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

[Chris24Main]

Hi, after posting an introduction, I was encouraged to start a thread - my story will be specific and probably not applicable to most on this forum, because I'm becoming increasingly convinced that my diagnosis is not correct. a reply from @JoKalsbeek has only helped cement in my mind that the advice and treatment I have received have not only made me feel worse, and set me back significantly, but would also make my only good course of action more difficult.

That said, I'm not blaming my GP, or consultant, and the upside is that it's given me a rare insight to help myself. Please allow me to elaborate. You may want a (low carb) beverage for this...

Just before Covid entered our lives, I realised that I needed to get my BMI below 27 because of the risk of Diabetes (I use the sloppy term deliberately because that is all I knew at the time). I wasn't hugely overweight, but I had an undeniable beer belly, and I drank too much. I didn't smoke, and I typically cooked form fresh; I like veg, and really dislike soda.. so I thought it was all ok. Totally unrelated, but my younger, healthier and better looking brother died suddenly and tragically, and that forced a bit of reassessment and soul-searching.

I then started a two year controlled (calorie controlled mind) diet, using MyFitnessPal to log meals and a wireless scale to track weight, and a hybrid smartwatch to log steps and exercise, and a gym-quality elliptical trainer to do more cardio - really lucky ebay purchase. I started drinking less, and the less I drank, the less I wanted to drink.

After a couple of years, and ... really hard work... I was close to hitting my goals... but pretty soon the weight started to go on again... and so I upgraded my scales to show body composition, and my MyFitnesPal subscription to show the breakdown of all meals I was having, and to increase the discipline. More exercise, and I started paddleboarding regularly, and use a Slendertone belt daily.

After another year or so, I was at my target weight, and it was sticking - I had, if not a six pack, then something along the lines of a two pack, if I held in my stomach and squinted a bit.

Understand, I'm not bragging - and I dropped maybe two and a half stone, it wasn't miraculous or anything, just that this is the level of effort you need to go to for a 'do more, eat less' approach to actually work - and I went through the dizziness and constant hunger and coped - essentially at 52 I was a poster child for recommended diet. I was close to fully tea-total by this point, and hadn't smoked anything for more than two decades.

In April of last year, I took part in a 'Future Health' study and had a series of blood tests, and one of the benefits to me was that they would get in touch if there was any concern about Diabetes.. they didn't

In June, two months later, I had a regular checkup as a 50 plus with my (excellent) surgery, and went in with an ironically high level of smugness.. for once in my life, I don't need to lie about any of the things I'm being asked..

A couple of weeks later, I get a call on the way to go Paddleboarding, and I'm told to pull over so that I can take the news that my blood glucose levels are alarmingly high. Days after that I'm on the conveyor belt through Gliclazide, then insulin (when it was assumed I could only be Type 1) and then more recently Metformin (once we were all convinced that it was definitely not Type 1)

But a hanging question has never really been resolved - how could I be healthy in April and dangerously unwell in June ?
And how could I have done everything modern guidance asks of all of us (to an obsessive degree) for three punishing years - and still be diagnosed Diabetic ?

First things first - I presented with weight loss, lots of urinating and lots of drinking water. Hilariously, I had convinced myself that I was properly hydrating, and that it was deliberate, but then our SodaStream yearly subscription was complete in four months - I couldn't argue that I wasn't drinking too much water... I did talk about the weight loss being controlled, but tick-tick-tick - let's get you on the Type-1 treatment. It's by far the most dangerous situation, and despite no family history, it was feasible... so, it seemed like the right call.

After a few weeks of that - we still hadn't had the blood test results looking for anti-body evidence of autoimmune function that would show type-1 or 2 - and so we moved to insulin and a glucose monitor. I suppose most on this sub-forum won't have a great deal of experience of that, but there is a lot to take in, and the support system kicked in. I felt really well looked after, and with some effort, my levels got better - but still spiked surprisingly, and nobody could tell my why. 'Sometimes this just happens' was an answer I got a lot... but I was telling people, 'The only time I feel unwell is when the levels are changing rapidly, it seems to me like the absolute numbers are less important to the amount of change...'.

I should mention - not that I'm looking for sympathy of course - that 5 months of insulin totally wiped out all the effort I had put in for three years - my weight went back up to where it started in a more or less straight line. I didn't complain - the more serious thing was that my blood glucose was being controlled... yes, I understand the problem with high blood glucose, I'll do whatever you ask.

Then I had an appointment with a new consultant, she began the 'interview' by asking about Ketone levels at my first presentation... and as I began answering, said 'wait, I don't trust people', and phoned my surgery to get the answer. When she put down the phone, I showed her my iPad, where I keep notes of everything, and displayed the same answer from a scan of the letter from the surgery. How were we going to have a dialog when she wasn't trusting my answers? 'Oh, I didn't mean that I didn't trust you, just that I don't trust anyone...' Suffice to say that the appointment was a little tetchy from that point. I'm sure she's sat in front of many people she knew to be lying to her face, but it's not the best strategy to build trust and confidence.

Anyway - she was pretty sure I was not type-1, to her credit, and asked me to take another test to finally put it to bed, that test looked for a triggered response of naturally produced insulin, which was positive - clearly, I could only be type-2.

So, that was fine, but I got the news in a letter asking me to drop the insulin and switch immediately to Metformin with 'supplements per NICE guidelines'. I felt that I couldn't just upend 6 months of learning to control the Most Important Thing - my blood glucose level, and needed to understand the whole thing better, so waited till I could speak to my GP. She was great, explained everything, and what Metformin was and what it did.

Which was great, except that some of what she said turned out later to be wrong, particularly in terms of Metformin's primary function.

So - I was now a new type-2, my levels were still too high, and spiking a lot, particularly in the morning. What the hell had kicked this all off ?

