Retinopathy can get anyone !!

[cjld999]

Hi all,

This is my first time posting but I feel so strongly about some of the comments I have read tonight that I felt compelled to write.

Whilst some of the content of the threads is accurate, much of it is not! I have had T1DM for 28 years now and yes I have been through the whole horrible retinopathy too. Admittedly my HbA1c results were horrendous as a teenager but remember it's hard to get a teenager to agree to coming home on time, let alone keeping their sugars perfect, and no I do not see my retinopathy as 'an inevitable consequence'!

I too have had tons of laser to both eyes but remember, laser is designed to attach the retina more strongly so that the new vessels have less chance of causing detachment. Also, by some as still unknown mechanism (possibly inhibition of the VEGF) pan retinal photocoaglation is the best chance of a diabetic retaining their sight. Essentially you are sacrificing your peripheral vision, or at least some of it, to maintain central vision which is far more useful.

Anyway I am not here to give information on retinopathy I am here to inspire hope! Despite these set backs, I am in my thirties now and both a qualified doctor and pharmacist. I enjoy life, work hard, about to get married and no, don't spend every minute of every day worrying about sugar levels! Sure I test regularly, inject as I should and stick to a healthy diet mainly, but the latter is more as I don't wish to be overweight rather than because certain foods are forbidden! With carb counting many diabetics have been given the freedom of an essentially 'normal' diet, no more strict than that that is recommended for the general population! It is the ability to know how to adjust insulin and exercise accordingly that is paramount, not avoiding Jaffa cakes! Everything in moderation.

The person who spoke about trying to attain almost 'normal' HbA1c levels needs to start living a bit! Show me a T1 diabetic with an HbA1c of below 6.5% who doesn't have a problem with hypos interrupting their life and I will show you a liar. Diabetes is a chronic condition and encouraging people to try and attain normal levels will only invoke feelings of failure and, desperation. As doctors we have to balance quality of life too and this is why we look at <7.5% as a good result. It comes from the DCCT trial that looked at thousands of people and found a level which was attainable which at the same time kept the possibility of complications to a minimum. It is not the perfect figure at all but at the end of the day if every diabetic could attain a non-diabetic HbA1c level we would have treatment nailed! Unfortunately this is not the case for the vast majority of diabetics however hard they try.

I am not here to preach as I have suffered my own problems, I just want to encourage people to do their best, and yes, you cannot ignore it, but scare mongering does not help give a quality of life. Unfortunately a cure does not seem anytime soon but we will get there one day! For now we just keep on trying and I hope my story shows that living with diabetes and it's setbacks doesn't necessarily mean not being able to achieve your goals. Bear in mind, trying your best and being aware to identify early problems ensures many complications can be treated or managed well enough to allow the leading of a rewarding life.

 

[Paul1976]

Oh deary me! :roll:

 

[cjld999]

?

 

[Paul1976]

Hi all,

This is my first time posting but I feel so strongly about some of the comments I have read tonight that I felt compelled to write.

Whilst some of the content of the threads is accurate, much of it is not! I have had T1DM for 28 years now.

I won't comment further BUT your first post seems to be only there to provoke an arguement AND if you've had Type 1 for 28 years-WHY does your profile state.."Years Diagnosed:1"? Just asking...

 

[bensug]

Hi, Sorry to hear about your husbands problems. You mentioned he is having trouble adjusting to the new diet. Not sure what that is but sounds like you have realised that carbs are an issue for diabetics. I do think there is a lot you can do with dietary change. I am a T2, aged 39 - was diagnosed at 37 with blood sugar scores of 29 - near coma stage. Luckily I discovered Dr Bernstein's book (Dr. Bernstein's Low-Carbohydrate Solution http://www.diabetes-book.com/ ). It took alot of adjusting, but my A1c is now down to 4.6, and I never even see any scores over 6. I have been able to come off all my insulin and now dont need any medication. Basically carbs are poison for diabetics - advising a diabetic to eat "slower carbs" is like giving an aloholic more beer instead of wine - sure its less bad but what you really need is to cut it out! If your husband can go on the type of diet in bernsteins book (30 grams of carbs per day) he will need far less insulin, and thus will find much easier to control his blood sugars, and much less likelihood of a hypo. People often ask me "where does your energy come from if you dont eat carbs?" - but actually nobody gets their energy from carbs directly - your body converts carbs into a molecule called ATP which is stored in all your cells. A molecule of fat actually converts to more ATP than carbs, so while it takes longer to get into your system, it does a better job of "filling the tank". Actually filling the tank is a good analogy - when you are running on carbs its like pouring fuel in the tank and then burning it up on the racetrack until you are empty - leading to the cycle up high and low blood sugars. Protein and fats act like a steady flow into the tank - keeping it topped up at just the right level and allowing yu to keep going for longer.

