Is diabetes progressive?

[childofthesea43]

A very interesting article. Begs more questions than it answers, inevitably. And yet we do read about people who’ve lost weight and put their diabetes into remission. Glad to see research is ongoing though. How very complicated it is!

By contrast I now keep to about 150g daily carbs within which I eat porridge, toast, rice, pasta, potatoes and so on, BUT in a fixed calorie regimen, having found through three years of experimenting that my A1c, fasting glucose and postprandial elevations are all unaffected whether my carbs level is 60g or three times that. I think those who have to keep carbs low despite slimming right down are likely to have permanently compromised pancreases. That’s the root problem, I think, not carbs in themselves. And I don’t think carbs in themselves created that problem, but rather just eating too much overall, in most cases.

 

[AndBreathe]

The theme of this thread has also been my preoccupation for three years. Is T2D truly complex, multi-factorial and manifested in many subtypes? Are carbs really fundamental in causation or mitigation? Not according to Taylor and Lean with whom I have had several exchanges on this very topic. So far -so far - their view is that if you clear the fat away quite soon into the disease state then your prospect of true reversal is over 80% at least, and if you then rigorously maintain the new weight then the prospect of maintaining your reversal is near 100 per cent. And indeed all those initially reversed candidates in Direct who kept their weight unchanged over 5 years also kept their reversed state. Well, so far… we need bigger and much longer trials to see whether this holds true. Some researchers think that although one has rebooted the beta cells and got them back to apparent full health they will have been subtly weakened by the earlier insult and will not thrive as well long term as if one had never become diabetic. Moreover some people have five times as many of these cells as others at start of life.

Some elements of your post beg questions for me, which are rhetorical:

Are most people taking [art in research invested in the research and try to make it work?
Are those who maintained weight for 5 years, well invested, fixated, lucky or just don't like breaking rules?
Would these results be mirrored in patients, not being monitored for research, but having a periodic review of their health?

As I say those questions are rhetorical, but please don't think I am any naysayer. I was diagnosed just over 10 years ago, and got my A1c down, well into the non-diabetic area by 4 months later, and it has remained there since.

During the early period, I trimmed up, and remain trim, with a varied diet, although reduced carb. I consider my lifestyle to be my lifestyle not and not an imposed regime.

 

[childofthesea43]

Some elements of your post beg questions for me, which are rhetorical:

Are most people taking [art in research invested in the research and try to make it work?
Are those who maintained weight for 5 years, well invested, fixated, lucky or just don't like breaking rules?
Would these results be mirrored in patients, not being monitored for research, but having a periodic review of their health?

As I say those questions are rhetorical, but please don't think I am any naysayer. I was diagnosed just over 10 years ago, and got my A1c down, well into the non-diabetic area by 4 months later, and it has remained there since.

During the early period, I trimmed up, and remain trim, with a varied diet, although reduced carb. I consider my lifestyle to be my lifestyle not and not an imposed regime.

Very good questions, rhetorical or otherwise! To answer them with precision we would need a lot of data about the manner in which the candidates had been monitored, advised, regimen-adjusted and so on. I would want to know all sorts of details about their eating and exercise patterns after the second year of the trial and about other aspects of their health and life situations. For myself I think the 5-year outcome was disappointing. On the one hand it vindicated the thesis (so far! so far!) that remission is preserved if reduced weight also is. But on the other hand too many candidates did not preserve their reduced weight and the question is why. I can only guess - I think they had not managed to find a new eating pattern that was so nice to follow that there would be no cause to relapse into weight regain. This is surely the key, and what the new NHS roll-out will have to confront: after our long history of rather poor nutrition, how can we find new ways of eating and living that avoid ever again becoming type-2 diabetic? I am content for life with my own weird regimen of carefully measured out blueberries, coconut chips, chia seeds, gherkins, walnuts, almonds, cheese chunks etc all to the last gram or millilitre, and it keeps my A1c stable. Others have their own equally valid regimens keeping them stable. But too many - vastly too many - have not yet been able to do that, which is very sad.