When I thought that I was just an unlucky person with late onset type-1, I was prepared to do anything; the hardest thing was accepting that this was now my life, and I'd worked hardest on that. Now, I had to turn my whole thinking on all of this around and start fresh. I needed to learn as much as I could - I didn't really know what glucose was or what made you insulin resistant. I just felt that things didn't add up for me, and I needed to figure it out myself, because where I was headed was really bad.

Luck took me to a YouTube interview with Dr Jason Fung, and then I immediately got his book 'The Diabetes Code' - and I went to bed literally shaking after devouring half of it.

The simple truth was that having reached my weight goals, and keeping my weight steady, I decided to treat myself with Honey. After all, it was natural sugar, we can't burn it, so it's a free pass, and I could see that it was having no effect on my weight. Soon enough, I was having Honey on my cereal in the morning, on sandwiches at lunch, sometimes a little to spice up the family meal that I would cook, and as a snack on Ryvita before bed. I was also mainlining grapes - we would buy four packs a week, and I would eat most of them. Grapes are fantastic in a calorie-controlled diet, because of their calorific density - lots of water... so again, a free pass.

I'm astounded at my own ignorance. Just gob-smackingly incredible.

I understand the mechanism better now, but in simple terms, I had overloaded my liver over and over to the point that my pancreas couldn't keep up, and had gone into beta-cell dysfunction, leading to a rapid rise in blood glucose... in weeks.

Having had that picked up, 6 months of additional insulin was the absolute worst thing I could have done... and now I'm taking the one drug that primarily blocks my liver from unburdening itself.

Unchecked - I'm on a path of taking more and more metformin to address the symptom of high blood glucose, until that stops working, then more insulin..

None of which would ever actually address the problem, that I simply have too much glucose, fructose and insulin in my body in the short term.

The one great positive of my situation is that I continue to wear a continuous glucose monitor (essential to avoid really bad things if you are type-1, but it turns out, very useful indeed for, well, everyone) and I was able to test the various theories in 'The Diabetes Code' and then Jessie Inchauspé with 'The Glucose Revolution' - everything totally stacks up with the evidence I can see with my own eyes, and the things I had intuited from the start.. the glucose spikes were the problem, and I had done this to myself; but I could undo it too.

Turns out, it takes eight weeks of force feeding Geese on Corn Syrup to make Foie Gras - that's what I had done to myself, and the system picked up on the resulting blood glucose level.

Anyway - quite enough rambling from me... where I am now is a full week into alternate day fasting, with close to zero sugar or starch on the eating days. I'm also not taking any metformin, because I can see on my monitor that my blood glucose is only marginally higher than a metabolically healthy person. I'm also supplementing with Huel daily greens, to make sure that the sudden change in diet does not result in loss of nutrients.

I only intend to do this for a month, and to present the results (massive, significant results in only a week) to my GP to force the issue - why, given this would you argue for Metformin? and I have an appointment with the Dietician about a month after that, at which point I may still be doing some form of intermittent fasting, but nothing so extreme, and with low, but not close-to-zero levels of starchy foods and following Jesse Inchuspé's recommendations to do so with no glucose spikes.

I still feel well looked after by the 'system' - I understand the decisions made and the treatment given, GPs only have 10 minutes at a time to make these decisions, and people are just unreliable at telling you the truth, or following a plan - so they treat with medication; can't blame the GP for doing their job.

But - I wish I'd known even a fraction of this much earlier in life..
If you've managed to get to the end of this Wall-o-text, thank you, I know my story is important to me, but otherwise it's just someone's story, and I appreciate you taking the time.
Best of luck (and better advice) on your own journey.
Chris

 

[Outlier]

Well done for your actions this far.

One of the wry quotes I remember is that "experience is something you get after you needed it." If I had only known then what I know now! But I have to appreciate that I at least do know it now, and much of what I have found out is from this forum plus links to various studies (the latter always to be read with a discerning eye).

You've a lovely attitude, and you will be able to build on the changes you've already made. A lot of us have done similarly, some with zero help from the medics, some with lots of help. Welcome. Go for it!

 

[aylalake]

That was so absorbing to read - beautifully written!
Thank you for sharing your story with us, and I look forward to the next chapter after your various medical appointments.

 

[IanBish]

Thanks Chris; I had half a glass of dry red while reading that.

If only I'd known I was insulin resistant years ago, I wouldn't have shovelled in all the sugar, bread, cakes, pizzas, etc... But it is what it is - well done for realising it and dealing with it.

I've never been tested, but I'm sure I have/had fatty liver too, as well as my other symptoms. But like you, I watched some Jason Fung videos, and have recently started The Glucose Revolution, and most importantly, and initially, joined here and got some great advice.

The best of luck on your journey too, and well done on a very articulate, well put together, essay. Sorry, I meant post...

 

[LittleGreyCat]

Which was great, except that some of what she said turned out later to be wrong, particularly in terms of Metformin's primary function.

An interesting tale.
You don't, however, explain what you were told about Metformin and why this was wrong.
Nor do you explain why this was not suitable for you personally.

Do you mind sharing?

 

[Chris24Main]

Thanks all for the comments, and you are totally correct @LittleGreyCat - I have kind of left you hanging on the topic of Metformin.

Mainly I forgot, but partly I do feel on less firm ground, because my entire working hypothesis (if you like) is based on a sum total of two weeks of research. I'm not a doctor, I have zero expertise or experience, at least as far as all of this goes. Hell, it took me weeks to figure out that there was a difference between type-1 and type-2, when I was first diagnosed as a 'definitely diabetic, but not clear which'.

And that's kind of the problem, as I see it; but let me come back to that.

I left the GP on my last visit, armed with my Metformin, and advice that 'it will reduce your insulin resistance'.

