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

mungocat · Sep 4, 2015

Alisonjane10 said:
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

DawnPhenomenon · Sep 4, 2015

Alisonjane10 said:
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

There are many people living with diabetes who have not been diagnosed. They may have had the condition for many years. The reason they have not been diagnosed is that they have no symptoms (or their symptoms are not severe enough for them to seek medical help). I know how dangerous diabetes is, I've seen people lose their sight, have their toes feet and legs amputated and ultimately suffer kidney failure. One guy was 50 when he died. But, that doesn't make complications inevitable.

Alzebra · Sep 4, 2015

Celeriac said:
My first HbA1c was 13% - off the chart and yet I didn't have the tiredness, weight loss, blurred vision, frothy pee etc. I was put on Metformin immediately, and I was peeved but now I can see why my GP did that though.

I developed retinopathy then maculopathy and was told that I needed laser treatment. I freaked, asked for time to think about it. In the meantime I had gone organic and 6 months later my maculopathy had almost completely gone. Consultant showed me the dramatic photos.

It is hard work. I was the worst case GP had ever seen, he wasn't convinced about LCHF and worried about me. But knowing that I've improved my health dramatically is worth it.

LCHF is not a cure for diabetes of any type, but it can really help.

Thank you so very much for sharing this @Celeriac . I was told I had mild background diabetic retinopathy in January and it scared the beejeezus out of me. I would sooner lose both feet to diabetes than go blind (though preferably neither!). My next eye screening is due around Christmas and I'm really hoping my weight loss and improved HbA1c will have a positive effect. Interestingly my optician just reduced my prescription for short-sightedness and told me my eyesight has improved

Mybesteffort · Sep 7, 2015

Hi.

I don't think I have to expect all the really scary things that might happen to me.

I am trying to deal with a diagnosis type 2 and get my diabetes under control.

I guess I will ask the active (80 years plus) how they managed their diabetes

Take it easy.

Pollylocks · Sep 16, 2015

I don't think its inevitable....I was diagnosed with Type 2 in 1999 when I was 49, my HbA1c was over 16 in old money. I was put on Metformin for a very short while until I got it under control. I followed the Eatwell plate then as I knew no better. I didn't get worse over the years, I improved for a long time, lost 2 stone.

Was put back on Metformin SR in 2012 as my readings had crept up, one 500mg twice a day and it was then I joined this forum and found out about LCHF...I lowISH carb and highISH fat now and over the last three years my HbA1C [in new money!] have been 56, then 48 and last one was 43 or 41, cannot remember which exactly. DN pleased and I'm hoping to come off them !

My eye results have always been clear [just waiting for the results of the latest, nearly two weeks ago] and I don't have retinopathy.

I've always been careful with my diet and exercise since I was diagnosed [well. I thought I was, didn't know about low carbing then as I said] but have the odd food lapse, don't we all.

Not sure if I've been lucky or if its because I have been fairly controlled, maybe a mix of both.

Have always noticed that the many of you in this forum are fairly new to diabetes, please don't be downhearted by the start post, am sure there are many more like me who've had Type 2 for years, 16 in my case, and are doing okay

Celeriac · Sep 16, 2015

I took part in a RNIB telephone discussion group recently about a proposed revamp of the leaflet for people with diabetes. In January they will be launching a helpline specially for people with diabetes to discuss worries, treatment, impaired vision etc.

Deleted Account · Sep 30, 2015

I am type 1 (not type 2) and I am saddened by some of the posts. The initial question raised two points:
- injecting insulin within 7 years
- risk of diabetic retinopathy.

Whilst your main question is about retinopathy, I want to address the first point as well: with type 1 diabetes, I have never had any option but to inject insulin. And, given it keeps me alive, I do not find it frightening at all. Frustrating, yes, but probably not any more than having to pop pills when I eat (which I don't have to do so this is only my gut feel).

As for your second point - I have had diabetes for 12 years and, over that time, maintained my blood sugars well. Unfortunately, I have some mild retinopathy. It's there but it does not affect me and I have been advised (by multiple consultants) that it does not require any treatment and can very likely remain at this level for the rest of my life. So, based on my very small sample of one, I would suggest that the article you have read is scary - anything to do with the eyes (or heart or ...) is frightening but just because you have a condition of the eyes, does not mean you are going to lose your eye sight.

As many others have said, be positive, manage your diabetes and, whilst not ignoring the possibility of complications, don't focus on them.

CollieBoy · Sep 30, 2015

my take on inevitability of insulin & complications is this:
I started my diagnosis on insulin and weaned myself back off!
No one gets out of this existance alive!
I'm going to try to slow the progression of the probability of needing insulin & having complications so that I pop off for some other reason!

