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Background retinopathy

EllenRooney93

EllenRooney93

Member
Messages
13
Type of diabetes
Type 1
Treatment type
Insulin
Hello

I had my annual eye screening the other week and have got my results back which say there is some background retinopathy but i dont need to be seen for 12 months. I am only 22 and this is terrifying me that it will develop further. My hba1c hasnt been as good the past 3 years and has been about 8.5% however went i had clinic in december it was 7.3% and after doing the dafne course last year my blood sugars are more stable. I used to have a lot of hypos but hardly have any now. I just feel like i needed to talk to someone who understands as i dont know any other diabetics .I also wondered if anyone else had background retinopathy and if it went away?

Thanks
 
Try not to worry Ellen, some people do find their retinopathy disappears (or doesn't progress) with good bg control but unfortunately in others it does progress and can lead to laser treatment, I was treated for diabetic retinopathy but have been problem-free for the last 12 years.

Have a good read of the following site, it has some great information and advice on diabetic retinopathy and how you should control your bg, bp and cholesterol levels:

http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html
 
Thank you, thats made me less worried ill have a look at the site. Thats great news that you have been problem free for 12 years :)
 
EllenRooney93 said:
Hello

I had my annual eye screening the other week and have got my results back which say there is some background retinopathy but i dont need to be seen for 12 months. I am only 22 and this is terrifying me that it will develop further. My hba1c hasnt been as good the past 3 years and has been about 8.5% however went i had clinic in december it was 7.3% and after doing the dafne course last year my blood sugars are more stable. I used to have a lot of hypos but hardly have any now. I just feel like i needed to talk to someone who understands as i dont know any other diabetics .I also wondered if anyone else had background retinopathy and if it went away?

Thanks
Click to expand...
Hey Ellen,

This is almost exactly the same position I have been in recently. I was extremely alarmed when I got back results telling me that I had background retinopathy (I was 23). Doing some research and asking Doctor/DSNs questions afterwards - I found out that initially background retinopathy shouldn't worried about too much.
The screening picks up tiny little abnormalities/changes in the blood vessels which are so minor that even the optometrist can miss them.

Speaking to another T1 I know around my age, after a few years of being out of control- getting back into a good range reversed the retinopathy by the time of the next screening, (severity completely depends on the individual) symptoms appear until the damage worsens which would be much later on down the line.

The language they use on the report is very shocking I know! I believe they use phrases such as 'this could lead to irreversible damage' etc.. but if this is background retinopathy you shouldn't be concerned yet and with support from your DSNs and users of this forum I'm sure you'll be to achieve a better A1C. :)
 
Hi Ellen,

Like you, I have also been told I have background retinopathy. I have been diabetic for almost thirty years now, so I've been told it's not that uncommon to have some changes to the eye after this amount of time.

Like others have said, the retinopathy may disappear, and if you keep your sugars controlled it hopefully won't get any worse. Just keep attending the screening appointments. That way they can continue to monitor and intervene if necessary.

Em
 
Hiya - i was exactly the same as you when I found out I had got it, @noblehead was wonderful in reassuring me about it and i've completely chilled out about it now - been 3 years of it, but have only been diagnosed 4 years and reckon all my damage may of been done whilst I was undiagnosed. Am due another test shortly and thanks for also reminding me as i'd forgotten about it, fingers crossed no changes and if anything it's gone but am not sure it will of as HbA1c was slightly higher at last test..best to be realistic !!
 
Thanks for all the replies. I feel much calmer about it now, im so glad to have this forum. Fingers crossed for your test juicyj hope all goes well :)
 
Hi Ellen,

I'm in the same boat as you at the minute – I went for a check-up last week and was told I had background retinopathy and if I don't get things sorted it can get severely worse. Luckily, the doctor said they had spotted it early on enough for me to make changes to my life and get my sugars under control. I'm not going to lie, I'm pretty scared but I think it's the kick up the **** I needed. He said the "god's must be watching over me at the minute". But he also said if my HBA is down to 6.5 and I haven't been on a DAFNE course by my next appointment he's going to give me another bollocking!

All I'll say is just keep an eye on your sugars and you'll be fine - you've got it early enough to beat it!
 
EllenRooney93 said:
Hello

I had my annual eye screening the other week and have got my results back which say there is some background retinopathy but i dont need to be seen for 12 months. I am only 22 and this is terrifying me that it will develop further. My hba1c hasnt been as good the past 3 years and has been about 8.5% however went i had clinic in december it was 7.3% and after doing the dafne course last year my blood sugars are more stable. I used to have a lot of hypos but hardly have any now. I just feel like i needed to talk to someone who understands as i dont know any other diabetics .I also wondered if anyone else had background retinopathy and if it went away?

