Retinopathy!! Scared. :-(

[Anonymous]

Hi everyone. Well I've just been kicked in the teeth by life yet again this morning! Last January I had my normal eye test & was told the pressure in one of my eyes was 23, so new Government guide lines stated this could be gloucoma, although my optician didn't believe I did, but anyway I had to see an eye specialist at hospital. I had every test going including an eye scan. The pressure in both my eyes was only 16, so I was told I didnt have glaucoma, & added that I definately didn't have any diabetic retinal damage either, so I went away relieved & happy. He said he just wanted to do a follow up in 6 mnths. So, I went back in the July just gone. I had all the tests done again including eye pressure which was 18 in both eyes. He said, with a big smile, that this was completely normal, that I did not have glaucoma, & that my eyes were perfect. Then, he smiled again, & said I still definately have no diabetic damage! I was so relieved! He asked me when my next retina eye screening was going to be. I said 4 wks time. He said well still have it done but no need to worry, there's no damage. Ive had to wait 8 weeks for my results as that's how long it takes around here, but I wasn't worried coz I knew the results would be clear. Well, got my results this morning & to my shocked screams, apparently Ive got retinal damage!! :'( They said its only in the early stages so I won't be tested again for another year. I couldn't believe or understand how after my specialist telling me I was clear to having eye screening only 4 weeks later, I have damage! I was in tears. I rang my diabetic nurse who was also shocked & said it was ridiculous! She said she believes the eye specialist as he wouldn't have told me that if he hadn't have been sure, but she couldn't understand what is going on. She said she usually receives their report about 2 weeks after I get to know, but when she does, she is going to speak with my GP about it to see what he thinks. I believe my specialist, so don't know what's going on. Has anyone else had retina damage? I'm scared to death. T2 for 3 & half years. Metformin 2 x twice per day. Sugar well in controll.

 

[hanadr]

It's quite common for T2s to have retinal damage at diagnosis, but a nuisance if specialists cannot agree whether you have it or not. It can't be bad though, or they'd agree, so don't panic!!
If your screening was done by camera, ask if you can see the photos and be shown where the damage is. That way you would know for sure. However, very slight damage may be reversible, so IFyou DO have it. Keeping very tight blood glucose control [at non-diabetic level] can sometimes reverse it.
the key to it all is Good Control Hb A1c of 7% is not good enough to prevent damage.
It only takes a few spikes above 7 to cause damage in some people. Others seem to get away with it.
Hana

 

[jopar]

HI Joey

Sounds at this is the bog standard letter one recives, and probably nothing to worry about..

The problem with screening, the photographer isn't an eye specialist, they are trained to pick up changes in the eyes any even slightly suspect photo's are sent for further inspection (with a percentage of photo's that are considered to be clean, quality control purposes) depending if felt that there might be something there, you are then called into the eye specialist clinic for a proper check to see what's happening..

I know that you went to the eye specialist but this was for suspected glacoma, so they would have checked your eye for glacoma damage not retinopathy damage, unless there was major problems showng, they wouldn't say much, I know this because I had to go the eye specialist due so that it could be determined whether the zig-zag lines in my vision were caused by a detaching retia or actually painless migraine! No mention of my if any diabetic changes, or the embulisum that has sat in one eye since I was 17 years of age (pre-diabetic)..

I have also recived the same letter you had from my screening a couple of years ago, but this proved to be nothing to be concerned about at all..

If you maintain good contol of your blood glucose as well as your blood pressure this all helps in prevention, but there isn't any time spam to when you will suffer load of hog wash.. Even if you have bad control doesn't mean you will have problems and go blind, it just increases the risk of...

Here's a link have a read..

http://medweb.bham.ac.uk/easdec/back_di ... pathy.html

 

[sugar2]

Hi,

Please don't panic! I had retinopathy, and had lots of laser treatment for it 15 years ago now. Since then, I go and have my eyes checked evryy year or so, to see if there is any change. My last appointment, they refered me back to teh screening...which I was surprised at, but they said " as your control is so good, and you have had so much laser treatment, it is unlikely anything else will go worng..as long as you keep good control. The screening is better at picking up small changes than this eye examination is anyway." This really suprised me, as you would expect teh specialist to be "better" than the screening technician, or whoever reviews the photos. Appartantly not. I was also told, that it is extreely unusual for a diabeteic, not to have some, small changes(not impossible, but unusual) but thsi is not a major concenrn, as long as good control in maintained, and they do not progress.

It could be that they are reporting things in an more clear cut way than your specialist, who could have been saying,"for a diabetic, you are perfect eyes, and they show no signs of getting worse" whereas the screening letter just staes teh facts, without the bedside manner??

