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Early Retinopathy -Advice!

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fraser22

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Hello! I am a T1, aged 19, diagnosed 5 years ago this month! For the last three years, I have been in denial about my diabetes, partying non stop, eating lots of chocolate and cake, drinking a lot when im out with my friends etc... I had always been a good student but recently my high b.s have been taking there toll. I have no energy and am constantly oversleeping. I cant concentrate in class and my grades are slipping, i find it an effort to even climb stairs at times and test only once a day.

Recently I had an eye examination at my local clinic and received a letter back saying that I had early "diabetic changes" to my retina. This gave me the shock I needed as I am absolutely petrified. I am now testing 4 times a day +, and back to carb counting. I used to sometimes forget about my background insulin but am back to taking 14 units of lantus in the evening. My last hbA1c was 11.8% and has been sitting around this for the last 3 years. I am confident that my HbA1c will be much lower at my upcoming appointment with my GP.

My question is this... do I officially now have Retinopathy, is it the first stages of, or is this just a warning saying I am dangerously close to developing it? The letter only said I had "early diabetic changes" to my eyes, and I feel like this provoked an epiphany-like feeling within me to accept my condition and control it. I am carb counting, testing regularly and I already feel like I have more energy and my skin is clearer! Can anyone answer my question and maybe give me some extra advice?

Many Thanks,

Fraser x
 
Hi Fraser,
I am also type 1, I am 27 and was diagnosed at 18.

3 years ago I had my routine retinal eye screening and was told I had a slight bleed in my right eye - diabetic changes. I was told to come back in 6 months to get it re checked as sometimes it can clear up by itself.

It can occur from high levels, stress, illness etc I pooped myself and read up about it on the internet and spoke to my optician.

I was advised to start taking herbal tablets - Lutein. I got them from Holland and Barrett. I started to take one a day and went back for my check up 6 months later to be told that there were no traces of a bleed at all and my eyes were really healthy! I have not stopped taken them, I stick to my one a day and every check up since I have been told my eyes are in great shape. Lutein can be found in some foods to maintain healthy eyes but I decided to stick to taking the pills. Not sure if it is coincidence but I believe they work - worth looking into anyway?

As to blury vision, tired eyes, over sleeping etc I get this from time to time if my levels have been running high for a few days or if im ill or stressed out. I would not worry too much if its only the odd few days and not every day.

You do need to calm down a bit tho with excessive drinking, late nights and cakes! You will end up with ketosis and in hospital for a week or two being hooked up to insulin pumps and drips! - not good :? Once you hba1c is at a fairly normal level you will get away with a few nights here and there and if you get your carb and insulin in take right there is no reason why you cant enjoy cake or chocolate in your diet in moderation.

Its not all bad - keep up the good work and dont worry, looks like you've had an early warning and wake up call of what could happen if you continue the way you are. Dont be hard on yourself and let your hair down from time to time once you are under control :) - you can do it!!!!

Take care
x
 
The question is they have sent you a letter saying this but have they done anything about it?
I got diagnosed when i was 12 (i'm now 22) and last year i had to have laser treatment on my left eye, it came as a real shock to me as well, i have never intentionally not taken care of myself i just could have done it a whole lot better.
But my recent check up was good, the doctor was very pleased and i can't believe how my vision has actually improved due to better control (i used to have to wear glasses all the time in lectures but now i don't :D ), you really can't do any more than what it sounds like you are now doing, even if there are a few days that may go off track (trust me i know) at least you are doing something about it now.

L x
 
This is a little off topic but what would have compelled you to take better care of your diabetes? It is common to read similar stories to yours. It seems especially hard when diagnosed as a teenager rather than any other age. Did you know other teenagers with diabetes?
 
My T1 husband has had masses of laser treatment and a vitrectomy, which didn't go well. He's finally tightened up on his control.He was previously on target at THEIR[Hb A1c below 10% levels], Now he's doing better by reducing carbs. and keeping bgs in single figures.
Tight control can often reduce retinal changes.
Hana
 
Frazer,

I think this is a wake up call for you to start taking your diabetes control seriously. Try to tighten up your control and hopefully these early changes in your eyes will not progress to more serious complications. Stable bg control, keeping blood pressure/cholesterol below normal, and of course eating a healthy well balanced diet can all prevent further damage. Good luck!

Nigel
 
Hi Fraser,
firstly, well done for starting to take control!
I was diagnosed in 87 when I was 8. My stepmother (a nurse) wouldn't know a healthy diet if it fell on her and my dad is totally slack, so as a kid I got into some very bad habits. I knew all the theory about blindness and amputations and all the horrible things that can happen to diabetics but I was always kind of convinced it wouldn't happen to me. My HbA1c was always about 15, but doctors always said 'you need to get better control' without ever explaining how. So my control was pants for years. I got hospitalised for dka once cos nobody ever told me that you still need insulin even if you've got food poisoning and can't keep any food down. Not fun.

Anyway, I had 'early diabetic changes' for about 15 years before it developed into background retinopathy, so there's a good chance you still have time to prevent your changes getting worse, as long as you stay in control.

