Retinopathy

[Laurakm87]

Hi,
I'm newly diagnosed Type 2 and new to the group.

I have just got my results from my diabetic eye screening. I also had to have a retina screening after my opticians were concerned. I am getting a little worried about my eyes and wonder if anybody could maybe shed some light.

In My diabetic screening my Right eye is
●R1 Diabetic Retinopathy

At my retina screening I have
● Right superior optic disc blurring
●Mild ST thinning on OCT rnfl

Nobody has explained either of these and I didnt know if anyone has had similar experience? I'm afraid of loosing my eye sight as I have watched my dad loose his sight due to diabetes.

Thanks

 

[Jodee]

Hi Laura, so sorry about your recent results. I can't really explain what the situation is but you should get a letter from the retinopathy clinic, but you do have to sign in to the website via NHS to view it, although if you email them they will send to you via email. You could ask them to explain about your results also.

I know when blood glucose is too high it does affect the eyes and when its bought down it can help the eyes. I would definitely check your HbA1C results and concentrate on bringing blood glucose levels down, using the medications prescribed and perhaps tweaking you diet a little.

Also I would ask your doctor or diabetic nurse for a referral to a course to help you manage your symptoms and help understand things better.

Best wishes

 

[Inka]

Welcome @Laurakm87 🙂 Google will give you an idea of what those last two mean, but you really need an eye specialist to explain to you, as sometimes someone can have a condition but it’s so mild as to be nothing to worry about. Other times, a result will only give part of the picture and other things need to be borne in mind aswell.

I believe the “R1 retinopathy” is the very earliest stage of retinopathy, so hopefully you can improve that by concentrating on good control 🙂

Do speak to your optician about your results though so you can get a proper explanation.

 

[KC Essex]

I would be interested in any reply to Laura's question too.

Have had T2D for 10 years now, but last 2 years my Hb1ac has gone from 56 mmol (Oct 23) to 81 mmol (May 25).
Have been on Metformin 500mg (x4 per day) and for 18 months Dapagliflozin 10mg.

For last few weeks have been taken off Dapagliflozin and given Gliclazide 30 mgs, which with a return to a low(er) carb diet, has had amazing effects on my blood sugar (testing am and pm each day).

Have been having regular ophthalmology check ups but in last 12 months retinopathy has deteriorated and I am concerned for my eye sight.
Right Eye R2 M1 P0
Left Eye R1 M1 P0

I also have an oedema on my right eye.

Apparently this (the PED) can be operated on , but they won't touch anything while blood vessels are swollen.

Hopefully with low card diet and Gliclazide I can get the blood vessel swelling in eyes down, and can get procedures to help.

Anyone been through this ?

 

[Inka]

Welcome @KC Essex 🙂 Google will tell you what those mean, but for a personalised comment based on your individual circumstances, you need to speak to your eye specialist.

One thing I will say though is that it’s gentler for the eyes to bring blood sugar down slowly rather than have a quick, massive drop. Are you testing your blood sugar at home?

 

[KC Essex]

Welcome @KC Essex 🙂 Google will tell you what those mean, but for a personalised comment based on your individual circumstances, you need to speak to your eye specialist.

One thing I will say though is that it’s gentler for the eyes to bring blood sugar down slowly rather than have a quick, massive drop. Are you testing your blood sugar at home?

Yes thanks I've read that, testing twice a day, now in 4.5 to 6 range. K

 

[Inka]

Yes thanks I've read that, testing twice a day, now in 4.5 to 6 range. K

When are you testing? You might want to test at varying times of the day to make sure you’re not missing any higher sugars.

There’s some basic information about retinopathy here, some of which you might well already know:

Diabetic retinopathy — diabetes and eye problems

What is diabetic retinopathy? Diabetic retinopathy is a complication of diabetes. Sometimes called diabetic eye disease, it occurs when high blood sugar levels damage the retina at the back of your eye. This is the seeing part of your eye. If you don’t get this eye problem treated in time, it...

www.diabetes.org.uk

As you can see, good control can help.