Either way, don't panic(easier said than done I know!), and keep close control of your blood sugar.

 

[Sid Bonkers]

Hi Joely as others have said early stages or background retinopaphy is common and no treatment is usually required

As Jopar says eye specialists can not see what a retinal scan can see which is why diabetics are advised to have them, there is no way that an eye specialist can see with a bright light what a digital image of the back of a dilated eye can show up when seen full size on a computer screen despite what the eye specialists at your local spectacle retailers may tell you.

I would imagine an optician sees the back of your eye at maybe an inch even with magnification whereas a full size digital image viewed full size can be two or three feet wide and will show up even the smallest of bleeds.

I had a retinal scan after diagnosis that showed background retinopathy, two months later whilst having an eye test the optician told me he could see no evidence of background retinopathy. At my second scan I was shown that the background retinopathy that was spotted a year before was still there but that there was no further bleeds. Which pretty much told me that as well meaning as opticians may be they just cant see what a camera can see at the back of a dilated eye.

 

[jopar]

Another statisic you might find reasuring..

Less than 5% of diabetics suffer sever impairment of visision! This stastic is a couple of years old now, so would of been based on data from diabetics who had diabetes for many years, before the introduction of screening, and the continual advances in blood control.. And of cause the technology of resolving problems as they arise..

Several reasons why screening was brought in for diabetics..

1, A lot of diabetics didn't attend bother to have anual eye tests, only went to optiticians when felt they had a problem..

2, A lot of optiticans don't carry the kit to indentify problems as early as possible..

3, Traditional drawing techique used by optiticians and specialist have limitations of personal interpretation of information..

The photographs are brillient, as you can overlay one year to another year etc, it's a full and accuarte recording of the back of the eye..

To give you a guide I've been diabetic for 20+ years, like most have slight changes in my eyes my specialist doubled checked my diganoised date in my medical records as the changes I have suggest that I haven't been a diabetic as long as I said I had?? At the time I said 15 years, he said nah I'm seeing what I would expect to see in 5 years of a well controlled diabetic!!

 

[Anonymous]

Thanx everyone for your support and info. What's made it worse is the eye specialist at hospital telling me I definately didn't have any diabetic eye damage, (which hearing what all of you have told me has put that into perspective now), but I'm still angry that, if he knew the photos could possibly pick up something that he couldn't, he shouldn't have told me that and given me a false sense of security! He shud have either said nothing about it or say he's nearly sure their's no damage but the photos at your screening could pick something up. In the 8 weeks waiting for my results I knew... that they would be clear. I screamed out with shock when I read the letter. Anyway, it's going to be hard waiting another year to see if it's changed any, but can't do anything about it. My BM is always low - around 4.9 and wen I have my review its always been either 6.1 or 6.2.

 

[goji]

Anyway, it's going to be hard waiting another year to see if it's changed any, but can't do anything about it. My BM is always low - around 4.9 and wen I have my review its always been either 6.1 or 6.2.

If you're really worried you could get the test done yourself. A lot of highstreet opticians have started doing digital retinal screening. I got quoted £10 for a digital retinal screen at Vision Express.

I had a digital screen done with the NHS that said i had retinopathy in one eye but I subsequently saw two consultants who said they couldn't see any such thing and that the digital screening assessor had circled something that is always there in 'normal' people's eyes and had labelled the right eye when the circle was on the 'left' eye?!?

It's hard to know who to trust (the machine or the consultant) so I might pay for one of those highstreet scans in a few months just to be sure as I have to wait another year for an NHS one. £10 isn't much for some peace of mind.

 

[Caesar]

Hi. I've been reading this old post as I've recently come across a non-invasive option for retinopathy treatment that not many people seem to know about. I believe it's the groundbreaking research to avoid panic and fear for diabetic retinopathy or at least that's the effect it's having on me after 17 years of type 1. Have a look: http://www.diabetes.co.uk/forum/thr...etinopathy-treatment.67768/page-2#post-718657
Hope this will help some of you too.

 

[LucySW]

It's quite common for T2s to have retinal damage at diagnosis, but a nuisance if specialists cannot agree whether you have it or not. It can't be bad though, or they'd agree, so don't panic!!

... However, very slight damage may be reversible, so IFyou DO have it. Keeping very tight blood glucose control [at non-diabetic level] can sometimes reverse it. the key to it all is Good Control Hb A1c of 7% is not good enough to prevent damage.

Hana

Very good advice from Hana on both points. It may reverse, if you can get BG down and keep it down.