That sounded like a good thing, but I couldn't shake the feeling that it was somehow questionable. What was insulin resistance, and by what mechanism could you reduce it (actually the thing that stuck in my mind was the double negative, I had to ask to have it repeated - why would you phrase something so clumsily? - if you 'push something over' - you don't talk about 'reducing its resistance to falling' ... it just seemed like a weird expression, and that was the level I started off thinking- I need to understand this better.

I'm a process engineer by trade - I look at complex manufacturing systems (production lines, typically of high-tech electronic products) and figure out how to make them run better. I look for patterns and I figure out the best knob to turn to make that dial go there. It's not about hitting it with a hammer, it's knowing where to hit... That doesn't make me a doctor, but I can't help but look for patterns in the data and I'm always trying to figure out the best way to make the data better.

So - early on I was just engrossed with understanding the way that the insulin doses interacted with the glucose monitor. Being type 2 meant that all of that was totally irrelevant, and that, honestly, annoyed me more than anything.

So - why was the advice on Metformin wrong? well, all caveats about my ignorance aside, Google is your friend, and I quickly lifted this phrase from the National Institute of Health: In the liver, normal doses of Metformin suppress Glucagon, the hormone responsible for triggering the liver (secreted from the α-cells in the Pancreas) to start gluconeogenesis.

In more simple terms, it prevents the liver producing Glucose (which then goes into the bloodstream) by about 60%.
It's really there as a safety net so that when you have a response to food (deliberately too general - of course it's all about glucose spiking) you don't go hyperglycaemic. Ie, Naturally, your liver produces lots of glucose, and you produce insulin in response, if you can knobble the liver from doing that, you don't get the insulin response, and you don't get the extra glucose in your blood.

Which leads me back to my earlier point - the treatment of Diabetes primarily focusses on reducing the thing that can be measured easily - we have become pretty good at managing HbA1c without really being that troubled that it doesn't statistically make much difference to long term outcomes. Metformin was the best drug to prescribe to reduce blood glucose in the absence of insulin - I don't actually have any issue with that, and all my reading points to it being the best pharmaceutical choice.

However - it's fundamentally trying to solve the wrong problem. Even in that paragraph, the problem is the glucose spike caused by the food (not just too much food, food of the wrong type, eaten in a way that you absorb too much glucose too quickly)

What is insulin resistance? - we all know the answer, instinctively - what is any resistance? it's just too much of a thing... too much coffee leads to caffeine resistance, too much exercise leads to exercise resistance, and so on... so, any conversation about insulin resistance that doesn't acknowledge that it's just a question of too much insulin must be suspect. You cannot develop insulin resistance without too much insulin any more than you can develop resistance to heroin without ever taking it.

Right? then how do you get too much insulin... you produce insulin when there is too much glucose and fructose too quickly for your liver to cope, and you produce insulin to temporarily store it where it can't do damage - if that happens too often, you develop resistance to insulin, which makes it harder to store away the excess glucose when you need to... and you're into the spiral that ends up with a type-2 diagnosis.

The specific problem for me - was that, with me having done all the above in super quick time by making use of the magical effect of fructose to mess with my liver - I needed to use the best dietary technique to get rid of fat in my liver - which I judge to be the kind of intermittent fasting that goes beyond the liver's store of Glycogen (think temporary quick-release stuff that isn't fat as such, that your liver can use to power your entire body for about 24 hours - it's pretty cool when you realise just what a marvel the liver is...)

Now -

Rewind to what Metformin does - if I'm fasting and then eating an ultra-low carb, zero sugar diet (with more fat than I'm used to, by the way) - what benefit is Metformin to me. None - I just don't have any glucose spikes (which I can see because I'm using a constant glucose monitor). More than that - I can quickly see that my levels have collapsed to nearly normal levels within days of fundamentally changing diet - by any measure I don't need what Metformin offers. (I also don't think I need those Statins, but that's for another time...)

Worse - Metformin will stop the one thing I need to encourage - after my twenty-four hours of fasting and looking forward to another twelve before I can eat (and, Lordy - are those meals fantastic!!) - those extra twelve hours are where my liver is getting a chance to burn off the fat in its reserves, which are full... but how does it do that? - by turning it into Glucose so that the rest of my body can use it in its hard-won state of Ketosis... What does Metformin do again? Stops that very process...

Now - again, none of this is a criticism of my GP or the system in general. What I'm doing has not been agreed with my GP. I could be wrong and doing something stupid (would definitely not be the first time) - I just look for patterns and twist knobs to make the data fit better with my understanding.

So far it seems to be working pretty well. I cannot know whether my liver is recovering, but my understanding of what I'm seeing in my glucose monitor is incredibly encouraging - and nothing is concerning. I don't feel tired, and in fact I feel better on the days I'm fasting - funnily enough, this coincides with the news that our glorious leader does the same once a week, and there has been an explosion in opinions on 36 hour fasting. I can only speak to my experience, which is that I'm losing about a Kg every couple of days, my waist is shrinking, yet I'm eating lots of sausage and bacon, and I feel better than I have in months. My colleague who is type-1 and was on holiday last week commented immediately when he saw me that I looked really well, and that I was looking tired and unwell around Christmas. I take his opinion very seriously.

I would hate for anything I say to be taken as advice and for anyone to harm themselves by doing the same. There are risks - and I'd spent a lot of time thinking this through, testing various scenarios that could present risks, and monitoring myself to make sure my assumptions are correct. 6 months of thinking like a type-1 helps enormously there... please, nobody should take any of this as a suggestion to disregard their GP and stop eating and taking their meds.

I will definitely follow up with more when I talk this through with my GP later this month (can you tell that some of this is rehearsal?) - and if anyone is interested, there is a similar piece on Statins - that's a whole thing to itself... but for now, I've gone and written far too much again....

Best,
Chris

 

[LittleGreyCat]

those extra twelve hours are where my liver is getting a chance to burn off the fat in its reserves, which are full... but how does it do that? - by turning it into Glucose so that the rest of my body can use it in its hard-won state of Ketosis... What does Metformin do again? Stops that very process...

