Diabetic Retinopathy

[John Johnston]

I have just received a letter following eye screening to say I have diabetic retinopathy, there is very little information on the letter which has left me feeling quite worried. It says I do not need treatment at this stage though. It seems a terrible way to let me know with no info on the stage it is at! I was always brought in to be told the results were fine so I think it would have been better to have someone explain this to me rather than by a letter.

 

[Ally beetle]

Does it state it is background retinopathy as I have had this told to me ever since I was diagnosed and it can be just the opinion of the person who reviews the image it may be very mild but get checked out every year just to keep a check on it

 

[Matt Cycle]

Hi John. I'm assuming you've got the background retinopathy letter. I agree it's an insensitive way to tell people with a letter and a leaflet and my optician agreed. I got the letter about 5 or so years ago and after 'merrily' going along for 25 years with T1 and then receiving that I was pretty upset. Improved control (do they think we don't control it well all the time on purpose) can help it but I've had the same letter every time since - 'nothing further needed at this stage, see you in 12 months.' Obviously it still concerns me but knowing what I know now it's less of a shock when I get it.

 

[John Johnston]

It just says you do have diabetic retinopathy, it doesn't mention background. I read it first as you don't have ... but when reading on a bit had to double check and got a shock! I have been struggling with my eyesight a bit as I need glasses but trying to hold off lol. I guess that wouldn't do me any favours either squinting all the time! Thanks for the replies btw.

 

[Northerner]

It just says you do have diabetic retinopathy, it doesn't mention background. I read it first as you don't have ... but when reading on a bit had to double check and got a shock! I have been struggling with my eyesight a bit as I need glasses but trying to hold off lol. I guess that wouldn't do me any favours either squinting all the time! Thanks for the replies btw.

Hi John, the letter is poorly worded, and practically everyone who gets it reacts as you have done. Don't worry - if the letter says there is no need for any further action, other than attending your next check, then this will have no impact on your sight. This early stage of retinopathy can appear and disappear, or remain completely stable for years. Just concentrate on trying to keep good control of your blood sugar levels, blood pressure and cholesterol levels. If you smoke, then consider stopping, as that will not help.

 

[everydayupsanddowns]

Sorry you’ve had *that* letter @John Johnston - as others have said, it worries and upsets most of us that have received it.

I’ve had a couple of them over the last 10 years, and currently get the ‘all clear’ ones so try not to worry, and focus more on trying to reduce your glucose variability and increase your time in range as much as you can.

 

[Pumper_Sue]

It just says you do have diabetic retinopathy, it doesn't mention background. I read it first as you don't have ... but when reading on a bit had to double check and got a shock! I have been struggling with my eyesight a bit as I need glasses but trying to hold off lol. I guess that wouldn't do me any favours either squinting all the time! Thanks for the replies btw.

Hi John,
does the letter also say next appointment in a years time or is there a hospital referral? If it's a year no worries just make sure you do your best with blood glucose control and BP.

 

[John Johnston]

Thanks for the replies folks, my control was quite good and very easy for 9 years but for the past 2 - 3 years not so good, just goes to show! I do try to keep good control but have struggled a bit, I am doing the 4 day education course in January so I hope that will get me back on track. Oh and I stopped smoking 9 years ago!
Sue, the letter says I will be called back in a year just so I guess that's good, I've made an appointment with my GP in the meantime just for some reassurance.

 

[trophywench]

For the first time ever I've had a letter to say my eyes have absolutely no 'changes'. Bearing in mind they were first observed in 1995 I'm amazed, to say the very least!