Why might we get stuck?

[Oldvatr]

@HSSS I do see a potential way forward. Have you considered using a Low Calorie diet plan like ND or Blood Sugar 800 Plus ( i,e the LC variant) just as a short sharp shock to reset the system? Using shakes is fairly easy to do, and covers basic nutrition needs during the restriction. Maybe a combination therapy might shift things into gear again, and then you could revert to LC diet for ongoing care. Although I disparage ND as a pathway to Remission, I do accept it as being a viable tool for some, It is basically a detox diet. However, it is also a crash diet and carries warnings about making NAFLD worse so should be used sparingly and not as a regular WOE.

 

[HSSS]

Probably didn't explain myself very well. I didn't mean that you weren't diagnosed as a diabetic, but what if you were diagnosed as Type 1/Lada rather than Type 2. In my view a low-carb diet would benefit all diabetic types, but Type 1's will probably still need insulin as well. So if you were diagnosed Lada, you might have gone low-carb and been happy with your results as you would not have expected full remission.

In other words, rather than feel you have failed, I think you should have been proud.



That I can certain agree with.

Probably not. Even as a LADA/type 1 certainly requiring insulin, if not immediately then within a few years, I would still desire normal levels - just achieved by different methods. Requiring insulin when you don’t make any/enough is quite different to already have too much but being resistant to it.

The feeling of failure is about the last few months where I’ve been falling off the wagon, not previously where it was more frustration as I knew I was doing my best at that time.

I’ve probably confused the thread by discussing two different time periods and degrees of control but the frustration of dashed expectations/hopes/desires of the earlier days has in part led to the struggling recently.

 

[HSSS]

@HSSS I do see a potential way forward. Have you considered using a Low Calorie diet plan like ND or Blood Sugar 800 Plus ( i,e the LC variant) just as a short sharp shock to reset the system? Using shakes is fairly easy to do, and covers basic nutrition needs during the restriction. Maybe a combination therapy might shift things into gear again, and then you could revert to LC diet for ongoing care. Although I disparage ND as a pathway to Remission, I do accept it as being a viable tool for some, It is basically a detox diet. However, it is also a crash diet and carries warnings about making NAFLD worse so should be used sparingly and not as a regular WOE.

Mmmm. Food for thought if you pardon the pun. Really never considered it. I dislike the entire ethos of crash diets/meal replacements and I’m not sure a detox is what I need. Although I too accept it helps some people. I’ll contemplate the idea again perhaps but right at this moment doesn’t seem attractive or particularly practical/easy within family life.

I have two problems in this thread. The more recent is falling off/getting back on the wagon in the last few months (which is about my mindset mostly and not what I’m seeking to address in this thread) but the main point is about the actual limitation of low carb and keto in some of us to fully reverse type 2 into remission of real normal rather than just non diabetic prediabetic levels.

 

[Oldvatr]

The <100 a day is only the last few months and is fairly often a lot less. I was stuck in the low 40’s when eating at keto levels.
I do (did) usually only have 2 meals, occasionally one and it is already very meat based.
I understand why levels might well be higher this time round. The post is about why they might not have fallen previously even when I was fully on the wagon for 3 yrs.

Our bodies have a very capable factory process that turns any hydrocarbons into useful ATP for energy. Note that chemistry classes food as hydrocarbons not carbohydrates. So it means protein and fats can also be converted into glucose.
In fact, many insulin users find they need to bolus for protein at around 50% the carb value to allow for this, especially when low carbing. Fats do tend to take a different path as lipids, so only get converted to glucose in extreme starvation circumstances. ketosis burns fats, but only if there is no glucose hanging around.

I assume you have had your thyroid function checked?

I am of the opinion that there are two forms of insulin resistance. Muscle (or mitochondial) and Adipose (as in lipids) and that these present differing charcteristics, They also probably need different therapies to reduce this effect. That may be why ND has only 46% success rate, and why LCHF does not work for everyone. Hence my suggestion to mix and match.

One problem with any Lo Carb diet is that many people doing it increase protein and stay low fat. So the protein adds to the glucose problem. LCHF if done properly uses fat as the control parameter for both saity and weight control and will probably be more successful than the low fat version in the long term.

 

[bulkbiker]

The <100 a day is only the last few months and is fairly often a lot less. I was stuck in the low 40’s when eating at keto levels.
I do (did) usually only have 2 meals, occasionally one and it is already very meat based.
I understand why levels might well be higher this time round. The post is about why they might not have fallen previously even when I was fully on the wagon for 3 yrs.

