Is retinopathy & progression to Insulin inevitable for Type 2 diabetics?

[Alisonjane10]

I receive the "Type 2 and you" newsletter from The Independent Diabetes Trust. Today, the September, issue 24, landed on my doormat. Having just read it, I am distressed & disturbed by what has been written. And I quote: "On average, people with Type 2 diabetes will need to start taking insulin seven years after diagnosis." I had NO idea that this is my future with this **** disease. It's frightening.

The article on Diabetic Retinopathy States "After 20 years of Diabetes, nearly all patients with Type 1 diabetes and >60% of patients with Type 2 diabetes will have some degree of retinopathy." Again, this frightens & saddens me. Of course, I know about diabetic complications. I made it my business to educate & inform myself, via this forum and other resources, when I was diagnosed earlier this year. Am I really so naive not to be aware of this prognosis. I'm angry! Rightly or wrongly so.

The Independent Diabetes Trust is a competent, trustworthy & reliable organisation with a good reputation, who educate and support those with this disease. I've no reason not to believe their statistics. I'm gutted to be honest.

All advice, views, personal experience & opinions will be gratefully received. Oh, and here's a link to the newsletter.
http://iddt.org/wp-content/uploads/2015/09/Type2andYou-Sep2015.pdf

 

[britishpub]

Dunno about you, but I don't consider myself "average", and I have no intention of willingly becoming one of their averages.

 

[Pipp]

I receive the "Type 2 and you" newsletter from The Independent Diabetes Trust. Today, the September, issue 24, landed on my doormat. Having just read it, I am distressed & disturbed by what has been written. And I quote: "On average, people with Type 2 diabetes will need to start taking insulin seven years after diagnosis." I had NO idea that this is my future with this **** disease. It's frightening.

The article on Diabetic Retinopathy States "After 20 years of Diabetes, nearly all patients with Type 1 diabetes and >60% of patients with Type 2 diabetes will have some degree of retinopathy." Again, this frightens & saddens me. Of course, I know about diabetic complications. I made it my business to educate & inform myself, via this forum and other resources, when I was diagnosed earlier this year. Am I really so naive not to be aware of this prognosis. I'm angry! Rightly or wrongly so.

The Independent Diabetes Trust is a competent, trustworthy & reliable organisation with a good reputation, who educate and support those with this disease. I've no reason not to believe their statistics. I'm gutted to be honest.

All advice, views, personal experience & opinions will be gratefully received. Oh, and here's a link to the newsletter.
http://iddt.org/wp-content/uploads/2015/09/Type2andYou-Sep2015.pdf

Diagnosed T2 10 years. No complications yet. No medication for over a year.

I think the article you quote is useful for scaring people into managing their diabetes better.
I am not sure where they got their stats from. Of course it is possible that the 'some degree of retinopathy' quoted includes even the very minor changes that some have. Not all will have symtoms though.

Edit: thank you for changing to black text for your posts.. It has helped.

 

[Brunneria]

All those predictions are based on diabetics who have followed NHS guidelines, or have eaten carbs regularly, as is widely advised by their medical professionals.

I was told I would be diabetic in 2 years, in my 20s.
Ended up by holding out til my mid 40s - by low carbing.

Now I AM T2, and very low carbing, plus fat, I reckon even if things do progress, they are going to be much much slower than the NHS predictions suggest.

Diabetic complications develop at different speeds in different people, but there is a heck of a lot we can do to help ourselves, and for T2s that is mainly down to diet and blood glucose control. Some exercise. Some meds.

Have a read of www.bloodsugar101.com and you will see analysis of studies showing that if blood glucose is lowered to normal levels (non-D levels) the incidence of complications plummets - to that of a normal person. For that reason I have a goal to never let my BG rise above 7. Doesn't always happen, but it is a FINE goal!

Edited: to add the italics in the first sentence, cos, lets face it, how many people actually DO follow NHS guidelines?

 

[Alisonjane10]

Dunno about you, but I don't consider myself "average", and I have no intention of willingly becoming one of their averages.

I agree with you. And like yourself, I'll be fighting every step of the way. But, strong words don't change the statistics within the article.

