Can you survive long term as low carb but NOT in ketosis?

[Antje77]

How the problem can be insufficient insulin when that shows I produce a normal amount

The 'normal range' is a very wide range.
If your individual body needs a bit more than the average, a normal amount can be insufficient.

I had been on insulin for two years already when I had my only C-peptide test. Insulin doses are based on blood glucose combined with carb intake, not on how much insulin I produce.

 

[AloeSvea]

Hi @Vectian. Fatigue is a debilitating, as you say, possible complication of all the types of diabetes, from my understanding, for different reasons. Because it's about energy when it comes down to it, at cell level, and what is happening to us in the various complex cycles due to the type of diabetes you have, and how it plays out for you individually. I'm pleased there are plenty on this Forum who are experts in how LADA is experienced.

Because this is in a Low-carb diet sub-forum I thought it important to add something, as so many people with diabetes have type two, and low-carb ways of eating, including Keto, can be/is a go-to treatment. Lots of scientific studies backing this up etc etc. (Whether one chooses this treatment or not - that's another story.)

Fatigue, as one of the complications, doesn't happen to everyone. I haven't experienced it due to diabetes , and whilst on longterm LCHF and sometimes Keto. Now I have quite recently due to pain relief meds and a non-diabetes related condition - and - oh boy do I know what you mean by debilitating! Ghastly side effect of a medication, but that's another and non-diabetes story from me.

I have experienced lack of energy due to not eating/fasting. Which would fit in with above posters wondering if your way of eating is contributing, and being unknowingly undernourished? (Which sounded very plausible on reading.) It felt different to what I am experiencing these days due to meds side effect. The big difference, as posters above referred to - eating food immediately ameliorated it! (Not true for me with it being a side effect of meds.)

I was under the impression that fatigue was a common symptom of having auto-immune diabetes? LADA folk step in and say!

As other posters are saying above - it's the early stages of switching to a lower carb way of eating, and probably eating more wholefoods and not UPF, that causes something called 'keto flu'. You can also explain it as withdrawal from addictive food substances, which I think there is a definite case for this explanation. Even if it 'just' from sugar and sweeteners, but it probably includes other addictive substances also that aren't really 'food' other than we eat them as part of the modern diet. (I'm reading a lot about Ultra Processed Food at the mo'.) For me 'keto flu' felt much more like withdrawal, and big changes in my gut biome and digestion, and it wasn't about fatigue. If I am remembering correctly (10 years ago.) As this is also about the health and state of one's gut biome and it's affect on our energy - one can see how it plays out differently for different individuals.

 

[Antje77]

I was under the impression that fatigue was a common symptom of having auto-immune diabetes? LADA folk step in and say!

I can only speak for myself of course.
For myself, I've only experienced diabetes related fatigue in the period leading up to diagnosis, and while learning to adjust my insulin, in other words when I was regularly having high BG.
Feeling fatigued when not eating enough is very common of course, but not related to diabetes of whatever type.

LADA/T1 simply means your pancreas doesn't produce enough insulin, so if you can supplement the insulin you're not producing in exactly the right amount at exactly the right time, you shouldn't have symptoms. In an ideal world that is.
In real life, getting it just right just isn't happening all of the time. For me, low carb makes it easier to dose, others prefer a more standard diet and make it work.
Neither approach typically causes fatigue if you get it mostly right, of course provided you eat enough.

 

[Vectian]

Hi @Vectian. Fatigue is a debilitating, as you say, possible complication of all the types of diabetes, from my understanding, for different reasons. Because it's about energy when it comes down to it, at cell level, and what is happening to us in the various complex cycles due to the type of diabetes you have, and how it plays out for you individually. I'm pleased there are plenty on this Forum who are experts in how LADA is experienced.

Because this is in a Low-carb diet sub-forum I thought it important to add something, as so many people with diabetes have type two, and low-carb ways of eating, including Keto, can be/is a go-to treatment. Lots of scientific studies backing this up etc etc. (Whether one chooses this treatment or not - that's another story.)

Fatigue, as one of the complications, doesn't happen to everyone. I haven't experienced it due to diabetes , and whilst on longterm LCHF and sometimes Keto. Now I have quite recently due to pain relief meds and a non-diabetes related condition - and - oh boy do I know what you mean by debilitating! Ghastly side effect of a medication, but that's another and non-diabetes story from me.