But for some ketosis is only achievable through extremely low carb eating so it may well be that 20g of carbs per day or less is your limit?
It may always have been so if you haven't ever got there then maybe that's why remission hasn't come yet.
Maybe try an extended fast for a few days and see what occurs? Just a thought.

 

[Oldvatr]

Mmmm. Food for thought if you pardon the pun. Really never considered it. I dislike the entire ethos of crash diets/meal replacements and I’m not sure a detox is what I need. Although I too accept it helps some people. I’ll contemplate the idea again perhaps but right at this moment doesn’t seem attractive or particularly practical/easy within family life.

I have two problems in this thread. The more recent is falling off/getting back on the wagon in the last few months (which is about my mindset mostly and not what I’m seeking to address in this thread) but the main point is about the actual limitation of low carb and keto in some of us to fully reverse type 2 into remission of real normal rather than just non diabetic prediabetic levels.

"remission of real normal" . In my experience the most destructive words are " If only" but your quote here comes close to it. If we were discussing cancer or similar chronic progressive condition, then remission means "in abeyance" i.e. is a pause in the progression but is not actually a cure. But in diabetes care the term takes on the synonym of Cure - permanent and forever. which is nonsense IMO. There is a myth cult among diabetics that remission means able to go back to the old ways of enjoying life before DX.

I prefer the term reversal which I picture as pulling back from the brink. I am in control and while I keep that control, I am reducing the chances of developing complications. I have had T2D for around 30 years now, and I and my GP are surprised at how well I have managed so far. But I am not cured. I am coping.

 

[Mrs HJG]

? Can't figure out what that means!

I am not receiving any support from either the local Diabetes Nurse nor the hospital team as both sides think I belong to the other - I 'use' the diabetes nurse as I can guarantee being able to speak to her, and she can speak easily to my GP, the hospital just have the answerphone on and call back a few days later if they want to. I would hope my situation is an exception, and those with decent nurses/teams get the right help at the right time depending upon their diagnosis.

 

[Lamont D]

Potatoes probably spike us more because we don't tend to eat them raw.

N No, I assure you it's the starch, which if you have a look at the chemical formula for starch is the same as a sugar with the same elements in different quantities of carbs!

 

[Lamont D]

Thank you. I feel you have heard me. Maybe I did need a little reassurance after all. I suspect there is an element of depression going on, and it’s also removing my filter right now. I don’t think I’m anxious about my diabetes. Fed up definitely and struggling to maintain the control over choices I’ve had til recently. And I hate that too. I’m feeling I’m failing myself.

I agree I’ve always had a nagging feeling there’s a little more to it. Is that health anxiety? Maybe. I’ve had several misdiagnosed situations and scares, some quite serious? Or is it I have good reason to be suspicious? Also maybe. I don’t eat too much. I eat significantly less than I did most of my life as a result of - mostly - choosing nutrient dense food. Usually two meals a day. I do not seem to be reacting as if I have intolerances, other than carbs.

I’m trying to justify the cost of private testing as I won’t get them via the nhs. Unless my results are hugely different I don’t think I’ll be able to talk the nurse into a referral necessary for those tests.

Why aren't you on the diabetic register?
Your dsn can't do any referrals, your GP can!
And your doctor can suggest other tests!
Ask for a GP appointment, tell your surgery, you need to speak to him in confidence!
And go from there!
You should not have to go private! To get help of answers.
If you don't ask and ask and ask and ask again! They do have an obligation to give you an appointment without telling the phone operator. Or if your surgery had an econsult system, use that!

Keep safe,
Best wishes

 

[HSSS]

I assume you have had your thyroid function checked?

Yes repeatedly as I too have wondered about this. In fact I was found to have multiple goitres one of which was highly suspicious and a biopsy failed to rule out cancer so I had half my thyroid removed 3 months before diagnosis of diabetes. And for a long time I blamed that for my diagnosis. However I have found a number of blood glucose results from before this showing levels that should have been investigated but were not. Tsh T4 and even once T3 have been tested and remain “normal” even if not optimal. Awaiting the results of the check last week.

 

[HSSS]

But for some ketosis is only achievable through extremely low carb eating so it may well be that 20g of carbs per day or less is your limit?
It may always have been so if you haven't ever got there then maybe that's why remission hasn't come yet.
Maybe try an extended fast for a few days and see what occurs? Just a thought.

