Background retinopathy

[Elc1112]

Hi all,

I have been diabetic for over 20 years now. For the most part, my diabetes has been well controlled and HbA1c levels kept below 7.5 (my control did slip between the ages of 14 and 17 but has been back on track since then).

I had my annual retinopathy check in January and have been told that I have some background retinopathy in one eye. I have been told that I do not need treatment at this stage.

Like most diabetics, I have been aware of the risk of diabetic complications for a long time. It all seems a little bit more real now it has actually happened, though.

Just wondering if there is anybody else out there who has been told that they had background retinopathy? Has it progressed/improved? Any help or advice would be greatly appreciated. I have been diabetic for almost 21 years, last HbA1c was 7.2, cholesterol level is normal, blood pressure of 110/75.

Be great to hear from others who have experienced similar problems.

E

 

[cugila]

Hi.
Welcome to the Forum.

Background Retinopathy usually develops because the Bg levels are not that well controlled. If you can get the levels within targets then the problem can usually be reversed or prevented.

It occasionally progresses quickly, but usually changes slowly. If your diabetes and blood pressure are well controlled, and have been all the time you have had diabetes, changes should be very slow (prevention) are controlled

Here is a link all about BR and much more from an excellent website dealing with the problems relating to Retinopathy and much more. Hope it helps.

http://medweb.bham.ac.uk/easdec/back_di ... pathy.html

 

[Elc1112]

Thanks, Cugila

 

[Snodger]

Hi Elc1112,

it might be worth asking them exactly what they mean by 'background retinopathy'. I have microaneurysms which my (extremely good) diabetes consultant told me were nothing to worry about but he wanted to keep an eye on it, rather as you were told. He avoided using the 'r' word, I think because he saw the sheer panic in my face. However I have seen in the medical literature descriptions which include everything from microaneurysms to total blindness as 'retinopathy'. So it could be that you have something like I have.

I had the first one about 8 years ago, and then it cleared itself, but others came in its place. I felt devastated when I heard about the first one - I assumed it meant the beginning of the end even though I'd done everything in my power to keep bgs down - but my doc explained that even non-diabetics get them sometimes. I have had no changes to my vision. I am obsessed with getting my eyes checked, just in case, though.

I know there are others on here who have more experience of the progression of retinopathy so I'll shut up now, but I thought it might be helpful to know that the term can sometimes be used about the less scary end of things as well as the scary stuff.

 

[Elc1112]

Hi Snodger,

Thanks for your response. I have been told that there is a small bleed on one eye. I know that retinopathy has various stages and I have been told that this issue could susbside as long as my sugars are well controlled. The term "retinopathy" just caused a bit of fear! It's really helpfulnto hear from anybody who has had any sort of diabetic eye problems, so thanks again for sharing

E

 

[cugila]

There's loads of posts on here about eye problems, Diabetic or not.

Here's my own little story about my eyesight .........

viewtopic.php?f=18&t=9353&hilit=+eyesight#p87914

 

[Marvin]

Looks like you had the standard retinopathy results letter..... "some background retinopathy, no treatment required". I've had this every year for the last four years since I had my first retinopathy pictures taken. My initial reaction to the first such letter was mild apprehension, and I did query it, but was told that just about everybody has some background retinopathy, but no treatment is required unless more significant problems are found.
So I suggest you stop worrying; I bet you get exactly the same letter next year!

 

[Unbeliever]

I suffer from macular oedema . It began when my bg came down too quickly. The amaryl I had ust started was blamed but i always suspected it was more likely o have been the rosiglitazone I had ust stopped taking,

I have been having treatment for macular oedema for a few years now . My DSN has been trying to get me to go onto insulin but I was reluctant to do so as I thought that my blood sugars wuld probably rise and it would take some time to sort it all out . In the meantime the oedema would probably worsen.