I used to drink stupid amounts when I was 19, as well as taking a variety of drugs and following an awful diet. It really doesn't help your blood sugars! Now I rarely drink, partly cos I don't actually like being drunk (or talking to drunk people!) and partly cos I don't like wasting my calories on drinks, particularly as most alcohol doesn't taste good. You can get away with it occasionally but you need to check your blood if you're drinking and always carry some kind of hypo treatment.

I'd recommend going on a dafne course if you can. I did it in January and it's the most useful thing I've ever done. I never understood about the number relationships between carbs and insulin and blood sugar level before. I've always counted carbs, I just never knew how to use that information. Every day on the course I learnt stuff that I feel I should have always known. Since January, I've got my HbA1c down to 7.4 which is the lowest it's ever been. All my doctors are over the moon about it, it's so nice to go to appointments without being told off! But since tightening up my control my neuropathy symptoms have gone and the opthalmologist says my eyes are doing really well and I don't need any more laser. Yippee! I hate laser.

So anyway, keep up the good work. If you stick to it, hopefully you can avoid having any laser. It took me over 20 years to start taking my diabetes seriously and I'm very lucky I didn't do myself more damage. I've had a ton of laser on my right eye, which has really affected my peripheral vision, and a bleed has left me with a 'floater' right in the centre of my vision, which drives me mental. It's so distracting and I've had to give up hopes of being a radiographer as my vision is rubbish in that eye. So believe me, it's really worth putting the effort in to looking after yourself.

Good luck with it all :-)
Jo
 
Thanks everyone for your kind words of advice. Mayesnfarmer, I am going to start on the leutein tablets tomorrow!
I have an appointment with my GP at the end of the month for bloods and of course hba1c. I'm feeling positive and every day i just remember that keeping tight control could prevent or at least slow down the process of retinopathy! I have more energy than I've had for a long time and although I'm basically back to square one with regards to carb counting, im reading up a lot and have a separate appointment with a dietician to speak about DAFNE. Its still a bit trial and error at the moment but on the whole my sugars are on target!

Fraser x
 
Good luck! :) you'll get there and remember you are allowed the odd 'off day' to let your hair down and have a treat! I really do think the Lutein works! x :D
 
Diabetic Retinopathy

I had my first Retinopathy eye screening done three weeks ago and thought that everything would be ok as my Diabetic Nurse said that due to my HbA1c blood test being so good {down from 9.3-6.3}and my weight loss of 34lb she didn't want to see me for six months and to enjoy the summer etc.

I readd the letter and it said the photographs reveal minor changes of Diabetic Retinopathy which do not require treatment and it is not uncommon for someone who has had Diabetes for a number of years to have such minor changes :shock: {I was diagnosed Type2 in January 2010,but had been pre diabetic before then}

The letter said that it wasn't any cause for concern but need to talk to my Diabetic care team to discuss ways to better control my condition :o I took the letter straight down to our surgery and the receptionist took the letter to the Diabetic nurse to show her and I now have an appointment for tomorrow afternoon so she can explain exactly what it all means.

I am now worried that I have problems with my eyes which will result in me losing my sight in the distant future.What I can't get my head round is the fact that I had my eyes tested for new glasses in February and was told at the end of the examination that there was no problems at the back of my eyes so to be sent this letter has taken me a bit by surprise. :o

Any advice would me most welcome.

Thanks :)
 
Wendyanne.

I have merged your post with this pre-existing thread. Just go back to the beginning and check out the various links posted here, the Op was a very similar question to yours.

cugila
Forum Monitor
 
please help,

I am a 35year old insulin dependant diabetic on the 4times aday routine and have had diabetes since 1991 but i only changed to the four times aday insulin regime two and a bit years ago to give a better control and less hypos.i also suffer from addisons disease and nearly keeled over yesterday at the routine ophalmology clinic when the woman told me i would need laser tretment on my eyes due to diabetic related changes!!!I have also have been put on a high protein low carb diet and since then my blood sugars and hba1c has been pants could you please help me and provide me with litreature or some down to earth info as iam finding that our local diabetic nurse and diabetic and endricronologist specialist seem to wait until its to late to do anything type of doctoring????

Yours Sincerely

Well Upset

Gazza 2012
 
Hi Gazza,

I am bumping your post up in the hope that someone will reply. I know nothing about Addisons or Insulin regimes.

Catherine.
 
GAZZA2012 said:
please help,

I am a 35year old insulin dependant diabetic on the 4times aday routine and have had diabetes since 1991 but i only changed to the four times aday insulin regime two and a bit years ago to give a better control and less hypos.i also suffer from addisons disease and nearly keeled over yesterday at the routine ophalmology clinic when the woman told me i would need laser tretment on my eyes due to diabetic related changes!!!I have also have been put on a high protein low carb diet and since then my blood sugars and hba1c has been pants could you please help me and provide me with litreature or some down to earth info as iam finding that our local diabetic nurse and diabetic and endricronologist specialist seem to wait until its to late to do anything type of doctoring????

Yours Sincerely

Well Upset

Gazza 2012
Click to expand...


We don't appear to have anybody around at present who can help with this. So, I found a site written by a Glenn Kardell. It is all about and for anybody who has Addisons Disease and Type 1 Diabetes. There is also a forum.

In the circumstances I think this may be a site that could be of benefit to you.

http://addisons-diabetes.gkznet.com/index.htm

Ken
 
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