Pre proliferative retinopathy

[Miriam12345]

Hello everyone, I am 26 and I have been told I have pre proliferative retinopathy. I wondered if anyone could shed light on whether this is reversible? I have been diabetic for 20 years, and I have been finding controling bloods harder, but now I guess this shock has really kicked me up the backside. If anyone else has had the same diagnosis, or can give me a bit of info, I would be so greatful!

 

[vic hill]

simple i going to say this happen to me way back i 1985 get the best contol you can bear in mind you have to work and live
bloods how are they good bad are you on insulin if you can afford it free style libre even for 14 dayosce in a while will help you adjust give very good reading overnight so it now study the food you eat what you do for work.
stress some is good but a lot is not steady walks if you do got high work out why and doing adjustments stay safe vic
63 years on insulin

 

[Miriam12345]

simple i going to say this happen to me way back i 1985 get the best contol you can bear in mind you have to work and live
bloods how are they good bad are you on insulin if you can afford it free style libre even for 14 dayosce in a while will help you adjust give very good reading overnight so it now study the food you eat what you do for work.
stress some is good but a lot is not steady walks if you do got high work out why and doing adjustments stay safe vic
63 years on insulin

I am on insulin, I have the freestyle libre, but under a lot of stress so it has been more difficult to manage. I have seen another thread saying this can be reversed. I am going to be more careful, I am already adjusting insulin, but I have lumps all over my body. I have to inject an hour before I eat, to make sure I don't have a high... I think that is one of the main problems (along with the stress)

 

[Hopeful34]

Did your diagnosis come about after a routine diabetes screening photograph of the back of your eyes? I've read of people getting this diagnosis one year, and a year on when they had the screening, it was all ok. Have you been told they'll call you back in a year? Minor changes can sometimes be seen one year, and gone the next. Hope it all settles down for you. Stress can have such an impact on our blood sugars can't it. Take care.

 

[MarkMunday]

... I have been told I have pre proliferative retinopathy. ... If anyone else has had the same diagnosis, or can give me a bit of info, I would be so greatful!

Most peole who have been T1 for 20+ years have had pre-proliferative retinopathy. Also called 'background retinopathy'. There are some microaneurysms, which means there are some blockages. But they are not so bad that new blood vessels, which often burst, have opened up. I had it for years but it went away after switching to low carb eating and reducing HBA1c.

 

[EllieM]

I've had on again off again background retinopathy for years/decades. Back in my twenties I was told I'd probably need laser treatment by the time I was 40 (30?) but it has continued to come and go, improving whenever I tighten my control. No treatment has been required yet, and I'm now 58 (50 years T1). My ophthalmologist was particularly concerned about the negative affects of rapidly changing sugar levels.

 

[vic hill]

ok STRESS how do you release some of it Running Walking Music what do you love doing if so do more shopping
not much chance of that at present swimming talking to friends also joining a local group via hospital or clinic try
it i did got hooked for a group 25 years why to try and help folk like you my dear .
before mobile phone and laptops
now my freestyle LIBRE my one is reading 2 units low this 14 days as always have check with ACCU-CHEK blood stick still run in tandem so it get the best of both tests also a low carbohydrate diet also brown bread is better than white WHY slow release of carbs cereal be very care full of some get a carb book ,or in fo plenty of APPS DO THIS GOOD LUCK PS WHAT IS YOUR HBAC1
PS IF MONEY OR WORK is problem talk to folk parents friends etc try to cover most things ie only dec is the shortest months 21 dec then the night draw out very slowly the we may have virus cure but ...VIC

 

[vic hill]

one hour before meal what of insulin are you on mine is novo rapid 30 mins before
ref sights my arms are shot my legs were ok but the last few years tummy size of needle 6mm/8mm steel cannot do all this Teflon stuff used 2 days not good for me but thousands used it vic
also i am on a pump 14 years

 

[Mrs T 123]

Most peole who have been T1 for 20+ years have had pre-proliferative retinopathy. Also called 'background retinopathy'. There are some microaneurysms, which means there are some blockages. But they are not so bad that new blood vessels, which often burst, have opened up. I had it for years but it went away after switching to low carb eating and reducing HBA1c.

May I ask what you reduced your HBA1c to for it to disappear completely - I too have on/off but the last couple have been on and I think I have control so not quite sure why it is as I have been in control for last 3 years.

 

[MarkMunday]

May I ask what you reduced your HBA1c to for it to disappear completely - I too have on/off but the last couple have been on and I think I have control so not quite sure why it is as I have been in control for last 3 years.