 

[Laurakm87]

Thank you for all of your replies, I have a follow up for my hospital appointment next Friday so I am hoping the results won't be too far behind.
I have recently found out my mums side have a history of glucoma so that has kind of put me on edge too.

I really need to start working on my diet, i'm still struggling to adjust to this new lifestyle, I am currently awaiting obesity clinic appointment too.

What kind of healthy diets do people suggest? I have recently considered looking at a keto diet but I don't know if that would be beneficial or not?

Thanks again

 

[AndBreathe]

Thank you for all of your replies, I have a follow up for my hospital appointment next Friday so I am hoping the results won't be too far behind.
I have recently found out my mums side have a history of glucoma so that has kind of put me on edge too.

I really need to start working on my diet, i'm still struggling to adjust to this new lifestyle, I am currently awaiting obesity clinic appointment too.

What kind of healthy diets do people suggest? I have recently considered looking at a keto diet but I don't know if that would be beneficial or not?

Thanks again

Laura, pleased you don't have too long to wait for your follow-up, although I'm sure it probably feels like an age.

Your GP will receive a more detailed report to your own, but to be honest, it's probably best to wait for the specialist appointment for an expert opinion.

Many of us who have been T2 for some time have had great success with a reduced carb diet - in other words, paring back on the sweet and starchy stuff in our diets.

In your shoes, I'd advise that you don't go headlong into a keto diet as aggressive, rapid changes in blood sugar can impact the eyes, in an undesirable way. By all means do some cutting back, but take it steady.

This is a long game, not a sprint. You have had some changes picked up very soon after diagnosis, and that can only be a positive. Better to know, for sure.

Whatever you decide, I wish you the best outcomes.

 

[JITR]

What kind of healthy diets do people suggest?

Dr David Unwin has been very successful with a low carb diet with no medication, over 150 patients at in remission. Here is his diet sheet. He wrote the foreword to the Cadlesi's Reversing Diabetes Cookbook; you could regard it as a companion to his diet; the introduction explains how to lose weight.

Also have a look at Dr Kim Andrews' Meal Planner and Food Lists; my weight loss (22 kg) and maintenance deit is like that.

If you are interested in Keto/Low Carb, Real Meal Revolution is a good resource (you can download food lists and sample recipies); the cook books written by a master chef are helpful to people like me who don't know how to cook; they follows based Professor Tim Noakes' Banting Diet (Google for details).

I followed the food list approach but actually you need look no further than Diabetes UK for diets, meal planners and recipes !!!

 

[Inka]

Here are the Diabetes U.K. Meal Plans @Laurakm87 :

Meal plans and diabetes

Eating nutritious, healthy and downright delicious food is that bit easier with our meal planners. We've created multiple different weekly meal plans to suit all types and tastes. They're nutritionally balanced, are calorie and carb counted, and can help if you want to lose weight. They also...

www.diabetes.org.uk

.

 

[M.Kn]

Hi,
I'm newly diagnosed Type 2 and new to the group.

I have just got my results from my diabetic eye screening. I also had to have a retina screening after my opticians were concerned. I am getting a little worried about my eyes and wonder if anybody could maybe shed some light.

In My diabetic screening my Right eye is
●R1 Diabetic Retinopathy

At my retina screening I have
● Right superior optic disc blurring
●Mild ST thinning on OCT rnfl

Nobody has explained either of these and I didnt know if anyone has had similar experience? I'm afraid of loosing my eye sight as I have watched my dad loose his sight due to diabetes.

Thanks

I just had my Yearly Diabetes eye screening and I have Diabetes stage 1 Retinopathy they just told me to control my glucose better and I would be seen again next year, I struggle to read my Text messages like they go all fuzzy.

