T2 or NAFLD? ...or, a funny thing happened on the way to the surgery

[Chris24Main]

Oh my goodness, @Chris24Main you are my brother from another mother! I am the bane of my surgery's 'diabetes nurse' as I know more than her about my type of diabetes, (I had to go private to get my diagnosis changed from T2 to T1 based on my symptoms and blood results etc!), so she won't even speak to me now, doesn't even contact me with blood results as I will have looked at them online and understood them already, and no longer asks me to take statins because I won't! My cholesterol is in range for a non-diabetic and my HbA1c is also in non-diabetic range, so they can't argue a good case!

My consultant refers to me as 'one of his specials' and 'extremely well-read' in his notes to my GP, (aka don't try to pull the wool over her eyes, as she will put you right!).

If you mentioned the result of your anti-body tests, sorry I missed them, but as all mine were originally strongly positive, I am a non-insulin dependent T1/LADA treated with only metformin, diet (low carb <100g/day), and exercise (20-30mins brisk walking per day, preferably after breakfast). I had a 3 week failed trial of insulin, that was not needed (I was scoffing sweets not to hypo on the smallest amount).

I follow Jessie Inchauspé (without the vinegar and less carbs!), and turned my BG round super-quick within 3 months, (albeit with some temporary side effects), and I have stayed in non-diabetic range for the last 2 years. In that time my antibodies have 'strangely' reduced, but not in the normal way, ie. in response to no cells left to destroy, as my insulin production has remained the same (according to my Libre/HbA1c and unchanging diet).

It is thought I was both insulin resistant and suffering from lowered insulin production at diagnosis, and I am staying on 1000mg metformin for its positive side effects in making better use of my insulin, heart protection and possible link with preventing dementia etc. (NB. if you are no longer on any diabetic meds you will not be entitled to free prescriptions - I'm not sure if Libre counts, although I am not allowed to be given mine if the pharmacist does not give the OK before handing them over).

My diabetic presentation and insulin response is believed to be, (as I suspected from about a week after being diagnosed and reading, reading, reading), due to a huge immune response to my covid vaccinations, (rather than an actual illness/viral response, as suspected to usually trigger LADA); way more research is needed but unlikely to be establish retrospectively; so my consultant and I are going for the 'keep doing exactly what you're doing as it's working, until it doesn't' approach, because it could be a 'different/new' type of diabetes as it just doesn't fit the usual algorithm.

Keep up the good fight, it's your health and in the current system it really does pay to be your own advocate.

Wow - yes... I'm sure there are a lot more fringe cases like ours, but it sounds like you have also been put through the ringer...

I felt patronised and overwhelmed in my consultant appointment - the diabetes support nurse I had dealt with up till that point came in after the start of the appointment and sat silently in the back of the room - the whole thing felt like an interrogation technique of good-cop bad-cop.. I half expected a 'don't look at him, you're talking to me now...' if I looked back at the nurse for support...

and - I've had nothing but support and encouragement otherwise.. except that the whole diagnosis and treatment plan has been totally wrong...
but I do feel for the GPs, they don't have enough time, and I know I've been less than 100% honest in a GP room, so they have to expect that...

As it happens, I've begun to like the cider vinegar thing - there is a new product from Aspalls, more 'raw' .. cloudy vinegar, but I swear with some fizzy water, it actually tastes like their actual cider, positively tasty even....

That aside... yes; though it took 5 months to hear the result, I was negative to all four measurable anti-bodies.. it was really that I presented so suddenly, and with a recent history of weight loss, and very high blood sugar, that it was just felt that -better to be safe - and treat me as late onset type 1. Totally wrong, but I do understand that it was the right decision at the time.. unless there had been better understanding of non-alcoholic fatty liver disease.

My sense of some of this, is that there is still a lot of uncertainty about the Pancreas. And that all centres around whether there is a mechanism for progressive 'destruction' of insulin production in the beta cells. You will have had many similar explanations.. and I struggled to make sense of it, because nobody could give me a simple explanation as to what was, or might be, causing my Pancreas to gradually stop creating insulin. One explanation sounded a lot like 'you have a finite amount of insulin' and one talked about the 'rate of destruction' .... but I would listen to this lecture by Jason Fung

in which he really breaks down the way that T2 treatment is often focussed on controlling blood sugar level, when it's really a question, and always has been, about reducing total body glucose and insulin, at which point, the Pancreas (having been thrashed into over-production of insulin) can take a breather, and will recover to normal levels..

I was also told that Metformin would reduce insulin resistance and make better use of my insulin. Really it only gives the appearance of doing that, by blocking the liver from producing glucose, thereby reducing the amount of insulin in your blood, which looks like a reduction of insulin resistance, but if you see insulin resistance as simply too much glucose stuffed in your cells - then it really isn't addressing that - only reducing glucose will do that...

Then the 'making better use' thing - all of that is based on the outdated 'internal starvation' model of diabetes - making better use, means more effectively overcoming whatever unexplained mechanism that is stopping the insulin from packing glucose into your cells. If the actual problem is that your cells are already overstuffed with glucose, then there isn't really a 'making better use' - there is only reducing glucose...

My GP also discussed COVID- she had seen some cases that seemed to suggest that COVID had 'stunned the Pancreas' in some way, and that this may have been what had happened to me... I don't think it was, but that sounds much more like your case- if you were initially strongly positive for anti-bodies - does that mean there is a change now?

Is there anything you could point me at in terms of the vaccine response you mention - I've gladly taken every vaccine injection offered, and been happy and grateful to do so, but understanding diabetes and Covid as diseases that effect the Endothelium, there are definitely links, so I'll add anything to my reading list.