 

[britishpub]

I don't believe anything is inevitable.

We must have the opportunity to change the outcome, to some degree at least.

We are all empowered by what we read, the support and experiences of others on a similar road to ourselves. I'm going to fight to make sure I do everything I can to take control of this disease, as will you and many others.

The only thing that is inevitable, is the outcome if you do nothing to change it.

 

[Alisonjane10]

All those predictions are based on diabetics who have followed NHS guidelines.

I was told I would be diabetic in 2 years, in my 20s.
Ended up by holding out til my mid 40s - by low carbing.

Now I AM T2, and very low carbing, plus fat, I reckon even if things do progress, they are going to be much much slower than the NHS predictions suggest.

Diabetic complications develop at different speeds in different people, but there is a heck of a lot we can do to help ourselves, and for T2s that is mainly down to diet and blood glucose control. Some exercise. Some meds.

Have a read of www.bloodsugar101.com and you will see analysis of studies showing that if blood glucose is lowered to normal levels (non-D levels) the incidence of complications plummets - to that of a normal person. For that reason I have a goal to never let my BG rise above 7. Doesn't always happen, but it is a FINE goal!

Hi @Brunneria. Thank you for sharing your experiences. It's reassuring, you being an "old timer." (In the nicest possible way.) May I ask...isn't it "normal" for non-diabetics to have blood glucose rise above 7 following a meal? I sometimes test my hubby's BG after a big meal. (Purely out of interest.) Often it is above 7.0, obviously depending on what he's eaten. Quickly drops back down. But BG went above 10 recently following a Costa Lemon Iced Tea. (Uses flavoured syrups to make the iced teas.)

 

[Pipp]

Just to add another thought. Or two or three even. 20 years ago there were less meds available. We have more regular checks now, and that article on retinopathy looks as if it is promoting a product supplied by the Independent Diabetes Trust. (So how 'independent' are they?)

 

[AndBreathe]

The thing about predicting the future is it isn't certain, and although the past may offer us valuable indicators, when it comes to medical matters, like diabetes, it must be considered that knowledge, insights, prevention, treatments and management are all advancing, which over time, gives the motivated diabetic a chance to put themselves at the better end of the spectrum, as far as outcomes go,notwithstanding any personal or familial risks they run.

Having looked the National Diabetes Audit for various years (I believe 2013 is the most recent published - http://www.hscic.gov.uk/catalogue/PUB14970), some of the statistics published, are depressingly sobering. It would appear that an enormous number of diabetics (T1 & T2) are not reaching their diabetes targets, which, for them, sadly must be increasing their chances of suffering complications, somewhere along their lifetime adventure.

I would suggest that by comparison, the contributors to this forum are in the minority, in terms of how we approach and manage our conditions, today. What we do today will influence what we do tomorrow, but it doesn't set it into stone. How many people do we see who lose their way over time?

For myself, my aim is to remain as fit and healthy as I am today, for as long as I possibly can, so I take my condition seriously. But, who knows what life will throw my way, in terms of life events and health curved balls, but I can only do my best.

I aim to remain confident in confident of my future, as becoming crest-fallen, in the light of this sort of statistical prediction encourages a self-fulfilling prophecy I want no part of.

 

[Alisonjane10]

I don't believe anything is inevitable.

We must have the opportunity to change the outcome, to some degree at least.

We are all empowered by what we read, the support and experiences of others on a similar road to ourselves. I'm going to fight to make sure I do everything I can to take control of this disease, as will you and many others.

The only thing that is inevitable, is the outcome if you do nothing to change it.

Well said @britishpub. I ain't going down without a fight. But, the articles did scare me. Posting the thread & hearing from others has helped me gain some perspective. Thank you.

 

[Robbity]

My own GP was much more positive to the effect of "get your weight down to what it should be and your pancreas is probably going to be able to cope properly again, and you may well end up back as non-diabetic" - and told me to try the Atkins diet - mainly for the weight loss - but a bit of research taught me carbs are my main enemy and a low carb diet would my main weapon in my diabetic battle.

