Diabetic retinopathy questions!

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If you're still on annual check ups/screenings for eyes then surely you aren't a concern as such? I don't know....but I used to be a 12 monthly one and I am now on 6 monthly check ups :/
 

banjo64

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I'm a type 1 diabetic (although I don't post here frequently) who actually works as a diabetic screener for diabetic retinopathy testing. I just wanted to say if anyone has any questions in regards to this/the procedure etc etc please ask me!! :)
Hi , my son has been diagnosed as type 1 diabetic for about 4 years now and has seemed to be coping very well in general but his recent eye screening results have shown that he has R1.1 mild background retinopathy in his left eye which has come as a bit of a shock to us as he is still only 14 years old and his HbA1c results have been around 7.0 , how unusual is this in one so young ? Thank you.
 
D

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Hi , my son has been diagnosed as type 1 diabetic for about 4 years now and has seemed to be coping very well in general but his recent eye screening results have shown that he has R1.1 mild background retinopathy in his left eye which has come as a bit of a shock to us as he is still only 14 years old and his HbA1c results have been around 7.0 , how unusual is this in one so young ? Thank you.

He may have swings though like say one reading could be a 7 and then the next a 13 or something....is that the case? It is with me!
 
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banjo64

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Hi , yes he does have occasional spikes in his readings as you suggest up to about 16, but the 6 monthly tests with the doctor has seen his readings average 7.0.
 

brettsza

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Hi @McMittens

I had been diagnosed with T2 about three months ago and i have reduced my a1c from 142 to 46 in that time.
but lately my eyes have been getting really funny and I am having to concentrate a lot harder than I usually would to see anything
is it retinopathy or just change in prescription
if i pop by into a specsaver will they give me a prescription free of cost?
I have not changed my prescription glasses in last 6 years for different reasons.
 

novorapidboi26

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Hi , my son has been diagnosed as type 1 diabetic for about 4 years now and has seemed to be coping very well in general but his recent eye screening results have shown that he has R1.1 mild background retinopathy in his left eye which has come as a bit of a shock to us as he is still only 14 years old and his HbA1c results have been around 7.0 , how unusual is this in one so young ? Thank you.

as @ohitsnicola says, the spiking of blood sugars can cause damage to the micro-vascular system, which includes the eyes unfortunately........

as he gets older he may start to settle down as the hormones calm down......

I wouldn't have thought his blood pressure was a factor.....

I have eye problems, not that its effecting sight, but on paper, and I believe this is down to, going from poor to good overnight and spiking blood sugars,........

my younger brother is on a twice daily regime so runs higher than he should, and has been doing so for 26 years, however he has been stable and has no eye problems......
 
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babo456

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Hi , my son has been diagnosed as type 1 diabetic for about 4 years now and has seemed to be coping very well in general but his recent eye screening results have shown that he has R1.1 mild background retinopathy in his left eye which has come as a bit of a shock to us as he is still only 14 years old and his HbA1c results have been around 7.0 , how unusual is this in one so young ? Thank you.

Hi,

The good thing now is that I would imagine he is being monitored more closely and in all honestly most diabetics will have probably have a wee bit of back ground diabetic retinopathy.

Everyone is different. I have had people who are fairly poorly controlled and have very good eyes to people who have been good, kept fit, eat the right food etc who's eyes unfortunately go onto PDR!
 
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banjo64

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Thanks for all your replies , I really thought he / we were monitoring his levels quite well (until I read the eye test results this morning), the gp also seemed pleased with the all readings being logged , I guess we'll have to be more vigilant re. the spikes although there seems to be no rhyme or reason to when and why they happen sometimes.
 

babo456

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Hi @McMittens

I had been diagnosed with T2 about three months ago and i have reduced my a1c from 142 to 46 in that time.
but lately my eyes have been getting really funny and I am having to concentrate a lot harder than I usually would to see anything
is it retinopathy or just change in prescription
if i pop by into a specsaver will they give me a prescription free of cost?
I have not changed my prescription glasses in last 6 years for different reasons.

Hi,


It could be a few things,

For diabetics the natural lens inside your eye that allows us to focus on things can become swollen (with proteins and fluid) and will make things out of focus. If your sugars are sporadicly controlled this can be a factor. For most people it will just settle with better control or if your control is fine, will get back to normal quickly.

OR

You have not changed glasses in 6 years? Was this because the prescription was the same? If not you may need an updated prescription.

OR

Theres something else going on! An Optician should be able to spot retinophathy.

I don't think you will be entitled to any discounts from an Optician however I think the yearly test is Free for diabetics in England, NI and Wales? I would have thought that if you were experiencing a change in vision that they would retest you free of charge even if you have been seen recently.

In Scotland it's 'free' regardless. Much better system up here! Although I maybe biased....
 
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noblehead

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Thanks for all your replies , I really thought he / we were monitoring his levels quite well (until I read the eye test results this morning), the gp also seemed pleased with the all readings being logged , I guess we'll have to be more vigilant re. the spikes although there seems to be no rhyme or reason to when and why they happen sometimes.

Try not to worry too much as they will closely monitor your sons eyes from here on, in the mean time have a chat with his diabetes consultant about reducing his postprandial spikes.

I posted this website earier on in the thread, however it's worth posting again as it has a wealth of information and advice for people who have diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/gradingretinopathy.htm
 
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AndyD

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I recently had my first scan after being diagnosed as type 2, 18 months ago. I received the the letter saying that I appeared to have "Background Retinopathy" and to come back in a year for a further scan. Obviously this worried me somewhat, as my HbA1c has been diet controlled at 6.4. I arranged for my optician to give me a full once over. In his own words he gave me "the same check for retinopathy that would be given if I was referred to Moorfields", including dilating my pupils. He examined my eyes using four different methods, to be sure, and categorically stated that "your eyes are as clean as a whistle, I cannot see any signs of retinopathy". I would strongly suggest that if you have any doubts about the photographic scan, you should make an appointment with your optician, otherwise you may end up as my optician put it being one of the "worried well".
 