I have experienced lack of energy due to not eating/fasting. Which would fit in with above posters wondering if your way of eating is contributing, and being unknowingly undernourished? (Which sounded very plausible on reading.) It felt different to what I am experiencing these days due to meds side effect. The big difference, as posters above referred to - eating food immediately ameliorated it! (Not true for me with it being a side effect of meds.)

I was under the impression that fatigue was a common symptom of having auto-immune diabetes? LADA folk step in and say!

As other posters are saying above - it's the early stages of switching to a lower carb way of eating, and probably eating more wholefoods and not UPF, that causes something called 'keto flu'. You can also explain it as withdrawal from addictive food substances, which I think there is a definite case for this explanation. Even if it 'just' from sugar and sweeteners, but it probably includes other addictive substances also that aren't really 'food' other than we eat them as part of the modern diet. (I'm reading a lot about Ultra Processed Food at the mo'.) For me 'keto flu' felt much more like withdrawal, and big changes in my gut biome and digestion, and it wasn't about fatigue. If I am remembering correctly (10 years ago.) As this is also about the health and state of one's gut biome and it's affect on our energy - one can see how it plays out differently for different individuals.

I was thinking that I might be on the borderline of ketosis a lot of the time (as I often have around 50-60g carbs a day) and so continually experiencing keto flu. However I did a ketone test the other day when I was feeling weak, and it was 0.3 so nowhere near ketosis. I have come to the conclusion that it's a lack of glycogen stores, what I am eating provides just enough glucose (or not quite enough) to cover the day's energy needs, but not enough to store any glycogen, so after not eating for a while it gets depleted quickly hence the weakness and fatigue as there is no fuel for muscles etc. I don't want to do keto and that would also be very difficult as I don't eat meat and so not sustainable long term.

Yesterday I ate something with more simple carbs than usual (filo pastry) and felt a definite improvement. The problem is having more carbs means blood sugar going higher, but maybe I need to take the hit on my averages in order to get by. All very well having great numbers but if you are struggling to get through the day sometimes quality of life suffers quite a bit. Maybe some people can manage on that level of low carb for years and maybe I can't, not because of willpower but because it seems my body can't function long term, it has been 6 months now. Trying to stay as long as possible off medications as well.

 

[AloeSvea]

@Vectian, I'm a bit confused. When you say off meds do you mean insulin?

I hope you don't mind me asking questions, because your kind of diabetes is out of my expertise range, if I can say such a thing. And by participating in this thread I am learning a lot about LADA. (So as long as you LADAs don't mind...)

 

[Vectian]

@Vectian, I'm a bit confused. When you say off meds do you mean insulin?

I hope you don't mind me asking questions, because your kind of diabetes is out of my expertise range, if I can say such a thing. And by participating in this thread I am learning a lot about LADA. (So as long as you LADAs don't mind...)

It wasn't clear at first whether I had type 1 or 2, it's still not 100% but seems most likely LADA. I was put on insulin whilst waiting for test results, which would take 6 weeks. After 4 weeks I decided to stop insulin as it was making me feel very ill, and I have been on no medication at all for almost 6 months. Which is pretty unusual, but I was able to get my A1C from 97 to 36 in 4 and a half months through diet and exercise. It's frustrating because I could sustain the diet in terms of willpower, it just seems that I can't function properly on that level of carbs.

 

[AloeSvea]

It wasn't clear at first whether I had type 1 or 2, it's still not 100% but seems most likely LADA. I was put on insulin whilst waiting for test results, which would take 6 weeks. After 4 weeks I decided to stop insulin as it was making me feel very ill, and I have been on no medication at all for almost 6 months. Which is pretty unusual, but I was able to get my A1C from 97 to 36 in 4 and a half months through diet and exercise. It's frustrating because I could sustain the diet in terms of willpower, it just seems that I can't function properly on that level of carbs.

Ah OK! I had to look up GAD antibodies, and incidence with diabetes re which type of diabetes, and I see that 8% of type two folk have GAD antibodies, with the type two. Goodness! No wonder I got confused. But that might be your situation? As you are not on insulin and doing well, that may indicate such? (Again - this is LADA folks's area of expertise.)

When the Swedes use the Lund Uni terms they deal with this issue by the terms 'Severe Insulin Deficient Diabetes', and 'Severe AutoImmune Diabetes' (SIDD and SAID). But I take it you might have the auto immune antibodies due to something else other than the diabetes? (But unlikely? Is that what your medical professionals said?)

