Non prolific retinopathy, so frightened, upset and confused

[Aoife]

Hi everyone

I am so scared I think I am literally losing all my marbles. I am new to the forum, browsing around today in search of diabetes material and found here Im 24 and Ive been diabetic for thirteen years.

I was told today that I have advanced non prolific retinopathy and I just dont know how to move forward. I dont even know exactly what it means. The doctor said a variety of phrases that have just confused the hell out of me, from "its not too bad" to "there is however quite a bit of damage" to "well theres nothing I need to treat" (im assuming treatment refers to laser therapy)

I *think* (but am not sure) that its a good thing that she said theres been no change since she started monitoring my eyes last september- Ive been seen roughly every three months. So the damage occured before then- but why am I not being offered treatment if its "advanced"??? what the hell?? advanced non prolific sounds appalling :cry:

I do see another eye doctor who has been doing the diabetes eye exam on me for maybe 8 years once a year, and hes said i dont need treatment (at the minute) but when he saw me in january he said he wanted me back in nine months instead of a year which freaked me out big time as well....ohhh i am just so scared and feel so helpless. My diabetes team are nice but i think they think im a bit of an idiot, i had issues with disordered eating and depression a few years ago (managed to mostly kick them) and for the last two years have been working to manage my diabetes right.

I am extremely angry too that no one saw fit to tell me- until a few months ago- that when you have very poor control one of the worst things you can do is make a sudden change- I dropped my hbA1c from approx 11 (yes I know- dreadful beyond belief) to about 8 in a couple of months about two years ago. Which my problems probably all stem from.

Oh i just dont know sorry for the essay, had to vent

 

[dipsticky]

Aoife. JSorry to hear all your troubles. People here will help you more than any GP. Search the net for the information on your problem, there is loads of stuff out there.

D

 

[gardenfairy22]

Is this last statement true? Never heard of this before. Sorry to hear of your eyesight problems, and hope that someone comes along soon to reassure you. Best wishes.
Carole

 

[phoenix]

Hi
Welcome to the forum, I'm sorry that you are so worried at the moment.
It is scary for you, uncertaintity and not knowing what your situation actually is leads to far more worry in the long run.
I think that you need to discuss this with someone, maybe your gp initially (presumably he will have received a letter from the specialist.
It would be a good idea to go armed with information and specific questions about your own condition.
There is an excellent source of info on retinopathy in general,
http://medweb.bham.ac.uk/easdec/Information_for_patients.html
If you highlight the word retinopathy on the top left there is a menu that includes many sections including, non prolific retinopathy, and the grading of retinopathy.
The different stages of retinopathy have very clear definitions ( ie mild, moderate and severe non prolific are different stages) Your gp should be able to tell you what your specialist has diagnosed.

gardenfairy22 on Sat May 30, 2009 9:05 am

Is this last statement true? Never heard of this before. Sorry to hear of your eyesight problems, and hope that someone comes along soon to reassure you. Best wishes.
Carole

Rapid improvement in blood glucose levels can make retinopathy progress rapidly sometimed requiring laser treatment.aFor this reason, it is better to lower levels gradually .
see http://medweb.bham.ac.uk/easdec/retinopathyprogression.htm However, the high levels themselves are also more likely to lead to problems. The site makes clear is that this rapid progression halts if better control is sustained .

A sudden improvement of control, perhaps with a 3% HbA1c drops, causes an increase in retinopathy progression for 1-3 years.

After 3-4 years of very good control retinopathy usually stops progressing completely and most patients will never need laser again

( the writer is dealing with intervention so his patients will have had laser treatment.)


Theres a lot on that site to read I do hope that it doesn't make you more worried. Try to focus on the measures they suggest for halting any progression and please discuss it with someone who knows your exact position.
Good luck.