Ketone meter did say I was in ketosis. I’ve tried longer fasting without success in the past. 18hrs is about my limit. There’s no way I’m going to attempt longer at present, especially when I’m no longer in ketosis or fat adapted.

 

[HSSS]

Why aren't you on the diabetic register?
Your dsn can't do any referrals, your GP can!
And your doctor can suggest other tests!
Ask for a GP appointment, tell your surgery, you need to speak to him in confidence!
And go from there!
You should not have to go private! To get help of answers.
If you don't ask and ask and ask and ask again! They do have an obligation to give you an appointment without telling the phone operator. Or if your surgery had an econsult system, use that!

Keep safe,
Best wishes

I am on the diabetic register. Not sure why you thought I wasn’t. My gp’s aren’t interested. As far as they are concerned everything is normal and under control and I’m the nurse’s issue.

Just got my hba1c result. Well actually the NHS app has resulted it twice. 50 or 51mmol depending on which one I believe. So it’s up. And over the diagnostic threshold for the first time in nearly 4 yrs. but it could have been worse. Trouble is I don’t have anywhere near as many changes left to make as I did originally (as although I’ve been lax lately I’m still mostly avoiding most carbs so there’s less differential).

 

[Lamont D]

I am on the diabetic register. Not sure why you thought I wasn’t. My gp’s aren’t interested. As far as they are concerned everything is normal and under control and I’m the nurse’s issue.

Just got my hba1c result. Well actually the NHS app has resulted it twice. 50 or 51mmol depending on which one I believe. So it’s up. And over the diagnostic threshold for the first time in nearly 4 yrs. but it could have been worse. Trouble is I don’t have anywhere near as many changes left to make as I did originally (as although I’ve been lax lately I’m still mostly avoiding most carbs so there’s less differential).

I apologise for my error, if you are on the register, one of the benefits is free prescription and you as well as a dsn, have a way in to expect an appointment and review from your GP.
I do usually advise a food diary detailing readings before and after meals and the more details the better, this will help understand why certain foods, not only carbs and sugars can effect your blood glucose control!
Don't stop believing it cannot be changed or to get you back on track!
Without re-reading your posts I can only ask, if you are in ketosis long enough to make you feel that you are making a difference?. If you are going in and out of keto, this might be what can happen, you are more anxious, weight gain blood glucose levels rise and if your b!old levels are going up and down constantly, your hba1c levels will show that!

Be kind to yourself and get that appointment, it is your health and not your dsns! ,she will not know what we know!
And your GP has an obligation for your health!
I know, that was my battle over a decade ago!

Best wishes.

 

[Ronancastled]

@HSSS I feel what your going through, running out of road is one of my fears for the future too.

I'm as close to being fully reversed as any you read on here and I don't know why exactly.
My BMI is still obese, 32, yet my BG is sub-normal while eating 150-200gs carbs per day.
If I knew how it happened so easily I would share it with the world.
Like you my A1c was only 52 at diagnosis.
Losing weight and walking the dog flicked a switch in me.

I read many T2s posts where they eat keto, HIT and cardio for over an hour a day, BMI in the low 20s and zero cheats, that is phenomenal and something I could never do.

You have done everything right but aren't getting the results you deserve and that's not your fault. If I were you I'd be getting my insulin levels checked and then consider Met to help with the resistance. It may be the only drug you ever take, my Endo said he'd put it in the water supply if he could.

Good luck

 

[HSSS]

I apologise for my error, if you are on the register, one of the benefits is free prescription and you as well as a dsn, have a way in to expect an appointment and review from your GP.
I do usually advise a food diary detailing readings before and after meals and the more details the better, this will help understand why certain foods, not only carbs and sugars can effect your blood glucose control!
Don't stop believing it cannot be changed or to get you back on track!
Without re-reading your posts I can only ask, if you are in ketosis long enough to make you feel that you are making a difference?. If you are going in and out of keto, this might be what can happen, you are more anxious, weight gain blood glucose levels rise and if your b!old levels are going up and down constantly, your hba1c levels will show that!

Be kind to yourself and get that appointment, it is your health and not your dsns! ,she will not know what we know!
And your GP has an obligation for your health!
I know, that was my battle over a decade ago!

Best wishes.

I don’t get free prescriptions and gp’s have nothing to do with diabetes in my practice. I’ve been told I’m well controlled, there’s nothing to investigate and to go away (more politely but that’s the essence of it). The drs at my surgery I’ve experienced are very traditional in their diabetes policies.

I apologise for being blunt here but I’m not new to to the advice you’re giving, in fact have offered it myself many a time. The weight gain and lesser control is recent, I know what to do and just need to get the right headspace. I’ve apparently confused the discussion on this thread by discussing past frustrations at getting stuck when control, carbs, weight etc are all good and seeking explanations why this is (my main point) with current difficulties (that I am well aware of what caused it and what to do). To the extent I’m considering editing previous posts to clarify this.

 

[HSSS]

"remission of real normal" . In my experience the most destructive words are " If only" but your quote here comes close to it. If we were discussing cancer or similar chronic progressive condition, then remission means "in abeyance" i.e. is a pause in the progression but is not actually a cure. But in diabetes care the term takes on the synonym of Cure - permanent and forever. which is nonsense IMO. There is a myth cult among diabetics that remission means able to go back to the old ways of enjoying life before DX.

I prefer the term reversal which I picture as pulling back from the brink. I am in control and while I keep that control, I am reducing the chances of developing complications. I have had T2D for around 30 years now, and I and my GP are surprised at how well I have managed so far. But I am not cured. I am coping.

I actually agree entirely. I don’t seek or expect “cure” or to return the ways of old. (The last few months have accidentally proven even heading that way is not possible without repercussions, not that it was intentional)

I personally prefer “remission” for the very reasons you outline and feel “reversal” causes exactly the confusion you believe “remission” does. Semantics in this case. We agree on the goals and the realistic expectations, even if not the choice of words.

“Real normal” simply meant under 42mmol rather than under 48mmol.

 

[HSSS]

@HSSS I feel what your going through, running out of road is one of my fears for the future too.

I'm as close to being fully reversed as any you read on here and I don't know why exactly.
My BMI is still obese, 32, yet my BG is sub-normal while eating 150-200gs carbs per day.
If I knew how it happened so easily I would share it with the world.
Like you my A1c was only 52 at diagnosis.
Losing weight and walking the dog flicked a switch in me.

I read many T2s posts where they eat keto, HIT and cardio for over an hour a day, BMI in the low 20s and zero cheats, that is phenomenal and something I could never do.

You have done everything right but aren't getting the results you deserve and that's not your fault. If I were you I'd be getting my insulin levels checked and then consider Met to help with the resistance. It may be the only drug you ever take, my Endo said he'd put it in the water supply if he could.

Good luck

I guess you are a perfect example of my frustration and confusion. I know that sounds jealous and it probably is but I am extremely happy for you nonetheless. Rationally I know it’s not about what we “deserve”. It is simply what is.

But after 3+yrs of good efforts I’d thought my insulin resistance would have lessened at least somewhat. Enough that continued control efforts would resulted in normal levels, even if underlying disease meant these measures have to be strictly maintain to continue those results. So apparently for me it didn’t reduce sufficiently in those years to reach sub 42mmol more than briefly.

What I’d love to understand and is my entire question on this thread is “why not?”. It also seems for my own sanity if nothing else I need to get these insulin/cpeptide levels checked and either identify an issue or stop me blaming that and get on with the reality of needing even more effort than I’ve been able to give thus far as they seem the only two avenues to head down.

 

[oldgreymare]

I am on the diabetic register. Not sure why you thought I wasn’t. My gp’s aren’t interested. As far as they are concerned everything is normal and under control and I’m the nurse’s issue.

Just got my hba1c result. Well actually the NHS app has resulted it twice. 50 or 51mmol depending on which one I believe. So it’s up. And over the diagnostic threshold for the first time in nearly 4 yrs. but it could have been worse. Trouble is I don’t have anywhere near as many changes left to make as I did originally (as although I’ve been lax lately I’m still mostly avoiding most carbs so there’s less differential).

So sorry to hear that you are struggling at the moment. Extra stress, anxiety, depression, etc can on their own raise your BG levels and may have contributed as well to your latest HbAC1 result. @Oldvatr has beaten me to it, but a factor to consider is that on low carb & keto diets your liver will be producing glucose from metabolising protein. As a Type 1 injecting insulin I definitely find that I need to use extra insulin to account for protein in my diet. When you feel ready to return to a stricter low carb regime, perhaps consider reducing the protein amounts but add extra healthy fats (but not seed oils!) so that you are not starving yourself.

 

[Andydragon]

So according to the wisdom on this forum (and following another thread I didn’t want to derail) we tell people their hba1c and their morning fasting levels will continue to drop over time until they reach normal levels (sub 40mmol and into the 4’s respectively) if they just stick with low carb long enough and low enough and possibly lose excess weight. That their insulin resistance will return over time, often quoted as within a year, sometimes less.

So what are the explanations if that doesn’t happen?

When you got diagnosed despite already not eating many carbs compared to “normal” and were only a bit overweight. When you’ve gone keto for 3 yrs? Lost over 2 stone and are well within normal bmi? Weren’t even that high (in the 50’s) at diagnosis so presumably not extremely resistant in the first place? Are regularly intermittently fasting. That understands what is required and the science etc etc. And are simply stuck in the prediabetic range? Surely that’s low enough and long enough?

Yes I acknowledge, fully, any improvement is beneficial. I’m a huge believer in low carb and spreading the word. That is not my point here. It’s the assumption that it will always work as well for everyone as it has for you if you only do it “properly” for long enough. Sounds just like the old calories argument and blaming the patient for not doing it “right”. So again my question is why doesn’t it work fully for us all even if we do it “right”? I’m not looking for sympathy or even motivation, just some good solid scientific possibilities/options.

Sometimes I feel we are setting some people up for disappointment and frustration.


EDIT
** The following is not what i wish to discuss here but the end result of the frustration I explained above. It’s not the sole reason but that least part of it. I know what’s required at the present time (lower carbs, evict **** from the diet, monitor etc etc) . I’m still confused why if didn’t work fully previously and fearful it won’t again this time hence I include it**

For me in the last 6 months those previous 3 yrs frustration (along with other factors) has resulted in a definite decline in control/eating habits/weight management. I’m awaiting hba1c results now to see how badly. The scales tell me it won’t be good. And I now need to get my “better than nothing” head back on even if I never achieve “normal”

I am not the only one who reports this happening to them though we seem to be a small minority.

I’m sorry to hear of your struggles but I don’t believe that there is ever a guarantee of remission and/or optimal sub 4 readings. We are all different and it’s clear I think from our own individual experiences that what works for sone isn’t the same for others. I’ve lost the weight and am pretty healthy compared to where I was and I am nowhere near sub 4 levels. Eat a pasty and my blood will be significant, I’m well over 2 years on the path and I don’t see any sign of my carb tolerances changing much

you say you have fallen off the wagon a bit so maybe that slight elevation in hba1c isn’t unexpected.

Sometimes it just doesn’t work, there may well be some who reflect their own experiences as if it is the cure all but I suspect the vast majority whilst hopefully getting some improvement don’t reverse in the same way.

as to your question, there is in my opinion no answer. Human bodies are unique, maybe the length of time being diabetic causes some form of damage that’s irreversible. Maybe some people are T2 due to weight (so a crash diet works) others due to carb intolerance. Maybe there are many different types of T2 bundled together. Some people are misdiagnosed T1 or not

If it was that simple there wouldn’t be different approaches I guess.

it is frustrating to see some who seem able to eat much more carbs and be fine, others are much less tolerant. Sone May disagree with me, so be it. I just think one size doesn’t fit all

 

[Andydragon]

I apologise for my error, if you are on the register, one of the benefits is free prescription and you as well as a dsn, have a way in to expect an appointment and review from your GP.
I do usually advise a food diary detailing readings before and after meals and the more details the better, this will help understand why certain foods, not only carbs and sugars can effect your blood glucose control!
Don't stop believing it cannot be changed or to get you back on track!
Without re-reading your posts I can only ask, if you are in ketosis long enough to make you feel that you are making a difference?. If you are going in and out of keto, this might be what can happen, you are more anxious, weight gain blood glucose levels rise and if your b!old levels are going up and down constantly, your hba1c levels will show that!

Be kind to yourself and get that appointment, it is your health and not your dsns! ,she will not know what we know!
And your GP has an obligation for your health!
I know, that was my battle over a decade ago!

Best wishes.

Not to distract thread but a correction. You are only on free prescriptions if you are on diabetic medication. Being on any register doesn’t give that. I still have my exemption but at the end of this year if I continue on diet controlled I will no longer be eligible. I do remain on the register and continue to have the regular diabetic checks which is good as I do continue to have lingering issues