BTW, I seem to be the only person in this Brit Forum, and the American Forum who likes and uses the Lund Uni terms, and I know that some very nice folks in this Forum don't like the blunt Swedish use of the English word 'severe' . Thought I had better make this declaration.

 

[Antje77]

I had to look up GAD antibodies, and incidence with diabetes re which type of diabetes, and I see that 8% of type two folk have GAD antibodies, with the type two. Goodness! No wonder I got confused.

Do you have a link or source for this?
Usually, having diabetes plus having GAD antibodies means you get a T1 (autoimmune) diabetes diagnosis, so you're not the only one who is confused now.

 

[Vectian]

Ah OK! I had to look up GAD antibodies, and incidence with diabetes re which type of diabetes, and I see that 8% of type two folk have GAD antibodies, with the type two. Goodness! No wonder I got confused. But that might be your situation? As you are not on insulin and doing well, that may indicate such? (Again - this is LADA folks's area of expertise.)

When the Swedes use the Lund Uni terms they deal with this issue by the terms 'Severe Insulin Deficient Diabetes', and 'Severe AutoImmune Diabetes' (SIDD and SAID). But I take it you might have the auto immune antibodies due to something else other than the diabetes? (But unlikely? Is that what your medical professionals said?)

BTW, I seem to be the only person in this Brit Forum, and the American Forum who likes and uses the Lund Uni terms, and I know that some very nice folks in this Forum don't like the blunt Swedish use of the English word 'severe' . Thought I had better make this declaration.

Yes I would be interested to know the source of the 8% of type 2s have GAD antibodies. The only research I have found to say that you can be T2 but have GAD antibodies is this, which is an interesting point of view different to what the mainstream view is:

https://diabetesjournals.org/care/article/44/6/1243/138682/Latent-Autoimmune-Diabetes-of-Adults-LADA-Is

Basically saying that in older populations where T1 is much less common and T2 is as much as 95% of newly diagnosed diabetes, it's as likely or more likely that you are T2 with positive GAD than T1. And that the reason why LADA can seem to have features of T2 is because some people labelled as LADA actually are T2. Of course the reverse often happens as well. I contacted one of the researchers as this was the only paper I could find saying this, he said you can be T2 and have GAD antibodies. The NHS don't recognise that though, they say that if you have antibodies you are automatically T1. They don't like anything which doesn't follow the general trends or is more unusual.

What I don't understand about this is if the diabetes is not auto-immune, why are the GAD antibodies there? Surely they don't form for no reason. Yes there are other conditions with GAD antibodies but not diabetes, but seems to be very rare neurological conditions like stiff person syndrome. My consultant was at least honest enough to admit that there is still a lot that we don't know about all of this.

 

[Vectian]

Yes I would be interested to know the source of the 8% of type 2s have GAD antibodies. The only research I have found to say that you can be T2 but have GAD antibodies is this, which is an interesting point of view different to what the mainstream view is:

https://diabetesjournals.org/care/article/44/6/1243/138682/Latent-Autoimmune-Diabetes-of-Adults-LADA-Is

Basically saying that in older populations where T1 is much less common and T2 is as much as 95% of newly diagnosed diabetes, it's as likely or more likely that you are T2 with positive GAD than T1. And that the reason why LADA can seem to have features of T2 is because some people labelled as LADA actually are T2. Of course the reverse often happens as well. I contacted one of the researchers as this was the only paper I could find saying this, he said you can be T2 and have GAD antibodies. This was a question relevant to me, as my C peptide test was completely normal - normally LADA have some insulin function at the start but at the low end of normal range at least. The NHS don't recognise that though, they say that if you have antibodies you are automatically T1. They don't like anything which doesn't follow the general trends or is more unusual.

What I don't understand about this is if the diabetes is not auto-immune, why are the GAD antibodies there? Surely they don't form for no reason. Yes there are other conditions with GAD antibodies but not diabetes, but seems to be very rare neurological conditions like stiff person syndrome. My consultant was at least honest enough to admit that there is still a lot that we don't know about all of this.

 

[Antje77]

What I don't understand about this is if the diabetes is not auto-immune, why are the GAD antibodies there? Surely they don't form for no reason. Yes there are other conditions with GAD antibodies but not diabetes, but seems to be very rare neurological conditions like stiff person syndrome. My consultant was at least honest enough to admit that there is still a lot that we don't know about all of this.