And - thanks sincerely for the comment - totally agree, and actually - the most significant thing I'm taking from this whole experience, is how much there is to learn about such basic things we have taken for gospel all our lives (well, those of us who were kids in the Seventies, anyway) and how much of an improvement we can all make for our own personal long term health...

 

[HSSS]

it's that I cannot feasibly have gone from healthy to Diabetic in two months, and if the problem is short term liver fattening, then a short term extreme diet is worth trying if it means there is hope of reversing the condition rather than thinking in terms of controlling it for the rest of my life.

Why do you think you went from healthy to diabetic in 2 months? Did you ever actually get the results from the study or are you trusting you’d hear from them? Do you have any hba1c or even fasting blood glucose tests from before diagnosis and is there really a huge and rapid increase? The years of beer belly you mentioned would have kick started/indicated the metabolicall challenged state that precedes pre diabetes and type 2. Yes the fitness regime just before diagnosis would have put some brakes on it but also depending on what you were eating not stopped it entirely. You may in fact have delayed diagnosis by some years til the honey tipped you over the, long and slowly approaching, edge. Fatty liver is an extremely common part of type 2/metabolic syndrome.

I‘d also add most drs now refer to remission as under 48mmol and not on medication after a long await agreement of the definition a couple of years ago. Please do note that’s not “cure”, more of a lifestyle managed control thing and return to any of the factors that caused your type 2 means it’s lurking in the background ready to resurge in a way much easier and quicker than it did initially

Otherwise I’d say you’ve come to the same conclusions as many of us in here about type 2 even though most of us didn’t come here via a type 1 misdiagnosis.

 

[Chris24Main]

Why do you think you went from healthy to diabetic in 2 months? Did you ever actually get the results from the study or are you trusting you’d hear from them? Do you have any hba1c or even fasting blood glucose tests from before diagnosis and is there really a huge and rapid increase? The years of beer belly you mentioned would have kick started/indicated the metabolicall challenged state that precedes pre diabetes and type 2. Yes the fitness regime just before diagnosis would have put some brakes on it but also depending on what you were eating not stopped it entirely. You may in fact have delayed diagnosis by some years til the honey tipped you over the, long and slowly approaching, edge. Fatty liver is an extremely common part of type 2/metabolic syndrome.

I‘d also add most drs now refer to remission as under 48mmol and not on medication after a long await agreement of the definition a couple of years ago. Please do note that’s not “cure”, more of a lifestyle managed control thing and return to any of the factors that caused your type 2 means it’s lurking in the background ready to resurge in a way much easier and quicker than it did initially

Otherwise I’d say you’ve come to the same conclusions as many of us in here about type 2 even though most of us didn’t come here via a type 1 misdiagnosis.

Thanks for the comments - much appreciated.

Apologies if I come across in some ways, I don't know 'I'm special - it couldn't have happened to me unless something totally abnormal has occurred' ...

You may well be correct that the study in April would have shown a high HbA1C - there's no way to know, and yes, absolutely I cannot say that I've lived a perfect life in terms of metabolism, or in any other sense.. far from it.

What was surprising to me, though, was that in April of last year, I had come to the end of a three plus year journey of fighting back to a healthy weight and fitness level that I had had most of my life, but had definitely let slip, through the demands of work and family that most of us go through - I was nothing special in any way, but when I turned 50, I decided that I probably had one more chance to get my health in order.. So I started to cut calories and get up at 6am to do a half hour session on my cross trainer. Over the course of 3 years I lost about 3 stone, and got back to a level of fitness I'd lost since my twenties.. it really wasn't a question of a fitness regime just before diagnosis... it was a long hard disciplined road.

Again - nothing special, anyone can do this... and overall I was keeping the weight off, and even when I was diagnosed type 1 in June, I had a flat stomach - it was only with the insulin that my belly visibly started to bulge again... <grin>

So - the short answer is that I don't know... I could somehow have been going through the same 10 year cycle of building insulin resistance that's behind the 'statistically likely' route to T2 - at the same time as losing 3 stones... but the point that really stuck in my craw, is that - come on - I'd done everything by the book - I'd studiously counted all my calories for three years; I'd eaten almost no fat, and certainly no saturated fat - and done increasing amounts of Cardio- I was as fit as I remember being at Twenty, and I was a fit twenty year old - if I still fall straight into diabetes after doing all of that - well the advice must be wrong... and for me it was a total misunderstanding of the way that fat and sugar are digested (and more specifically fructose).

And what I'm realising now - is that most of what I thought to be totally incontrovertible - you must minimise saturated fat, you must cut out full fat milk, semi skimmed with your cereal, make sure you have something high in fibre like Bran Flakes, be sure to cut off the fat from your steak, cut down on eggs, cut down on red meat, nuts have too much fat, choose the low fat hummus, make sure you have a snack if your energy levels are flagging, keep hydrated at all times, lots of fruit is good... all of that, and still, I'm on statins and insulin... and looking at progressively falling down a dark hole with terrifying health outcomes - I feel really angry that so much of this BS is still felt to be the way to live...

Really, really angry, but also grateful that I've been given the option and the motivation to be able to make better choices, and turn things around while there is still time.

I do understand that remission is a long term game, and I'm totally sure that I don't hold the key to some kind of epiphany only I can see.. but at the same time, I can only talk to my own experience... and part of the motivation in my case is that -- if what I've done is really more akin to fattening up a goose before slaughter; that can be done in 2 months, it doesn't take 15 years... and if so, then a drastic change to diet - in the form (again for me) of a rolling 36 hour fast and zero carb diet on eating days is what it might take to reverse that - and so far that seems to be working - my HbA1C is 42 and I'm on zero meds.