 

[hanadr]

Hi Aoife
( I met a toddler with that name just a week or so ago. First time I'd seen it)
Anyway, don't panic. The key word is Non-proliferative. that means it's not growing. And if there's nothing to treat, that means it's probably not in the Macular region ( where images form) In fact it's not too bad. and if you keep your BG VERY tight, you can probably improve it. You are a young adult, you've got through the turmoil of puberty and should now be on an even path for a few years. Just Keep good control( around 5 ) at all times and next check should show an improvement.
YYou don't say how you treat your diabetes, or what your eating plan is.
Am i right in assuming you're a young T1?
We can support youand help you to improve your health. Just keep on asking.

 

[humph]

These sort of letters from the NHS really really annoy me. They send you something that too you sounds really bad, offer no explanation and then leave you to worry about it until YOU find the answers.

And they claim to be Professionals.

 

[the_anticarb]

Hi, just wanted to say this sounds just what I am going through so you are not alone. After a number of years of poor control I was told I had retinopathy but not requiring laser (not sure of the level, moderate I think, the doctor was supposed to write to me but that was a couple of months back) and my vision in the morning is all flickery for about 15 mins when I wake up which apparantly is due to the blood supply to the retina. I have tightened up my control a lot but I couldn't really get a middle ground, you're either taking care of it or you're not in my opinion. Although it can exacerbate the condition, it doesn't always do that. I think only about a third in the study the other poster put up found that, so you've a 2/3 chance that it won't. By controlling it you will be ok long term, which is what really matters. I've found a low carb diet works for me, but each to their own. If they are not lasering you, that is a good sign so take comfort in that. I know it can be easy to feel guilty for times in the past where you may not have controlled it, but you have to just accept that and move forward -

 

[sandymaynard]

Hi
i know that right now you are scared and worried! I can relate to that! Having severe eyesight problems, I can say not related to diabeties! I can understand the fear that you are suffering right now!
It is also normal to feel anger at what you are going through! As it must of been a shock at the specialist being so undecided! I can assure that if he used the words non proflic, This means that even though things have happened nothing is getting worse at the minute and all is stable!
Please don't feel that you are alone! As you are not we are all here to offer you support! As sometimes people need a chance to be able to let go of their feelings in a place that is safe! This forum is a safe place and no one can hurt you here!
We will offer you as much support as you need to be able to cope with what is going off! Believe you me! if I had not found this forum i would be in such a mess!
I know that the thought is scary of what the future holds! You could be very luckly and your eyesight gets no worse than what it is now!
But just be assured that we are here to give you the support that you are going to need! Don't be affraid to say how you feel! Or ask for help!
We work as a team here!
Sandy

 

[kegstore]

It's very scary, but knowledge is power and all that? Wikipedia has quite a good section on the subject. It's estimated that up to 80% of all diabetics diagnosed longer than 10 years have retinopathy to some degree or another.

I have proliferative retinopathy and have had around 6000 laser hits in each eye. Proliferative refers to the growth of many new weak and fragile blood vessels in the eye, not the progression of the condition. My situation was serious, but I've been able (along with my opthalmologist!) to halt the decline. Eyesight has stabilised, glasses prescription reduced and I can still read the penultimate line on the optician's letters board. I haven't had a bleed in more than 2 years, and no laser for 4 years. Yay!

Everyone goes on about the importance of good glycaemic control to improve the situation, and rightly so, but little time is devoted to the blood pressure question which is just as important. The biggest difference to my eyes was noticed (in clinic) after years of battling with hypertension meds and finally settling on the right combination. And of course if your eyes benefit then so do your kidneys, also proven in my case.

So, tight blood glucose and pressure control is definitely the way forward!

 

[Aoife]

Thank you, everybody, for replying. I appreciate it, and I am so glad to have found this forum where people have experienced all the **** diabetes throws at us and come out the other side!

Yes, I have Type 1, and am 24, so quite young in a way...but I suddenly feel like a new diabetic all over again! I was so detached from it during my teens- I totally underestimated the power it had. I dont even know WHY I did the stupid things I did- I knew diabetes could destroy eyes/kidneys/circulation...but I suppose in a weird way I thought I was invincible :roll: I thought my biggest problem was fitting into my jeans. Nowadays I don't give a **** what size I am from a vanity point of view.