CarbsRok

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I recently had my first scan after being diagnosed as type 2, 18 months ago. I received the the letter saying that I appeared to have "Background Retinopathy" and to come back in a year for a further scan. Obviously this worried me somewhat, as my HbA1c has been diet controlled at 6.4. I arranged for my optician to give me a full once over. In his own words he gave me "the same check for retinopathy that would be given if I was referred to Moorfields", including dilating my pupils. He examined my eyes using four different methods, to be sure, and categorically stated that "your eyes are as clean as a whistle, I cannot see any signs of retinopathy". I would strongly suggest that if you have any doubts about the photographic scan, you should make an appointment with your optician, otherwise you may end up as my optician put it being one of the "worried well".

I had the problem of photos clean plus the specialist scans at the hospital oh and six professionals including 3 top ophthalmic surgeons saying no damage, yet 1 so called specialist diabetes ophthalmologist decided that as I had had diabetes for almost 50 years it was a full gone conclusion that I had eye damage, she was quite insistent that I was going blind and needed urgent as right then and there laser surgery to save my sight. I told her to ****** off and get her eyes tested. Even a year down the line she is still writing to my GP imploring him to make me have laser surgery..
Silly woman just kept looking until she convinced herself she was seeing damage that wasn't there. She even said the scans would not show up the damage she could see. :eek:
Needless to say I will never ever go for another scan or go anywhere near that hospital eye dept again.
 

jinstone

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This is great thread and many thanks for all the useful information. My mistake Is should of asked but when I last visited the surgeon seemed to be suggesting that the leakages from my retinopathy scan were creeping towards the centre of the retina, as a result I have to go back for more laser surgery on both eyes. Do you have an idea why the leakages might creep toward the centre of the eye? (Seems a pity they can't creep the other way :) )
Regards
Jeremy
 

dani-a

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Hi everyone, I have proliferative retinopathyI have had since 2008 (currently treated with annual injections) and have been advised that anyone that had had diabetes for more than 10ys can develop retinopathy despite excellent control, or suddenely gaining good control again. I also thought that it was VEGF that caused the extra weak capilleries to grow, am I wrong? I have never had laser surgery and would like to know if anyone else has thier treatment by injections and whether bango64 could advise if this way of treatment will become more common?
many thanks in advance
 

Caesar

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Hi @dani-a

VEGF as well as FGFb is the main growth factor responsible for diabetic retinopathy. It makes fresh new blood vessels grow and later leak more fluid.

The release of chemical growth substances such as VEGF is prevented by the active pharmaceutical ingredients contained in injections such as Lucentis by Genentech or the more recently FDA approved Eylea by Regeneron Pharmaceuticals. Anti VEGF drugs are used for a number of retinal conditions that involve macular oedema as a secondary complication. As such drugs are pricey, involve not negligible side effects (e.g., cataract development), their administration is highly invasive, and individual results may vary, then they are only adopted at later stages of the retinopathy progress. Not long ago I came across a non-invasive treatment that works on the same principle of preventing VEGF production by preventing retinal hypoxia. It's called Noctura 400 and is a sleep mask that emits a soft green glow. I've been using the mask on myself for about 6 months now and I'm satisfied the way it works. You can find more info on this other thread of the forum: http://www.diabetes.co.uk/forum/threads/green-light-for-retinopathy-treatment.67768/ or directly here: http://noctura.com.

Hope this helps!
 
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birchy66

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I'm a type 1 diabetic (although I don't post here frequently) who actually works as a diabetic screener for diabetic retinopathy testing. I just wanted to say if anyone has any questions in regards to this/the procedure etc etc please ask me!! :)
Can anyone say how many years it takes to develop retinopathy. I think I am quite well controlled and my HbA1cs' are usually around the 7% (53) mark and follow a moderate carb diet and try to avoid too many spikes. I have been diagnosed 2 years with type 1.
 

donnellysdogs

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I personally don't think retinopathy is timed from 10 years.

I think it is personal bodies but based upon the fluctuations in bloods levels.

The important thing for me keeping clear of retinopathy after 30+ years has been by keeping my swinging levels to a minimum.

When this was less so I was diagnosed with background retinopathy. Now with a standard deviation of 1.3 to 2.6 I am maintaining my eyes and have had no retinopathy for pat 3.5 years. It just disappeared. Before that I had background retinopathy for about 2 years and my levels then were swinging beyond the 3.0 standard deviation..

Keep the levels at optimim levels and stave off.. The fewer going from 6-12 for example the better.. Keep the swings to a minimum.

Length of time I believe is not the factor.. The swings are.
 
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birchy66

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I personally don't think retinopathy is timed from 10 years.

Keep the levels at optimim levels and stave off.. The fewer going from 6-12 for example the better.. Keep the swings to a minimum.

Length of time I believe is not the factor.. The swings are.

Thanks donnellysdogs, whenn you say ... from 6-12, do you mean BS readings?
 

noblehead

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Can anyone say how many years it takes to develop retinopathy. I think I am quite well controlled and my HbA1cs' are usually around the 7% (53) mark and follow a moderate carb diet and try to avoid too many spikes. I have been diagnosed 2 years with type 1.

No one can answer that, some people never develop diabetic retinopathy despite having long-term diabetes as where others can develop background retinopathy after only a few years, as DD says try and keep the bg swings from high to low to a minimum and keep your bp and cholesterol levels in check, the website I posted earlier in the thread has a wealth of information on diabetic retinopathy.
 
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