The main point is that you have drastically changed the way you eat and what you eat, and this seems to have brought your BG under control.
If you are successfully managing your BG by diet alone, then you don't need Metformin.
That would be added once you could not maintain good enough control by diet alone.

As to your reasoning about Metformin, I think you are wildly missing the whole point of ketosis.
Random ketosis link
"Many of these fatty acids are transported to the liver, where they’re oxidized and turned into ketones, also called ketone bodies. These are then used as an alternative energy source throughout the body".
So the liver is a ketone factory, turning fatty acids into ketone.
If your liver is packed full of fat, then ketosis should have the liver using up the fat in the liver to provide ketones.

You say "turning it into Glucose so that the rest of my body can use it in its hard-won state of Ketosis".
This really isn't what is happening.
If you are in ketosis then your body is using ketones for energy.
Gluconeogenesis does produce glucose because there are parts of the brain which can only run on glucose; ketones cannot pass that particular blood/brain barrier.
That is why you will always see BG levels even when in full ketosis, and why you will die without this glucose.
However, think of it as a tiny reserve tank with only one specific use.
The vast majority of energy for the body comes from ketones.
Gluconeogenesis isn't producing glucose for the rest of your body.
Just for a part of your brain.

My impression is that you are approaching this whole thing like a bull in a china shop and wanting instant answers.
This is very understandable as you work through the early times after diagnosis.
The main message is "Don't Panic".
It will all come together over time.
It took me at least 6 months of thrashing about in too much conflicting information until I began to understand what was what, and I'm still learning.

On the subject of statins, I am personally very much against them unless you have already had a heart attack.
There are a lot of potentially bad side effects and the stated benefits are dubious.
The latest view is that "high" cholesterol, as long as the ratios are right, is not harmful and can be beneficial.
Worth reading up on the subject a lot before taking them long term.

 

[Chris24Main]

Many thanks for the explanation and the link @LittleGreyCat - I'm totally aware that there are always deeper levels of understanding, and I thank you for the extra pieces of the puzzle. You are definitely correct about my lack of understanding of Ketosis. I don't think we have an argument, as you say the main thing is that based on my glucose levels now I don't need Metformin. Honestly - if there was an argument to the contrary, I want to hear it...

But - I think that the main point in my case - and I say this respectfully; is not really about BG control ... 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.

Can I ask though - you have corrected me on what Ketosis is - I get that, only way to get energy to the Brain in the absence of glucose... so my understanding of what the glucose produced by the liver does is wrong. But, whether I have used the correct terms or not, I still read your breakdown to mean that fasting for alternate days is still a good strategy for reducing liver fat specifically?

Burning fat reserves for Ketone production is ...better for that, than what I thought was going on?....

I accept the Bull-in-a-China-shop comment - that's fair, but I don't think anything in life is served well by instant answers. I've had seven months of my treatment leaving me feeling worse and worse, and now I see a way I can help myself, and I have a month to prove it to my GP to get her on-board. If I was looking for instant answers, I wouldn't have plugged away at a reduced calorie diet for three years..

I will say though - I did panic (often) when I was trying to cope with insulin dosage, and managing hypo events - so I do recognise the criticism, but I really stopped panicking sometime in the Autumn - this is all about building resolve to understand what I need, and use that to motivate what I need to do.

Pretty sure I agree totally on Statins - I should be on Avorstatin once a day.. but I've also decided that it alters only the thing that can be measured easily, and that it's about the ratios as you say - so my plan is to continue this extreme regime till the end of Feb, come up with a new plan with my GP then (hopefully with her blessing based on the glucose levels which are already at 'normal' level) then ease off to a less extreme fasting and diet regime for a month, talk that through with the dietician at the end of March, then confirm all of it with Blood tests in April.

Already, understanding what I do now- there is no going back to the way I was eating previously, even though I would have been highly offended if anyone had said at the time that it was going to do me real damage...

Best,
Chris

 

[ajbod]

Dietary Ketosis means our bodies are running on Ketone bodies instead of Glucose, a part of the brains functions require Glucose. The liver can easily supply this. The rest runs very happily on Ketone bodies.
When intermittent fasting, it causes the body to burn it's fat reserves, as Ketone bodies. This is thought to ramp up after approx' 12 hours, so a 16 hour fast causes about 4 hours of fat burning. Your fatty liver is gradually draining away, so provided you don't keep topping it up, everything is good.

 

[aylalake]

I am loving these measured, civil, comments and responses.
I have learned so much about my own condition just reading them, as they are in simple, easy to read and therefore understand terms. Real lightbulb moments here, despite having read hundreds of posts on the subject in the 9 years since I was diagnosed.

Thank you @Chris24Main for your “essays” - I love reading them

 

[coby]

Hi, after posting an introduction, I was encouraged to start a thread - my story will be specific and probably not applicable to most on this forum, because I'm becoming increasingly convinced that my diagnosis is not correct. a reply from @JoKalsbeek has only helped cement in my mind that the advice and treatment I have received have not only made me feel worse, and set me back significantly, but would also make my only good course of action more difficult.

That said, I'm not blaming my GP, or consultant, and the upside is that it's given me a rare insight to help myself. Please allow me to elaborate. You may want a (low carb) beverage for this...

Just before Covid entered our lives, I realised that I needed to get my BMI below 27 because of the risk of Diabetes (I use the sloppy term deliberately because that is all I knew at the time). I wasn't hugely overweight, but I had an undeniable beer belly, and I drank too much. I didn't smoke, and I typically cooked form fresh; I like veg, and really dislike soda.. so I thought it was all ok. Totally unrelated, but my younger, healthier and better looking brother died suddenly and tragically, and that forced a bit of reassessment and soul-searching.