That doesn't mean that this will work for anyone else, but I also then feel that maintaining a lower intake of carbs (read - sugar) as a long term change, means that there isn't something lurking in the shadows either. In doing this, I've discovered just how beneficial this kind of intermittent fasting is (for me...) and I don't think I will ever stop, in fact I'm going to have to deliberately reduce the number of fasting days per week, but the benefits of fasting go way beyond reversing T2D...

Best,
Chris

 

[HSSS]

Thanks for the comments - much appreciated.

Apologies if I come across in some ways, I don't know 'I'm special - it couldn't have happened to me unless something totally abnormal has occurred' ...

You may well be correct that the study in April would have shown a high HbA1C - there's no way to know, and yes, absolutely I cannot say that I've lived a perfect life in terms of metabolism, or in any other sense.. far from it.

What was surprising to me, though, was that in April of last year, I had come to the end of a three plus year journey of fighting back to a healthy weight and fitness level that I had had most of my life, but had definitely let slip, through the demands of work and family that most of us go through - I was nothing special in any way, but when I turned 50, I decided that I probably had one more chance to get my health in order.. So I started to cut calories and get up at 6am to do a half hour session on my cross trainer. Over the course of 3 years I lost about 3 stone, and got back to a level of fitness I'd lost since my twenties.. it really wasn't a question of a fitness regime just before diagnosis... it was a long hard disciplined road.

Again - nothing special, anyone can do this... and overall I was keeping the weight off, and even when I was diagnosed type 1 in June, I had a flat stomach - it was only with the insulin that my belly visibly started to bulge again... <grin>

So - the short answer is that I don't know... I could somehow have been going through the same 10 year cycle of building insulin resistance that's behind the 'statistically likely' route to T2 - at the same time as losing 3 stones... but the point that really stuck in my craw, is that - come on - I'd done everything by the book - I'd studiously counted all my calories for three years; I'd eaten almost no fat, and certainly no saturated fat - and done increasing amounts of Cardio- I was as fit as I remember being at Twenty, and I was a fit twenty year old - if I still fall straight into diabetes after doing all of that - well the advice must be wrong... and for me it was a total misunderstanding of the way that fat and sugar are digested (and more specifically fructose).

And what I'm realising now - is that most of what I thought to be totally incontrovertible - you must minimise saturated fat, you must cut out full fat milk, semi skimmed with your cereal, make sure you have something high in fibre like Bran Flakes, be sure to cut off the fat from your steak, cut down on eggs, cut down on red meat, nuts have too much fat, choose the low fat hummus, make sure you have a snack if your energy levels are flagging, keep hydrated at all times, lots of fruit is good... all of that, and still, I'm on statins and insulin... and looking at progressively falling down a dark hole with terrifying health outcomes - I feel really angry that so much of this BS is still felt to be the way to live...

Really, really angry, but also grateful that I've been given the option and the motivation to be able to make better choices, and turn things around while there is still time.

I do understand that remission is a long term game, and I'm totally sure that I don't hold the key to some kind of epiphany only I can see.. but at the same time, I can only talk to my own experience... and part of the motivation in my case is that -- if what I've done is really more akin to fattening up a goose before slaughter; that can be done in 2 months, it doesn't take 15 years... and if so, then a drastic change to diet - in the form (again for me) of a rolling 36 hour fast and zero carb diet on eating days is what it might take to reverse that - and so far that seems to be working - my HbA1C is 42 and I'm on zero meds.

That doesn't mean that this will work for anyone else, but I also then feel that maintaining a lower intake of carbs (read - sugar) as a long term change, means that there isn't something lurking in the shadows either. In doing this, I've discovered just how beneficial this kind of intermittent fasting is (for me...) and I don't think I will ever stop, in fact I'm going to have to deliberately reduce the number of fasting days per week, but the benefits of fasting go way beyond reversing T2D...

Best,
Chris

Sorry I wasn’t criticising you. More agreeing that many of us have gone through a similar epiphany that the advice is in fact wrong and what we thought was incontrovertible is not in fact the case and had the same anger. I for instance had a number of blood tests that warned of the approach except no one bothered to tell me let alone give any decent advice how to avoid it. Wait til you dig into statins, cholesterol and fats!

You have made astounding and serious efforts and that along with ongoing maintenance gives you very good hope of avoiding that dark hole. It has indeed worked for others and we too have been as keen to shout about it from the roof tops. Keep doing so and you may just help others realise what are real options in the diabetes toolkit

 

[ajbod]

I always think of this now.

 

[Chris24Main]

Sorry I wasn’t criticising you. More agreeing that many of us have gone through a similar epiphany that the advice is in fact wrong and what we thought was incontrovertible is not in fact the case and had the same anger. I for instance had a number of blood tests that warned of the approach except no one bothered to tell me let alone give any decent advice how to avoid it. Wait til you dig into statins, cholesterol and fats!

You have made astounding and serious efforts and that along with ongoing maintenance gives you very good hope of avoiding that dark hole. It has indeed worked for others and we too have been as keen to shout about it from the roof tops. Keep doing so and you may just help others realise what are real options in the diabetes toolkit

Totally understood - Do appreciate the clarification; I'm trying to be very mindful of my own need to ... I guess ... vigorously test and argue things that I'm coming to understand in general and how they pertain to my own situation, but at the same time be mindful that not everyone on this forum will have the same experiences or opinions, and that what may be cathartic to me might be challenging or dismissive to someone else.

I was surprised at how angry I felt writing that reply though - not at you by any means, but at the way we are set up to fail... and then be expected to feel meek and take our medicine...
Truly - thanks for the opportunity to go into that, it's why I'm here...
Best,
Chris

 

[HSSS]

Totally understood - Do appreciate the clarification; I'm trying to be very mindful of my own need to ... I guess ... vigorously test and argue things that I'm coming to understand in general and how they pertain to my own situation, but at the same time be mindful that not everyone on this forum will have the same experiences or opinions, and that what may be cathartic to me might be challenging or dismissive to someone else.

