Retinopathy Diagnosis Worry

[FieldingMellish]

Hello.

My daughter, aged 22, has been Type 1 Diabetic for around 6 years. She has always had good control, and is on a pump. She had an eye test and got a letter from the NHS saying she had some 'changes' in her eyesight, that it was not a cause for "immediate worry" and that she should have an eye scan again in 12 months.

When we phoned the NHS they said these "changes" were signs of background Retinopathy. The optician who did the original test detected nothing, but the NHS did detect something. Apparently in these cases they then usually get a 3rd person's opinion before posting a letter but for some reason in this case they did not. either way, we had the scans looked at by an independent eye specialist and they confirmed some signs of background Retinopathy are present.

So how worried should we be? Our daughter, despite being diagnosed when a teenager, has always been very vigilant with her control etc and has usually had an HbA1c reading of around 7. We were very surprised that she could have developed these symptoms so quickly, and with her doing everything she could to keep good control of her diabetes.

Any advice welcome on this.

Thanks.

 

[Sid Bonkers]

Background retinopathy is just that, it is a term used to identify a slight problem/bleed and can be anything from just one spot/bleed which I had on my first scan. The 12 monthly scan is normal for every diabetic and nothing to worry about.

If your daughter has good control she may find that next year her scan may be clear although there is no guarantee with these things but the fact that it has been picked up and will be monitored is a good thing, yes?

Try to be positive about this and speak with your doctor if you are still concerned but really 'background' is usually fairly minor

 

[Snodger]

Yes I agree with Sid.
It does make me angry the way they bandy about 'background retinopathy' in letters and info without thinking of the effect it has on people. Like most of us, I have a terror of anything going wrong with my eyes, and was devastated when my doc found microaneurysms - like your daughter I felt I'd been trying my best to do everything right. Thank goodness, my doc was excellent, and instead of telling me in a letter he delivered the news in person, and was able to reassure me of the following things, which I pass on to you:
a) non-urgent 'changes' in the eye usually does mean microaneurysms, (tiny, tiny bleeds) which formally counts as 'retinopathy' but really isn't a scary thing at all; even non-diabetics get them
b) they quite often go away by themselves, as Sid says. Mine did.
c) because we get free eye screening every year, we have the best possible chance of catching any problems early enough to prevent serious damage
d) even if her eyes do get worse in the future - and I bet they don't - the eye treatments that have been developed nowadays are stunningly good. We aren't talking about the bad old days any more; we're talking about people being returned to excellent sight.

I'm not saying be complacent, of course we all need eye checks every year. I'm just saying, please don't let the crude, insensitive NHS information system scare you.

 

[Sjbalswin147]

Ditto all comments just made and yep been their. I would just add that I was also told it is hard to restore sight but further loss can be prevented. So keep getting reviewed, maintain good levels and don't worry.