oh heck - retinopathy

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LisaLQ

Well-Known Member
Relationship to Diabetes
Type 2
Despite the lady who did my retinal screening saying my eyes were perfect and no sign of retinopathy, she sent it off (as they do) for a closer look and I've come home today to a letter saying I have R1 background retinopathy in my left eye.

It came with a leaflet explaining it (in simpletons terms lol), and I've done a bit of reading online, but I just wondered...

Is this it? Will it get worse quickly? Am I going to eventually go blind, even with treatment, or will treatment stop it completely?

I'm sorry for being a drama queen yet again (story of my life 😛 ) just I assumed as it was a few weeks ago, and she said all was well, that no news was good news.
 
I understand it that it's not the end of the world (thats week next thursday) and you don't neccesarily go blind, it's a chance to do something about it the yearly screening enables us to make sure we catch the problem before it's too late, ensuring we don't all end up with bad eyesight.

Take care.

Rossi
 
I'm lucky and have a clear retinopathy scan every year. So I can't offer you any specific advice.

Did they suggest a follow up appointment, did the leaflet tell you what to do to improve, namely good control..?

I do find it rather pathetic that they simply write to someone and say here you are you've got 'this', bung you a leaflet and let you get on with it. If that is what they have done.

If indeed that is what they have done I'd be on the phone to my GP in the morning to get an appointment for their explanation as to what this means and where you go from now.

Hope the background bit is just they've seen something small and want to keep an eye on it. Sure there is someone who may be able to assist you better than I can.
 
I haven't anything helpful to say either I'm afraid having just had my own first screening, clear I was relieved to hear. I reckon you should get in touch with your DSN as soon as you can and see what they have to say.
 
Hi Lisa, I got one of those letters last year too. If they said in the letter that you don't need to see them, then you don't need to worry. A lot of people get BR apparently, and it is something that can disappear in time if you do your best to achieve stable levels. Often, people who are recently diagnosed get this due to a rapid reduction in their glucose levels after diagnosis - it's thought that this was the cause for me. I went to see my optician for an ordinary eyetest and told her about it about three months after getting the letter, and she said she couldn't see anything.

The one to beware of is proliferative retinopathy - that can be treated with lasers, so even that's not the end of the world. Things have improved enormously in recent years and it's far less common to go blind if you are checked regularly.

Hope that helps ease your worries!🙂
 
As a follow up check is not advised, it is nothing to worry about. The thing with the screening is it is keeping an eye on things, so that whatever can be caught early and treated when necesary.

Those letters are always badly worded, and I think sometimes the people who send them out either lack peopleing skills or have become de sensitised to our worries.

As others have suggested, you can always see your doctor and get someone to explain the results or go to the netdoctor link posted by sweetsatin.

I hope you feel more reassured now.
 
R1 is the lowest grade of retinopathy, as other people have said, it doesn't present a problem and will just be monitored. Lots and lots of us get told this in one way or another.
R0 No diabetic retinopathy
R1 Mild diabetic retinopathy
R2 Moderate diabetic retinopathy - not immediately sight-threatening
R3 Severe diabetic retinopathy - sight-threatening and in need of laser treatment
P Presence of previous laser treatment
Good glucose control helps prevent progression but equally so is good blood pressure control. Stopping smoking, if you do, is also important,
There is a very big site about retinopathy here
http://medweb.bham.ac.uk/easdec/Information_for_patients.html
but a warning : remember its giving a lot of facts and many of the people reading it will have far greater levels of retinopathy .
 
Hi Lisa,

Over the last 5 years I've had lots of treatment for retinopathy, and still have 20/20 vision (with glasses) and a driving license.

In summary:
It's treatable, though scary.
Good control of blood sugars helps control the retinopathy, though beware of rapid changes in control as they're frequently the trigger that causes it in the first place.

Since the objects have been found at the routine screening then it's likely they're not yet at a stage to cause direct damage to sight. Initially the consultant may decide not to treat anything but to keep a close eye on developments and review the progression over the next few months or year - it depends on the severity of what was found.

Treatment is likely to involve many 100s of laser burns put onto the retina. This cuts off the tiny blood vessels that are likely growing where they shouldn't be at the back of the eye. The laser treatment is done while you're awake, with a local anaesthetic drop applied to the eye. I recommend taking ibuprofen or paracetemol an hour or so before the appointment, and expect the eye to feel gritty and slightly sore for the rest of the day. You would also have the drops that dilate the pupils for it too.

