Numbers looking good at last, but now what?

[Drummer]

I'm a newbie (diagnosed end of July!) so thanks for the thoughts and prayers!
I seem to be what I've seen @Drummer describes a your basic type 2 (albeit with a strong family history of T2). I was largely externally asymptomatic upon diagnosis but obese with a fatty liver.
As you say the most terrifying thing about being new is hearing all the different theories, some of which are in direct contradiction to each other and almost all go against my surgery's advice of eat brown rice and less potatoes. It really does feel you 'pay your money and take your chance'.

For me, actually the choice was easy, I wasn't going to calorie count as, after years of yo-yo dieting and disordered eating, that's the way madness lies for me
.
So, low carb and IF have been my choice. It seems to be working. My blood sugars, based on finger pricks, have never gone below 4 nor above 8.5 and I've lost 20lbs without remotely trying (which with my chequered past around diets is a really big deal). I feel -amazing. My digestion is better, my sleep is better, my menopause symptoms are better, I have energy that I didn’t have before. Plus, I really love the food I've been eating for the past 2 months!

I've come to the conclusion that I'm just not very carb tolerant anyway (even without diabetes - I was pre-diabetic at 42 mmol, 12 months before diagnosis so I know I haven't been living with years of undiagnosed diabetes to explain 'carb sickness').

I'm presumptious, I know, posting in the remission section when the absolute earliest I could claim remission, if everything is straightforward, would be February 2026. I suppose I'm just echoing the idea that I would love to be able to say I was 'cured' eventually, with my beta cells dancing the tango and doing their thing but I think lower carb suits me irrelevant of diabetes and I'm not in a hurry to resume a way of eating that patently didn’t work for me even my metabolism supposedly wasn't broken.

All the labels - prediabetic, diabetic - very bad diabetic as my GP labelled me - and all the in remission and whatever - they are only labels and there is no thought if which direction a person is going.

Soon after diagnosis I was on my way back to normal - having got rid of the tablets making me feel so unwell I had already bult my barricade and set my flag on the top of it. The rebellion was underway and it was only a matter of time before the powers that be accepted that this was the future.

 

[childofthesea43]

I'm a newbie (diagnosed end of July!) so thanks for the thoughts and prayers!
I seem to be what I've seen @Drummer describes a your basic type 2 (albeit with a strong family history of T2). I was largely externally asymptomatic upon diagnosis but obese with a fatty liver.
As you say the most terrifying thing about being new is hearing all the different theories, some of which are in direct contradiction to each other and almost all go against my surgery's advice of eat brown rice and less potatoes. It really does feel you 'pay your money and take your chance'.

For me, actually the choice was easy, I wasn't going to calorie count as, after years of yo-yo dieting and disordered eating, that's the way madness lies for me
.
So, low carb and IF have been my choice. It seems to be working. My blood sugars, based on finger pricks, have never gone below 4 nor above 8.5 and I've lost 20lbs without remotely trying (which with my chequered past around diets is a really big deal). I feel -amazing. My digestion is better, my sleep is better, my menopause symptoms are better, I have energy that I didn’t have before. Plus, I really love the food I've been eating for the past 2 months!

I've come to the conclusion that I'm just not very carb tolerant anyway (even without diabetes - I was pre-diabetic at 42 mmol, 12 months before diagnosis so I know I haven't been living with years of undiagnosed diabetes to explain 'carb sickness').

I'm presumptious, I know, posting in the remission section when the absolute earliest I could claim remission, if everything is straightforward, would be February 2026. I suppose I'm just echoing the idea that I would love to be able to say I was 'cured' eventually, with my beta cells dancing the tango and doing their thing but I think lower carb suits me irrelevant of diabetes and I'm not in a hurry to resume a way of eating that patently didn’t work for me even my metabolism supposedly wasn't broken.

you’re clearly doing very well on your chosen strategy and that’s what matters, so keep going and never mind all the other noise (including mine).

 

[Hevski]

I was diagnosed with type-2 diabetes back in April by accident, with an HbA1C figure of 11.5% (I think - this was a confusing time with a lot of numbers thrown around, typically without the units they were being expressed in, and getting data out of my GP's receptionist is challenging).

I was given a ten-minute appointment with a diabetes nurse, who gave me some very basic advice on diet (portion control), leaflets on looking after my feet, and so on. Many assumptions were made, such as that I was on a "typical Scottish diet of mince and tatties" (I have never eaten mince and tatties in my life, nor would I!), and that I should perhaps eat fewer tatties. I was told (in words of one syllable) that red meat is the only source of dietary iron (which I knew to be wrong), NOT to test my own blood sugar (which I now consider to have been bad advice) and left to my own devices.

