Retinopathy

[sam98]

Hi,

I have type 1 and found out yesterday I have background retinopathy and was not expecting it. I've been trying really hard to control my glucose and have brought my HBA1C down considerably over the years. I've been having so many problems with my sugar over the past couple of years and nothing the specialists suggest seem to work for very long, two or three weeks max. Before the pandemic I had to cancel my gym membership as every time I did any form of exercise I went low and ended up eating the same amount, if not more, calories that I had just worked off to sort my sugar out.

Does anyone else have this problem? Are there many people with diabetes that have this and have prevented it from getting worse?

Thanks

 

[mikeyB]

Background retinopathy is the most minimal change in the retina. It is reversible with improved diabetic control. It’s more a warning sign that control is not good enough. Do you use the Libre system or similar? If you don’t, ask your GP. Then you can see how your BG changes in the times you don’t do a test, such as through the night. You may find a few shocks.

 

[sam98]

Background retinopathy is the most minimal change in the retina. It is reversible with improved diabetic control. It’s more a warning sign that control is not good enough. Do you use the Libre system or similar? If you don’t, ask your GP. Then you can see how your BG changes in the times you don’t do a test, such as through the night. You may find a few shocks.

Thanks Mike. Glad to know it's reversible.

I do use the Libre system and it has helped to some degree. Mostly trying to find a way of helping it in the long run as most things tried in the past haven't worked for very long.

 

[helli]

@sam98 how do you manage your diabetes? Do you have a pump or are you injecting? If injecting, what insulin are you using?
What techniques have you tried to avoid lows when exercising?

Sorry for all the questions. The more we know, the more we can suggest.
I too experienced lows when exercising but I am stubborn and found a number of techniques to help.
Moving to a pump was the best for me to avoid the lows as I completely suspend my basal when I am running or cycling (although climbing needs an increase).

As for the background retinopathy, I am a living breathing, talking, running, cycling, climbing example of someone who had it and then reversed it.

 

[cameron]

How long have you had diabetes for? I believe it's quite normal for there to be signs of background retinopathy in type 1 diabetes, especially after about 15-20 years. The most important thing you can do is keep attending your annual eye checks so any further changes can be nipped in the bud. With good diabetes control there's a good chance you'll avoid any more changes anyway, so I'm glad you're using this as an opportunity to make some improvements. 🙂

 

[sam98]

@sam98 how do you manage your diabetes? Do you have a pump or are you injecting? If injecting, what insulin are you using?
What techniques have you tried to avoid lows when exercising?

Sorry for all the questions. The more we know, the more we can suggest.
I too experienced lows when exercising but I am stubborn and found a number of techniques to help.
Moving to a pump was the best for me to avoid the lows as I completely suspend my basal when I am running or cycling (although climbing needs an increase).

As for the background retinopathy, I am a living breathing, talking, running, cycling, climbing example of someone who had it and then reversed it.

I'm injecting at the moment but am on the waiting list for a pump. I'm on Novorapid and Tresiba.

I've previously tried the exercise setting on my blood test machine on the meal I have an hour or two before going to the gym but that didn't help much, it only delayed the low.

I'm mostly trying to be on top of carb counting at the moment which I think I'm getting better at. I also make everything from scratch so I can miniseries the amount of fat in a meal and try and pick healthier options such as reduced fat beef bits or mince. I don't eat meat too much either.

I've been thinking of going back to having 1 meal a day with no carbs.

 

[sam98]

How long have you had diabetes for? I believe it's quite normal for there to be signs of background retinopathy in type 1 diabetes, especially after about 15-20 years. The most important thing you can do is keep attending your annual eye checks so any further changes can be nipped in the bud. With good diabetes control there's a good chance you'll avoid any more changes anyway, so I'm glad you're using this as an opportunity to make some improvements. 🙂

I think I've had it for 12 or 13 years now.

 

[mark king]

Hello @sam98
I go regularly for my diabetic eye check ups at the Hospital. They had found that i was suffering from small leakages of the blood vessels in the eye which if left alone would cause blocking of the lens.
They gave me laser treatment to cauterise the leaks which made no noticeable difference to my vision but they said it had stopped the bleeds.
Then a year or so later I went for some replacement glasses but the optician said I needed to have cataract treatment before any new glasses were obtained as there had been some deterioration to each eye.
He didn't confirm it was due to my diabetes and as I'm 76 I put it down to age.
When I went into hospital to be checked they said I was marginal but they would remove and replace my cataract lenses.
I've now had both eyes done the 2nd one on Monday just gone and I now find that my reading glasses are no longer needed.
I must say the improvement in clarity and vision is fantastic, a job well done.
It is not the most pleasant of experiences but there was no pain and it only takes about 15 to 20 minutes to complete per eye. They operate on 1 eye at a time with about a 2 - 3 weeks gap between ops.

So there are treatments available but far better to not need to have treatments if you can avoid them and certainly keeping good diabetic control will help.

Best

 

[Bruce Stephens]

I think I've had it for 12 or 13 years now.

I've had it (background retinopathy) for at least that. Probably much longer (the new digital cameras can detect far smaller things than they could do previously). It fluctuates a bit year to year but apart from one occasion it's always been with 12 monthly appointments so I've not been that worried. (Once 6 months but that was after a brain tumour, so that was understandable.)

 

[sam98]

Thank you all for your replies. Feeling a lot better about it now.

 

[Lucyr]

I got background retinopathy because of improving my blood sugars! I had a worried conversation about it with the consultant which was quite reassuring, that most people have it after 10 years or so but it doesn’t always progress and can heal if your bgs are stable.

 

[trophywench]

I've had background retinopathy since the mid 1990s, nearly 25 years after my diabetes diagnosis, first in the left eye then about 15/16 years ago the right eye joined the party. Since then I've had cataract replacement lenses sorted in both eyes with no adverse effect either to my actual sight or to the background retinopathy. Never required any treatment whatsoever with regard to the retinopathy. My eyes are now 49 years older than my diabetes. And I'm now 71.

The photos still show the original self healed bit of leakage in the left eye - nowhere near the sight of the eye and hence may not have even been detected at all had my ordinary optician not had good eyesight - because when I saw my D consultant 2 months after my optician told me I had R (they hadn't invented the cameras then so the D consultant just peered in your eyeballs with an opthalmoscope with the room lights turned off and telling you to stare at one corner of the ceiling while he stood so close to you he entirely blocked your view anyway) Consultant said 'Well all I can say is that Mr J must have better eyesight than me then, Jenny cos I can't see it myself!' - I replied that I was glad about that, TBH, Dr N ! (cos if your optician can't actually see very well for starters, it's not exactly comforting, really, is it?)