I was surprised at how angry I felt writing that reply though - not at you by any means, but at the way we are set up to fail... and then be expected to feel meek and take our medicine...
Truly - thanks for the opportunity to go into that, it's why I'm here...
Best,
Chris

Totally understood. Been there. Revisit those feelings from time to time too. This place has been a saving grace for venting, sharing, learning and finding others that get it. Stick around.

 

[Melgar]

Oh my goodness, @Chris24Main you are my brother from another mother! I am the bane of my surgery's 'diabetes nurse' as I know more than her about my type of diabetes, (I had to go private to get my diagnosis changed from T2 to T1 based on my symptoms and blood results etc!), so she won't even speak to me now, doesn't even contact me with blood results as I will have looked at them online and understood them already, and no longer asks me to take statins because I won't! My cholesterol is in range for a non-diabetic and my HbA1c is also in non-diabetic range, so they can't argue a good case!

My consultant refers to me as 'one of his specials' and 'extremely well-read' in his notes to my GP, (aka don't try to pull the wool over her eyes, as she will put you right!).

If you mentioned the result of your anti-body tests, sorry I missed them, but as all mine were originally strongly positive, I am a non-insulin dependent T1/LADA treated with only metformin, diet (low carb <100g/day), and exercise (20-30mins brisk walking per day, preferably after breakfast). I had a 3 week failed trial of insulin, that was not needed (I was scoffing sweets not to hypo on the smallest amount).

I follow Jessie Inchauspé (without the vinegar and less carbs!), and turned my BG round super-quick within 3 months, (albeit with some temporary side effects), and I have stayed in non-diabetic range for the last 2 years. In that time my antibodies have 'strangely' reduced, but not in the normal way, ie. in response to no cells left to destroy, as my insulin production has remained the same (according to my Libre/HbA1c and unchanging diet).

It is thought I was both insulin resistant and suffering from lowered insulin production at diagnosis, and I am staying on 1000mg metformin for its positive side effects in making better use of my insulin, heart protection and possible link with preventing dementia etc. (NB. if you are no longer on any diabetic meds you will not be entitled to free prescriptions - I'm not sure if Libre counts, although I am not allowed to be given mine if the pharmacist does not give the OK before handing them over).

My diabetic presentation and insulin response is believed to be, (as I suspected from about a week after being diagnosed and reading, reading, reading), due to a huge immune response to my covid vaccinations, (rather than an actual illness/viral response, as suspected to usually trigger LADA); way more research is needed but unlikely to be establish retrospectively; so my consultant and I are going for the 'keep doing exactly what you're doing as it's working, until it doesn't' approach, because it could be a 'different/new' type of diabetes as it just doesn't fit the usual algorithm.

Keep up the good fight, it's your health and in the current system it really does pay to be your own advocate.

Have you seen this blog by Jessica Apple 'Lada and life after bagels: a low carb journey. I wonder whether antibodies are triggered once a certain amount blood sugars are present. Probably not, but it makes me wonder.

LADA and life after bagels: a low-carb journey

Jessica Apple was diagnosed with LADA at the age of 35. Together with her husband Mike, she has embarked on a low-carb journey to manage her condition.

diabetesvoice.org

 

[Melgar]

Wow - yes... I'm sure there are a lot more fringe cases like ours, but it sounds like you have also been put through the ringer...

I felt patronised and overwhelmed in my consultant appointment - the diabetes support nurse I had dealt with up till that point came in after the start of the appointment and sat silently in the back of the room - the whole thing felt like an interrogation technique of good-cop bad-cop.. I half expected a 'don't look at him, you're talking to me now...' if I looked back at the nurse for support...

and - I've had nothing but support and encouragement otherwise.. except that the whole diagnosis and treatment plan has been totally wrong...
but I do feel for the GPs, they don't have enough time, and I know I've been less than 100% honest in a GP room, so they have to expect that...

As it happens, I've begun to like the cider vinegar thing - there is a new product from Aspalls, more 'raw' .. cloudy vinegar, but I swear with some fizzy water, it actually tastes like their actual cider, positively tasty even....

That aside... yes; though it took 5 months to hear the result, I was negative to all four measurable anti-bodies.. it was really that I presented so suddenly, and with a recent history of weight loss, and very high blood sugar, that it was just felt that -better to be safe - and treat me as late onset type 1. Totally wrong, but I do understand that it was the right decision at the time.. unless there had been better understanding of non-alcoholic fatty liver disease.

My sense of some of this, is that there is still a lot of uncertainty about the Pancreas. And that all centres around whether there is a mechanism for progressive 'destruction' of insulin production in the beta cells. You will have had many similar explanations.. and I struggled to make sense of it, because nobody could give me a simple explanation as to what was, or might be, causing my Pancreas to gradually stop creating insulin. One explanation sounded a lot like 'you have a finite amount of insulin' and one talked about the 'rate of destruction' .... but I would listen to this lecture by Jason Fung

in which he really breaks down the way that T2 treatment is often focussed on controlling blood sugar level, when it's really a question, and always has been, about reducing total body glucose and insulin, at which point, the Pancreas (having been thrashed into over-production of insulin) can take a breather, and will recover to normal levels..

I was also told that Metformin would reduce insulin resistance and make better use of my insulin. Really it only gives the appearance of doing that, by blocking the liver from producing glucose, thereby reducing the amount of insulin in your blood, which looks like a reduction of insulin resistance, but if you see insulin resistance as simply too much glucose stuffed in your cells - then it really isn't addressing that - only reducing glucose will do that...

