Background Retinopathy Diagnosis advice-

[courtanddco]

Hi, I'm Courtney. I'm 24 (25 next month) and I've been a diagnosed T1 diabetic since I was 11. Today, I recieved news from my most recent diabetic retinal scan that I have background retinapathy. To put it midly, I have been in bits. Whilst my management of my diabetes has varied (especially at university), I have been proactive in managing my glucose levels, loosing weight and even getting active. What really has blown my mind with this news is that after talks with my chronic health care team, we actually reached the decision to LOWER my insulin doses after my latest HbA1c result as I've transitioned to a keto-diet to help manage my levels. I just can't help but thing everything I do now is pointless... that I've been diagnosed with BDR at such a young age, that there is no way that it won't progress and get worse. I've even had thoughts that because of this now, there will be no point in me learning to drive, having children, or doing anything meaningful as my vision is bound to go. What makes this even worse for me is that I have pretty bad vision anyway... I can't remember the specs, but without my lens being thinned down my lens are a whopping 1.6cm thick.

I guess I want to hear about anyone who's been diagnosed with diabetic retinopathy - how long has it stayed at that stage for? Can I request treatments such as lazer vision at this early stage? Any tips with managing my thoughts? To add the icing ontop of the case, I was also diagnosed with an underactive thyroidd this week, so I am sorry for the pity party - but if anyone wants to join in, welcome!!!!

Many thanks.

 

[Monica_JJ]

I was diagnosed three years ago, when I couldn't accept this at all, I thought diabetes only happened in the elderly, and it disrupted some of my life plans;

I think diabetes is unfair and annoying because I didn't do anything excessive that caused me to have diabetes. My father, who also has type 2 diabetes, helped me a lot and told me that negative emotions won't help make your life better.

Slowly I have accepted it, maybe a little longer, we can get along better with diabetes.

 

[courtanddco]

I was diagnosed three years ago, when I couldn't accept this at all, I thought diabetes only happened in the elderly, and it disrupted some of my life plans;

I think diabetes is unfair and annoying because I didn't do anything excessive that caused me to have diabetes. My father, who also has type 2 diabetes, helped me a lot and told me that negative emotions won't help make your life better.

Slowly I have accepted it, maybe a little longer, we can get along better with diabetes.

I'm really sorry you went through that! My father also has type 2, and as bad as it sounds, I find myself 'jealous' that he has not had his diagnosis for that long, and later in life too!

I think I came to terms with my diabetes a while back. I even convinced myself that 'it wasn't that bad'. I think what I'm struggling to come to terms with at the moment is the complications that have come with diabetes. Whilst I agree that we can all get along better with it, I can't help but feel that it's too little too late now.

 

[PenguinMum]

Hi Courtney I am sorry you got this shock but I have heard of diabetics on here who have had that result from the annual scan but the next one was clear. It depends really on if the medics reviewing your scan decide you need some treatment or just be vigilent. I discovered I had Retinal Vein Occlusion (micro vein bleeds or leaky veins) about 4 years ago when my new glasses didnt seem to be quite right. I was referred to Opthamology at the hospital and got seen quite quickly and have had constant treatment since To keep my condition from deteriorating further. The treatments available these days are quite groundbreaking (in my case regular injections) and I am hugely grateful.
My advice to you would be try to check via your GP or the screening service if any treatment is required just to stop you worrying though I am sure you will hear from them if thats relevant. I don’t think you should jump to conclusions about driving, having children, etc. I was advised to keep good diabetic control and report any changes to my sight. Btw I am a lot older than you and I understand your worry. Best wishes.

 

[Ronancastled]

Today, I recieved news from my most recent diabetic retinal scan that I have background retinapathy. To put it midly, I have been in bits.

I was diagnosed in 2019, first scan 3 months later showed BR in one eye, 2 Microaneurysms in one eye.
My A1c was only 6.9%(52) so I felt very hard done by, like you I developed anxiety.
Anyway, I got my A1c back in the normal zone & every scan since has come back all clear.