I crash educated myself on type-2 diabetes, going back to the primary literature when I needed to.

Mistakes were made. In particular, "eat lots of wholegrains" very quickly becomes a quantity of wholegrains that will cause a vicious glucose spike. The protein shakes I was drinking in order to buffer the carbohydrates in a meal contained enough carbs in themselves to do likewise. Eating even low-GI fruit can become "too much" very, very quickly. If I had ignored the diabetes nurse this would have been clear much, much earlier.

Otherwise, I threw the kitchen sink at the problem. Walks. The rowing machine I bought at the height of the pandemic was repurposed from the clothes horse it had inevitably become when it was relatively safe to get out again. Strength training. Berberine. Cinnamon. I cut out most of the ultra-processed food, all the refined sugar, alcohol, fruit juice, potatoes (oh, potatoes!).

My BMI has dropped from 25.7 to 21.9. My waist to height ratio has gone from 0.55 to 0.51. I have a body roundness index figure of 0.35. My friends say I "look skinny".

By early August, my HbA1C was down to 8.4%. Not good enough. I took the better advice of people living with diabetes and started glucose testing, initially with a finger-prick device and very shortly thereafter with a CGM.

That tells me my current A1C estimate, based on 27 days of data, is 6.2%. For the past 14 days, I have spent 99% of the time with my glucose levels between 3.9mmol/L and 10mmol/L (for the past 10 days it's been 100%). My average daily glucose for the past fortnight has been 6.7mmol/L, with a variability coefficient of 16.6%. I ran the numbers through a linear regression calculator, which tells me my daily glucose average is dropping by just short of 0.5mmol/L a week.

Some of that is clearly about learning what foods cause a problem. To what degree it's an actual improvement in insulin response remains unknown, in part because I'm nervous about eating a large sandwich and finding out.

That having been said, I'm winning. The glucose figures are such that, if I can sustain them without the drugs (I'm on Empagliflozin as well), that puts me into the remission category.

Achievement.

BUT:

I can safely lose about another 3 or 4 kilos before I run the risk of a high fever dropping me into a position where I would be dangerously underweight. At present rates of weight loss (I have been fairly steadily losing about half a kilo a week since April), that would be in late October or early November, which is now looming in a way it wasn't back when I started. Everything I know of that will maintain safe glucose levels is going to incidentally cause me to lose weight.

On the other hand, at present rates my average daily glucose should be into the nondiabetic (not prediabetic, *non*diabetic) range perhaps a little bit before that.

So, I have some related questions I was hoping someone could answer, please:

Does anyone have any experience of maintaining remission without losing weight? What worked for you?

and

What actually happens to your insulin response when you are in remission? Do you reach a point where you can eat a banana without your glucose levels heading for 11 or 12 mmol/L (which is what happened last time I tried it), or is it simply the fact that remission or not, I am still going to be diabetic and too much carbohydrate is going to cause a nasty sugar spike? Is remission really just good ongoing glucose control? Is the way that I know I'm in remission the (currently hypothetical) fact that those spikes don't happen? Would I be able to go to my local café and eat a slice of chocolate cake and see my glucose go up to 7.8mmol/L and come straight back down?

Thank you.

I am on Berberine, I’m taking Viridian Organic Grape Root, but can I ask what kind you take, dosage and how much a day?

I’ve been diagnosed since 2018, I was pre-diabetic back then, now my blood sugars have shot up, I’m still really struggling with all of this, knowing what to eat etc.

I only drink water now, but I still eat too many carbs etc.

What glucose monitor do you use? Wish I had a rowing machine, I have a mountain bike, but would rather have a rowing machine, lol…

 

[Hevski]

I actually meant what is “normal” eating rather than normal glucose ranges. It varies enormously. Perhaps a better phrase would be to eat nutritiously.

I’ve always struggled with normal eating. I like big portions of food and to feel satiated, that’s my problem. I would feel like I’m starving on smaller amounts.

 

[beating_my_betes]

I’ve always struggled with normal eating. I like big portions of food and to feel satiated, that’s my problem. I would feel like I’m starving on smaller amounts.

There is nothing abnormal about this.

 

[Hevski]

What it might do, and I think this is important, is remove some of the stigma from those who are diabetic and overweight. If being overweight causes diabetes, then there will be those who falsely blame the diabetic person for becoming diabetic by allowing themselves to become overweight, or lacking the willpower to lose weight, or something equally oversimplistic. It's wrong both morally and factually, but we know it's all too common. If diabetes causes some diabetic people to become overweight, that accusation falls.