 

[Valley1]

Good morning everyone, at my most recent diabetic check in August, I was surprised and upset to find my HbA1c had increased despite my best efforts, (mostly!!) There were two diabetic nurses in the room, one was under the guidance of the other. After asking if I could account for the increase, one looked at the other and said, ‘…..progression of the disease?’ I presume the other nodded, but I wasn’t looking.

Now, my understanding was that if you controlled your diabetes well, it no longer needed to be considered progressive. In fact I’ve based all my efforts on believing that ‘fact’. I admit I ‘chose’ to believe it because I wanted to feel I could directly influence the diabetes through my own efforts. This recent increase makes me despondent, thinking, will it progress inspite of anything I do? I want to believe I can influence it for the better, otherwise what’s the point of all this effort?

I have a repeat test, at my request, in early December, and am doing all I can to bring the numbers down, but I was doing that before!!!

Thanks for reading.

Hi, my recent HbA1c result was 50mmol, up from 44mmol a year ago! Like you I felt very depressed hearing this as I thought I had been trying so hard! The diabetic nurse was less than sympathetic and coldly said this is probably just a bit of progression, which made me feel even more angry. Like you I assumed I could have a direct influence over my diabetes and if I worked hard my glucose levels would come down. After a few days of feeling quite low I made a few tweaks to my diet and exercise regime. I also had a 2-week free trial of FreeStyle LibreLink to get a closer look at what spikes my glucose levels. I’ve also read Professor Roy Taylor’s book ‘Life without Diabetes’, which I found very interesting and informative. It’s a shame the NHS don’t take the time to explain Diabetes to patients the way he does, it would help a lot of people understand the disease! However, to reverse diabetes Professor Taylor advises a ‘rapid‘ weight loss plan, which may not be convenient for some, but the main principle of losing weight by seriously reducing calories and controlling portions I think is achievable. The book also includes some tried and tested recipes, which is helpful. I’ve been diabetic since 2019; my HbA1c reading back then was 84! I’m on 1500mg of Metformin a day and I’m hitting age 65 this month, so I hope my advancing age will not cause any progression. My next blood test and review is in January and I’m crossing everything that my HbA1c reading will have come down. I really don’t want more medication!

 

[Teadance]

I was particularly struck by, ‘….the prevalence of diabetes has tripled in China and doubled in India in less than two decades.’ Less than 20 years! What was the diet previously, and what has changed so dramatically in so few years? Could adopting a Western diet cause such increases in so short a time, assuming that’s the cause? Are they or we ever likely to revert to a pre diabetic epidemic diet? Have we simply become more efficient at testing?

 

[Teadance]

Hi, my recent HbA1c result was 50mmol, up from 44mmol a year ago! Like you I felt very depressed hearing this as I thought I had been trying so hard! The diabetic nurse was less than sympathetic and coldly said this is probably just a bit of progression, which made me feel even more angry. Like you I assumed I could have a direct influence over my diabetes and if I worked hard my glucose levels would come down. After a few days of feeling quite low I made a few tweaks to my diet and exercise regime. I also had a 2-week free trial of FreeStyle LibreLink to get a closer look at what spikes my glucose levels. I’ve also read Professor Roy Taylor’s book ‘Life without Diabetes’, which I found very interesting and informative. It’s a shame the NHS don’t take the time to explain Diabetes to patients the way he does, it would help a lot of people understand the disease! However, to reverse diabetes Professor Taylor advises a ‘rapid‘ weight loss plan, which may not be convenient for some, but the main principle of losing weight by seriously reducing calories and controlling portions I think is achievable. The book also includes some tried and tested recipes, which is helpful. I’ve been diabetic since 2019; my HbA1c reading back then was 84! I’m on 1500mg of Metformin a day and I’m hitting age 65 this month, so I hope my advancing age will not cause any progression. My next blood test and review is in January and I’m crossing everything that my HbA1c reading will have come down. I really don’t want more medication!