Then the 'making better use' thing - all of that is based on the outdated 'internal starvation' model of diabetes - making better use, means more effectively overcoming whatever unexplained mechanism that is stopping the insulin from packing glucose into your cells. If the actual problem is that your cells are already overstuffed with glucose, then there isn't really a 'making better use' - there is only reducing glucose...

My GP also discussed COVID- she had seen some cases that seemed to suggest that COVID had 'stunned the Pancreas' in some way, and that this may have been what had happened to me... I don't think it was, but that sounds much more like your case- if you were initially strongly positive for anti-bodies - does that mean there is a change now?

Is there anything you could point me at in terms of the vaccine response you mention - I've gladly taken every vaccine injection offered, and been happy and grateful to do so, but understanding diabetes and Covid as diseases that effect the Endothelium, there are definitely links, so I'll add anything to my reading list.

And - thanks sincerely for the comment - totally agree, and actually - the most significant thing I'm taking from this whole experience, is how much there is to learn about such basic things we have taken for gospel all our lives (well, those of us who were kids in the Seventies, anyway) and how much of an improvement we can all make for our own personal long term health...

Very interesting. Like all the other commentators here you are a very interesting read !
I don't produce enough insulin and something is taking/took out a bunch of my Beta cells out. Big question mark on that one. I don't have any metabolic issues either. My elevated blood journey started when I got Sepsis Pneumonia back in early 2019 while visiting my niece. I spent a week in the Intensive care unit in North Staffs General. A few months later they told me I was 'pre-diabetic' before that I did not have any issues with blood sugar. Strange eh.

 

[BarbaraG]

*HbA1C is 42 and I'm on zero meds.*

Which is excellent, congratulations on all your hard work. But you are achieving this by - if I’ve understood you correctly - eating extremely low carb one day and nothing at all the next. I have great admiration for you having the discipline to do that.

I just want to point out that if you were metabolically healthy, then your HbA1C would be lower than that (low 30’s, even high 20’s) while eating a “normal” diet every day.

So all is not well with your metabolism, although you have undoubtedly improved it massively with your regime. And it’s likely it will improve further the longer you go on. But be in no doubt that if you were to return to a “normal” diet, then the genetic susceptibility you have towards metabolic syndrome would reactivate.

I know, I’ve been there. I got my HbA1C into the normal range and off all meds, after more than 15 years with T2. But guess what? Fall off the wagon with the eating/exercise regime, everything reverts to the bad place it was before.

So, whether you do it by periodic short sharp efforts, or a gentler sustained effort over time, you do need to make a permanent change.

And I agree that a lower carb whole food approach is much better for us than the low fat paradigm. And I’m becoming increasingly convinced that ultra processed foods are a big part of the issue. They fool our appetites and have addictive qualities. They are poison. They just taste sooooo good (while being deficient in micronutrients) and you can eat soooooo many of them. Once you pop, you can’t stop.

 

[Chris24Main]

*HbA1C is 42 and I'm on zero meds.*

Which is excellent, congratulations on all your hard work. But you are achieving this by - if I’ve understood you correctly - eating extremely low carb one day and nothing at all the next. I have great admiration for you having the discipline to do that.

I just want to point out that if you were metabolically healthy, then your HbA1C would be lower than that (low 30’s, even high 20’s) while eating a “normal” diet every day.

So all is not well with your metabolism, although you have undoubtedly improved it massively with your regime. And it’s likely it will improve further the longer you go on. But be in no doubt that if you were to return to a “normal” diet, then the genetic susceptibility you have towards metabolic syndrome would reactivate.

I know, I’ve been there. I got my HbA1C into the normal range and off all meds, after more than 15 years with T2. But guess what? Fall off the wagon with the eating/exercise regime, everything reverts to the bad place it was before.

So, whether you do it by periodic short sharp efforts, or a gentler sustained effort over time, you do need to make a permanent change.

And I agree that a lower carb whole food approach is much better for us than the low fat paradigm. And I’m becoming increasingly convinced that ultra processed foods are a big part of the issue. They fool our appetites and have addictive qualities. They are poison. They just taste sooooo good (while being deficient in micronutrients) and you can eat soooooo many of them. Once you pop, you can’t stop.

Thanks for the reply - I think I need as much of this as possible for that long term motivation...

[quick note on HbA1C - my current bloods incorporate blood cells from Dec-Feb, so only part of that is with the 'new regime' - it's really 42 now in comparison with 50 in Nov.. and I expect to see a further reduction when I take them again in May, with a full 3 months of this ... I can see my daily averages going down week on week with the CGM.]

But - let me back up just a second...
I realise that my story is very short compared to many others, and that it must sound like I'm looking for a quick fix.
Having been diagnosed Type 1 after a successful 3 year hard grind to get into shape, and to hit my target weight - which was 76kg for those counting - I was 53 (for context only - but really just to be clear, I was not kidding myself about total weight - I knew nothing about visceral fat though)

I then went through a period of coming to terms with the 'fact' that this was my life now - like all Type 1 patients have to go through. I told my GP - 'I'm finding this hard; I can put any amount of effort into something if I think it will have an effect, but this; I just have to learn to accept this, and I'm not good at that'.
I also watched as three years of effort unfolded - my weight went back more or less to where it was (and this wasn't a natural rebound - I had been steady until I started on insulin.) and with no significant change to diet, I put on 3 stone.

Then - after 6 months of that, not only do I finally find out that I wasn't type 1 at all, but that the treatment I was undergoing was literally the worst thing I could be doing - and it felt like I was being accused of somehow falsifying my initial diagnosis by the consultant. I was instructed to switch immediately to 'Metformin with adjustment according to NICE guidelines and Statins' - so basically overturn the last six months with no explanation why.