I am alas Diabetic and Overweight, I have been Overweight since I was a teenager, in fact I’m obese. I’m a female who is around a size 22/24. I was a size 16 at the age of 12. I am big boned, lol, it is a thing, my Scottish female ancestors (including my Scottish Mother) were all big women, with thick calf’s and cankles. Unfortunately, I seem to have inherited my Diabetes from my English Grandmother, my Dads mum, (who has Welsh ancestry). She was a heavy smoker, and she was never big in life, a size 16-18 at most, she was extremely skinny when younger, she lost a leg to Diabetes and wasted away to nothing, before she died, I don’t want that to happen to me. My Scottish mother in contrast was a size 30 at her biggest, never smoked or drank, had a healthier diet than I had, but when she met my Dad, well, that didn’t help, he loved everything to be cooked in beef dripping. Which I guess people would think is healthy now, but not when you were encouraged to clear your plate, and the Beef dripping was used to fry chips constantly. But anyway, my mother died of cancer, not Diabetes, she didn’t have it, but she developed leg ulcers at one point. But she didn’t have it despite being big. She died at 66 though. My father died at 56, he was also a heavy smoker and drinker, and lover of all the fatty fried food. But we did eat healthier meals too, but carb laden. He developed an Aneurysm before he died. Because his arteries were furred up. He started to eat healthy, in the years before he died, took up gardening.

So I’ve been big for years, but usually always the same clothes size. Apart from when I lost 3 stone naturally, by moving more and eating less (to be fair, almost starving myself), I was the fittest I had been in years around 2010. Then got into a bad relationship that ended in 2013, and just put all the weight back on.

My Dr looks at me, and I know for her it’s that I am overweight that I developed Diabetes, plus I love chocolate. But then I don’t think she knows that my Dads grandmother, had Diabetes and yet was thin, just unhealthy. And we have heart issues on that side. I also have Ehlers Danlos. I asked my Scottish cousin, if her mother (my mums cousin) had Diabetes (she was also overweight), and she said that no, her mum didn’t have Diabetes. So I guess that proves your point. But in my case I don’t know. I was 41 when told I was pre-diabetic. I’m 47 now. I’ve also got heart failure. I’m just a terrible combination of the wrong genes.

 

[Hevski]

There is nothing abnormal about this.

No, maybe not, but it’s not good if you’re eating big portions of the wrong sorts of foods. Which is what I’m doing at the moment. Need to change my diet.

 

[beating_my_betes]

No, maybe not, but it’s not good if you’re eating big portions of the wrong sorts of foods. Which is what I’m doing at the moment. Need to change my diet.

Yeah...that's a different thing entirely. Right there with ya 🙂

 

[Fox]

I am on Berberine, I’m taking Viridian Organic Grape Root, but can I ask what kind you take, dosage and how much a day?

I’ve been diagnosed since 2018, I was pre-diabetic back then, now my blood sugars have shot up, I’m still really struggling with all of this, knowing what to eat etc.

I only drink water now, but I still eat too many carbs etc.

What glucose monitor do you use? Wish I had a rowing machine, I have a mountain bike, but would rather have a rowing machine, lol…

Hello @Hevski

I don't want to start recommending brands and so on, but from what I have read (please confirm this for yourself, because I am no doctor) berberine has a very short half life in the body, so I am taking 600mg 3 times a day before meals.

I have the sense, although I have no frame of comparison, that the monitors all provide the same range of data at about the same cost per unit time. It has proven very useful in terms of understanding what foods cause glucose spikes, and my glucose is now under 10mmol/L about 98% of the time, and this week has been under 8.5mmol/L 96% of the time, which is a definite improvement on where I started.

Disentangling exercise is more difficult, but I now have some unconfirmed suspicions about what my body is doing with respect to exercise and glucose. My current working hypothesis, now under test, is that I need to deplete my glycogen stores through exercise before eating carbohydrates.

The problem is that while this will help keep my glucose levels down, it will also continue to cause me to lose weight, which is now, while still well within the safe range, below the midpoint of that range, and still falling.

You can't eat to a meter without a meter, unfortunately, and meters are expensive.

I bought the rowing machine at the height of the pandemic so I could exercise without going out. I picked that because it gives a cardio workout and resistance training for the maximum number of muscle groups. It is, however, extremely tedious. A good audiobook helps.

