Retinopathy results

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SilentAssassin1642

SilentAssassin1642

Well-Known Member
Relationship to Diabetes
Type 1
Just got a parcel from my parents with various birthday things in, my accu chek computer software and a few letters.

One of these letters was from Bath hospital about the retinopathy test I had a few weeks ago:

"we are pleased to tell you that only mild diabetic changes were seen, which do not require any treatment...it is important to come for your next test so that we can continue to monitor any changes...'

I read the leaflet that comes with it - its called background retinopathy, small changes which look like tiny red dots, which in time without being checked can lead to greater issues such as constricted blood vessels.

Now I'm worried despite the fact they said I don't need treatment *yet*. I'm well controlled (apart from that short stint where I refused to do anything) but even then I wasn't that bad. The leaflet says that people who have had diabetes for a long time are at risk, is it because of this do you think?

I'm worried. Thank you for this wonderful birthday present hospital people 😡
 
From listening to others, mild changes is nothing to worry about as our eyes change anyway. As I have got older my eyes have changed and even with my glasses on, and a nice bright light I still sometimes need a magnifying glass to help me read some things.

If you are realy worried have a chat to the doctor or an optician who will be able to re-assure you. At least you are being monitored, many people don't get that
 
Sorry to hear about your results.

Retinopathy is something that develops over a long period of time. Athough it's usually associated with poor control, it can happen to anyone. I'm not sure if it can be reversed as some complications can, but you can help to prevent it getting any worse by maintaining good control.

If it does get worse, it can be treated with lasers, but hopefully it won't come to that.

The thing is that it's been caught early and can be treated if needed, which is the reason they do the scans. Some people (especially type 2s) don't get identified early enough, which can mean major sight problems.

I think it's a acase now of being extra vigilant with the control.
 
i just dont understand :( ok, ive had diabetes for going on 14 years but thats just it...my control isnt bad. I don't like this feeling one little bit.

I have an appointment with the GP later, so I'm going to take my letter with me and ask if she knows anything or whatever. If not, I'll phone my DSN I think.

What a great surprise on my birthday eh? Its really worrying. I dont like it :(
 
Hi Sam, I know it's difficult, but do try not to worry. As they say, it does not need treatment and they are aware of it so this is all good. To my knowledge, keeping good control (HbA1c, blood pressure and cholesterol levels) is the best way of slowing or preventing progression.

There is nothing you can (or need to) do about it today, so please try and enjoy your special day!
 
Hi Sam...

Please try not to worry about the results...as the letter says no treatment is needed etc....Just keep up the good work and control you have over your diabetes...🙂

Dont let the letter spoil your special day..x

Heidi
xx🙂
 
I'm in exactly the same boat as you.

I was told I had retinopathy, or early signs of it about a year ago (I was diagnosed with diabetes in 1993, aged 11), although unlike you, I didn't get a leaflet explaining what it was, causes, treatments etc. So I had to do my own research.

I've just been for my yearly eye screening, so await(dread) the results coming soon.

It is scary and upsetting.

USP
x
 
Hi Sam,

I know it sounds bad, but I really wouldn't worry about it. I've been told by various doctors that you would expect to see background retinopathy in long term diabetics. I've had the same thing as you for my last few checks, and I've always been told that as long as I try to keep my diabetes under control as best I can, it's not really a problem. From what I understand, there are always small changes going on at the back of your eye, with some spots clearing and other ones developing. The important thing is to get it checked regularly, and they'll pick up anything that's getting worse long before it's too late.

Relax and enjoy you birthday things! 🙂
 
How come the hospital are sending this information by letter? Would they not tell you when they were photographing your eyes if they found something? I would hope they would. It must be horrible to receive this information in a letter, especially given the cold impersonal tone hospitals use in their letters.

Hope you enjoy your birthday, don't let this ruin it for you.
 
Lizzie said:
How come the hospital are sending this information by letter? Would they not tell you when they were photographing your eyes if they found something? I would hope they would. It must be horrible to receive this information in a letter, especially given the cold impersonal tone hospitals use in their letters.

Hope you enjoy your birthday, don't let this ruin it for you.
Click to expand...

For me I go to the opticians to get my retinal scans. The person doing the scans is unable to tell if there are any changes because the pictures are sent back to the hospital for further checks and to be compared with the last pictures done. If there are any changes the hospital will then write to you.

It is a standard letter, and as such is not very reassuring. It is done to keep costs down, but doesn't stop us worrying if it is not quite what we expected to hear.

As others have said our eyes change all the time, and we are being checked on a regular basis, so please enjoy your special day.
 
sorry to hear about your results. It doesn't seem very fair does it when you feel like you've done your bit in controlling your diabetes well and still get the start of complications. i felt pretty angry and upset last year when I was told I have neuropathy.