After a follow up with the GP - I was powerfully motivated to really dig deep on what I could do for myself, and to try to better understand the confusion that lay with my initial diagnosis - at that point I was still very fuzzy even about the difference between type 1 and 2.

I quickly came to the conclusion that the only way to explain my presentation was that I was clueless about sugar and fructose, and that I had non-alcoholic fatty liver, which had essentially become type 2 diabetes over that 6 months - or at least indistinguishable from it.

But - given my experience with living on a constant glucose monitor (and thus already completely aware of what a glucose spike was and how it made me feel), and having that lightbulb moment of 'insulin resistance is only like any other resistance - it's just a reaction to too much of a thing' - it was then simple (meaning the conclusion, not the issue itself) - if the problem was all about visceral fat, how could I get rid of it? - the only answer seemed to be intermittent fasting - the more often I could go without food for 24-36 hours, the quicker my liver could divest itself of all the fat I had built up. I'm deliberately being as non-technical as possible, but that's what it came down to: the liver has about 24 hours worth of ready energy, so you need to fast for more than 24 hours to have any effect. On the other side, If you fast for more than a couple of days, you can get into tricky territory, particularly if you are doing so without GP approval. So, two nights and a full day seemed to be the sweet spot. The one thing I had in my favour was that I could monitor myself through the CGM, and I promised my wife I would take supplements on my eating days, but it seemed fairly plain to me that the only way I could build up enough evidence that I was right about my initial diagnosis - was to go immediately onto a rolling daily fast - that would give me the 36 hours without food, and let me eat (as close to zero net carbs as possible) normally on eating days - in fact eat more than I would normally, and much more fat than I was used to.

A month of that and I had an otherwise miraculous set of results to show my GP - and keep her on side - to support an ongoing plan of similar but less extreme diet.

I should also add that I'm a total convert to getting good sleep quality - I monitor that too (to the point that I can even show a correlation between periods of dreaming and glucose response) - and I have a full body composition scale that I use daily to ensure that I'm not losing muscle with fasting (spoiler - I'm not - I'm putting on muscle slightly) and I'm exercising daily - only a short run on a cross trainer, but high resistance... Essentially both the diet and the exercise are not about doing a little more (my old way of thinking) but are about short sharp shocks that create a response without dialing down my metabolism (which I can also get feedback from on my scales - I get a daily estimate in the form of calorie amount; I realise that calories are outdated, but it at least gives a relative check that my metabolism is not working against me - in other words, the fasting is doing what it's supposed to.

So - I have a pile of data - I'm monitoring blood pressure, I have a measure of vascular health, I'm learning to meditate, and I just got a sauna blanket which is just awesome but has real benefits in the sense of metabolism boost, as well as simply just making everything feel better.

The thing that has surprised me the most though, is that I like fasting - the first week I did feel hungry, but now - I feel better on the fasting days - full of energy, and there really is something to autophagy - that magic period where the liver runs out of ready stored energy (Glycogen) and starts looking around for stuff to use instead - kind of like washing up the dishes in the sink rather than stuffing more in the dishwasher - after a while that is really something - I just feel healthier - I feel strong again, having felt progressively weaker, older and less well all of last year.

I developed adult acne on the back of my head in July - didn't realise it had any connection all summer but couldn't shake it - it vanished at the start of this fasting - overnight is a stretch, but it totally stopped, then started to clear up...

I've started to feel like I have a new 'sense' - my whole body feels different on fasting days - I can totally feel when it's in 'repair' mode or 'digest' mode... difficult to describe, but so affecting that I now don't want to make any plan for the future that doesn't involve at least one day of fasting a week - in fact, I'm fasting 3 days a week for March - and will have to reduce that - not because I want to - but because I will have gone below my target weight again and the rate of weight loss is too effective. I'm eating in a way that I would never have done 2 years ago - making thick creamy sauces, having bacon and eggs most days, just loving every meal - I mean really loving everything that I'm eating, just eating differently - using Jesse Inchaupé as a guide, so chomping on rocket and spinach as a pre-meal, having my cider vinegar, layering my plate to eat greens first, all of that.

I was the biggest pasta and noodles guy - in fact my own tuna noodles is a thing of beauty - I grew up all over the place, so I know the spices I like, and I love cooking - but I have to admit, I just don't miss the bread and pasta etc - because I can see my glucose level staying flat after each meal, and I feel full, not bloated... then through then next day I just kind of transition to this other state of feeling rested and ready to eat again, then I have my little bowl of Greek Yogurt with double cream to break my fast and start planning what to have for the first meal.

I've just had my lunch today - a portion of my own chilli - I do love a good chilli (kidney beans but no rice) - topped with a thick layer of cheese, and mayo, with Kimchi and smashed avocado, with a side of Rocket to start (natch) and some Brazils, Cashews Macadamias and a portion of 85% dark chocolate to finish.

So - what is the point I'm trying to make now...?
Well, a rolling daily fast does seem extreme, and many many people will recoil from that, or feel it's not possible. But, after the second week, I feel like it's easy - I have so much time on fasting days.. I feel better, I have plenty of energy, I never have the lightheaded dizziness I used to get on a calorie controlled diet - there is no faff with logging meals or counting calories, every meal feels like a feast, and I'm discovering a different kind of love for food (and a corresponding distaste for the processed meals that are just half sugar as soon as you understand how to read an ingredient list - as a family we used to like chicken sausages from a really well respected local outfit... the healthy alternative to pork? they are about 60% pea starch, or ... sugar ... which is going straight into your liver as fat, without making you feel full)

Right - enough rambling - the TL-DR is that I don't feel like this is hard - I will need to reduce to 1 or 2 days of fasting per week, but that will just make it easier to manage, and the other thing is that I think you need to see it all as a whole. There is massive evidence that metabolism, sleep and mental health all affect each other (my mother, for example, I now understand; killed herself with anger, but that's another story). So, anything you can do to feel better and sleep better will help you to eat better, which in turn will make you feel better... and so on..