I'm cheered up a wee bit the more I read about people who have had laser surgery done and have kept enough sight to do everyday things like reading/cinema and even driving (which I thought was fast vanishing over the horizon) - am I right in thinking laser is a great weapon against retinopathy, especially if its caught early on?

 

[kegstore]

Yes, I have Type 1, and am 24, so quite young in a way...but I suddenly feel like a new diabetic all over again! I was so detached from it during my teens- I totally underestimated the power it had. I dont even know WHY I did the stupid things I did- I knew diabetes could destroy eyes/kidneys/circulation...but I suppose in a weird way I thought I was invincible :roll: I thought my biggest problem was fitting into my jeans. Nowadays I don't give a **** what size I am from a vanity point of view.

My first complications presented only 11 years after first diagnosis with autonomic neuropathy. Trouble is when in your teens, all the potential problems seem light years away. And the last thing a teenager needs is to be told what to do! Sound familiar? :wink:

I'm cheered up a wee bit the more I read about people who have had laser surgery done and have kept enough sight to do everyday things like reading/cinema and even driving (which I thought was fast vanishing over the horizon) - am I right in thinking laser is a great weapon against retinopathy, especially if its caught early on?

Laser is not a cure, it only shores up the damage already done. If you don't address the control issues it will only delay the inevitable. As far as "keeping enough sight" is concerned I think this understates the situation - retinopathy is often asymptomatic which means that you may not notice any difference in your vision at all, until of course it's too late. If you do something about it early enough - like I did - then you can halt the decline, and it certainly sounds like you're not at the stage I was, so NOW is definitely the time to take hold! Good luck.

 

[hanadr]

Hi Aiofe
My husband is T1 and has had loads of laser hits. He still drives. Unfortunately, early this year, he had a bleed which has left some blood inside his eye and is interfering with his vision. He's due to have surgery on it in 10 days time. He's had a lot of diabetes related problems recently and I've finally managed to get him to control it better. It's paying off. Even his damaged kidneys are "stable". the eyes too are stable and the prognosis for the operation is excellent. It's definitely all down to good control. AND the NHS and DUK definition of Good, isn't good enough. Good control is non-diabetic levels almost, if not all the time.
Unfortunately, although T2 control without insulin is in some ways harder than with insulin use, Insulin users run the risks of Hypos. This may be where studying Bernstein may hold your answers.

 

[Trinkwasser]

Rapid improvement in blood glucose levels can make retinopathy progress rapidly sometimed requiring laser treatment.aFor this reason, it is better to lower levels gradually .
see http://medweb.bham.ac.uk/easdec/retinopathyprogression.htm However, the high levels themselves are also more likely to lead to problems. The site makes clear is that this rapid progression halts if better control is sustained .

A sudden improvement of control, perhaps with a 3% HbA1c drops, causes an increase in retinopathy progression for 1-3 years.

I knew someone who thought he'd done that once. AFAICR he had massively high BG (20 - 30) and a massive infection. He was hosiptalised with IV antibiotics and put on insulin. Once out he used an extremely low carb diet and dropped into the fives in about three weeks. He could scarcely reduce the insulin fast enough to keep up.

It turned out this *wasn't* what had happened, the damage was only temporary and probably due to a rapid change in intraorbital pressure, but several people dug up several papers about the likelihood of this happening: it does occur but is probably rare and probably requires a rapid BG decrease using insulin. Over years of seeing people make massive improvements I can't recall many occasions when this actually happened.

Certainly getting and keeping your BG down is #1 factor, BP control is #2 factor and reducing inflammation and ensuring plenty of bioflavinoids

http://www.macular-degeneration-vitamins.com/index.htm

seems to be important not just for macular denegeration (you can get these things from a varied multicoloured diet instead of pills)