to prevent that in any event 🙂 An appointment 12 months away means there is no cause for concern, just alerting you to the findings 🙂 It sounds like you are managing your diabetes well, so I would say to continue as you are. Probably the only advice would be to try and maintain steady levels that do not swing between extremes, should that be the case 🙂

Good to hear from you @New-journey 🙂

Thanks so much and feeling much better. I knew you would have much wisdom to share and great to know there are excellent treatments. I am now not going to be concerned and will carry on with managing my type one as well as I can.
Thanks for the positive welcome back.

 

[New-journey]

Just another thing - do you use a Freestyle Libre? If not, do ask for one, they are much easier to get on prescription these days, you just need to be able to show that you do 8+ finger pricks a day. They are excellent for warning you of potential hypos - I have virtually eliminated them thanks to the Libre, and I also have much smoother control (as I suggested might be helpful in my previous post). The Libre shows very clearly when you spike after eating and can therefore help you to time your insulin to reduce the possibility 🙂

Yes, and I love my sensor, and have very smooth control with most days not too high, and not too low, just in the middle! Of course the occasional random high like everyone but normally 85% in target and no bad hypos. My new consultant thinks I am a unusual type one as insulin needs still quite low and thinks I still produce insulin but then there are many of us unusual ones! 🙂

 

[New-journey]

Yeah, I got a copy of my photos one year. They are pretty cool but I decided not to use them as my screensaver as they looked a little gory ... once you realised they were not a pair breasts!

At the time, I was told they were checked by a person not a machine so it was possible for one person to interpret a shadow as retinopathy one year and, a year later, the checker would interpret it differently. But, as I say, that was a few years ago and I would like to believe technology has progressed in the last 5 to 10 years.

Like you, my concern is when they next want to see me and continue to keep an eye on my BG if it is not within the next 12 months (it never has been).
I don't check my BP as often but never had a problem and am pretty active so currently not concerned.

So interesting, thanks for sharing your experience and like you I will not be concerned now. The woman who did the test said everything was perfect so I was surprised when the letter came.

 

[New-journey]

It's only happened one year for me (just wanted a 6 month review too), but I'd had a (benign) brain tumour so various things were out of whack at that time.

Oh Gosh, hope everything is fine now.