Retinopathy can get anyone !!

JanieMc said:

In 1975, people would ask me "should you be eating that? Technological advances now mean that we have fabulously fast insulin and blood testers that give results in seconds. There are very few food stuffs that as diabetics we should avoid because they work faster than insulin. These include orange juice, lucozade and jelly sweets (our hypo fix foods).
My first twenty years of this disease I was unstable due to old fashioned insulin and poor and slow sugar testing methods. As a result, I too have had the maximum lazier treatment in both eyes. However, for the past more recent twenty years, with blood sugar monitors and fast insulin and a pump, I've got myself stable. My eye health is very good- not deteriorating at all.
I despair when I see so many people going on about what foods we can and cannot eat. The food we put in our bodies does not affect our health, its the insulin we take for that food. Read the DAFNE principles about insulin control. Even puddings are fine, never mind that fearful Jaffa cake. Take the right insulin, test regularly, learn about the insulin acting time and then how to adjust. It's not rocket science. Don't get me wrong, like anyone, to maximise our chances we need like anyone diabetic or not, to eat healthily and be a healthy weight. We should exercise to keep our legs and arteries working and help our cholesterol but harping on about reaching (or not) for the chocolate biscuits is not going to help anyone. Be DAFNE( dose adjustment for normal eating) educated. Demand this from your GP or consultant. It's your right and it WILL lengthen your tome on the planet.

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[rant mode=on]
and the problem with DAFNE is the final two letters of the acronym... they supposedly stand for "Normal Eating"... which if you have a non or badly functioning pancreas is madness... to keep telling people they can eat what normal people eat and just inject insulin (or for T2's not on insulin to pop some pills) to cope with the excess glucose floating around in your bloodstream is lunacy...

I'm on diet plus exercise only... there's no way I can carry on eating normally ever again... certainly if I don't want to suffer the complications that others have posted about in this thread already... the concept of retinopathy terrifies me. I most certainly do not want to lose my eyesight at all, or my feet... or end up on dialysis...

oh and as for your comment that the food you eat not affecting your health and it's the insulin... balderdash..., complete utter rubbish... carbs in your diet cause the glucose levels to rise... elevated glucose levels cause the damage and injury to your health. If you cut back on the carbs, you wouldn't need so much insulin... and you'd be far less at risk of over or under dosing with the insulin you are using.
[rant mode=off]

For me, it's hard to see what I eat could be harmful to me in the long run which could in turn contribute to a more severe case of retinopathy. I missed an eye screening appointment but I will book another to make sure that my eyes are as healthy as can be. I think I have a minor case of damage to the retina since I went to my opticians and they concluded that my eye's are in perfect health in terms of seeing but not with damage - this obviously meant that the opticians can't see inside the retina for damaged blood vessels whereas diabetic eye screening can do that.

I have an extremely dangerously (not exaggerating) low BMI of 12, and gaining weight is a serious matter but for me is as much a challenge equivalent to a really obese individual trying to lose 5 stone in a day so keeping in fit shape is really hard which I think is required to keep your eyes healthy as much as the rest of your system.
Everyday I feel like death, but i'm hanging on.

Been told that my right eye has changes to it, just had second retinopathy examination awaiting results. Hope there is some way the Dr's can help you folks.

No! and any health care professional who tells you otherwise is wrong by assuming that poor control = diabetic complications. Not necessarily, I was told by a specialist diabetes nurse its the luck of the draw, but if your blood sugars are well controlled there is a reduced risk. However, after I developed retinopathy and now registered blind and have had diabetes for more than 30 years I think I have done exceptionally well. I think, as a diabetic T1 we should stop feeling bad about complications. They happen it sucks, but I for one didn't ask for diabetes it just happened.

I had the jelly removed from my right eye after major bleeds, my left one was treated prior to any bleeds and I still have some useful sight in that eye. I mention this as the situation your husband is in is comparative to his brother. Ask the question can I reverse the complications? No, but by improving your overall well being can help. Since my eyes started with retinopathy it kicked started me into improving my well being and I stopped feeling guilty. You didn't do this to yourself. The diabetes did it. We are only human and living with diabetes is horrific, developing complications is devasting.