You’ve done well to reduce it from your initial figure. I haven’t read the book but it sounds like it might be worth it. I’m not sure how I feel about rapid versus more measured weight loss. I wonder how sustainable rapid weight loss is. I was diagnosed about 9 years ago with an HbA1c of 51, so suppose I’ve done well to keep it at 53. Not without a lot of effort, though! I was just despondent that they so casually referred to ‘progression of the disease’ when I genuinely thought it no longer had to be considered that way. To believe I could influence diabetes through my own efforts is what gave me impetus when I was flagging, and I’ll probably choose to continue believing it because I find it helpful! Fingers crossed for good results in January.

 

[Teadance]

Meant to say I’m currently using the Libre 2 after a free trial with it. I find it immensely helpful and it’s been quite an eye opener. Homemade lentil soup produced quite high numbers, while chocolate not so much! (Chocolate it is then!) It also serves to keep me on track as I don’t want to see high numbers. It’s very expensive though.

 

[Valley1]

Meant to say I’m currently using the Libre 2 after a free trial with it. I find it immensely helpful and it’s been quite an eye opener. Homemade lentil soup produced quite high numbers, while chocolate not so much! (Chocolate it is then!) It also serves to keep me on track as I don’t want to see high numbers. It’s very expensive though.

Yes, I found it very helpful, but very expensive. Chocolate over lentil soup… wow!

 

[AndBreathe]

Very good questions, rhetorical or otherwise! To answer them with precision we would need a lot of data about the manner in which the candidates had been monitored, advised, regimen-adjusted and so on. I would want to know all sorts of details about their eating and exercise patterns after the second year of the trial and about other aspects of their health and life situations. For myself I think the 5-year outcome was disappointing. On the one hand it vindicated the thesis (so far! so far!) that remission is preserved if reduced weight also is. But on the other hand too many candidates did not preserve their reduced weight and the question is why. I can only guess - I think they had not managed to find a new eating pattern that was so nice to follow that there would be no cause to relapse into weight regain. This is surely the key, and what the new NHS roll-out will have to confront: after our long history of rather poor nutrition, how can we find new ways of eating and living that avoid ever again becoming type-2 diabetic? I am content for life with my own weird regimen of carefully measured out blueberries, coconut chips, chia seeds, gherkins, walnuts, almonds, cheese chunks etc all to the last gram or millilitre, and it keeps my A1c stable. Others have their own equally valid regimens keeping them stable. But too many - vastly too many - have not yet been able to do that, which is very sad.

I'd agree with much you say.

The early Newcastle Diet (ND) participants were not coached or guides when it came to the period leading up to, or after their period of shakes. 5 years after no support, plus the NHS continued belief on the Eatwell Plate, even for those with metabolic challenges, it isn't surprising some will have had real challeenges.

As I say, I've been around a while, and have observed many folks do the ND, either in the literal sense, or substituting real food instead of shakes (but keeping to the chalorie limits), and so many of them counted down to the end of the period, then had "rewards" for sticking with it. Those rewards were rarely a new shirt, handbag or pair of shoes. Far more regularly it was a doughnut, chips or somesuch.

Thankfully, lessons have been learned, at least a bit, and some support is given over a period longer than the stark initial weeks.

Research is fascinating, but sometimes the interpretation is even moreso.

 

[Dragonheart]

I think those who have to keep carbs low despite slimming right down are likely to have permanently compromised pancreases. That’s the root problem, I think, not carbs in themselves.

In which case the standard advice of eating “normal” carbs in excess of 150g a day isn’t very helpful to them is it? The carbs, whether they caused the issue in the first place or not, make it progressively and significantly worse and harder to manage without ever increasing drugs over the years.

I slimmed down somewhat despite not being clinically obese and kept the weight off. I could vary the calories by quite a lot without any ill effect but bump up the carbs and the effect on weight and bgl was near instant. Opposite to yourself. I was only just over the threshold when diagnosed so I’m not sure how the damage to my pancreas occurred so fast if your suggestion is correct. My single suspect is gallbladder removal 6 months earlier, although this is not a documented side effect I can find any supporting evidence of. It does give some suggestion I had metabolic issues before diagnostic levels were reached (pre diabetes maybe but hba1c was never tested). Low fat diets probably contributed to the gallbladder issue.