 

[Lilly]

Here in North East I have 2 year eye check and foot check Type 1

 

[saffron15]

I was diagnosed with type 2 almost a year ago. I asked for the test. I have occasional flares of uveitis inflammation of the eye. I self refer to eye casualty. In 2011 I referred very late and had a macula oedema in my left eye. I had 6 weeks of steroids and it resolved although my sight was affected a bit. A year before I asked for a diabetes test I remember my sight was blurry and I felt very tired. I went to the clinic on a Saturday and the people who do the scans weren't on duty and I didn't get my follow up consultant appointment. I suspect I was diabetic then but my optician didn't flag up when I had a test in the November. I had a cataract op in October and other eye in March. I had an oedema in January that was not serious but took months to clear. I'm still on daily eye drop. My prescription has reduced by - 3 I don't know if that is wholly attributable to removal of the cataracts or if some may be the result of stable blood sugars. I havent had an eye screening as the uveitis caused my pupils to stick down ( they have been unstuck) and it would have been difficult to see the back of my eye. I asked consultant if eyes OK and he said no retinopathy. Hopefully I'll have an official test next year. I pay extra at my opticians so had same scans and photos last week

 

[p4ul]

My retinopoathy results in April 2023 were: “Your test result showed that you have some background retinopathy. This
means there are small changes to the blood vessels in the retina at the back of your eye as a result of diabetes.”

This was my first test and the technician who did the test told me that if results came back showing signs of retinopathy, it was irreversible.

In April 2024, my results were: “Your test result showed no signs of diabetic retinopathy. This means you are currently at very little risk of damage to your eyesight from your diabetes.”

I checked this contradiction with my DSN who said that as my BG is better managed, retinopathy can improve.

(All this reminds me that my next test is due in the next 6 weeks or so!)

 

[Bruce Stephens]

In April 2024, my results were: “Your test result showed no signs of diabetic retinopathy. This means you are currently at very little risk of damage to your eyesight from your diabetes.”

I checked this contradiction with my DSN who said that as my BG is better managed, retinopathy can improve.

I think there's probably a measurement problem, too: at the early stages, a photo might be determined to be R0 by one expert but R1 by another. These really are rather small changes. (I've no idea who's correct about whether retinopathy can improve.)

 

[p4ul]

I think there's probably a measurement problem, too: at the early stages, a photo might be determined to be R0 by one expert but R1 by another. These really are rather small changes. (I've no idea who's correct about whether retinopathy can improve.)

I don't disagree with any of this. My DSN's view was that as blood 'quality' improves, it can be pumped into the smallest vessels in the retina. I wasn't sure about the 'quality' comment, but seemed to make sense overall.

My eyesight doesn't seem to have changed at all since my diagnosis anyway. I thought I'd just chip in my experience to help OP with their fears.

 

[everydayupsanddowns]

I’ve had a sequence of ‘background changes’ letters and ‘all clear’s over the years (currently all clear again). I’m not 100% sure whether the ‘background changes’ are simply false positives, or whether the next screening person just misses them as too small.

I think @Eddy Edson has shared some information in the past about the rate of false positives (or false negatives) in these very early changes, which are often very tiny changes.

 

[trophywench]

Well - any amount of extra glucose that should not be in the blood in the first place, since your own naturally produced insulin and your entire bodily system should prevent there being too much in circulating blood -is what not only damage the teeny thin veins that feed into the eye sockets but also the teeny thin nerve endings here there and in all sorts of places, internal and externally everywhere in your body - and cause damage to them. Hence 'good quality' in the context of glucose content thereof = completely normal so well oxygenated blood with nothing in it that should not be there.

At times over the last 50+ years I have had background retinopathy if my annual HbA1c result has been higher than it should have been but ensuring I then take extra efforts to avoid high BG on an ongoing basis has meant I have avoided sight difficulties and needing any direct treatment for retinopathy and 99% of associated eyesight problems. Ditto neuropathy.