Caesar · Sep 30, 2015

helensaramay said:
As for your second point - I have had diabetes for 12 years and, over that time, maintained my blood sugars well. Unfortunately, I have some mild retinopathy. It's there but it does not affect me and I have been advised (by multiple consultants) that it does not require any treatment and can very likely remain at this level for the rest of my life. So, based on my very small sample of one, I would suggest that the article you have read is scary - anything to do with the eyes (or heart or ...) is frightening but just because you have a condition of the eyes, does not mean you are going to lose your eye sight.

The article may also be scary but all diabetes can be! There are at least 3 different stages of retinopathy (http://www.diabetes.co.uk/diabetes-complications/diabetic-retinopathy.html?utm_source=Communicator&utm_medium=Email&utm_content=Untitled22&utm_campaign=Aching+eyes+++retinopathy&utm_dispatch ID=3629262&utm_email name=DCUK+-+29/09) and your @helensaramay (background? - I suppose) retinopathy experience may be different from other people's case. I've decided to invest my money on my health and purchased about a year ago that Noctura 400 mask mentioned in the article as well as CGM systems (Dexcom G4 first, which I've more recently replaced with the Freestyle Libre - flash glucose monitoring - cheaper to run). I'm type 1 by the way and that can make a difference but I don't understand why I should fear for my life everyday when there are already options available out there. Money??? Everybody's free to judge its own case here but I still believe that preventing worth much more than treating.

Pinkorchid · Sep 30, 2015

No of course it is not inevitable but it is uncertain as to who will have complications or need insulin injections none of us can see into the future.There are hundreds of T2's who after years of T2 don't have any complications or are on insulin injections We heard some stories on a thread here about people in their 80'/90's who are still doing well so that shows complications and injections are not inevitable for all T2's

Edgecop · Oct 1, 2015

Gary1205 said:
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.

You have a point re stats as I would counter that 2 people made me and my brothers (total 4) we have 12 children now so 8 (4 couples) makes 8 suggests a different scenario of increasing population.

Mark twain obviously had a point

lessci · Oct 1, 2015

Alisonjane10 said:
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.

There is a very old quote, not sure who said it that goes "There are Lies, **** Lies and Statistics" in otherword they can be manipulated to say whatever the researcher wants them to say to prove their point of view/research. eg I could say that 68.6% of statistics are made up on the spot!

Mep · Oct 3, 2015

I had to start insulin about 12 years after being diagnosed. But I think I probably should've started earlier than that, but docs were insisting on trialling all these meds on me before admitting I definitely had a problem. When the diagnostic tests (GAD & c-peptide) were done again my endo said no amount of oral meds will help you because you produce hardly any of your own insulin... you need to take insulin for life now. He then explained that a lot of type 2's progress and that it isn't unusual and he sees it a lot. But from my perspective this is not advertised in the media about type 2. You only ever hear about if you control your diet and exercise you can control type 2. They never talk about all the different treatments and what happens when you've had it a while and what to look out for. It did come as a shock to me at first, but to be honest it meant better control of my sugar which was a big plus. I got over the initial having to inject myself after the first injection... I inject wherever now. Prior to insulin I was getting nowhere and getting very frustrated. I'm now quite sick with various other illnesses and I often wonder about the 5 years of oral meds I was on.... I was put on them in 2005 and started getting real sick in 2008. It was after I got sick actually that my sugar control really wasn't that great. In 2010 I finally spat the dummy (wasn't happy) and insisted they investigate me properly. I'm still having issues now and then but it is hard to manage things at times for me all round... I deal with a lot of pain and fatigue. I would tell any type 2 to not be scared though... you'd rather know what is happening than not and get that control. I try not to worry about the "what ifs" I suppose.

Alisonjane10 · Oct 3, 2015

Thank you to everyone who has contributed to this thread. It was a question I needed to ask after receiving an alarming newsletter. Although I had my own opinion, I did not have the experience of many forum members in managing diabetes effectively over several years. I was diagnosed in February this year, so had months rather than years of experience under my belt.
On reflection, Some posts have educated, encouraged & have given good advice. Whereas some posters have taken the question personally as a sort of criticism. That was never my intention. It was merely a way to elicit opinions & advice from those with far more experience than myself.

@AndBreathe made an excellent observation: "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." I agree wholeheartedly. People who have been diagnosed with diabetes, & who have then gone on to do their own research, and subsequently join this forum, are likely more motivated to effective diabetes management. Certainly, the success stories we regularly read about on the forum confirms that theory. And long may it be so.

@Brunneria was not only able to reduce any initial concerns, but also discussed her own personal aims of effective diabetes management. The visual diagram was particularly useful to me & I was able to understand the ethos of "the 5% club." And I have adopted this strategy. I am not successful in always remaining below 7.0 postprandial. But 98% of the time I do. And so far, I'm happy to say, my FBG's are well within that 5% club aim.

So, I guess how we manage our diabetes with diet, medication or both, is the ultimate strategy in minimising the risk of complications. If some Type 2 diabetics manage their BG with insulin, then so be it. It certainly makes more sense to me to have tight glycaemic control with insulin, rather than high numbers without it. This "I'm a better diabetic than you" mentality, when someone takes no medication for glycaemic control, drives me nuts!! It's even worse than pitting Type 1's against Type 2's. Soooo unnecessary, & **** well insulting too. Good blood glucose control is paramount for all diabetics, however we achieve it.