It is tough at first changing your diet but the improved scores are a good motivator. Anyway you are allowed to have alot of the things that guys will crave like steaks, hamburgers, cheese etc - you just have them on a salad base instead of on a bun/with potatoes etc.

If he can succeed in changing his diet he has a very good chance of avoiding or slowing down the progress of further complications.
Good luck

 

[cjld999]

Dear Paul1976,

I am in no way out to provoke an argument, merely pointing out that there is ore to life than figures and to offer hope to people like myself whoare struggling at times!

I have no idea why my profile says I have only been diagnosed for 1 year but how I wish this were true!

I'm sorry you feel you can only comment to criticise, likewise I will not comment further.....

 

[Unbeliever]

Perhaps the poster has wandered in here by mistake? I am glad she is happy satisfied and optimistic. And of course informing us that she is a doctor and pharmacis will add so much more weight to her comments.

People do not come here to scaremonger. We come to share our personal experiences. Anyone who cannot bear to read of others' negative experiences is perhaps, not as secure as he/she claims.'?

I am glad that my consultant is more realistic and would not make such unequivocal claims for laser. It is indeed the best chance anyone suffering from retinopathy has of retaining their sight mainly because it the ONLY treatment at present
Apart from the injections of course. I don't think anyone doubts this but laser can be used incorrectly or inappropriately and often is, I have lost track of the number of posters who have cited examples of this.

There have also been many who have very positive experiences. of it. I personally , have experienced both.We can all learn from both sides of the story. Diabetes IS all about balance

We alll cope with things differently . The somewhat fake {IMHO} optimism of the "personal stories" on a certain, similarly named site are a turn -off for me. I find them patronising. Others may find them inspiring.
Just my opinion . But then I am not medically qualified so what do I know? [Sorry Viv}

 

[elmacri]

when i first posted this thread i didn´t intend to educate or impress anybody .....................i am new to this. I wanted to share our family story of how "we" live it and learn by it.
I have tried to be as honest as i can and hope that everything i have posted has been correct. I have not tried to push people into ways of thinking,
it REALLY is just our story.........I´m sorry some people have now been upset by certain posts.

An update on my partners brother,..... He had to have his hand amputated two days ago. I wonder when it will stop for him. )His other hand is not looking good either. On a plus note we as a family have donated the hand to medical science in a hope that someone can learn from this.
seeing his brother makes me so determined to win this. Although i am finding it hard when sometimes my parnter is sneaking the odd thing he shouldn´t have. I think since his levels came down on his last bloods he somehow thinks its ok to sometimes have the odd thing. For example, we were at a friends birthday at a beachside bar and tapas and drinks were just placed in front of us all afternoon. I saw him having some potato tapa and when i asked why he said he just really wanted some and couldn´t stop himself from having it even though there were things there he could eat....................temptation when out is sooooooooo hard for him. It makes me worry for when i am not with him, although i know i am risking becoming his mum if i am not carefull. haha
what is the saying?? A womans work is never done!! i will have to work harder to beat this withhim.

 

[Paul1976]

It wasn't anything you had posted :wink: Thankyou for sharing your story and I'm very sorry to hear about the horrible complications you and your partners brother has suffered and is going through I REALLY hope things improve for you all.

Best wishes

Paul

 

[Unbeliever]

Perhaps the poster has wandered in here by mistake? I am glad she is happy satisfied and optimistic. And of course informing us that she is a doctor and pharmacist will add so much more weight to her comments.

People do not come here to scaremonger. We come to share our personal experiences. Anyone who cannot bear to read of others' negative experiences is perhaps, not as secure as he/she claims.'?

I am glad that my consultant is more realistic and would not make such unequivocal claims for laser. It is indeed the best chance anyone suffering from retinopathy has of retaining their sight mainly because it the ONLY treatment at present
Apart from the injections of course. I don't think anyone doubts this but laser can be used incorrectly or inappropriately and often is, I have lost track of the number of posters who have cited examples of this.