I then started a two year controlled (calorie controlled mind) diet, using MyFitnessPal to log meals and a wireless scale to track weight, and a hybrid smartwatch to log steps and exercise, and a gym-quality elliptical trainer to do more cardio - really lucky ebay purchase. I started drinking less, and the less I drank, the less I wanted to drink.

After a couple of years, and ... really hard work... I was close to hitting my goals... but pretty soon the weight started to go on again... and so I upgraded my scales to show body composition, and my MyFitnesPal subscription to show the breakdown of all meals I was having, and to increase the discipline. More exercise, and I started paddleboarding regularly, and use a Slendertone belt daily.

After another year or so, I was at my target weight, and it was sticking - I had, if not a six pack, then something along the lines of a two pack, if I held in my stomach and squinted a bit.

Understand, I'm not bragging - and I dropped maybe two and a half stone, it wasn't miraculous or anything, just that this is the level of effort you need to go to for a 'do more, eat less' approach to actually work - and I went through the dizziness and constant hunger and coped - essentially at 52 I was a poster child for recommended diet. I was close to fully tea-total by this point, and hadn't smoked anything for more than two decades.

In April of last year, I took part in a 'Future Health' study and had a series of blood tests, and one of the benefits to me was that they would get in touch if there was any concern about Diabetes.. they didn't

In June, two months later, I had a regular checkup as a 50 plus with my (excellent) surgery, and went in with an ironically high level of smugness.. for once in my life, I don't need to lie about any of the things I'm being asked..

A couple of weeks later, I get a call on the way to go Paddleboarding, and I'm told to pull over so that I can take the news that my blood glucose levels are alarmingly high. Days after that I'm on the conveyor belt through Gliclazide, then insulin (when it was assumed I could only be Type 1) and then more recently Metformin (once we were all convinced that it was definitely not Type 1)

But a hanging question has never really been resolved - how could I be healthy in April and dangerously unwell in June ?
And how could I have done everything modern guidance asks of all of us (to an obsessive degree) for three punishing years - and still be diagnosed Diabetic ?

First things first - I presented with weight loss, lots of urinating and lots of drinking water. Hilariously, I had convinced myself that I was properly hydrating, and that it was deliberate, but then our SodaStream yearly subscription was complete in four months - I couldn't argue that I wasn't drinking too much water... I did talk about the weight loss being controlled, but tick-tick-tick - let's get you on the Type-1 treatment. It's by far the most dangerous situation, and despite no family history, it was feasible... so, it seemed like the right call.

After a few weeks of that - we still hadn't had the blood test results looking for anti-body evidence of autoimmune function that would show type-1 or 2 - and so we moved to insulin and a glucose monitor. I suppose most on this sub-forum won't have a great deal of experience of that, but there is a lot to take in, and the support system kicked in. I felt really well looked after, and with some effort, my levels got better - but still spiked surprisingly, and nobody could tell my why. 'Sometimes this just happens' was an answer I got a lot... but I was telling people, 'The only time I feel unwell is when the levels are changing rapidly, it seems to me like the absolute numbers are less important to the amount of change...'.

I should mention - not that I'm looking for sympathy of course - that 5 months of insulin totally wiped out all the effort I had put in for three years - my weight went back up to where it started in a more or less straight line. I didn't complain - the more serious thing was that my blood glucose was being controlled... yes, I understand the problem with high blood glucose, I'll do whatever you ask.

Then I had an appointment with a new consultant, she began the 'interview' by asking about Ketone levels at my first presentation... and as I began answering, said 'wait, I don't trust people', and phoned my surgery to get the answer. When she put down the phone, I showed her my iPad, where I keep notes of everything, and displayed the same answer from a scan of the letter from the surgery. How were we going to have a dialog when she wasn't trusting my answers? 'Oh, I didn't mean that I didn't trust you, just that I don't trust anyone...' Suffice to say that the appointment was a little tetchy from that point. I'm sure she's sat in front of many people she knew to be lying to her face, but it's not the best strategy to build trust and confidence.

Anyway - she was pretty sure I was not type-1, to her credit, and asked me to take another test to finally put it to bed, that test looked for a triggered response of naturally produced insulin, which was positive - clearly, I could only be type-2.

So, that was fine, but I got the news in a letter asking me to drop the insulin and switch immediately to Metformin with 'supplements per NICE guidelines'. I felt that I couldn't just upend 6 months of learning to control the Most Important Thing - my blood glucose level, and needed to understand the whole thing better, so waited till I could speak to my GP. She was great, explained everything, and what Metformin was and what it did.

Which was great, except that some of what she said turned out later to be wrong, particularly in terms of Metformin's primary function.

So - I was now a new type-2, my levels were still too high, and spiking a lot, particularly in the morning. What the hell had kicked this all off ?

When I thought that I was just an unlucky person with late onset type-1, I was prepared to do anything; the hardest thing was accepting that this was now my life, and I'd worked hardest on that. Now, I had to turn my whole thinking on all of this around and start fresh. I needed to learn as much as I could - I didn't really know what glucose was or what made you insulin resistant. I just felt that things didn't add up for me, and I needed to figure it out myself, because where I was headed was really bad.

Luck took me to a YouTube interview with Dr Jason Fung, and then I immediately got his book 'The Diabetes Code' - and I went to bed literally shaking after devouring half of it.

The simple truth was that having reached my weight goals, and keeping my weight steady, I decided to treat myself with Honey. After all, it was natural sugar, we can't burn it, so it's a free pass, and I could see that it was having no effect on my weight. Soon enough, I was having Honey on my cereal in the morning, on sandwiches at lunch, sometimes a little to spice up the family meal that I would cook, and as a snack on Ryvita before bed. I was also mainlining grapes - we would buy four packs a week, and I would eat most of them. Grapes are fantastic in a calorie-controlled diet, because of their calorific density - lots of water... so again, a free pass.

I'm astounded at my own ignorance. Just gob-smackingly incredible.