I did some reading & found that 12-15% of the general population can have BR at any time.
BP is also a contributing factor as is smoking, weightlifting & car crash victims.

 

[Antje77]

I just can't help but thing everything I do now is pointless... that I've been diagnosed with BDR at such a young age, that there is no way that it won't progress and get worse. I've even had thoughts that because of this now, there will be no point in me learning to drive, having children, or doing anything meaningful as my vision is bound to go.

I believe we have quite a few members who've had background retinopathy for decades and still see well. Just from memory (and I might be mistaken, if so, my apologies), let me tag @EllieM , @Grant_Vicat and @Jaylee for you, their stories may help!

What really has blown my mind with this news is that after talks with my chronic health care team, we actually reached the decision to LOWER my insulin doses after my latest HbA1c result as I've transitioned to a keto-diet to help manage my levels.

How do you adjust your insulin doses? Do you carb count and dose based on what you eat?
If you lower your carb intake it seems a given to me that you need to lower your insulin as well, or you'd be having hypos all the time.
Do you use a Libre or CGM?

 

[Grant_Vicat]

Hi, I'm Courtney. I'm 24 (25 next month) and I've been a diagnosed T1 diabetic since I was 11. Today, I recieved news from my most recent diabetic retinal scan that I have background retinapathy. To put it midly, I have been in bits. Whilst my management of my diabetes has varied (especially at university), I have been proactive in managing my glucose levels, loosing weight and even getting active. What really has blown my mind with this news is that after talks with my chronic health care team, we actually reached the decision to LOWER my insulin doses after my latest HbA1c result as I've transitioned to a keto-diet to help manage my levels. I just can't help but thing everything I do now is pointless... that I've been diagnosed with BDR at such a young age, that there is no way that it won't progress and get worse. I've even had thoughts that because of this now, there will be no point in me learning to drive, having children, or doing anything meaningful as my vision is bound to go. What makes this even worse for me is that I have pretty bad vision anyway... I can't remember the specs, but without my lens being thinned down my lens are a whopping 1.6cm thick.

I guess I want to hear about anyone who's been diagnosed with diabetic retinopathy - how long has it stayed at that stage for? Can I request treatments such as lazer vision at this early stage? Any tips with managing my thoughts? To add the icing ontop of the case, I was also diagnosed with an underactive thyroidd this week, so I am sorry for the pity party - but if anyone wants to join in, welcome!!!!

Many thanks.

Hi @courtanddco and thanks for the tag @Antje77 . I remember a day like that in 1979:

 

[Grant_Vicat]

Hi @courtanddco and thanks for the tag @Antje77 . I remember a day like that in 1979:

For some reason it refused to accept what I had written so I shall try again!
One evening, in my first year at King’s, I was sitting at my desk, amazingly doing some work, when I was suddenly unable to see out of my right eye. It was as if a bottle of drawing ink had been poured into the eyeball. Various ideas flooded into my imagination, almost as rapidly as the real substance into my sight. Blind panic took control. I ran down Champion Hill and across Denmark Hill, straight into the Hospital, I would guess in under sixty seconds. Arriving at Accident and Emergency, I was greeted by the ubiquitous unsympathetic gaze of a receptionist:



“What’s your problem?”

“I can’t see out of my right eye.”

“Who sent you here?”

“I did.”

“Did you contact your GP?”

“Listen, I’m an outpatient here and I’m diabetic” (magic words).

“Oh, I see, do you know your Hospital Number by any chance?”

“Yes, A153034.”

“Fantastic. Ah, Mr Vicat. I see from your notes that retinopathy has been noted. I’ll get someone to attend to you.”