There have also been many who have very positive experiences. of it. I personally , have experienced both.We can all learn from both sides of the story. Diabetes IS all about balance

We alll cope with things differently . The somewhat fake {IMHO} optimism of the "personal stories" on a certain, similarly named site are a turn -off for me. I find them patronising. Others may find them inspiring.
Just my opinion . But then I am not medically qualified so what do I know? [Sorry Viv}

 

[leb]

Hi all
Just wanted to say i agree with the bringing glucose levels down gradyally.
I have been diabetic type 1 fir 21years. My control has been terrible for over 13years but i ead one of those who thought id git away with it. I went on DAFNE in feb and found it really useful. I came away determined to improve my control. Which i did but sadly to the deyrement if my eyes. I ent for retinal screening in november last year and was told all was ok. In march tjis year i noticed problems with my vIsIon and was ebentually sent to see a specialist. They took one look at my eyes and told me i haf advanced proliferative retinopathy whuch required urgent lader as it was pulling in my retIna. I had extensive pan retinal laser with 3000 shots in each eye. I went back on friday 8 weeks after laser treatment and they said i still have a vleed and scar tissue. I get temporary blindness in my rIght eye from where the blood is moving around. I hoped the laser was successful but it would seem its not wirked fully. I am due back in a couple of months i just pray for better news next time.

So again please please take diabetes control seriously and if trying to improve it do so slowly. I do not wish what im going through right now on anyone. Going blind is my worst fear i spend so much time thinking and worrying that its starting to take over.
Sharing my experIence on here i hope will prevent someone feom going through the same x

 

[Robinredbreast]

Diabetic Retionpathy About Diabests
Diabetes is one of the leading causes of visual loss in the United States. Visual problems become more likely the longer that diabetes has been present. Given enough time, about 85% of diabetics will have some eye problems. Over many years, good blood sugar control does limit, but does not prevent, eye problems.

Diabetes affects the eye in two main ways. First, excess sugar can be trapped in the eye’s lens causing blurry vision, a change in glasses prescription, and cataracts (cloudy lens). Diabetics frequently require more changes in their glasses prescription and need earlier cataract surgery than the average patient. Second, diabetes causes the smallest blood vessels in the back of the eye to close down or leak. Damage here, in the retina, causes the most severe threat to vision.

What is Diabetic Retinopathy? The eye is like a tiny camera, and the retina is the “film” in the back of this camera. The center of the retina is a tiny spot called the “macula”, which supplies all of our sharp, central vision. The earliest form of diabetic retinal damage is called “background diabetic retinopathy”. About 50% of patients with diabetes for 10-15 years have some signs of this such as bleeding, or swollen pockets within the retina. If these swollen areas affect the macula, dim or blurry vision may result.

If the eye disease worsens, areas of the retina may not get enough blood. The eye responds by growing thin new vessels. This is called “proliferative diabetic retinopathy”. Unfortunately, these new vessels frequently break open and bleed, filling the eye with blood and stimulating scar tissue to grow, sometimes leading to retinal detachment. The early stages of this condition can be treated with the laser. More advanced disease often requires invasive surgery, called “vitrectomy”, which involves removal of blood, scar tissue, and abnormal vessels within the eye and repair of retinal detachment.

I copied these extracts from The University of Toledo, Medical Centre, Retinopathy can get anyone, anywhere in the world :thumbdown:

 

[Robinredbreast]

Hi all,

This is my first time posting but I feel so strongly about some of the comments I have read tonight that I felt compelled to write.

Whilst some of the content of the threads is accurate, much of it is not! I have had T1DM for 28 years now and yes I have been through the whole horrible retinopathy too. Admittedly my HbA1c results were horrendous as a teenager but remember it's hard to get a teenager to agree to coming home on time, let alone keeping their sugars perfect, and no I do not see my retinopathy as 'an inevitable consequence'!

I too have had tons of laser to both eyes but remember, laser is designed to attach the retina more strongly so that the new vessels have less chance of causing detachment. Also, by some as still unknown mechanism (possibly inhibition of the VEGF) pan retinal photocoaglation is the best chance of a diabetic retaining their sight. Essentially you are sacrificing your peripheral vision, or at least some of it, to maintain central vision which is far more useful.

Anyway I am not here to give information on retinopathy I am here to inspire hope! Despite these set backs, I am in my thirties now and both a qualified doctor and pharmacist. I enjoy life, work hard, about to get married and no, don't spend every minute of every day worrying about sugar levels! Sure I test regularly, inject as I should and stick to a healthy diet mainly, but the latter is more as I don't wish to be overweight rather than because certain foods are forbidden! With carb counting many diabetics have been given the freedom of an essentially 'normal' diet, no more strict than that that is recommended for the general population! It is the ability to know how to adjust insulin and exercise accordingly that is paramount, not avoiding Jaffa cakes! Everything in moderation.