I understand the mechanism better now, but in simple terms, I had overloaded my liver over and over to the point that my pancreas couldn't keep up, and had gone into beta-cell dysfunction, leading to a rapid rise in blood glucose... in weeks.

Having had that picked up, 6 months of additional insulin was the absolute worst thing I could have done... and now I'm taking the one drug that primarily blocks my liver from unburdening itself.

Unchecked - I'm on a path of taking more and more metformin to address the symptom of high blood glucose, until that stops working, then more insulin..

None of which would ever actually address the problem, that I simply have too much glucose, fructose and insulin in my body in the short term.

The one great positive of my situation is that I continue to wear a continuous glucose monitor (essential to avoid really bad things if you are type-1, but it turns out, very useful indeed for, well, everyone) and I was able to test the various theories in 'The Diabetes Code' and then Jessie Inchauspé with 'The Glucose Revolution' - everything totally stacks up with the evidence I can see with my own eyes, and the things I had intuited from the start.. the glucose spikes were the problem, and I had done this to myself; but I could undo it too.

Turns out, it takes eight weeks of force feeding Geese on Corn Syrup to make Foie Gras - that's what I had done to myself, and the system picked up on the resulting blood glucose level.

Anyway - quite enough rambling from me... where I am now is a full week into alternate day fasting, with close to zero sugar or starch on the eating days. I'm also not taking any metformin, because I can see on my monitor that my blood glucose is only marginally higher than a metabolically healthy person. I'm also supplementing with Huel daily greens, to make sure that the sudden change in diet does not result in loss of nutrients.

I only intend to do this for a month, and to present the results (massive, significant results in only a week) to my GP to force the issue - why, given this would you argue for Metformin? and I have an appointment with the Dietician about a month after that, at which point I may still be doing some form of intermittent fasting, but nothing so extreme, and with low, but not close-to-zero levels of starchy foods and following Jesse Inchuspé's recommendations to do so with no glucose spikes.

I still feel well looked after by the 'system' - I understand the decisions made and the treatment given, GPs only have 10 minutes at a time to make these decisions, and people are just unreliable at telling you the truth, or following a plan - so they treat with medication; can't blame the GP for doing their job.

But - I wish I'd known even a fraction of this much earlier in life..
If you've managed to get to the end of this Wall-o-text, thank you, I know my story is important to me, but otherwise it's just someone's story, and I appreciate you taking the time.
Best of luck (and better advice) on your own journey.
Chris

Wow what a great read! Well done in your admirable perseverance as many would have given up way before I'm sure. Like yourself I'm also a Jason Fung fan and have that book. I sometimes do two and three day fasts but mostly go for 18/6 intermittent feeding and just find it so easy now. I wish you continued success and improvement although somehow I really don't think you need luck now! Well done

 

[Chris24Main]

Hey all - the comments are very much appreciated. As far as books go, I'm thinking that Dr Malcolm Kendrick should be required reading in school...

So - quick one because this morning I'm due to meet with my GP, and I'm a little nervous. I promised I would update here, so this is the 'before' post.

Quick update - re-diagnosed in Jan as T2 having been treated from June as T1 - with all that entails, with injecting insulin, monitoring glucose, and putting on weight I had taken 3 years to lose. On Metformin and Lipitor.
Did a bunch of reading, convinced that in fact I had very acute non-alcoholic fatty liver, and that the best response was a 'Rolling Rishi' - or fasting every other day, to give 36hour periods of fasting to fully empty my liver and give it a full break (I'm heavily over-simplifying here) - also stop taking all drugs - note that I'm still using a CGM, so I have real-time feedback in term of blood glucose, so anything I'm not expecting, I can back off.

Short version of where I am after about a month of doing that - oh, and when I'm eating, I'm having, eggs, bacon, and sausage - lots of nuts, Greek yoghurt, and double cream to ease out of a fast, and just loving every meal like it's Christmas... Also using Huel daily greens to underpin everything and doing a short sharp high resistance session (only 15 mins) on my Cross Trainer first thing - this also provides feedback as I can be honest with myself about energy levels, and heart rate etc...

Bottom line - I feel amazing - I'm not by any means pushing intermittent fasting, but I've been shocked at how effective it's been for me, and just how good it makes me feel - but some stats; about 3 inches from my 'relaxed belly' circumference - about 10 kg weight loss overall, with a gain of 3 kg of muscle. Zero glucose spikes. I'll repeat that - Zero glucose spikes. for the entire month. and my blood glucose level bumps around 4mmol/L and up to about 6 if I'm exercising.

My sleep has improved (no surprise to learn that I have a good sleep monitor) - and in fact, some days I can track raises in blood glucose during sleep to periods of dreaming - that was a surprising thing, that I haven't seen in any of the literature. a bit niche, but it makes sense.

I've also started to meditate - I figure if I really believe the underlying thing of sleep, metabolise and mental health being interconnected, I really should invest some effort in practicing meditation, so I'm about 10 days in to doing 10mins of quite simple guided meditation. So far, I've also been surprised that I can feel the difference already.

But - I'm someone who can motivate toward a goal - this is about the long term, and I'm trying to make this a habit to live by - not a series of tasks I must complete.... and I appreciate that fasting every other day is tough... so, my plan is to back off a little through March - assuming I can convince my GP that I'm on a good track, and maybe fast one or two days in the week but eat normally otherwise so that it doesn't affect things socially...also I need to stop evangelising about glucose and cholesterol - my wife is incredibly supportive, but she's had to put up with me being a broken record all month - 'oh, and another thing - turns out avoiding sunlight is as dangerous as smoking... ' and so on...

Anyway - I'll post later to let you know how the meeting with the GP went...
Chris

 

[Outlier]

just loving every meal like it's Christmas.

I LOVE this phrase! It's just how I feel about my very low carb/keto diet - so much delicious food to choose from and I can eat enough.