I agree entirely that the problem is not all of us are the same. Type 2 lumps together a huge range of problems that need different approaches - yet we are treated all the same (including as someone without diabetes at all) by being advised to consume the Eatwell plate with all its carbs

 

[rebrascora]

My single suspect is gallbladder removal 6 months earlier, although this is not a documented side effect I can find any supporting evidence of. It does give some suggestion I had metabolic issues before diagnostic levels were reached (pre diabetes maybe but hba1c was never tested). Low fat diets probably contributed to the gallbladder issue.

i wonder if this might indicate or suggest you may possibly be Type 3c rather than Type 2 because gall bladder issues can aggravate the pancreas and potentially cause inflammation and damage and might be why your ability to cope with carbs is now permanently impaired despite weight loss maintenance and never having a high HbA1c in the first place.

 

[childofthesea43]

i wonder if this might indicate or suggest you may possibly be Type 3c rather than Type 2 because gall bladder issues can aggravate the pancreas and potentially cause inflammation and damage and might be why your ability to cope with carbs is now permanently impaired despite weight loss maintenance and never having a high HbA1c in the first place.

These are my thoughts too.

 

[childofthesea43]

In which case the standard advice of eating “normal” carbs in excess of 150g a day isn’t very helpful to them is it? The carbs, whether they caused the issue in the first place or not, make it progressively and significantly worse and harder to manage without ever increasing drugs over the years.

I slimmed down somewhat despite not being clinically obese and kept the weight off. I could vary the calories by quite a lot without any ill effect but bump up the carbs and the effect on weight and bgl was near instant. Opposite to yourself. I was only just over the threshold when diagnosed so I’m not sure how the damage to my pancreas occurred so fast if your suggestion is correct. My single suspect is gallbladder removal 6 months earlier, although this is not a documented side effect I can find any supporting evidence of. It does give some suggestion I had metabolic issues before diagnostic levels were reached (pre diabetes maybe but hba1c was never tested). Low fat diets probably contributed to the gallbladder issue.

I agree entirely that the problem is not all of us are the same. Type 2 lumps together a huge range of problems that need different approaches - yet we are treated all the same (including as someone without diabetes at all) by being advised to consume the Eatwell plate with all its carbs

Your case does intrigue me. If upping the carbs causes an enduring elevation of your blood glucose then that suggests an insulin deficiency assuming that you have already eliminated most of your hepatic insulin resistance. But if carbs also elevate your weight then you must have sufficient insulin to do that. I can’t make sense of it. I wonder whether doing a private test of your insulin response would be useful. Still, if low carbs works for you and A1c is not significantly worsening then that may be good enough.

 

[Dragonheart]

i wonder if this might indicate or suggest you may possibly be Type 3c rather than Type 2 because gall bladder issues can aggravate the pancreas and potentially cause inflammation and damage and might be why your ability to cope with carbs is now permanently impaired despite weight loss maintenance and never having a high HbA1c in the first place.

I’ve wondered. I’m now more than 5 yrs post diagnosis and struggling more than I did. I considered LADA too. Even at keto levels of carbs and ideal weight I still couldn’t get under 40mmol.

Nothing I can find suggest the operation would have damaged the pancreas. Could the frequent and severe attacks have done it? None lead to pancreatitis.

 

[Dragonheart]

Your case does intrigue me. If upping the carbs causes an enduring elevation of your blood glucose then that suggests an insulin deficiency assuming that you have already eliminated most of your hepatic insulin resistance. But if carbs also elevate your weight then you must have sufficient insulin to do that. I can’t make sense of it. I wonder whether doing a private test of your insulin response would be useful. Still, if low carbs works for you and A1c is not significantly worsening then that may be good enough.

Yeah I keep planning to get further testing. The cost is quite prohibitive though. And I procrastinate. Hba1c is climbing, particularly since covid last year. I may have to bite the bullet and get it done to clear the possibility from my mind one way or the other.

others that need to keep very low exist though and aren’t unusual in the low carb community. Who knows why in their cases I can only speak for my issues.

 

[childofthesea43]

Yeah I keep planning to get further testing. The cost is quite prohibitive though. And I procrastinate. Hba1c is climbing, particularly since covid last year. I may have to bite the bullet and get it done to clear the possibility from my mind one way or the other.

others that need to keep very low exist though and aren’t unusual in the low carb community. Who knows why in their cases I can only speak for my issues.