And we need to stop demonising fat. I feel like I have an entirely new relationship with fat, and it's awesome...

Best,
Chris

 

[Outlier]

Your progress is awesome too! Thank you for these informative posts which I am sure will help a lot of people. You have steamed full tilt into managing your health. Inspirational.

 

[BarbaraG]

All power to you with all you are doing.

A question: have you been officially diagnosed with NAFLD? I listened to a podcast about it the other day, and iirc then it is considerably more common than T2D. But diagnosis isn’t straightforward, because it is essentially symptom-free until it’s almost too late. They listed a few things which could give an indication, such as liver function tests being out of whack, spots, and (In the later stages) abdo pain. But the only definitive test (I think this is right) is a scan of the liver.

They said they thought everyone with T2D should be screened for NAFLD. I wondered about asking my nurse about that. But then thought: all the things they are suggesting to reverse NAFLD are exactly the things I’m doing to manage my diabetes. So I’m not sure that knowing I had NAFLD (if I did) would make any difference.

I am wearing a CGM too, and I also find it very motivating seeing the weekly average come down.

My last HbA1C (early January) was 71, suggesting an average BG of 11. As it happened, I had just started a “better eating and exercising“ campaign when that was taken. A week later I put the CGM on and it was initially showing 9.6. It then came down to 7.5 in 3 weeks. Then I couldn’t get one of my diabetes meds, and over the next 2.5 weeks it went up again to 10.0….. but turned the corner and was down to 9.5 10 days after that. Then I got the med again this month, and in the week since then we are down to 8.2.

I expect that, as I continue to low carb and exercise with the med on board, I will go down lower than the 7.5 I reached before. Maybe in time I will be able to stop the 2nd med (Trulicity). I doubt I will ever stop metformin, it has so many benefits.

I’ve had T2D at least 26 years, btw.

A note about visceral fat. It is usually the first to go when you lose weight.

 

[Outlier]

A note about visceral fat. It is usually the first to go when you lose weight.

Mine didn't get the memo! Now at BMI 21 it is only just starting to go. Just sayin' to help anyone else who has found this - we are all different.

 

[BarbaraG]

Mine didn't get the memo! Now at BMI 21 it is only just starting to go. Just sayin' to help anyone else who has found this - we are all different.

Fair dos. You’re right, we are all different.

Perhaps you are a TOFI (thin outside, fat inside) - not noticeably overweight to look at, but carrying more visceral fat than is healthy.

My gym has a body scanner and according to that my visceral fat is towards the top of the amber zone, but not in the red. My BMI when I first used the scanner was 41. It’s as if my visceral fat isn’t as bad as you would expect from my overall fatness.

 

[Outlier]

In my case it was fat outside and inside. I've lost a considerable amount of weight since going keto and stabilising my BG at non-diabetic readings. I lost weight from all sorts of bits that really didn't need it, but only now is my blasted middle co-operating.

 

[AndBreathe]

Wow - yes... I'm sure there are a lot more fringe cases like ours, but it sounds like you have also been put through the ringer...

I felt patronised and overwhelmed in my consultant appointment - the diabetes support nurse I had dealt with up till that point came in after the start of the appointment and sat silently in the back of the room - the whole thing felt like an interrogation technique of good-cop bad-cop.. I half expected a 'don't look at him, you're talking to me now...' if I looked back at the nurse for support...

and - I've had nothing but support and encouragement otherwise.. except that the whole diagnosis and treatment plan has been totally wrong...
but I do feel for the GPs, they don't have enough time, and I know I've been less than 100% honest in a GP room, so they have to expect that...

As it happens, I've begun to like the cider vinegar thing - there is a new product from Aspalls, more 'raw' .. cloudy vinegar, but I swear with some fizzy water, it actually tastes like their actual cider, positively tasty even....

That aside... yes; though it took 5 months to hear the result, I was negative to all four measurable anti-bodies.. it was really that I presented so suddenly, and with a recent history of weight loss, and very high blood sugar, that it was just felt that -better to be safe - and treat me as late onset type 1. Totally wrong, but I do understand that it was the right decision at the time.. unless there had been better understanding of non-alcoholic fatty liver disease.

My sense of some of this, is that there is still a lot of uncertainty about the Pancreas. And that all centres around whether there is a mechanism for progressive 'destruction' of insulin production in the beta cells. You will have had many similar explanations.. and I struggled to make sense of it, because nobody could give me a simple explanation as to what was, or might be, causing my Pancreas to gradually stop creating insulin. One explanation sounded a lot like 'you have a finite amount of insulin' and one talked about the 'rate of destruction' .... but I would listen to this lecture by Jason Fung

in which he really breaks down the way that T2 treatment is often focussed on controlling blood sugar level, when it's really a question, and always has been, about reducing total body glucose and insulin, at which point, the Pancreas (having been thrashed into over-production of insulin) can take a breather, and will recover to normal levels..

I was also told that Metformin would reduce insulin resistance and make better use of my insulin. Really it only gives the appearance of doing that, by blocking the liver from producing glucose, thereby reducing the amount of insulin in your blood, which looks like a reduction of insulin resistance, but if you see insulin resistance as simply too much glucose stuffed in your cells - then it really isn't addressing that - only reducing glucose will do that...

Then the 'making better use' thing - all of that is based on the outdated 'internal starvation' model of diabetes - making better use, means more effectively overcoming whatever unexplained mechanism that is stopping the insulin from packing glucose into your cells. If the actual problem is that your cells are already overstuffed with glucose, then there isn't really a 'making better use' - there is only reducing glucose...