You may find at some point that you experience a haemmorhage within your eye. This is VERY scary but again is treatable. It's not immediate or short term, but the blood does clear over time - a small bleed can clear within a week or so, a large or recurring bleed may take months. If you do experience a bleed, you need to see your consultant or emergency eye unit as soon as you can. They will normally check vision for any blurry or blank patches. There's nothing you can do at the time to prevent or minimise the bleeding, it's just a case of riding it out I'm afraid.

If you go on in the future to experience heavy bleeding that doesn't clear, you may be recommended a vitrectomy. I had one of these (in one eye only) 2 years ago (November 2007). Under a general anaesthetic the surgeon cuts into the eye, removes the gel from inside it, performs more laser surgery, replaces the gel with saline and stitches it all up. It's a day-surgery case and I was home later the same day. I had a month of antibiotic and other eye drops and while awake I had to stay upright to prevent my retina wrinkling. There are different positions you are given - either lying flat, on one side, and so on depending on retina condition.

One complication I was warned of with vitrectomys is that they are likely to cause early cateracts (within about 5 years of the surgery) but my most recent check up found no sign of anything developing and the consultant basically said it's something they have to warn about but that he was confident I wouldn't experience it. Even so, it's a small price to pay for having good vision again.

You will have to notify the DVLA once you have had laser treatment for retinopathy (assuming you have a driving license), the DVLA may send you for a field vision test at one of their approved opticians (one who has the equipment!), this involves looking into a machine and pressing a handheld buzzer thing when you see a small green light flash up.
 
Thanks so much for all the information and setting my mind at ease 🙂 I have a couple of friends with (type 1) diabetes and one of them also was told she had R1 but it hasn't progressed.

I think it's not so much the stage it's at that scares me, just the fact it's there already. I was only diagnosed in November, and was told if I kept my sugars under control - as my blood sugars were already the low end of diabetic, it was likely I could keep complications at bay for many years yet. So to find out I've got something that usually comes after years of being diabetic so soon, after trying so hard, really upset me. Plus the fact I'd been told by the optician there was no sign of it so thought I was ok.

I wonder if it's possible I've had diabetes longer than they think. I had gestational diabetes 7 years ago, and when I work out how often I was tested since, I realised I'd only had one fasting glucose test a year later and was borderline (in the late 6s). So I guess it is possible I've had diabetes for 5 or 6 years, and it's just remained pretty "mild". I dont know though - as my eating habits were really bad, I think if I'd been diabetic the whole time I'd have hypered at some point (methinks a whole bar of chocolate on a night in bed would have made me very poorly!).

I'm going to use this to my advantage in the "not allowed to test" sense - hubby and I are going to see my GP (not the diabetic nurse who turned me down for test strips) and say - I need to keep my sugars under tight control now - and ask for help, if they still say no I'll let them know I'm not prepared to wait for 6 monthly HbA1c tests to tell me how I'm doing, and that I'm going to test with or without their help/prescription.

Does that make sense? Do you think it'll help change their minds?

I did also read that a quick drop in HbA1c can cause this - but my retinal screen was within a week of being diagnosed, therefore had only been dieting for that week, it's unlikely that was the cause in my case.

Thanks again for all the advice xx
 
Ps. I dont drive, so that's ok.
 
Despite the lady who did my retinal screening saying my eyes were perfect and no sign of retinopathy, she sent it off (as they do) for a closer look and I've come home today to a letter saying I have R1 background retinopathy in my left eye.

It came with a leaflet explaining it (in simpletons terms lol), and I've done a bit of reading online, but I just wondered...

Is this it? Will it get worse quickly? Am I going to eventually go blind, even with treatment, or will treatment stop it completely?

I'm sorry for being a drama queen yet again (story of my life 😛 ) just I assumed as it was a few weeks ago, and she said all was well, that no news was good news.

Lisa, I had exactly the same result from my last scan in October got the leaflet and everything.

The Lady who did the scan told me that some of the blood vessels behind my eyes were swollen. When I told her that my BS levels had been very high for the last year and that I had recently been told I would be starting on insulin she said that once my BS levels started to lower again the swelling in the blood vessels would reduce so it shouldn't be anything to worry about.
 
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