I was very surprised at her suggestion that I should go on to pioglitazone instead . I instinctively felt that I wanted nothing further to do with this class of drugs.
The limk given by Cugila above states quite clearly that it should not be given in cases of macular oedema. I had been discussing my retinopahy with her moments before. I know very well that had I agreed to take his drug the GP would have issued the prescription wihou question.
This makes me very angry. Why should these people be licensed to to cause such potential harm with no proper controls?

Fortunately for me i have a very cautious and suspicious naure And I now read this forum,

 

[bonerp]

Maritine Pine Bark was recommended to me by another forum member. I have retinopathy and in Sept 10 had a vitrectomy in my left eye. To say I was petrified of loosing my sight was an understatement. Still am.
However Since taking this stuff I have found that my left eye has stabilised and my right eye is less prone to bleeding.

I'd say give it a go for a few months - worked for me.

I also take bilberry extract, lutein and grapeseed. Improvements have been much improved since the Pine bark though.

 

[daisy1]

I take bilberry, Omega-3 and flax seed oil capsules all recommended for retinopathy. Preventative measures at the moment thankfully. Just passed my test in January.

 

[jane26]

Hi, I have had type 1 for 33 years. The hospital have always said my blood sugars are very well controlled. But after having diabetes for this number of years even if you are well controlled, your blood sugars are not normal and they do fluctuate a lot more than people without diabetes. Over time this can have an effect on your body, but at a slower rate than someone who is badly controlled. Thankfully I have had no complications at all apart from three years ago when I was told I had background retinopathy which terrified me. I did lots of research on the net. I also contacted an eye specialist in the USA. I started taking benfotiamine, bilberry extract, lutein, omega 3, and R-lipoic acid. My retinopathy has disappeared. The diabetes specialist nurse is now Telling other patients about what I take. My eye specialist said he is not worried at all about my eyes and told me whatever it is I'm doing, I should carry on. Have a look on the Internet. BENFOTIAMINE (thiamine) is something diabetics are lacking. In studies they were able to reverse early changes to the eyes and kidneys by taking this supplement. There are things we can do to help ourselves. Eat healthily, exercise and supplements. It's not all doom and gloom. Good luck.

 

[cugila]

BENFOTIAMINE (thiamine) is something diabetics are lacking. In studies they were able to reverse early changes to the eyes and kidneys by taking this supplement.

Ah.....Benfotiamine and the good old Diabetic Thiamine deficiency story......I have lost count of the times it has been brought up on this Forum and touted as a wonder supplement.......in many quarters it is known as one of the biggest 'quack' supplements going. A manufactured supplement.

Before taking supplements of uncertain efficacy (Benfotiamine) it would be well to determine if you as a Diabetic actually have a Thiamine deficiency which needs remedying. Many that promote the use of Benfotiamine refer to the report that Prof Thornalley from Warwick University puts about from time to time.

In the initial report conclusions in 2007 this was stated....in a study using just 26 type 1 and 48 type 2 Patients.......

Conclusions/interpretation
Low plasma thiamine concentration is prevalent in patients with type 1 and type 2 diabetes, associated with increased thiamine clearance. The conventional assessment of thiamine status was masked by increased thiamine transporter content of erythrocytes.

http://www.springerlink.com/content/r47 ... 04efb&pi=1

He stated in 2008 that ALL Diabetic's were deficient in Thiamine.......somewhere along the line the previously published conclusions changed and he now states this......

The University of Warwick researchers, led by Professor Paul Thornalley, have shown conclusively that diabetic patients are thiamine deficient in blood plasma.

http://www2.warwick.ac.uk/newsandevents ... d_vitamin/

Now that's a bit of a leap from prevalent in just 74 Diabetic's to conclusive for ALL Diabetic's....... :?: The good Prof seems to have made a gigantic leap with NO further evidence.

There is NO evidence that ALL Diabetic's are deficient in Thiamine, just that SOME MAY be. So if you want to waste your money on Benfotiamine find out ALL the facts first.