My GP also discussed COVID- she had seen some cases that seemed to suggest that COVID had 'stunned the Pancreas' in some way, and that this may have been what had happened to me... I don't think it was, but that sounds much more like your case- if you were initially strongly positive for anti-bodies - does that mean there is a change now?

Is there anything you could point me at in terms of the vaccine response you mention - I've gladly taken every vaccine injection offered, and been happy and grateful to do so, but understanding diabetes and Covid as diseases that effect the Endothelium, there are definitely links, so I'll add anything to my reading list.

And - thanks sincerely for the comment - totally agree, and actually - the most significant thing I'm taking from this whole experience, is how much there is to learn about such basic things we have taken for gospel all our lives (well, those of us who were kids in the Seventies, anyway) and how much of an improvement we can all make for our own personal long term health...

Just a very brief comment. Antibodies are not static. They vary over time, and with some conditions can vary near day to day.

A few years ago I had a raft of tests done for auto-immune conditions, due to some odd symptoms, not easily tied down to a condition, plus family history. The discussions with the Endo afterwards were very interesting, bearing in mind a handful were “ inconclusive”.

 

[Chris24Main]

Just a very brief comment. Antibodies are not static. They vary over time, and with some conditions can vary near day to day.

A few years ago I had a raft of tests done for auto-immune conditions, due to some odd symptoms, not easily tied down to a condition, plus family history. The discussions with the Endo afterwards were very interesting, bearing in mind a handful were “ inconclusive”.

Thanks for the comment - I'm sure you are correct in this - most measurements we take are much more fluid than they seem, depending on how often you take the measurements.
In my case, I'm pretty happy about this though; the key question for me was 'could this be late onset Type 1 given a history of recent weight loss, increasing sense of thirst and urinating'.
For me, I was increasingly seeing a trend of low blood sugar during the night - bouncing off the lower end of the scale. This was when I was still taking insulin, and I have a good friend who is long term Type 1 - he was often having to get up in the night with a hypo alarm. That wasn't happening to me, and I was confused how I seemed to be showing increasingly better 'control' of my insulin levels, when I wasn't producing any. The test I then did was to look for naturally produced insulin in response to a carb-heavy meal. So, the result of that test showed 'plenty' of insulin being produced. That, in conjunction with the antibody test (and my better understanding of beta cell failure) all started to suggest type 2 or NAFLD (or a combination, given the time I was being given unnecessary insulin).

The key for me then was 'can I use the CGM to ensure I'm not doing anything unsafe, and try to work with an extreme change to diet' - because if I really was still a type 1 - I think the diet I went on would have been quite a challenge...

 

[Chris24Main]

On the topic of visceral fat - I had been on a three year journey to lose weight - at the end I was 76kg and I was doing a lot of paddleboarding - the kind where you really engage the core (ie actual excercise, not just pootling) - and felt like my belly was as flat as any 50 odd year old should want. I always though that a 6-pack was an unnecessary vanity.

But for me, the belly was the last thing to go - and yes we are all different, but it's also to do with what we are told is 'good' excercise...

I mean - I'm really no expert on this at all, but the basics I've picked up in the last couple of months all go...
1 - despite what we are told about dietary fat, ALL carbs beyond what you need at that moment and all fructose and alcohol is turned into fat in the form of trigliceride and first stored in the liver, between the organs, the muscles, then fat cells - Ie, you fill up from the inside out.
2 - Aerobic and cardio excercise burns glucose. As you work the muscles - you clearly tone, and that is having the effect of pulling triglycerides out of muscle storage, converting back to glucose - I'm almost certainly over-simplifying, but essentially most excercise ends up emptying you from the outside in.
3 - depending on how you are eating, you may be always in fat storage mode, making it increasingly difficult to get into fat burning.
4 - as you do more and eat less, your body will compensate by dialing down your metabolism, by an amout that is really quite significant.

So - my thought was - let's test this - try for short sharp shocks - 36hour fasts and 15 min high resistance excercise. I still do as much paddleboarding as I can, but that's as much for mental health as anything else (meaning, I just love to be out on the river, it does me the world of good beyond simple excercise). But - aim for autophagy in fasting and anaerobic excercise - try to encourage my body to become as metabolically flexible as possible, because I know how hard the 'just do a little more' lifestile gets..

And - I don't think I've done this long enough to say anything with any sense of confidence - for sure my weight has dropped away, and my belly has emptied like a ballon.. I've been doing quite a lot of plank work, and it's pretty shocking the loose folds of skin around my belly button - but I'm also a big fan of the Slendertone products, and that's coming down...

But it is hard work to keep doing all the things. For example, I've just had a few days holiday, so I've eaten normally for four days running, and can see my weight going up every day.. which I expect, but I can see that this kind of obsessive daily measurement regime is not a great way to live ... and there is a fine line to tread; my daughter is recovering from an eating disorder, and there are obvious dangers there...

I'm sure this forum is littered with people who had targets and plenty of motivation for a couple of months - I don't want to just drop my blood glucose and serum lipids for a month or two, I want to strive for a way of life that gives me the best overall health, and a sense of enjoying life, eating, and having a sense of being at peace with myself. I know I can put in effort to achieve a target, but I also know that once that target drops away, I'm still there....

So - I guess I'm saying that I'm aware that this isn't a short term thing - even if I can whip my own measurements into remission, there is nothing stopping me going around the whole cycle again, unless I make systemic changes, which may not need to be so drastic, but do need to stick...

 

[MrsA2]

This why I've tried to look at is as being a way of eating for life, that fits with my life. Compromises yes, the occasional trip off plan but always reverting to looking after my bg, as that is what shows me is going on inside