The person who spoke about trying to attain almost 'normal' HbA1c levels needs to start living a bit! Show me a T1 diabetic with an HbA1c of below 6.5% who doesn't have a problem with hypos interrupting their life and I will show you a liar. Diabetes is a chronic condition and encouraging people to try and attain normal levels will only invoke feelings of failure and, desperation. As doctors we have to balance quality of life too and this is why we look at <7.5% as a good result. It comes from the DCCT trial that looked at thousands of people and found a level which was attainable which at the same time kept the possibility of complications to a minimum. It is not the perfect figure at all but at the end of the day if every diabetic could attain a non-diabetic HbA1c level we would have treatment nailed! Unfortunately this is not the case for the vast majority of diabetics however hard they try.

I am not here to preach as I have suffered my own problems, I just want to encourage people to do their best, and yes, you cannot ignore it, but scare mongering does not help give a quality of life. Unfortunately a cure does not seem anytime soon but we will get there one day! For now we just keep on trying and I hope my story shows that living with diabetes and it's setbacks doesn't necessarily mean not being able to achieve your goals. Bear in mind, trying your best and being aware to identify early problems ensures many complications can be treated or managed well enough to allow the leading of a rewarding life.

Everyone has aright to post what they feel or think about a certain subject. I have read this twice and I cant understand why there has been negativity to this poster. They have just given their view, like everyone else does, whether it be good, bad or indifferent and has even admitted that their control has, in the past, not been good, which can be hard for people to admit to. I have posted extracts from a USA Medical Center today, just to highlight that EVEN with good control, complications do happen. I suffer from retinopathy too.

Some members on here have written some very blunt and bias views on different subjects, and some of them are, good, bad and indifferent.

I agree with cjld999,' lets inspire hope' :thumbup: with the big D, retinopathy may not be on the cards for everyone with daibetes, but it does rear its ugly head RRB

 

[mrawfell]

I am really sorry about your situation. It is a sharp reminder that this is a very dangerous ans insidious disease. I am T2 and my HbA1c has been falling, test every 3 months. ( I have retired in the Philippines, so I pay for my medical checks. ) One test was 6.5, then, 4.7, then 4.4. There were previous tests, but I can't remember the results. At 4.4 she said stop the metformin, 750 mg slow release, just take the 50 mg vitagliptin. After 2 days I found my FBS had risen to 6.5, from a previous figure of 5 to 5.5. Since I had some metformin left I just decided back on it, I don't want to take unnecessary risks. It does upset my guts, constipation and wind. Reading your comment just makes me think, side effects, what side effects. Thank you for your publication, I am sure it was not easy.

 

[JanieMc]

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.

 

[kt78]

Hi Janie
I just wanted to say thank you for your post.
I am at the end of the laser path too, and as you'll see from my signature below according to my records have 'treated proliferative retinopathy'. My vision is stable now, I have a pump and am just sooo happy to read you have been in the same position for twenty years.
Retinopathy is very scary, however we can all help all ourselves and whilst no treatment is perfect - today it is better than ever before. You really have made my day! :clap:

 

[kt78]

Hi Louise - Thank you I'll check out your posts!
Did you have proliferative retinopathy though, that is when new, weak blood vessels appear? Did you have floaters or scar tissue? I think then that laser is really the only option.
Laser is scary - but I love it for saving my sight! x

 

[JanieMc]

KT78 - very glad to hear it. Keep plodding on lovely. Fight the fight x

 

[lousiek]

Hi Louise - Thank you I'll check out your posts!
Did you have proliferative retinopathy though, that is when new, weak blood vessels appear? Did you have floaters or scar tissue? I think then that laser is really the only option.
Laser is scary - but I love it for saving my sight! x

hey janie,
Not proliferative,i had the floaters and bad vision getting worse.
I only got the uncut book a little out of desperation, as i HATE
hospitals and eye exams etc. I feel sick even when i get the appointments.
But i was shocked at the amount
of things in it about retinopathy that i had never even heard before,
all proven in studies to help retinopathy. I started googling a lot of the things in
it and found lots more. i would tell you all in it but im worried
about copyright issues getting me sued.

 

[leb]

Hi janie
Just wanted to ask you how long it took to get yoir tetinopathy under control. I found out in march this year that i had proliferative retinopathy and have hadtons of laser and a vitrectomy since. My diabetesws unstable for about 14yrs before this but i have now got a pump since august and my control iste best its been since diagnosus 21 yrs ago
I went for my retinal screening last week and was told there is still some bleeding :-(
Reading your post gives me hope as there were times rhat i feared the worst.