Another confounding factor is red cell count because since A1c is only the fraction glycated it seems intuitive that, for a fixed level of glucose, one’s A1c would rise if one’s red cell count fell. This is why the elderly have raised A1c whether diabetic or not. My own count is very low indeed and I reckon that if that were not so then my measured A1c would be well down in the 30s instead of 41. Do you know how your red cell count has been behaving?

 

[rebrascora]

I’ve wondered. I’m now more than 5 yrs post diagnosis and struggling more than I did. I considered LADA too. Even at keto levels of carbs and ideal weight I still couldn’t get under 40mmol.

Nothing I can find suggest the operation would have damaged the pancreas. Could the frequent and severe attacks have done it? None lead to pancreatitis.

I believe you can get "silent" pancreatitis, which I think can be caused by repeated irritation of the gall bladder/bile duct.
My mother had 3 very acute bouts of pancreatitis and it was related to/caused by her gall bladder issues. She was never, to the best of my knowledge, checked for diabetes, but I now suspect that may be why she ended up having strokes which ultimately killed her, but she also had other digestive issues which seriously affected her quality of life and I am now sure were linked to pancreatic damage from the pancreatitis. Sadly I knew nothing about diabetes at that time as I was not diagnosed myself. Now I look back on her symptoms and wish I had known what I know now, so that I could have pushed for appropriate testing and treatment.
I suspect diabetes due to pancreatic damage ie Type 3c may well be far more common than is currently diagnosed because it is far too easy to stick the Type 2 label on people without looking any further.

 

[rebrascora]

Yeah I keep planning to get further testing. The cost is quite prohibitive though. And I procrastinate. Hba1c is climbing, particularly since covid last year. I may have to bite the bullet and get it done to clear the possibility from my mind one way or the other.

others that need to keep very low exist though and aren’t unusual in the low carb community. Who knows why in their cases I can only speak for my issues.

I wonder if an ultrasound of your pancreas might be cheaper and give an indication of whether that might be the issue.

 

[childofthesea43]

I believe you can get "silent" pancreatitis, which I think can be caused by repeated irritation of the gall bladder/bile duct.
My mother had 3 very acute bouts of pancreatitis and it was related to/caused by her gall bladder issues. She was never, to the best of my knowledge, checked for diabetes, but I now suspect that may be why she ended up having strokes which ultimately killed her, but she also had other digestive issues which seriously affected her quality of life and I am now sure were linked to pancreatic damage from the pancreatitis. Sadly I knew nothing about diabetes at that time as I was not diagnosed myself. Now I look back on her symptoms and wish I had known what I know now, so that I could have pushed for appropriate testing and treatment.
I suspect diabetes due to pancreatic damage ie Type 3c may well be far more common than is currently diagnosed because it is far too easy to stick the Type 2 label on people without looking any further.

Very interesting line of thought there.

 

[Leadinglights]

I believe you can get "silent" pancreatitis, which I think can be caused by repeated irritation of the gall bladder/bile duct.
My mother had 3 very acute bouts of pancreatitis and it was related to/caused by her gall bladder issues. She was never, to the best of my knowledge, checked for diabetes, but I now suspect that may be why she ended up having strokes which ultimately killed her, but she also had other digestive issues which seriously affected her quality of life and I am now sure were linked to pancreatic damage from the pancreatitis. Sadly I knew nothing about diabetes at that time as I was not diagnosed myself. Now I look back on her symptoms and wish I had known what I know now, so that I could have pushed for appropriate testing and treatment.
I suspect diabetes due to pancreatic damage ie Type 3c may well be far more common than is currently diagnosed because it is far too easy to stick the Type 2 label on people without looking any further.

I am perplexed by my other half's mother who had acute pancreatitis many years ago, had some sort of surgery which saved her life (in Rhodesia) but never had any medication, true she struggled with fatty foods and dairy products until the last couple of years of her long life when she suddenly seemed to tolerate them better and lived on chocolate in the last few months before she passed away aged 98.