I'm a Diabetic and I am not Thiamine deficient......if I was I can be prescribed the proper medication to correct that deficiency.......for free ! I know plenty more Diabetic's who are NOT deficient......

 

[jane26]

You obviously work for a drug company. Benfotiamine reversed my background retinopathy. It worked for me and it does no harm. I have taken supplements from the age of 20 which would have included thiamine. 33 years with no complications. Not bad going I don't think.

 

[cugila]

No.....I don't work for anybody.......least of all a drug company. You should never assume anything. Does that mean that I should assume that you work for the people who produce/sell Benfotiamine ? That would be a rather foolish assumption to make surely ?

I just like the Members to know ALL the facts before they partake of something which as I have shown has little evidence that it is of use. To know a bit more about this supplement and how it is promoted.

I am very glad to hear you are free of complications.......so am I without taking any supplements at all. If you find it works for you that is fine........just let's not go overboard on how wonderful life can be using a particular supplement.

ALL Diabetic's are NOT deficient in Thiamine.........

It is a fact that if you are a well controlled Diabetic then some complications can be avoided anyway without the aid of supplements, even reversed in some cases. So, was it the expensive supplement or just the fact that your Diabetes is well controlled which has made you stay complication free.....?

 

[jane26]

I have not always been well controlled. From the age of 14 until age 20 I was in total denial, I didn't ever test my urine or blood glucose. Sometimes I didn't take my insulin. To be honest I'm surprised I'm still alive. I became a bit more careful in my 20's. I can't remember what my hba1cs were back then but nothing was said to me at the hospital. In my 30's and 40's my control was much better. The hospital say I'm very well controlled. Last hba1c 5.1. It runs in the 5's and 6's but on I would say that nearly every day I have a Reading in double figures. It's quite difficult I find unless I test about 6 or more times per day. So my readings don't reflect that of a person without diabetes. As I said I have taken a multi vitamin for many years and brewers yeast. So at the end of the day who knows. I believe supplements have contributed to me not getting complications. I exercise almost daily and I eat healthily but as I said it hasn't always been like this. I wanted to give some hope to the person who said they had background retinopathy.

 

[sitee]

Hi E

Your situation sounds similar to mine - 20 years with good control etc. Then last April I had my annual eye test and got the letter saying I had background retinopathy! I felt exactly the same and it hit me that it might be the start of complications.

I remember when being diagnosed I was told that I should expect complications after 10 years if I have good control!!!

However, after the initial fright I had a look at what it meant by googling it and felt a bit more relieved.

And, last week I went back for a check up and this time got a letter saying "no complications". I rang them up and they said that it can clear up. I was very relieved.

Goodluck
S

 

[Unbeliever]

I have tried to take lutein and bilberry as suggested above and was in the process of tracking down the pine bark bu the first two don't seem to agree with me. the lutein seemed ok at first but the Bilbery had disastrous affects. Now he lutein seems o disagree with me oo.

I was a little suspicious of the Bilberry extract because the main ingredient was beetroot powder which I thought might affect my bg readings adversely.

I took both wih meals as directed and introduced them at different times and gradually but
unfortunately nothing seems to make me able to tolerate both. Perhaps i will try the real thing.
I used to eat them for my sigh years ago.

Does anyone know if blueberries are just as effective as i have seen suggested.?

 

[SugarPlums]

I had my retinal scan carried out by an eye surgeon who said they were OK considering age/diabetes. A few months later, I had a photo scan at my GP's, back came the letter, "Ok but some indication of background retinopathy". Medical cynic that I am, this is a cover-all term to keep you to continue turning up for scans.

 

[psbridge]

My Retinal Scan appointment has turned up in previous years as regular as clockwork for the same week as before. This year however, it is conspicious by its absence and is already a month overdue. I'm just wondering in these days of cutbacks whether some NHS Trusts have extended the period between tests to save cash, or may have abandoned the check altogether? I do suffer seriously distorted vision for many hours afterwards, but rather that than completely lose my eyesight through no checks being made.