Many of the type 2 diabetics who've been told to eat a diet heavy in carbs and that testing isn't necessary may well - very unfortunately - end up as predicted, but I don't believe that the future is necessarily so dire for those of us who have taken matters into our own hands and are working on improving our condition. So take heart.

Robbity

 

[Hiitsme]

Insulin was mentioned to me right at the beginning. I was told it was impossible for me to control my diabetes with diet, weight loss and exercise, as my levels were so high. Then nurse told me I couldn't use diet as my diet was too good ie very similar to what NHS recommends. I think I have achieved a lot in 6 months though my diabetic eye screening did come up with background retinopathy, I am still fighting to control my blood sugars. I was fortunate that I was given a meter at the beginning as my GP was convinced I would have to go straight onto insulin. Now he doesn't want me to test. Can't win can we.

 

[Brunneria]

Hi @Brunneria. Thank you for sharing your experiences. It's reassuring, you being an "old timer." (In the nicest possible way.) May I ask...isn't it "normal" for non-diabetics to have blood glucose rise above 7 following a meal? I sometimes test my hubby's BG after a big meal. (Purely out of interest.) Often it is above 7.0, obviously depending on what he's eaten. Quickly drops back down. But BG went above 10 recently following a Costa Lemon Iced Tea. (Uses flavoured syrups to make the iced teas.)

I think 'normal' people have widely varying bg levels, and that non-diabetics often have quite high readings! The difference is that many of them drop back down to the 4s and sometimes the 3s the rest of the time, while we diabetics stick higher for MUCH longer - which is what causes a lot of the problem.

The reason I have arbitrarily chosen 7 as my goalpost is based entirely on the 101 website.
The studies examined there show some general trends - basically, if you keep your blood glucose levels to what used to be 5.9% or below (they call it the 5% club), which we would now call below 42, then those diabetic complications become MUCH less likely.

But of course, the HbA1c is an average reading, and 42 eqates to an approx average of 7 mmol/l
So I just go for 7 as a nice round ceiling, and hope that if I keep under 7 as much as possible, the end result will be living inside the 5% club. I may be erring on the side of caution, but I would much rather do that than push the envelope and discover that I pay the price, in complications, in 10 or 20 years time.

This is a looooong game (I keep saying that, but only because it is true)

Sorry if that explanation was confusing, but this diagram may help.

 

[Alisonjane10]

The thing about predicting the future is it isn't certain, and although the past may offer us valuable indicators, when it comes to medical matters, like diabetes, it must be considered that knowledge, insights, prevention, treatments and management are all advancing, which over time, gives the motivated diabetic a chance to put themselves at the better end of the spectrum, as far as outcomes go,notwithstanding any personal or familial risks they run.

Having looked the National Diabetes Audit for various years (I believe 2013 is the most recent published - http://www.hscic.gov.uk/catalogue/PUB14970), some of the statistics published, are depressingly sobering. It would appear that an enormous number of diabetics (T1 & T2) are not reaching their diabetes targets, which, for them, sadly must be increasing their chances of suffering complications, somewhere along their lifetime adventure.

I would suggest that by comparison, the contributors to this forum are in the minority, in terms of how we approach and manage our conditions, today. What we do today will influence what we do tomorrow, but it doesn't set it into stone. How many people do we see who lose their way over time?

For myself, my aim is to remain as fit and healthy as I am today, for as long as I possibly can, so I take my condition seriously. But, who knows what life will throw my way, in terms of life events and health curved balls, but I can only do my best.

I aim to remain confident in confident of my future, as becoming crest-fallen, in the light of this sort of statistical prediction encourages a self-fulfilling prophecy I want no part of.

Thought provoking & interesting reply to the thread @AndBreathe. It would be disturbing to consider that any set of statistics could encourage a self-fulfilling prophecy. Surely, this would happen only if one is not prepared to work hard enough to ensure it doesn't come to fruition. I suspect that being perturbed, upset, or crest-fallen (great description,) is not an unnatural feeling when confronted with such alarming statistics. Determination to succeed, with the management of this disease, or life's challenges in general, is the deciding factor in accomplishing ones goals. And, long may it be so for us all.