We are all different and blood glucose as measured by HBA1c is not the only factor. For me background retinopathy disappeared when HBA1c fell below about 7% (53mmol/m). I suspect time-in-range, stress etc are also issues.

 

[Miriam12345]

Did your diagnosis come about after a routine diabetes screening photograph of the back of your eyes? I've read of people getting this diagnosis one year, and a year on when they had the screening, it was all ok. Have you been told they'll call you back in a year? Minor changes can sometimes be seen one year, and gone the next. Hope it all settles down for you. Stress can have such an impact on our blood sugars can't it. Take care.

Thank you, they said they had seen it, and I have an appointment in February, 3 months after my last screening.

 

[Miriam12345]

Most peole who have been T1 for 20+ years have had pre-proliferative retinopathy. Also called 'background retinopathy'. There are some microaneurysms, which means there are some blockages. But they are not so bad that new blood vessels, which often burst, have opened up. I had it for years but it went away after switching to low carb eating and reducing HBA1c.

Thank you Mark, that's really settling my worries. Last few days my highest reading has been 10, which I know isn't great, but I am getting it down slowly. I have heard about the low carb diet, and I am have started cutting out carbs.

 

[Miriam12345]

I've had on again off again background retinopathy for years/decades. Back in my twenties I was told I'd probably need laser treatment by the time I was 40 (30?) but it has continued to come and go, improving whenever I tighten my control. No treatment has been required yet, and I'm now 58 (50 years T1). My ophthalmologist was particularly concerned about the negative affects of rapidly changing sugar levels.

Thank you so much Ellie, I am so greatful you have shared your story. Maybe I needed this shock to tighten my control, but I am glad to hear stories like yours that calm my worries.

 

[Miriam12345]

ok STRESS how do you release some of it Running Walking Music what do you love doing if so do more shopping
not much chance of that at present swimming talking to friends also joining a local group via hospital or clinic try
it i did got hooked for a group 25 years why to try and help folk like you my dear .
before mobile phone and laptops
now my freestyle LIBRE my one is reading 2 units low this 14 days as always have check with ACCU-CHEK blood stick still run in tandem so it get the best of both tests also a low carbohydrate diet also brown bread is better than white WHY slow release of carbs cereal be very care full of some get a carb book ,or in fo plenty of APPS DO THIS GOOD LUCK PS WHAT IS YOUR HBAC1
PS IF MONEY OR WORK is problem talk to folk parents friends etc try to cover most things ie only dec is the shortest months 21 dec then the night draw out very slowly the we may have virus cure but ...VIC

Vic, what a wonderful post. I am trying low carb, I also do finger pricks aswell as I know there can sometimes be quite a difference. Thank you for all the advice you have sent me, it is wonderful to have so much advice at the tip of my fingers. Thank you.

 

[Miriam12345]

one hour before meal what of insulin are you on mine is novo rapid 30 mins before
ref sights my arms are shot my legs were ok but the last few years tummy size of needle 6mm/8mm steel cannot do all this Teflon stuff used 2 days not good for me but thousands used it vic
also i am on a pump 14 years

Novorapid, but I inject everywhere... Because I have lumps, everywhere! I deffo need to see the nurse but unfortunately my hospital still aren't open for visits.

 

[Miriam12345]

We are all different and blood glucose as measured by HBA1c is not the only factor. For me background retinopathy disappeared when HBA1c fell below about 7% (53mmol/m). I suspect time-in-range, stress etc are also issues.

Thank you, I agree, more stress this year than any previous.

 

[Hazmattmum]

I have recently been diagnosed with Diabetic retinopathy & have to go for an eye injection on Thursday. Frankly I`m not looking forward to this. Anyone else had this treatment & can reassure me its not going to be as bad as I am imagining?

 

[Miriam12345]

I have recently been diagnosed with Diabetic retinopathy & have to go for an eye injection on Thursday. Frankly I`m not looking forward to this. Anyone else had this treatment & can reassure me its not going to be as bad as I am imagining?

Bless you, good luck for the injection. Usually things always seem scarier than they are. I haven't had one, but I can definitely understand the worry. Hope it goes well.

 

[vic hill]

I KNOW A MAN IN NORWICH WHO HAS IT DONE very brave ps it does do a very wonder full job
stay safe vic

 

[RhianSamuel]

Thank you, they said they had seen it, and I have an appointment in February, 3 months after my last screening.

How did your appointment go? I hope you don't mind me asking, I have a referral appointment next week (5 months after being referred) and I'm so anxious about it x