I think it would be a good idea next week to speak to your DSN if it will give you some reassurance, but I know you find her a bit cold.

enjoy your birthday
 
For lots of information on diabetic retinopathy then www.diabeticretinopathy.org.uk is a great site even tho a bit scary in parts.

In terms of taking control, it recommends

- exercise 60-120 minutes per day
- blood pressure 130 or below
- HbA1c: 6.5-7.5%
- fasting pre meal blood glucose: 4-7
- healthy diet and avoid obesity

plus points out that

- 20 cigarettes a day makes retinopathy 400% worse
- each unit of alcohol gives a 2mmHg rise in blood pressure
 
Caroline said:
For me I go to the opticians to get my retinal scans. The person doing the scans is unable to tell if there are any changes because the pictures are sent back to the hospital for further checks and to be compared with the last pictures done. If there are any changes the hospital will then write to you.
.
Click to expand...

That's interesting. I would have thought the hospital would want to discuss any potentially distressing results with you face to face. I get my photos done at the hospital and so I can ask the doctor if they have found anything.
 
please dnt let the letter ruin your special day sam t does say after all no worries x i know its easy to say and harder to do but stay chipper x
 
thank you everyone. I had a bit of a cry over it earlier. Its still niggling me but what you've said has made me feel a tad better.

In a way, I'm glad I'm not the only one in the same boat. That may sound harsh I know, but in a way its reassuring.

I took the letter into the GP today and she looked at it, and I tried to explain why i felt so down about it and ended up bursting into tears. Her response wasn't great. In which case, I think I'll phone one of the diabetic team on monday and have a chat with them.

I'm probably making too much of a big deal out of it. After all its 'mild' and 'doesn't require treatment', but its still a bit rubbish y'know?

Gunna just forget about it for today (or well, i would if my left eye would stop twitching HA, but I think thats tiredness!) and enjoy my birthday. Today is treat day, we have cake and beer. Plus the sugars have been gooooood today.
 
Don't forget to take account of the beer when you're calculating your insulin! I don't take extra for the alcohol carbs, but do make sure I have a snack before bed and reduce my evening meal insulin. Have a great time!:D
 
Hi Salmonpuff,

Hope you still managed to enjoy your birthday!

I've had diabetes 30+ yrs now and had background retinopathy (the little "dots" in the photo) for years, despite ok control latterly (I can't comment on the early years, I was too young to remember!). I am pretty certain that in my case the tipping point into proliferative retinopathy (when they start wielding lasers!) was pregnacy & in particular getting severe pre eclampsia...without the massive BPs I had I suspect the damage / extra blood vessels would not have happened, or at least might have taken a while longer. There is a known link between pregnancy & changes in the eyes, which is why they check your eyes more often during pregnancy.

I guess what I'm trying to say here is that I don't think that if you're well controlled your eye condition will go from the harmless dots into anything worse any time soon 🙂 ...not sure if that helps! 😱

re the "worst case" scenario...when I was told I'd got proliferative retinopathy & they'd need to be let loose with the lasers, I was devastated...but in the event, the ophthalmologist is a switched on guy & got stuck in early to minimise any damage to my vision - I have been able to retain my driving licence and the only difference I have noticed is slightly worse night vision. The lasering itself was fine (I'd convinced myself it would be more like a scene from Goldfinger lol! 😱) uncomfortable yes, agony, no! I did feel like a hungover mole for a week or two though! 😉

Anyway, hope that puts your mind at rest to some degree.

All the best,

T.
 
Hey Salmon

Hope you're feeling better now, anything about the eyes and it put the blanks up me too. I was told that early signs can be reversed, so keep up your good control and you should be A okay. It's not nice you get told this by a letter, I was shown my photos and told all okay as they were taken, she also told me that after 10 years 50% show early signs, and I can't remember the other stats, but keep a clear head and try your best, also things get worse as you get older anyway so it may be a combination of factors.

All the best

Rossi
 
Hello everyone...

Finally managed to dig out a booklet, "Understanding eye conditions related to diabetes" by the RNIB. It's fairly comprehensive, from why annual eye exams are important to how diabetes affects the eye, treatments, side effects etc. I think you can get hold of a copy by calling RNIB customer services on 0845 702 3153 (I picked mine up in the eye clinic).

Hope it's helpful for anyone who's worried! 🙂

ps: from the leaflet:

"Background Retinopathy

This condition is very common in people who have had diabetes for a long time. Your vision will be normal with no threat to your sight. At this stage the blood vessels in the retina are only very mildly affected, they may bulge slightly (microaneurysm) and may leak blood (haemorrhages) or fluid (exudates). The macula area* of the retina mentioned earlier remains unaffected."

*the macula...is a small area about the size of a pinhead. This is the most higly specialised part of the retina and is vital because it allows you to see fine detail ..."
 
thank you twitchy thats very good of you x
 
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