A doctor duly appeared and informed me that I had had a haemorrhage and that nothing could be done until it had cleared enough to see what damage had occurred. I was put under the care of Mr E.W.G. Davies, a short, wire-rimmed-bepectacled man with whispy grey hair, twinkly beaming eyes and an everlasting supply of Fox’s Glacier Mints stuffed into his white coat. I found this ironic, seeing that the majority of his patients were diabetic! During one of his consultations in my second year he asked me about my life. I told him that I was living in Kensal Rise; that I cycled into King’s College in the Strand every day; that I played squash; and that I drank moderately (I’m sure he didn’t fall for this). His response was that I should stop burn-ups on the Edgeware Road, that I should avoid squash, moderate my alcohol intake, and that I should shun aerobic exercise or anything that would make me red in the face. If I did not heed his words, I would be blind by the time I reached twenty-three.



“Thank you” I said. “Do you realise that in one sentence you have ruled out all the finer points of living?”



To say that I was depressed would be accurate, but somewhat insufficient. What was the point of carrying on in London? Was I likely to experience any of the ambitions I might entertain? Would I ever see my children? Worse still, would I ever have any? Would I ever drive and explore my country, let alone the World? How could I learn any more music? These were just some of the thoughts that spun round in my head, as though my brain had been sucked into a tumble dryer.

 

[Grant_Vicat]

For some reason it refused to accept what I had written so I shall try again!
One evening, in my first year at King’s, I was sitting at my desk, amazingly doing some work, when I was suddenly unable to see out of my right eye. It was as if a bottle of drawing ink had been poured into the eyeball. Various ideas flooded into my imagination, almost as rapidly as the real substance into my sight. Blind panic took control. I ran down Champion Hill and across Denmark Hill, straight into the Hospital, I would guess in under sixty seconds. Arriving at Accident and Emergency, I was greeted by the ubiquitous unsympathetic gaze of a receptionist:



“What’s your problem?”

“I can’t see out of my right eye.”

“Who sent you here?”

“I did.”

“Did you contact your GP?”

“Listen, I’m an outpatient here and I’m diabetic” (magic words).

“Oh, I see, do you know your Hospital Number by any chance?”

“Yes, A153034.”

“Fantastic. Ah, Mr Vicat. I see from your notes that retinopathy has been noted. I’ll get someone to attend to you.”

A doctor duly appeared and informed me that I had had a haemorrhage and that nothing could be done until it had cleared enough to see what damage had occurred. I was put under the care of Mr E.W.G. Davies, a short, wire-rimmed-bepectacled man with whispy grey hair, twinkly beaming eyes and an everlasting supply of Fox’s Glacier Mints stuffed into his white coat. I found this ironic, seeing that the majority of his patients were diabetic! During one of his consultations in my second year he asked me about my life. I told him that I was living in Kensal Rise; that I cycled into King’s College in the Strand every day; that I played squash; and that I drank moderately (I’m sure he didn’t fall for this). His response was that I should stop burn-ups on the Edgeware Road, that I should avoid squash, moderate my alcohol intake, and that I should shun aerobic exercise or anything that would make me red in the face. If I did not heed his words, I would be blind by the time I reached twenty-three.



“Thank you” I said. “Do you realise that in one sentence you have ruled out all the finer points of living?”



To say that I was depressed would be accurate, but somewhat insufficient. What was the point of carrying on in London? Was I likely to experience any of the ambitions I might entertain? Would I ever see my children? Worse still, would I ever have any? Would I ever drive and explore my country, let alone the World? How could I learn any more music? These were just some of the thoughts that spun round in my head, as though my brain had been sucked into a tumble dryer.

All this was written in 2009. I still read, write, draw, play piano/organ; have a wonderful 38 year old daughter and nearly 11 year old granddaughter: I last had primitive laser treatment in both eyes in 1983. Beware standard letters about background retinopathy - surely one of the most disturbing bits of information anyone can receive other than terminal issues? Many patients must have been needlessly terrified. I hope this inspires you to live a great life. Just keep as well controlled as possible - it will derail as I'm sure you know. Good luck!