 

[everydayupsanddowns]

You can't eat to a meter without a meter, unfortunately, and meters are expensive.

Some meters are considerably more affordable than others @Fox @Hevski

The most affordable and reliable meters members here have found are the SD Gluco Navii, the Spirit Tee2, or the Contour Blue - which all have test strips at around £10 for 50. Some other brands can be 3x that much!

 

[Hevski]

Some meters are considerably more affordable than others @Fox @Hevski

The most affordable and reliable meters members here have found are the SD Gluco Navii, the Spirit Tee2, or the Contour Blue - which all have test strips at around £10 for 50. Some other brands can be 3x that much!

I see you take a statin, how do you get on with that? My Dr will want me to take a statin, but I really, really don’t want to. I’ve already said no. I guess you might not have a choice if you have type 1? Recently I’ve been wondering if I might have type 1.5..
I know it’s mostly thinner people that develop that. I say this because I have other autoimmune issues, like Endometriosis, I have Histamine issues etc too. In 2018 I was labelled pre-diabetic. My HB1Ac was 53mmol, then it went down to 49, then, back up to 57, then between 2019 and 2021 (LOCKDOWN, no physical movement) it went up to 77 (I wasn’t doing any real changes to my diet or life), and then it went up even more, I brought it down by 10mmol, by changing my diet a little and I started taking Berberine last summer. But it’s gone up by 5mmol. Now….
My English grandmother, who I think I’ve inherited Diabetes from she wasn’t a very overweight person. I could only think in dress size she was a size 16/18. I don’t know maybe slimmer. She wasn’t fat, she was just a heavy smoker.
Anyway my point when my Diabetes shot up, (well it was still lockdown when it went up, between 2021-2023) one of my Dr’s thought I might have Autoimmune Pancreatitis.. I didn’t have that, they said after tests, I have Fatty Liver Disease. But I do have autoimmune conditions. And I wonder if might be 1.5..

I should get a glucose monitor, I just don’t like pricking my finger at all. I don’t like injections either. Thank for the links.

 

[Hevski]

Hello @Hevski

I don't want to start recommending brands and so on, but from what I have read (please confirm this for yourself, because I am no doctor) berberine has a very short half life in the body, so I am taking 600mg 3 times a day before meals.

I have the sense, although I have no frame of comparison, that the monitors all provide the same range of data at about the same cost per unit time. It has proven very useful in terms of understanding what foods cause glucose spikes, and my glucose is now under 10mmol/L about 98% of the time, and this week has been under 8.5mmol/L 96% of the time, which is a definite improvement on where I started.

Disentangling exercise is more difficult, but I now have some unconfirmed suspicions about what my body is doing with respect to exercise and glucose. My current working hypothesis, now under test, is that I need to deplete my glycogen stores through exercise before eating carbohydrates.

The problem is that while this will help keep my glucose levels down, it will also continue to cause me to lose weight, which is now, while still well within the safe range, below the midpoint of that range, and still falling.

You can't eat to a meter without a meter, unfortunately, and meters are expensive.

I bought the rowing machine at the height of the pandemic so I could exercise without going out. I picked that because it gives a cardio workout and resistance training for the maximum number of muscle groups. It is, however, extremely tedious. A good audiobook helps.

Ah, I’m only taking 350mg, 3 times a day. It’s just because the brand I chose was a brand I used. You can’t get Berberine on the NHS can you?

 

[everydayupsanddowns]

I see you take a statin, how do you get on with that? My Dr will want me to take a statin, but I really, really don’t want to. I’ve already said no. I guess you might not have a choice if you have type 1? Recently I’ve been wondering if I might have type 1.5..

I was a little cautious about statins for a while. Partly because my diabetes has always been pretty well managed in terms of the overall T1 population, so I found it hard to assess my individual level of risk.

Having started a couple of years ago, I can’t believe it took me so long. I have had precisely zero negative effects. The only changes I’ve seen is that all components of my lipid panel are now in the recommended ranges.

The trial evidence is really clear. The vast, vast majority of people can take statins with absolutely no negative effects (which isn’t the impression you get from The Internet). And they reduce risks of heart disease very effectively.

There are a few members here who didn’t get on with any of the different statins they were offered, but there are many more who take them with no issue.

I suspect part of the issue is taking a medicine so that nothing happens. It’s quite hard to get a positive reinforcement from nothing.

Perhaps you could give them a try and see how you get on?

 

[CliffH]

I was a little cautious about statins for a while. Partly because my diabetes has always been pretty well managed in terms of the overall T1 population, so I found it hard to assess my individual level of risk.