Thanks
Click to expand...
Hi
I really wouldn't worry. The letters sent are standard and I believe the whole system should be changed. My son was diagnosed with type 1 diabetes exactly 4 years ago when he was 14, he has excellent control, his HBA1C has always been between 5.9 - 6.1. He received exactly the same letter we couldn't believe it! The worst thing was the letter arrived on a weekend and we couldn't contact anyone, so frustrating, hence to say my son spent the whole weekend worrying.On the following Monday I managed to speak to the the receptionist from the eye clinic where my sons eye test had taken place, she told me that a letter will be sent to my sons GP explaining the results, I called his GP and no letter had arrived, I then called back the eye clinic who put me through to the person who performed the eye screening, she said that his left eye showed slight changes and it was nothing to worry about, shecouldnt explain any further. I was so frustrated and decided to take my son to an optometrist for another test. Ther results from this test were perfect and showed no signs of background retinopathy. Please dont worry, I would advise you go to an optometrist for a 2nd opinion. My son is now having his eyes tested every 6 months.
 
EllenRooney93 said:
Thanks for all the replies. I feel much calmer about it now, im so glad to have this forum. Fingers crossed for your test juicyj hope all goes well :)
Click to expand...

Thanks it's next week, (checked as soon as I got home !!) I really don't like the 'trippy' feeling with the eye drops, but it's got to be done !!
 
Ralphy said:
Hi
I really wouldn't worry. The letters sent are standard and I believe the whole system should be changed. My son was diagnosed with type 1 diabetes exactly 4 years ago when he was 14, he has excellent control, his HBA1C has always been between 5.9 - 6.1. He received exactly the same letter we couldn't believe it! The worst thing was the letter arrived on a weekend and we couldn't contact anyone, so frustrating, hence to say my son spent the whole weekend worrying.On the following Monday I managed to speak to the the receptionist from the eye clinic where my sons eye test had taken place, she told me that a letter will be sent to my sons GP explaining the results, I called his GP and no letter had arrived, I then called back the eye clinic who put me through to the person who performed the eye screening, she said that his left eye showed slight changes and it was nothing to worry about, shecouldnt explain any further. I was so frustrated and decided to take my son to an optometrist for another test. Ther results from this test were perfect and showed no signs of background retinopathy. Please dont worry, I would advise you go to an optometrist for a 2nd opinion. My son is now having his eyes tested every 6 months.
Click to expand...
I agree that the standard results letters can be rather alarming and probably need improving. However, I think I should point out that not all optometrists are equal when it comes to detecting retinopathy. Some optometrists are well-qualified - they participate in the National Eye Screening Programme, have specific qualifications in grading diabetic retinopathy, use approved nationally-approved cameras, have their work quality assured within the local Screening Programme and are able to solicit expert opinion from a consultant ophthalmologists within the programme. Other optometrists may take similar photographs and have the ability to detect gross changes but not have the equipment ( including software used to enhance the images) to detect subtle changes or the ability to have their work quality assured. These optometrists are at risk of under-referring (due to inability to detect subtle changes) or over-referring (due to lack of experience and lack of liaison with qualified ophthalmologists).

If anyone does wish to go to an optometrist for a second opinion, I suggest they check that the optometrist has the specialist qualifications (currently units 307 and 308 of the City and Guilds qualification in diabetic retinopathy screening) and is grading at least 500 diabetic patients per year to maintain expertise.
 
Rickmac1988 said:
Hi Ellen,

I'm in the same boat as you at the minute – I went for a check-up last week and was told I had background retinopathy and if I don't get things sorted it can get severely worse. Luckily, the doctor said they had spotted it early on enough for me to make changes to my life and get my sugars under control. I'm not going to lie, I'm pretty scared but I think it's the kick up the **** I needed. He said the "god's must be watching over me at the minute". But he also said if my HBA is down to 6.5 and I haven't been on a DAFNE course by my next appointment he's going to give me another bollocking!

All I'll say is just keep an eye on your sugars and you'll be fine - you've got it early enough to beat it!
Click to expand...
What can I say 50 years of being a type 1 diabetic and every year for the past 6 years have received exactly the same reply 'background retinopathy'. Yes I have floaters in one eye and astigatism in the other but all is good. I am informed by my optician that I have healthy eyes.
 
I have had laser treatment for retinopathy. I've been T1 for 33 years since the age of 12. I was last treated about 10 years ago and haven't required any since. It was discovered when my hospital started routine scanning. It shocked me that I'd damaged my eye sight so young but before Glargine my bloods were all over the place. With my tighter control these days I don't expect to have any further damage hopefully.
 
I had background retinopathy diagnosed in 1 eye about 6 years ago when my hba1c was 7.3%. I got rid of it within 6 months through tighter bg control (doing injections directly after eating and testing bg levels a lot more) leading to a lower a1c.
 
Background retinopathy is completely reversible. I had it, improved my control by low carbing and it went. It is also harmless, providing it doesn't progress. The only way to get rid of it though, is by improving your BGs.
 
I've had the diagnosis from a photo twice and freaked both times. And both times i've eventually been examined by an opthamologist who has concludedthe picture is misleading and it's actually astigmatism or a retinal reflex. I hope you have a similar result. The technicians who do the photos aren't opthamologists. Get a view from one before starting to panic and then take comfort from the posts above. Good luck!
 
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