 

[Lamont D]

The only thing that is inevitable is the fight to become healthier.
I have won that fight and I don't intend to become a statistic to prove anything.

A real progression is one where real healthy dietary advice is given and the rush to medication is secondary to real health care!

 

[sanguine]

Some info lifted from my low carb for beginners guide:

The figures below show the impacts of the NICE guidance on HbA1c levels of registered diabetics.

Results for England. The National Diabetes Audit 2010-2011
Percentage of registered Type 2 patients in England

HbA1c >= 6.5% (48 mmol/mol = 72.5%
HbA1c > 7.5% (58 mmol/mol) = 32.6%
HbA1c >10.0% (86 mmol/mol) = 6.8%

(So only 27.5% of Type 2s achieve non-diabetic or prediabetic levels – we don't know how many of these depend on significant and increasing medication rather than diet however).

So I don't know about anyone else (well I have an idea about some of you lol) but I'm well into that 27.5% and intend to stay as near the extreme low end as possible.

But it's statistics like those above that contribute to a belief system among many HCPs that this condition is inevitably a declining one. We're doing our best to change that belief but there's a big majority out there who eat the starchy carbs as advised and accept it or just don't care or imagine that just taking the meds will save them - we've all heard the 'I'm on metformin so I can carry on as before, I like my cake and chips, the drugs will make sure I'm OK' stories.

 

[Alisonjane10]

I think 'normal' people have widely varying bg levels, and that non-diabetics often have quite high readings! The difference is that many of them drop back down to the 4s and sometimes the 3s the rest of the time, while we diabetics stick higher for MUCH longer - which is what causes a lot of the problem.

The reason I have arbitrarily chosen 7 as my goalpost is based entirely on the 101 website.
The studies examined there show some general trends - basically, if you keep your blood glucose levels to what used to be 5.9% or below (they call it the 5% club), which we would now call below 42, then those diabetic complications become MUCH less likely.

But of course, the HbA1c is an average reading, and 42 eqates to an approx average of 7 mmol/l
So I just go for 7 as a nice round ceiling, and hope that if I keep under 7 as much as possible, the end result will be living inside the 5% club. I may be erring on the side of caution, but I would much rather do that than push the envelope and discover that I pay the price, in complications, in 10 or 20 years time.

This is a looooong game (I keep saying that, but only because it is true)

Sorry if that explanation was confusing, but this diagram may help.

Thank you for taking the time to explain this @Brunneria. Fascinating stuff. And yes, you're right..."the long game" accurately sums it up. I've read several posts that have mentioned the Bloodsugar101 website. I guess it would pay me well to investigate it further. Let's face it, I've got a loooooooong time to digest all of the new knowledge.

 

[photognut]

You can beat the odds by addressing other culprits that feed into creating those statistics. Teeth, eliminating gum disease and maintaining good oral care. Eating anti inflammatory food, which the Low Carb High Fat diet helps to achieve.

 

[Gary1205]

I think it was Mark Twain who said that there are lies **** lies and statistics. You can make statistics say anything you want to really.

For instance I can show how the world population is shrinking. For everyone reading this thread for example it took two people to make us, four to make those two, eight to make those four, sixteen to make those eight and so on so every generation back doubles, so therefore centuries ago the population must have been way bigger than it now based upon this seemingly logical process and yet we know it is not the case even though this particular way of arriving at the statistic is difficult to argue against.

I and am sure all the others who read this forum will manage our diabetes as best we can so that the statistics change as I others have said, it is unknown how many in their calculation have not tried hard enough to manage their condition through either not bothering or not knowing.

 

[carol43]

I'm determined not to let it beat me, if the complications do not arrive for 20 years I'll be 90 and probably won't care. I'm still a bit annoyed that I was immediately put on Metformin without the chance of changing my diet. I have suffered for many years with cysts which is a pointer to diabetes so I have had far too many tests over the last 40 years and it's taken this long to arrive. Just a last word, my OH has seen my weight drop since going LCHF and he is now joining me, looks like my son will be getting a bit of food from the freezer.