You've done brilliantly - so has your wife - and I'll look forward to hearing about your doctor visit. Oh, and on the way back, whether it has gone the way you expected or not - buy your Mrs. some flowers!

 

[Chris24Main]

That's a piece of advice I wasn't expecting - but maybe one I should follow up on...

 

[Chris24Main]

OK - so I'm back from the Doctor's surgery and had a little time to digest. I should say that the appointment ended with my GP standing, grabbing my jacket and opening the door for me. She didn't quite push me toward the door, but it was very clear my time was done.

But it's a little unfair to characterise the whole meeting that way. I felt that she listened, she totally was supporting what I could do for myself, was open to my interpretation about what Metformin was and wasn't doing, and was much more resistant to any criticism of Statins, but we agreed that we could leave that argument for another day - all very agreeable, the time pressure was the main thing - there simply wasn't time to go through things in as much detail as I wanted, but there was no way to decompress a whole month of learning into the ten minutes that she could spend. I actually left feeling like - 'it's just not fair on GPs, the amount of pressure that we put on them - the level of expectation that we have'.

She said as much herself, she said that I was probably the most proactive diabetes patient she had, and that most people just shut down all the suggestions she had and wanted to know what pill to take. It was kind of the whole problem with our attitude to health more broadly in a nutshell.

In more detail - I now have a new target. In order to be classified as in remission, one needs to show a blood glucose level of 42 or better - and that of course by HBa1C. Mine was last tested at 50, and is currently predicted as 48, so there is still some way to go, but the GP suggested that I take a set of blood tests now, because anything that shows progress toward that will be helpful in making the case for remission. I thought that was about the most supportive and useful input.

She was surprisingly aligned with all the thinking I had gravitated toward in regard to diet, was supportive of the fasting I had done, and basically it seemed to me that everything I was saying about lowering carb absorption rate was like pushing at an open door - I had the very strong impression that there is a far greater understanding of glucose spiking within the medical profession, but that people may just not be willing to hear it.

I don't want to sound like I'm invalidating anyone here - I'm aware of how preachy I must sound, but everything to me seems to resolve down to some very simple things - we, as a species, simply haven't evolved to deal with lots of sugar regularly. A lot of our food is absorbed as lots of sugar quickly. Our control mechanism doesn't deal well with being overwhelmed over and over again, and starts to become less effective, so you have too much glucose and insulin in your system, which is really bad for your endothelial cells, which sit between your liquid blood and the walls of your veins and arteries. It gets progressively more technical from there, but none of the outcomes are good, and progressively bad if only treated by drugs, because you get resistant to the drugs in the same way as you get resistant to insulin.

None of that was in any way contentious, and it was only my view of Statins that caused any issue. I offered that Statins, while showing clear evidence of improvement for CVD in younger men, and men who have had a heart attack, there was much less of a benefit in terms of overall mortality. She countered with - I should look into rated of Kidney failure and other outcomes, death wasn't the only end point.. Which seemed fair enough, and I will do that. I then said, 'Well, why is it that plaques only form in arteries, when it's entirely the same blood chemistry in veins?' - she was very firm that veins and arteries were very different and that the endothelial cells were very different. It was about then that we ran out of time, and she was clearly becoming irritated with my 'just enough knowledge to be a pain in the ass' approach... supportive, but she wasn't about to be argued with, and again - I couldn't argue with the time pressure. I will also have to dig into that - I thought that veins and arteries can be transplanted and effectively show the behaviour of the other quickly, and this shows that they have the same structure, its mainly a question of the pressure of the flow of blood. But - I've only read a couple of books with a definite point to make... what do I know?

Bottom line, we agreed that I would do as planned, reduce the amount of fasting I'm doing to one or two days a week, to better fit around life, and keep it random so that you never settle into a routine, I will take bloods now, and again in May when I've had 3 months of this dietary regime.

In that time, she will keep Metformin and Lipitor on my prescription list, and I will continue not taking them - and we can push the argument we probably still need to have out for a couple of months, and I'll do some more reading with an open mind about them.

Best, Chris

 

[ajbod]

I can vouch that Arteries and Veins are interchangeable, as i had a Femoral Artery bypass done, using one of the Veins instead.
Keep up the good work, and the Evangelism, does tend to wane a bit as you come to realise, that unless someone is in our situation, on the whole they just don't want to know. You get fed up with banging your head against a brick wall.

 

[Chris24Main]

I thought I should just pop in with my latest blood and liver serum levels.
This is only intended to inform, or show the results in my case, having gone through Feb with a rolling fast - ie eating only every other day.

I am not suggesting that this will work for anyone, and I only felt able to safely drop my meds and do this because I'm wearing a CGM; but I did feel very strongly that this was the way forward for me - I'm in no position to offer advice to anyone though.

Anyway - that aside - my HbA1C has dropped from 50 in Nov to 42 (on the threshold of remission) now - and of course a measurement now includes cells that were around in Dec, so I expect this measurement to drop again when I take another set of tests in May.

I had deliberately stopped taking Metformin, because I figured that my plan was to allow my Liver to exhaust its supply of Glycogen regularly so that it would go into fat burning mode - so I didn't want to take meds which mainly blocked the Liver from producing Glucose (from those triglycerides).
I wasn't too concerned about total cholesterol or LDL levels but expected Triglyceride levels to drop (if my problem was fatty liver, a month of fasting should show as a sharp reduction in the fat levels - or triglycerides in the Liver).

So - triglyceride levels were down by 25% to 'normal' levels.
overall cholesterol and LDL were also down - funnily enough, the test result showed in all cases 'good control - continue on current meds'. I have also stopped taking Statins.

With these results - I'm very confident of being able to reverse my diagnosis, and will continue on this fasting regime for a little longer, maybe one or two days permanently - it's surprising just how much of an effect it has, and I now feel very clearly when I'm 'digesting' and when I'm not - like a new sense that's come into existence...