Having started a couple of years ago, I can’t believe it took me so long. I have had precisely zero negative effects. The only changes I’ve seen is that all components of my lipid panel are now in the recommended ranges.

The trial evidence is really clear. The vast, vast majority of people can take statins with absolutely no negative effects (which isn’t the impression you get from The Internet). And they reduce risks of heart disease very effectively.

There are a few members here who didn’t get on with any of the different statins they were offered, but there are many more who take them with no issue.

I suspect part of the issue is taking a medicine so that nothing happens. It’s quite hard to get a positive reinforcement from nothing.

Perhaps you could give them a try and see how you get on?

I have Late Onset Type 1 (sometimes called Type 1.5) and I've been taking statins for more than a year with no problems. I had to tell myself not to allow my pride (I'm physically fit and don't consider myself old) to get in the way of doing something sensible.

 

[everydayupsanddowns]

I have Late Onset Type 1 (sometimes called Type 1.5) and I've been taking statins for more than a year with no problems. I had to tell myself not to allow my pride (I'm physically fit and don't consider myself old) to get in the way of doing something sensible.

Yep, however well we are doing, we’ll still be having glucose levels outside the ‘normal’ range.

And there is research that the positive effects are cumulative over time - so the reduction in risk improves where improved lipid levels are maintained over a longer period.

 

[CliffH]

I was a little cautious about statins for a while. Partly because my diabetes has always been pretty well managed in terms of the overall T1 population, so I found it hard to assess my individual level of risk.

Having started a couple of years ago, I can’t believe it took me so long. I have had precisely zero negative effects. The only changes I’ve seen is that all components of my lipid panel are now in the recommended ranges.

The trial evidence is really clear. The vast, vast majority of people can take statins with absolutely no negative effects (which isn’t the impression you get from The Internet). And they reduce risks of heart disease very effectively.

There are a few members here who didn’t get on with any of the different statins they were offered, but there are many more who take them with no issue.

I suspect part of the issue is taking a medicine so that nothing happens. It’s quite hard to get a positive reinforcement from nothing.

Perhaps you could give them a try and see how you get on?

Yep, however well we are doing, we’ll still be having glucose levels outside the ‘normal’ range.

And there is research that the positive effects are cumulative over time - so the reduction in risk improves where improved lipid levels are maintained over a longer period.

One question that I've never been able to get a straight answer to is: "If I'm able to keep my blood glucose levels within normal (or near normal) limits, to what extent does that reduce or even eliminate the chances of any or all of the likely complications of diabetes?". I'm in my early 60s and my ambition is to live to 80, as that seems a reasonable maximum life expectancy (whilst having a decent quality of life) for someone with Type 1 🙂.

 

[everydayupsanddowns]

Well i’m not sure anyone can answer that with any certainty @CliffH

When I was diagnosed a figure was bandied about about T1 reducing life expectancy by 20 years.

With improvements in diabetes management and tech more recently I heard the figure was suggested to be now only 10 years.

But of course those are averages, based on historic data of other people.

They aren’t specifically about you. Or me.

And they don’t factor-in the “being hit by a bus” variable (or any calamity of choice)

As I understand it, most of us T1s typically meet our ending via heart attack, stroke, or some other cardiac event.

Fingers crossed you make your target in fine fettle!

 

[CliffH]

Well i’m not sure anyone can answer that with any certainty @CliffH

When I was diagnosed a figure was bandied about about T1 reducing life expectancy by 20 years.

With improvements in diabetes management and tech more recently I heard the figure was suggested to be now only 10 years.

But of course those are averages, based on historic data of other people.

They aren’t specifically about you. Or me.

And they don’t factor-in the “being hit by a bus” variable (or any calamity of choice)

As I understand it, most of us T1s typically meet our ending via heart attack, stroke, or some other cardiac event.

Fingers crossed you make your target in fine fettle!

Well I always wanted to be on 'The Record Breakers'. I tried (and failed) to break the coin snatching and frankfurter eating world records but perhaps I can become the oldest person ever with Late Onset Type 1 diabetes .

 

[Leadinglights]

Well I always wanted to be on 'The Record Breakers'. I tried (and failed) to break the coin snatching and frankfurter eating world records but perhaps I can become the oldest person ever with Late Onset Type 1 diabetes .

I think you would need to be a lot older, a friend was diagnosed as Type 1 and they are nearly 80

 

[CliffH]

I think you would need to be a lot older, a friend was diagnosed as Type 1 and they are nearly 80

Okay: I'll keep working at it!