 

[Lainie71]

I have had the same and I could tell which eye it was, the one I have always had problems with! I was told that if my sugars are maintained at a good stable level then there should be no more change and I will be tested again in a year. I was devastated to be honest but have put it now at the back of my mind to concentrate on bg control/diet etc and try to control the anxiety, depression and goodness knows what other mental health problems I have/having. As others have said, they have had the same shocking background retinopathy letter and tested later on and no sign. Even my optician said it all seemed normal from what she could tell, without using the tests the nhs eye screening does. All in all I felt better after her opinion and my doctors. As if being a diabetic isn't hard enough without sending letters like that - its just beyond me. Makes me wonder if they think the "shock" factor will submit you into submission to sit down, no better still lie down and not move ever again!

 

[courtanddco]

I believe we have quite a few members who've had background retinopathy for decades and still see well. Just from memory (and I might be mistaken, if so, my apologies), let me tag @EllieM , @Grant_Vicat and @Jaylee for you, their stories may help!

How do you adjust your insulin doses? Do you carb count and dose based on what you eat?
If you lower your carb intake it seems a given to me that you need to lower your insulin as well, or you'd be having hypos all the time.
Do you use a Libre or CGM?

Exactly that! It's been a little difficult as I've been eating virtually no carbs, so I did keep dropping. I dropped to 3.3 the other day as I (stupidly) didn't lower my dosage, as I've always lived by the concept that 'lower blood sugars is better than high ones', which is really bad, I know. I use the Accu-check mobile, but I finally have an appointment for the CGM (the Libre Freestyle one) at the end of this month.

Thank you for tagging them! I think my worry is how long that the BR stays as background for, before progressing to the next stage. I've seen contradicting things, with one paper saying that it progresses to the next level within 24 months... my worry is that whilst I've been diagnosed with BR, they are still only seeing me once a year, whilst me, in all my panic, would probably be happy with having a scan once a week at this point!!!

 

[courtanddco]

Hi Courtney I am sorry you got this shock but I have heard of diabetics on here who have had that result from the annual scan but the next one was clear. It depends really on if the medics reviewing your scan decide you need some treatment or just be vigilent. I discovered I had Retinal Vein Occlusion (micro vein bleeds or leaky veins) about 4 years ago when my new glasses didnt seem to be quite right. I was referred to Opthamology at the hospital and got seen quite quickly and have had constant treatment since To keep my condition from deteriorating further. The treatments available these days are quite groundbreaking (in my case regular injections) and I am hugely grateful.
My advice to you would be try to check via your GP or the screening service if any treatment is required just to stop you worrying though I am sure you will hear from them if thats relevant. I don’t think you should jump to conclusions about driving, having children, etc. I was advised to keep good diabetic control and report any changes to my sight. Btw I am a lot older than you and I understand your worry. Best wishes.

I think that is where some of the frustration has kicked in. At my normal opticians appointment (I hadn't had new frames in 3 years because of COVID!), my optician told me I had blood behind my eye. My diabetic eye scan was organised for after, so when I mentioned that to my scanner, they thanked me and said they'd keep an eye out. According to my scanner, my optician was talking a load of toffee as they could 'see' nothing on the scan, and that I'd have the letter confirming what she'd seen in the next few weeks. And then, despite that, I had the letter saying I had background retinopathy. They've really taken me on a rollercoaster ride. I haven't been referred to anyone, and I've just been advised to talk to my GP if I have concerns... but I won't lie, I am frustrasted because I want some sort of treatment now before it can progress (which I know is unreasonable).

That's what my family have been telling, but my worry is that if I do learn how to drive, then how long before my vision worsens? Pregnancy is a lot harder on diabetics too, so it's just me thinking if I want to preserve my sight / if it gets worse, there's going to be some things I shouldn't do.

Thank you for your response though!

 

[courtanddco]

I was diagnosed in 2019, first scan 3 months later showed BR in one eye, 2 Microaneurysms in one eye.
My A1c was only 6.9%(52) so I felt very hard done by, like you I developed anxiety.
Anyway, I got my A1c back in the normal zone & every scan since has come back all clear.

