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Help re background retinopathy

J

jackieroberts1

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4
Hi all

I don't know if anyone can help (I'm sure there are many!). I have had diabetes for approx 37 years without any complications. Last year I was told I had minor changes when had eyes tested - nothing to be done just get checked every year. I've just had them done again and had a diagnosis of background retinopathy. I'm freaking out a bit having read the complications. Plus is the first diagnosis the same as the second or does it mean my eyes have got worse in a year??? Can anyone give me any useful support on how to help this? Is there anything that will make it better or will it stay? get worse etc? I thought it would stay and progress but having read through a few posts not really sure now.

Any help would be greatly received.

Thanks

Jackie
 
Jackie,

Background retinopathy doesn't always lead to further complications, much is dependent upon how tight you keep bg control, blood pressure and cholesterol control from here on. There are no guarantees in life and even people who follow this advice can still develop the next stage, but your consultant will no doubt tell you the tighter the control the less chances they is of the condition progressing.

Ask your consultant for advice, and try to eat a well balanced diet of fresh fruit and vegetables, apparently the darker the vegetable the better, I know green veggies are supposed to be extremely beneficial to eye health, and I try to eat at least 2-3 portions each day.

Here is a fantastic site that gives out some excellent information:

http://medweb.bham.ac.uk/easdec/

Nigel
 
Thanks Nigel

Obviously having had it for nearly 37 years - when they were really strict on your diet - I do eat very well. In all these years I've had 1 Hb1ac of 8 and all the rest have been 7.2 and under - which is some going - especially when pregnant! So my control is very tight. I know pregnancy can trigger it off also and to say my control has always been so tight my baby had all the problems you can think of when born - hypo and major liver problems - which turned out to be an immature liver due to my diabetes! So I'm probably going to be one of the unlucky ones! I know the longer you have it the higher your risk - no matter how tight your control has been but you just never think its going to happen to you do you :-(!

I'm also a bit confused with the clinc as I rang them today. They told me I had to speak to the people that took the photographs of my eyes but there's no clinic today and I have to wait till Monday. It's all a bit bizzare really cos the photographer told me that she couldn't even see the changes they had mentioned last year - let alone anything new????

Guess I'll just have to keep my fingers crossed and hope for the best. I thought there would be more people with b/g retinopathy.

Thanks again for taking the time to respond.

Jackie
 
Hi jackie,

Good advice from Nigel.
Have a friend who received a letter to say that changes were noticed and some background retinopathy discovered. Follow up in a year!!!! I think the letters are badly worded as you have a year to worry and wonder.
When she went back a year later, nothing was detected.

Hope this helps,

Take care,
Catherine.
 
Thanks Catherine for that - she wouldn't happen to be in the Derbyshire area by any chance would she. When I called the eye clinic (Derby) they said that the wording had been changed on many letters and it was probably no different to what I'd had last year! Well I know that background changes and background retinopathy are certainly different - and my diabetic nurse confirmed so when I asked her. I don't think anyone who changes these types of letter has any idea what an effect it can have on people. Like I said I know I've had it for a v long time but I'm still relatively young (41) and the thought that at the extreme I could be blind in a year or 2 is v scarey as this letter indicates that there have been changes in a year!! Will see what the clinic say on Monday.

Thanks again

Jackie
 
Hi jackie,
She lives in West Sussex. IMHO, the people who compose these letters are not diabetic and have no idea of the impact it has on the recipient.

Hope all goes well for you.

Catherine.
 
Hello,

I received what sounds to be the same letter this Saturday. I am 31 and have had type 1 diabetes for nearly 26 years. My first daughter was born in January and I hope to have at least one more but obviously with the letter I now have concerns. Thank goodness my daughter Faye has no health issues, touch wood. My long term bloods have always been pretty good around 7. During pregnancy they went down to 6.3% and 6.1%. I am now breast feeding and my control is not as good as it could be but i was told that 6 months of varying control would not be anything to worry about. Given the recent letter advising i have background retinopathy I think it is and am putting myself on a strict low fat, 7 a day diet. I read on another post the supplement lutein cleared it up but everything i have read suggests once it happens it doesn't go away. I am also now taking eye q capsules in the hope this will help. I also read 30 - 120 mins exercise a day helps. I have always struggled with hypos and exercise so going to start brisk walks which don't have any major detriment to my control and i usually take Faye out for a walk a day. I don't know what more i can do than i am already doing. I am annoyed as had photos taken in April and got result this Saturday and i saw the consultant on Thursday who didn't mention it at all. Lots of calls to be made on Monday to get more advice. I will share what I find out.
 
Hi

My son Zac has type 1. He was diagnosed just 18 months ago. He has had nothing higher than 9.0 for his HBA1C'S. Zac had screening 2 weeks ago and got a letter friday saying he had background retinopathy. I have flowered over it right now for Zac-however I am just so worried, nobody has been able to give me any advice they just say make sure he comes every year. Well of course he is going to go every year. I just wonder if any else has had this issue with their child. He is 14 years old.The HBA1C of 9.0 was his first after diagnosis. Following Hba1c's have been in the 7's.

Thanks for reading

Emma
 
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