I will be doing whatever I can to maintain good BG numbers, improve fitness & minimise the risk of diabetes complications. If complications happen anyway, it won't be because I haven't tried, and I'll deal with that as & when necessary. Good luck & good health to us all.

Mep · Oct 3, 2015

I

Alisonjane10 said:
So, I guess how we manage our diabetes with diet, medication or both, is the ultimate strategy in minimising the risk of complications. If some Type 2 diabetics manage their BG with insulin, then so be it. It certainly makes more sense to me to have tight glycaemic control with insulin, rather than high numbers without it. This "I'm a better diabetic than you" mentality, when someone takes no medication for glycaemic control, drives me nuts!! It's even worse than pitting Type 1's against Type 2's. Soooo unnecessary, & **** well insulting too. Good blood glucose control is paramount for all diabetics, however we achieve it.

I agree with you on that... there should be no competition. Also people do not necessarily know the circumstances of another diabetic. We also have other illnesses. For me I was diagnosed with PCOS and diabetes on the same day. When I got to the point of having to be on insulin I do recall my endocrinologist telling me it is not my fault and that everyone is different. He just explained it is the nature of the disease. It is important that we all support each other and not put each other down. I do not agree with insisting people do things a certain way to manage things because what works for me, may not work for them. I do just share my experience and leave it at that. I've been on some diabetic forums in the past and people were outright nasty with the us and them mentality and insisting diet must be a certain way, and you should be doing this, that. or the other to be a good diabetic. So far I've not seen that really on here... glad because it is not appropriate. I'm glad you posted this

ButtterflyLady · Oct 4, 2015

Alisonjane10 said:
If some Type 2 diabetics manage their BG with insulin, then so be it. It certainly makes more sense to me to have tight glycaemic control with insulin, rather than high numbers without it. This "I'm a better diabetic than you" mentality, when someone takes no medication for glycaemic control, drives me nuts!! It's even worse than pitting Type 1's against Type 2's. Soooo unnecessary, & **** well insulting too. Good blood glucose control is paramount for all diabetics, however we achieve it.

I totally agree with you about insulin being better than high BGs, for those who need it. And I so agree about the competitive stuff we sometimes see on the forum. We don't know everything about a person and we have no right to think less of them because they do or don't take meds or whatever. Lots of us have complex medical needs and our treatment options are fewer than those who only have T2. Pitting T1s against T2s is a breach of the forum rules, as is being extremely insistent about eating methods. We're all supposed to be here to give and receive support.

Alisonjane10 · Oct 4, 2015

Eloquently summed up @CatLadyNZ. Thank you for all of the advice you've posted on this thread. Your opinion is valued.

Living-by-the-beach · Oct 6, 2015

Alisonjane10 said:
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

@Alisonjane10

The letter you got was like my first meeting with the "Endo-Witch doctor from Kiev". I didn't like this endo so she was fired after our first meeting. Yup, coaches aren't meant to be your friends, and that letter is designed to scare the living daylights out of most people. I do know of one homeless guy here in Los Angeles who has had both legs chopped off below the knee because of T2DM complications, so it is sound to put the "Living daylights" of a scare into every newly diagnosed T2DM sufferer.

I was diagnosed 18 months ago and I've lost 60lbs and have a BMI in the 23's range. I have adopted an intense daily weights routine to truly get in front of my T2DM. I had hoped that the weight I'd lost would automatically put me back to non-diabetic numbers but I am not so lucky. Still where I'm weight lifting with GVT protocol (German volume training) I am getting way more consistently better numbers. I am getting less neuropathy and I generally feel better. There are no guarantees of remission or constant progression of T2DM. Today is what you make it as is tomorrow and the future tomorrows.

I am working on putting my T2DM into remission. Hopefully that letter will inspire you too. I know my Endo-Witch has inspired me!

TerryR · Dec 24, 2015

Alisonjane10 said:
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

I was diagnosed with Type 2 Diabetes in February 1997, since which time I have been taking 1000mg Metformin twice daily and 4mg Glimepiride each morning. I keep to a low carb diet - though not ultra low - and my blood-sugar levels average around 6.1. Moving towards insulin has never been considered by my Medical Team and my annual retinopathy tests show no changes since I was first diagnosed. I have no problems with neuropathy or reduced blood-flow to feet or hands. The above prognosis, then, is not necessarily accurate. Clearly you need to monitor your carbohydrate intake, but there is no reason to believe that moving onto insulin and retinopathy are inevitable!

Dicky1 · Dec 25, 2015

Alisonjane10 said:
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

Hi,
I've been T2 for 35 yrs and I am still on tablets,so don't worry insulin is not inevitable.
Regards, Dicky1

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

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