I did some reading & found that 12-15% of the general population can have BR at any time.
BP is also a contributing factor as is smoking, weightlifting & car crash victims.

I wasn't told if it was in both eyes - that will be my next course of action, and thank you for letting me know that.

It's a nightmare isn't it? I think that is what is worse, I can't do anything to 'cure' this now. How does it come back clear, if you don't mind me asking? Everything I have read has said that DR can't be cured, only halted / slowed down once the diagnosis is made?

I didn't know that - I read something like around 42% of diabetics after 15 years have some sort of DR, so that is interesting! Thank you for reaching out, it has made mde feel better.

 

[Jaylee]

Hi @courtanddco ,

Welcome to the forum..

Firstly. In my 20’s I thought I was indestructible.. Been off the rails..
However, retinopathy has not been my issue. I was diagnosed back in 1976 as an 8 year old. (8th birthday to be precise.)
No pun intended, I’ve seen eye scans improve in technique in recent years.. (all digital. Detected earlier before major damage.)
There was a time when when they just sorta peered at the retinas. Which is fine if the eye person has the vision of a “sniper?”
Then there were Polaroid instant shake & bake pictures.. looked like fuzzy close ups of Mars..

Now when I say I have no issue with retinopathy. I was diagnosed a few years back with Macular oedema. (Don’t look it up.)
Never heard of it before. All happened after a bull in a china shop attempt at tiding up my BG management?
Felt like a kick in the teeth.
I read later that short sharp shocks at lowering A1cs can affect the eyes..

All I can say is, you don’t need to stop your plans, putting life on ice..?

The only thing I needed to stop was using “accessibility” on my devices & my phone camera as a magnifier for the “small print.”
I still retain the privilege to drive.. There is some great treatment out there..

Best wishes,

Jaylee.

 

[Ushthetaff]

I’ve had diabetes since d for years and rubbish blood sugar control , in my late 20s I had laser treatment in my left eye , I’ve had retinopathy checks every year since and every year I have had the same letter from the consultants some background diabetic changes but nothing to be worried about , I use to wear glasses for driving for years but about 5 years ago went to opticians and was told I didn’t need them any more , I have a retinopathy check in a few months and I’m quite confident I’ll get the same response I have had for the past 30 years

 

[courtanddco]

I have had the same and I could tell which eye it was, the one I have always had problems with! I was told that if my sugars are maintained at a good stable level then there should be no more change and I will be tested again in a year. I was devastated to be honest but have put it now at the back of my mind to concentrate on bg control/diet etc and try to control the anxiety, depression and goodness knows what other mental health problems I have/having. As others have said, they have had the same shocking background retinopathy letter and tested later on and no sign. Even my optician said it all seemed normal from what she could tell, without using the tests the nhs eye screening does. All in all I felt better after her opinion and my doctors. As if being a diabetic isn't hard enough without sending letters like that - its just beyond me. Makes me wonder if they think the "shock" factor will submit you into submission to sit down, no better still lie down and not move ever again!

I've only just found out it can only be in one eye, and I'm going to ask as I am the same! Even with an updated description, I can't see as far with one eye and I've always relied on my other eye anyway. I feel the same, and I am frustrated because my blood sugars have been maintained.

Hi @courtanddco ,

Welcome to the forum..

Firstly. In my 20’s I thought I was indestructible.. Been off the rails..
However, retinopathy has not been my issue. I was diagnosed back in 1976 as an 8 year old. (8th birthday to be precise.)
No pun intended, I’ve seen eye scans improve in technique in recent years.. (all digital. Detected earlier before major damage.)
There was a time when when they just sorta peered at the retinas. Which is fine if the eye person has the vision of a “sniper?”
Then there were Polaroid instant shake & bake pictures.. looked like fuzzy close ups of Mars..