I only hope that your husband tries to look at himself and not worry that he is following the path of his brother. If you want to start a family face the here and now and not what may or may not happen

I did a bit of googling about the therapy described by post above.(trouble is it does sound like spam)
Short article with results of first clinical study here http://www.retinatoday.com/issues/0708/0708_18.pdfand results of pilot trials here
UK:
http://europepmc.org/abstract/MED/23023529
This one used the procedure on 23 consecutive patients and analysed the results.

For the first time, we achieved a beneficial effect on diabetic macular edema without the side effects of conventional laser therapy. The efficacy of this system in comparison with standard argon laser photocoagulation and in the treatment of other conditions affecting the retinal pigment epithelium needs further investigation

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Australia
This was a randomised trial comparing the results with existing treatment. ie to make sure that the results weren't inferior.
subjects:
20 eyes of 17 subjects in the retinal regeneration therapy group and 18 eyes of 14 subjects in the conventional group were analysed.
Results: (worth reading carefully, if I were affected I would get a copy of the full paper and ask an experts opinion)
When outliers were included in the dataset, the difference in retinal thickness reduction by analysis of covariance was 10.9 (standard deviation 17.6) mm in favour of the control laser. The difference between groups in retinal thickness reduction was 40.8 mm. If two extreme outliers were excluded, the difference was 5.6 (standard deviation 14.2) mm in favour of the retinal regeneration therapy laser, and the D optical coherence tomography was 18.5 mm. The visual acuity difference between groups was 0.059, meeting non-inferiority requirements.
Conclusions:  Although retinal thickness reduction was not unambiguously non-inferior, in the short-term, retinal regeneration therapy approximates the clinical efficacy of conventional photocoagulation, stabilizing visual acuity and providing motivation for larger trials http://www.ncbi.nlm.nih.gov/pubmed/22300292

These papers were both published in 2012

Interesting and sounds promising but both papers call for further trials and I assume from the above post that the treatment is not yet available on the NHS , the hospital is a private one.(though the UK researchers held posts at Moorfields and KCH ) .

So how quick is too quick?

After my last blood test of 8.4% I decided it was time to stop messing about and according to my mobile app my estimated level could now be 6.1% in less than 6 months.

Is that decrease bad? Am I going to damage my eyes?

Sent from my GT-I9100 using DCUK Forum mobile app

Hi I'm teddy2702 I am a new member. I've been type 1for 45 years (i am 50) I had many many blasts of laser when I was age 23 in both eyes. Doctors gave me to much laser and blinded me in left eye then I had a vitrectomy (removal of the jelly) in my right eye when I was 26 which saved my sight. It was the best thing I've had done I could still work as a nurse. I've been told by consultant that it is highly unlikely that I will ever had a bleed again. My op was 20 years ago and I can still see great with my one eye. As my experience of having a vitrectomy has been good I would recommend others to have this op if it is needed.

Thank you for your support Robinresbreast. It was never my intention to upset anyone, just trying to illustrate retinopathy can be a minor set back and not destroy all hopes and dreams. I wish you health and happiness my friend!


Sent from the Diabetes Forum App

Hi - for the last ten years or so I have been borderline diabetic. I feel I just was not given any education as to what to do - other than to lose weight - which if I could have, I would! Change of GP and HbA1c blood test and there - I am diabetic. Retinopathy exam and there I have damage behind my eye and been diabetic for at least five years at the very minimum. Without doubt we need more education about diabetes and what to do, how to control our glucose levels. And most certainly type 2 diabetics should be allowed the monitoring equipment to see what their glucose levels are - especially until they settle down and learn how to manage their diet. Me for example well I have bowel disease and needs load of fruit and veg - cant go to the loads section!! So then constipation sets in. I am cross with my old GP - he failed me! And believe me I thought I had researched things for myself. :evil: