Why might we get stuck?

[HSSS]

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.

 

[Mrs HJG]

Hi @HSSS have you ever had your C-peptide and GAD tested? I only ask as I am still on that road to diagnosis and having read sooooooo much while waiting, there are a scarily high number of people diagnosed as T2 who are in fact T1/LADA. I was 'lucky' having those tests quickly before I knew anything but as I am not on insulin-dependent, and by doing all the low carb/exercise things recommended for T2s which seem to be working, to the uneducated eye I am T2.

If the hospital team hadn't had a pang of questioning my initial T1 diagnosis, I would not have been tested, and as all 3 antibodies are positive, I hope that I can carry on as I am for a long time before needing insulin again. Maybe you've been honeymooning?

Obviously my newbie thoughts might have gone through your head years ago; I just hate seeing anyone feeling like you are and can't help myself wanting to say something, sorry if that's unhelpful.

 

[In Response]

Don't forget that one reason why we may get "stuck' is that we may be misdiagnosed and have the wrong treatment.
I think I read something like 30% of adults diagnosed with Type 1 diabetes were initially misdiagnosed as type 2.
We do not have to have expensive c-Peptide or GAD blood tests to be correctly diagnosed although it helps.

 

[HSSS]

I have considered LADA. But it seems unlikely, for me at least

It’s not that low carb didn’t work but that it didn’t work “enough”. I do seem more like a “typical” type 2 than type 1/LADA as lean hasn’t ever really applied and with my lessened control weight has gone up not down. I don’t have any autoimmune diagnoses (other than mild guttae psoriasis that started after diabetes did) but have had several suggested as subclinical over the years then disregarded. I never had other metabolic markers like high blood pressure (usually lowish in fact) or triglycerides etc but my ldl is and always has been just a little higher than they like, as have almost every member of my family’s been. It’s also coming up to 4 yrs since diagnosed so it’s seems likely that levels by now would be higher than I experience, even now despite low carbing only most of the time even now. Right now (as in the last 6 months) it’s hard to say what’s attributable to my lessened efforts and and what’s deterioration. I suspect the former.

I realised the best way to rule it out would be antibodies and c peptide but also acknowledge there’s not a hope in hell of getting them via my GP as they consider my control “excellent” as I’ve always been under the magic 48mmol (we’ll see next week if that remains true). Having just lost my job, ironically due to the pandemic now being ignored and life going back to normal for most, paying for it privately will be challenging unless anyone knows the best/cheapest options there. I also recognise even those tests aren’t always conclusive one way other other.

I do believe type 2 is a whole host of variants - and whilst many respond well to dietary control a few are more stubborn and perhaps have other factors restricting ability to fully reverse it.

 

[Goonergal]

@HSSS I think the answer is ‘it’s not an exact science’.

Diagnosis and monitoring of type 2 is most often based on an HbA1c.

Insulin resistance is assumed, but rarely, if ever, measured by the NHS and I haven’t seen many here testing it privately. Home blood glucose monitoring measures levels at a point in time; those using the Libre or other CGM devices are measuring using interstitial fluid, not blood.

So even assuming that HbA1c tests are infallible (and we know there are many reasons that they may read either falsely high or low), they do not show whether insulin resistance has changed. Weight / waist circumference is often used as a proxy for that, being markers for metabolic health, but even then they are not infallible.

I think it comes down to setting your own goals and targets and working with those.

Incidentally, I don’t share the view that forum members promote 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’. There are many who are evangelical (including me), but it is very widely recognised that there are many differences for individuals.

 

[sgm14]

It sounds to me that low-carb was working for you in that it was keeping your diabetes under control, but you were expecting a complete cure and you have now given up - a case of The perfect being the enemy of the good.

What difference would it make it if you were not diagnosed as Type 2? You would probably just give up your expectation of a complete cure and use low-carb to try to control your diabetes.

I'm officially diagnosed as type 2 and am on insulin and my carb intake is usually less than 100 per day as the less carbs I eat, the more I can manage my blood sugars, but I am not ultra-low carb and I don't believe that every single Type 2 can be cured. (And yes I know there are some that would say that I can not possibly be Type 2, but to be honest if my doctor was to change some entry in my medical records to say I was type 1 or Lada, then I don't think it would change anything for me)

Everyone is different. That is becoming one of my mantras, but the more I learn about diabetes, the more I believe it.

 

[Daibell]

It sounds like you have underperforming beta cells for whatever reason but not enough to move you right into the T1/LADA range. You may stay like that for years or gradually have more fail like I have over several years. I think watchful waiting applies

 

[Lamont D]

I am sympathetic to your circumstances, having been in a similar situation with work, misdiagnosis and weight gain due to the pandemic! If you add in depression and anxiety, it is very difficult to stay on track and there is a similarity that my fasting and hba1c levels are within normal levels.
It does seem to me that anxiety about your circumstances is uppermost in your thoughts, and awaiting results, this could be part of the symptoms you are feeling, I have read your posts and there has always something nagging that it is more complex than just T2, what? I have no idea, but because of that I do believe a proper round of tests, including c-peptide, Gad, possibly insulin levels, most certainly a diagnostic review!
The only other thing I can suggest is maybe, you're eating too much, it could be something your intolerant to, that you are unaware of!

Take it easy on yourself, and maybe you are worrying needlessly, but I get it!

Take care!

 

[Mrs HJG]

I do not understand why the GAD tests are always talked about as expensive, Exeter charge £29.04 for all three antibody tests, there is no price on the the C-peptide but doctors dish out other blood tests and way more expensive prescription items without all the fuss. I know the request has to come via a hospital consultant not GP, but, if, as you suspect, your HbA1c has increased this could be your lead in; don't mention the change of diet and expected result @HSSS ?

@sgm14 I suppose it depends where you live, but the team responsible is different depending on your diabetes label where I live, surgery Diabetes Nurse for T2, hospital with consultants for T1, and all the relevant banghead support. If you are T1 you will be entitled for CGM consideration (more so come April fingers crossed), no chance as a T2; maybe medical items like lateral flow tests will remain free for T1s but not T2s, (hopefully free for all those with medical prescription exemption, but who knows?), things like correctly informing my employer, or being eligible for research or trials and maybe other things I have not come across yet. I want to be on the right list.

The current day to day treatment may well remain unchanged no matter what your label, but other things, you may in future be grateful for, may depend on your correct diagnosis. I also feel like a complete and utter berk saying I am diabetic but don't know what type I am

 

[MrsA2]

With you on this on @HSSS

I think there is still more to be learned. I don't think all carbs are the same, just as all calories are not the same. Why does 10g of carbs from potato (a natural simple food) raise my bg every time, whereas 10g from an apple (a natural simple food) not spike me nearly so much?
I'm sure a lot depends on what we have eaten in the past - there's even a school of thought that what our mothers ate may have had an impact - and on our individual metabolism and gut health.

Like you, I'm due an hba1c but with fbg over 6 most days the result could be anything.

Also, the weariness and depression you mention are part of the reason why for years doctors have said its progressive and not controllable. Maybe better support in a variety of ways especially emotionally would help us all.

I just hold out hope with so many being diagnosed, and so much research being done, that giant steps forward will be made, and not just in our lifetime, but in the next couple of years. Just look at how fast things have moved in the past 5- 10 years, and hold out hope!

Will read other answers with interest. Thank you for starting this thread

 

[HSSS]

It sounds to me that low-carb was working for you in that it was keeping your diabetes under control, but you were expecting a complete cure and you have now given up - a case of The perfect being the enemy of the good.

What difference would it make it if you were not diagnosed as Type 2? You would probably just give up your expectation of a complete cure and use low-carb to try to control your diabetes.

I'm officially diagnosed as type 2 and am on insulin and my carb intake is usually less than 100 per day as the less carbs I eat, the more I can manage my blood sugars, but I am not ultra-low carb and I don't believe that every single Type 2 can be cured. (And yes I know there are some that would say that I can not possibly be Type 2, but to be honest if my doctor was to change some entry in my medical records to say I was type 1 or Lada, then I don't think it would change anything for me)

Everyone is different. That is becoming one of my mantras, but the more I learn about diabetes, the more I believe it.

Not quite true. Yes it kept it under control, but I hoped for full remission (not cure as I don’t believe any of us are cured!) as in non diabetic levels rather than prediabetic. I have not given up. I’ve struggled recently and not solely from this reason as I said but it is one factor.

I don’t understand your point about diagnosis. If I wasn’t diagnosed I wouldn’t have gone keto/low carb and therefore wouldn’t be controlling it at all. And I’m still almost always below 100g a day and consider that a fair few carbs. When I was under my best control it was more like 30-40g. I don’t want to end up on insulin unless I no longer produce my own as I consider that counter productive long term. I accept the only way I’ll know that is to have it tested but most type 2 still do, especially in the earlier years/decades.

My point is a fair few (not all) regular posters act as if perseverance is the entire answer and it’s not.

 

[HSSS]

I am sympathetic to your circumstances, having been in a similar situation with work, misdiagnosis and weight gain due to the pandemic! If you add in depression and anxiety, it is very difficult to stay on track and there is a similarity that my fasting and hba1c levels are within normal levels.
It does seem to me that anxiety about your circumstances is uppermost in your thoughts, and awaiting results, this could be part of the symptoms you are feeling, I have read your posts and there has always something nagging that it is more complex than just T2, what? I have no idea, but because of that I do believe a proper round of tests, including c-peptide, Gad, possibly insulin levels, most certainly a diagnostic review!
The only other thing I can suggest is maybe, you're eating too much, it could be something your intolerant to, that you are unaware of!

Take it easy on yourself, and maybe you are worrying needlessly, but I get it!

Take care!

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.

 

[HSSS]

I do not understand why the GAD tests are always talked about as expensive, Exeter charge £29.04 for all three antibody tests, there is no price on the the C-peptide but doctors dish out other blood tests and way more expensive prescription items without all the fuss. I know the request has to come via a hospital consultant not GP, but, if, as you suspect, your HbA1c has increased this could be your lead in; don't mention the change of diet and expected result @HSSS ?

@sgm14 I suppose it depends where you live, but the team responsible is different depending on your diabetes label where I live, surgery Diabetes Nurse for T2, hospital with consultants for T1, and all the relevant banghead support. If you are T1 you will be entitled for CGM consideration (more so come April fingers crossed), no chance as a T2; maybe medical items like lateral flow tests will remain free for T1s but not T2s, (hopefully free for all those with medical prescription exemption, but who knows?), things like correctly informing my employer, or being eligible for research or trials and maybe other things I have not come across yet. I want to be on the right list.

The current day to day treatment may well remain unchanged no matter what your label, but other things, you may in future be grateful for, may depend on your correct diagnosis. I also feel like a complete and utter berk saying I am diabetic but don't know what type I am

yes if it’s a significant change I will ask but i suspect the weight gain, they do know about, will negate any serious consideration of my request.

Totally agree an accurate diagnosis is important for many reasons. You are not a berk for not knowing. The system is for not fully investigating you.

As a type 2 so far controlled by diet not medication we don’t get a medical exemption for prescriptions so wouldn’t get the LFT option either IF that happens. Maybe that’s one reason to take a small metformin prescription……..

 

[Mrs HJG]

As a type 2 so far controlled by diet not medication we don’t get a medical exemption for prescriptions so wouldn’t get the LFT option either IF that happens. Maybe that’s one reason to take a small metformin prescription……..

I'd definitely ask if you can try to take even one Metformin a day so you get the exemption, even if it disagrees with you and you only take it twice, you won't know until you try, and I believe the exemption lasts 5 years even if you get re-diagnosed/stop medication in that period.

If they agree to trying, fill in the exemption form there and then and get them to give you a photocopy even if not signed by the doctor, and the chemist should accept it and not charge you, with a warming that you'll get a fine if your application is not received in the next month or so.

You never know, a little Metformin might make that bit of difference to your BG. I take 2g and am not convinced I need to be on that much, but reading about all the other benefits of it, I would be happy to cut to halve, and see what happens but I wouldn't want to come off it completely.

Good luck

 

[Oldvatr]

I think Remisssion for T2D is overhyped. The NHS only recognises two routes to Remission, One is bariatric surgery, the other is a diet that mimics that procedure.

There are 3 different trchniques used in Bariatric surgery. Two turn out to be useless for diabetes control, and only the expensive Roux -Y procedure gives some chance of diabetes control. But even this technique is not foolproof. It is permanent, but the effects on blood sugar apparently are not and sugar creep sets in quite quickly.

The old NHS guidelines used to recommend diets like Eatwell and Mediterranean could give remission if used early enough after diagnosis, but the success rate was quite low. More recently the Newcastle Diet study showed that a very low calorie, low fat diet could mimic the bariatric surgery, but only in about half of the people who completed the 8 weeks course and lost shedloads of weight. It is no guarantee, and also we have respondents here who were initially successful, but who found out that th results were not permanent. There are some here who have repeated it again in the hope it would stick, but sadly it seems that does not work either.

Many of us have used Low Carb healthy Fat diet with some success, but again there is no guarantee of remission. I have done this for 8 years now, and I did manage to get to the stage where two doctors declared me clinically in Remission, but I soon lapsed back to Resolved and put back onto a lowish dose of medication.

So you should ask yourself - Does the Holy grail exist? Is it just a click of the fingers or wiggle of the nose away? Or is it, as I have discovered myself, down to finding a good and reasonable way to control the condition. It is not perfect by any means., but workable. And I get my prescriptions free. Even my other meds for comorbidities are free too. So I ain't complaining.

At least I know now that my beta cells are functioning, and my insulin resistance was improved by LCHF and I don't need to go keto since my BMI is now 21 and remains 21 almost constantly without needing adjustment. I consider myself to be lucky to be diabetic . It could have been worse!!!!!!

Last night I had a jumbo battered cod to myself (after fighting the cat for it) and my bgl rose less than 2 mmol/l even with all that lovely batter and oodles of ketchup too. (sorry, TMI)

 

[HSSS]

I think Remisssion for T2D is overhyped. The NHS only recognises two routes to Remission, One is bariatric surgery, the other is a diet that mimics that procedure……..The old NHS guidelines used to recommend diets like Eatwell and Mediterranean could give remission if used early enough after diagnosis, but the success rate was quite low. …..Many of us have used Low Carb healthy Fat diet with some success, but again there is no guarantee of remission. So you should ask yourself - Does the Holy grail exist?

It is not perfect by any means., but workable. And I get my prescriptions free. Even my other meds for comorbidities are free too. So I ain't complaining.

At least I know now that my beta cells are functioning, and my insulin resistance was improved by LCHF

Last night I had a jumbo battered cod to myself (after fighting the cat for it) and my bgl rose less than 2 mmol/l even with all that lovely batter and oodles of ketchup too. (sorry, TMI)

and before the nhs investigated they said it wasn’t possible to reverse/put type 2 into remission. And the nhs really hasn’t investigated or accepted low carb yet. I do believe they will, and are currently beginning to do so. They do now support low carb programs in many areas and are even prescribing it in some. That doesn’t make it a holy grail or a guarantee but it does make it viable for many.

I think it important here to say that whilst I’m struggling and hit a stall point even before that, low carb has worked for many others here to achieve remission. My issue isn’t doubt that it works for those and will for many more. Just that it sometimes feels like some appear believe any failure to achieve remission is down to not trying hard enough or long enough and it will always happen if you just keep going at it.

As I said above management to prediabetic levels is better than full on diabetic ones. I don’t get or need the free prescriptions as I am lucky enough to be free of other conditions requiring medications, so far, so they are not a motivation factor for me. Good health however is.

How do we know for sure without the specialised tests our IR has improved or what our beta cells are doing? Sure bgl after a reasonable dose of carbs are a reasonable guess, other markers like trigs are suggestive but not conclusive, especially if we don’t know any baselines at diagnosis. If my beta cells and body cells all worked just fine I wouldn’t be diabetic so something is still dysfunctional in there somewhere

I haven’t tested battered fish as it’s never been a thing for me anyway but I very much doubt the rise would be that small.

Wow. What a mass of contradictory beliefs I seem to hold today.

 

[bulkbiker]

And I’m still almost always below 100g a day and consider that a fair few carbs. When I was under my best control it was more like 30-40g.

I think you have answered your own question here.

When you were likely in ketosis your results were better..

Looks like 100g of carbs daily is just too many for you.

Have you tried skipping a meal or maybe a week of meat/fish only to see what happens to your blood sugars?
Might be a worthwhile experiment.

 

[sgm14]

I don’t understand your point about diagnosis. If I wasn’t diagnosed I wouldn’t have gone keto/low carb ...

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.

My point is a fair few (not all) regular posters act as if perseverance is the entire answer and it’s not.

That I can certain agree with.

 

[sgm14]

@sgm14 I suppose it depends where you live, but the team responsible is different depending on your diabetes label where I live, surgery Diabetes Nurse for T2, hospital with consultants for T1, and all the relevant banghead support. If you are T1 you will be entitled for CGM consideration (more so come April fingers crossed), no chance as a T2; maybe medical items like lateral flow tests will remain free for T1s but not T2s, (hopefully free for all those with medical prescription exemption, but who knows?), things like correctly informing my employer, or being eligible for research or trials and maybe other things I have not come across yet. I want to be on the right list.

Yeah, I fully realise that I am lucky that way, but I mostly understand what you are saying. I didn't really mean to generalise the question, but was only asking the question with regards to what you expect from a low-carb diet.

the relevant banghead support.

? Can't figure out what that means!

 

[HSSS]

I think you have answered your own question here.

When you were likely in ketosis your results were better..

Looks like 100g of carbs daily is just too many for you.

Have you tried skipping a meal or maybe a week of meat/fish only to see what happens to your blood sugars?
Might be a worthwhile experiment.

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.