Now when I say I have no issue with retinopathy. I was diagnosed a few years back with Macular oedema. (Don’t look it up.)
Never heard of it before. All happened after a bull in a china shop attempt at tiding up my BG management?
Felt like a kick in the teeth.
I read later that short sharp shocks at lowering A1cs can affect the eyes..

All I can say is, you don’t need to stop your plans, putting life on ice..?

The only thing I needed to stop was using “accessibility” on my devices & my phone camera as a magnifier for the “small print.”
I still retain the privilege to drive.. There is some great treatment out there..

Best wishes,

Jaylee.

Haha, that was me in my teens! Didn't expect anything could ever go wrong. I didn't know that! Whilst my blood sugars have been 'okay', I definetly went cold turkey with switching to keto, so that is interesting to hear. Yes, now that I'm calmer, I definetly feel that knowing 'sooner' before any severe damage is caused is a lot better. The driving has made me feel a lot better, as that was my largest concern (as on my provisional, I wasn't happy to hear I need to be reassessed every 3 years!). Many thanks for reaching out.

 

[courtanddco]

I’ve had diabetes since d for years and rubbish blood sugar control , in my late 20s I had laser treatment in my left eye , I’ve had retinopathy checks every year since and every year I have had the same letter from the consultants some background diabetic changes but nothing to be worried about , I use to wear glasses for driving for years but about 5 years ago went to opticians and was told I didn’t need them any more , I have a retinopathy check in a few months and I’m quite confident I’ll get the same response I have had for the past 30 years

That's amazing to hear - and really reassuring that in fact, your vision no longer needs correction despite the diagnosis of BR! Good luck on your next check.

 

[EllieM]

Thanks for the tag @Antje77


I've been T1 since 1970 (age 8) and son in my childhood years I was pre glucometer. Dietary advice and insulin regimes have varied though I did appreciate my first glucometer and now love my cgm.


I've had regular eye checks throughout my adult life and for the last few decades I have had on again off again background retinopathy, which has never progressed to needing laser treatment, even though I was told in my twenties that it was expected that I'd need laser treatment in my thirties. And no, I am no poster child for perfect diabetic control.

I think my retinopathy has now stabilised at "on" but they still don't think it needs treatment. You have to remember that though most very long term diabetics get background retinopathy, very very few actually lose their sight. I would argue that this is partly because the treatment for diabetic eye disease has improved so significantly over the decades, and partly because the treatment for diabetes has too. (I know it's only an n=1 sample, but in the generation above me my T1 mum eventually died at 78, still able to see and drive, and it was the smoking not the diabetes that killed her. Yes, she did have laser treatment for retinopathy)


@courtandco please don't panic. The screening tests are there so that they can treat you if you need treatment. One "you have background retinopathy" result doesn't mean you are going to go blind now, in 5 years time or in the future.

and I am frustrated because my blood sugars have been maintained.

My understanding (possibly incorrect)) is that it takes time for changes in bgs to feed through to your eyes. What was your control like two years ago? (Mine was absolutely awful in my preglucometer teens).


And my main problem with my eyesight now is that I have a cataract on one eye so they can't check its retina properly. Hence my diabetes has pushed me ahead in the queue for cataract surgery.

 

[Ushthetaff]

I had same problem with cataracts in both eyes I had to have “slit screen“testing whenever I went to retinopathy checks ! I’ve jus5 had one cataract done what a difference !

 

[Kessi]

I believe we have quite a few members who've had background retinopathy for decades and still see well. Just from memory (and I might be mistaken, if so, my apologies), let me tag @EllieM , @Grant_Vicat and @Jaylee for you, their stories may help!

How do you adjust your insulin doses? Do you carb count and dose based on what you eat?
If you lower your carb intake it seems a given to me that you need to lower your insulin as well, or you'd be having hypos all the time.
Do you use a Libre or CGM?

I’ve had background retinopathy for 23 yrs and have had no issues I do get my eyes scanned every year and all is well so far.