Thanks for the comments - I really appreciate and value being able to think things through on this forum, and to take findings from people with much more experience than me...

Best,
Chris

 

[BarbaraG]

I was under the impression that gluconeogenesis in the liver used protein as the substrate, rather than fat. Could be wrong on that. I thought the triglycerides in the liver were just released into the bloodstream when the hormonal environment was suitable, and then used as fuel.

On the subject of statins - I started on Atorvastatin in January 2023, purely because my QRisk had nudged from just under 10% to just over. My HbA1C at that point was 56. The following year it had risen to 71 with no significant changes to diet, exercise or weight which would explain it.

I am a rebel. I binned the statins, declined to take the additional (3rd) diabetes med which was prescribed for me (empaglflozin) and intensified my efforts on diet and exercise, which I had in any case already started. I started wearing the CGM and in 3 weeks my 7-day average BG went from 9.5 down to 7.5.

Then I was hit by a national shortage of my second diabetes med, an injection called Trulicity. In less than 3 weeks from when I should have had the next weekly dose, my 7-day average had risen to 10.0. It then started coming slowly down, and had reached 9.5 when I got my next prescription on Wednesday this week - and I was able to get the Trulicity. Average now down to 9.0 already and falling.

Meanwhile I am continuing to low carb and exercise, I have no intention of giving that up. It would be nice to think I could get to the point of not needing the Trulicity. But I’m happy to have it for now.

 

[Mrs HJG]

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.

 

[Chris24Main]

I was under the impression that gluconeogenesis in the liver used protein as the substrate, rather than fat. Could be wrong on that. I thought the triglycerides in the liver were just released into the bloodstream when the hormonal environment was suitable, and then used as fuel.

On the subject of statins - I started on Atorvastatin in January 2023, purely because my QRisk had nudged from just under 10% to just over. My HbA1C at that point was 56. The following year it had risen to 71 with no significant changes to diet, exercise or weight which would explain it.

I am a rebel. I binned the statins, declined to take the additional (3rd) diabetes med which was prescribed for me (empaglflozin) and intensified my efforts on diet and exercise, which I had in any case already started. I started wearing the CGM and in 3 weeks my 7-day average BG went from 9.5 down to 7.5.

Then I was hit by a national shortage of my second diabetes med, an injection called Trulicity. In less than 3 weeks from when I should have had the next weekly dose, my 7-day average had risen to 10.0. It then started coming slowly down, and had reached 9.5 when I got my next prescription on Wednesday this week - and I was able to get the Trulicity. Average now down to 9.0 already and falling.

Meanwhile I am continuing to low carb and exercise, I have no intention of giving that up. It would be nice to think I could get to the point of not needing the Trulicity. But I’m happy to have it for now.

Hey - thanks for the reply... I'm in no way an expert on any of this - and almost all of my 'experience' is based purely on monitoring myself, and there is a huge danger in that if you read any of Prof Tim Spector - we are all very different in the way we deal with different foods - but my understanding is that the liver is a bit of a magic worker - it can turn pretty much anything into anything, so gluconeogenesis can start with protein (though you are also likely to turn excess protein from food first into triglycerides) or lipids in the form of triglycerides. In the event that there is a choice - who knows... but for me, my thought was that my liver was stuffed full of fat, so any med that was designed to stop the liver from getting shot of it was to be avoided.

But - I think it amounts to the same thing - you can't actually use fat for fuel (it's only ever in the blood on it's way to be stored somewhere, and then packaged in some other form of lipoprotein) - it's got to be converted to glucose first, so when anyone is talking about burning fat, it's only a question of using stored reserves in fat cells rather than using direct glucose, glycogen or triglycerides from recently eaten food.. but the liver is involved all the time...

Can I ask in your case, having binned the statins; and clearly motivated to take this on yourself, have you seen any change in your serum lipids despite taking no statins?

I was encouraged to read more about the positive effects on kidney disease by my GP.. so I did, and the first article I came up with started 'Rabbits in New Zealand, when fed with a high Cholesterol diet, exhibited (forget the term now, but issues in their kidneys) and went on to say that because of this, humans should take statins to protect their kidneys. I had to read it again.... 'wait, you fed rabbits something they are totally not equipped to deal with, then suggest that since statins reduce the thing you over fed them with in human blood, that humans should take this to avoid the totally artificial effect you observed?' - I had to read it again three times, and yes; that was the argument. It was totally bonkers, but that was the source article, all medical jargon, and totally plausible, it was like the Trojan Rabbit scene in Monty Python and he Holy Grail (he says, dating himself) Tell me again? 'Sir Lancelot, Sir Galahad and I; wait in the Rabbit till nightfall, and then.. er...'

It even skipped past the fact that it's totally accepted that there is no link between dietary cholesterol and blood cholesterol in people, let alone Rabbits...

Anyway - I digress..

When I was first diagnosed as T1 - and put on Glyclazide - I thought that the effect that this was meant to have was to pass more glucose in my urine - effectively flushing it out of my blood which was far too high. That seemed to make sense to me at the time, but now, I cannot figure how I came to that, because it makes no sense. This is the mechanism that empaglflozin employs, by stopping the absorption of glucose in the kidneys. Glycalzide was only flogging my already struggling Pancreas into creating more insulin. The big issue is that this is all very complicated stuff, and these are very powerful meds.. and it's difficult to compare anything with action you may take yourself, because the doctors can only base things on statistics (personal opinion warning)

I have no personal experience with Trulicity, though it sounds good, and it's clearly working for you..

it does sound like a drug that is mainly flogging the pancreas though.. so focused on blood glucose rather than total body glucose and insulin. like most T2 meds do.. I'm not surprised you see a raise in blood glucose when you can't get it. But I'm getting close to offering advice, and I'm really in no position to do that.. Good for you; I'm sure you can get to a point where it's irrelevant...
Best,
Chris