From what I understand from the article, a small percentage of people without diabetes (or other autoimmune conditions) test positive for antibodies, GAD or ones for other conditions.
Now if they never develop the autoimmune condition they test positive for, those antibodies are irrelevant.

With diabetes, the older you get, the higher the chance of developing T2. And if you happen to be one of those who does have antibodies that aren't damaging your insulin production, and you develop T2, a false conclusion of T1 can easily happen.

Pretty interesting really, and it could explain why a very few people diagnosed as T1 based on antibodies can go without insulin for many, many years with dietary changes or typical T2 medication.

The article also says that in people where a diagnosis is not completely clear based on presentation and labwork, it can be worth doing a C-peptide test 3 to 5 years after diagnosis to see what their insulin production is doing.

For myself, this would be quite interesting. I tested negative for anti-GAD (no other antibodies were tested).
My T1 diagnosis was based on needing insulin very quickly after my initial diagnosis, it became clear within a month that low carb and glyclazide weren't enough to go below 10, ever and usually I saw numbers in the mid to high teens. I also had a C-peptide test two years after diagnosis, which came back as just below the low normal threshold.
This was enough for my endo to diagnose T1 with a small question mark, despite having features of T2 as well (I'm fat and likely have some insulin resistance).
I'm not going to ask for a retest though, I'm doing well on insulin and usually low carb, I already know that low carb plus gliclazide or metformin doesn't work for me, so it wouldn't change my treatment even if I still produced some insulin after 8 years.

 

[Vectian]

From what I understand from the article, a small percentage of people without diabetes (or other autoimmune conditions) test positive for antibodies, GAD or ones for other conditions.
Now if they never develop the autoimmune condition they test positive for, those antibodies are irrelevant.

With diabetes, the older you get, the higher the chance of developing T2. And if you happen to be one of those who does have antibodies that aren't damaging your insulin production, and you develop T2, a false conclusion of T1 can easily happen.

Pretty interesting really, and it could explain why a very few people diagnosed as T1 based on antibodies can go without insulin for many, many years with dietary changes or typical T2 medication.

The article also says that in people where a diagnosis is not completely clear based on presentation and labwork, it can be worth doing a C-peptide test 3 to 5 years after diagnosis to see what their insulin production is doing.

For myself, this would be quite interesting. I tested negative for anti-GAD (no other antibodies were tested).
My T1 diagnosis was based on needing insulin very quickly after my initial diagnosis, it became clear within a month that low carb and glyclazide weren't enough to go below 10, ever and usually I saw numbers in the mid to high teens. I also had a C-peptide test two years after diagnosis, which came back as just below the low normal threshold.
This was enough for my endo to diagnose T1 with a small question mark, despite having features of T2 as well (I'm fat and likely have some insulin resistance).
I'm not going to ask for a retest though, I'm doing well on insulin and usually low carb, I already know that low carb plus gliclazide or metformin doesn't work for me, so it wouldn't change my treatment even if I still produced some insulin after 8 years.

How odd that you would be classified as T1 despite having a negative antibody test. You could be positive for one or both of the other antibodies though if they weren't tested for. As I understand it T2s often have a high normal or above normal C peptide, so the low result fits with LADA/T1, I wonder if perhaps something else damaged your pancreas so that it isn't producing enough insulin, but not an auto-immune attack.

As you say, it doesn't matter massively if it doesn't change anything. I was getting stressed earlier on that I could be T2 and was being considered as T1, but then I thought the day to day management at this stage is the same anyway. Hopefully in time it will become clearer. I just don't get why the antibodies would be there if not part of an auto-immune process. My GAD result was high, although that doesn't necessarily mean a stronger attack.

 

[AloeSvea]

Well that was an interesting read! And - no wonder it can get a bit confusing sometimes! And I am really proud of us for dealing with this topic where, I imagine, many medical professionals even, have been and are afraid to tread! (As it were.)

I won't contribute my online search as the%- figure is better explained in above, and the ADA journal article - @Vectian, many thanks.

This explains poor ol actor Halle Berry's confusion, and the confused media-reportings back in the day, as her diabetes type has been surrounded with the false postives and changes in classification. (She actually copped a bit of s*** for it, although of course her fame and fortune protected her well I am sure!)

 

[Antje77]

How odd that you would be classified as T1 despite having a negative antibody test. You could be positive for one or both of the other antibodies though

For what it's worth, many, perhaps even most T1's are diagnosed without any antibody testing.
The average age of developing T1 is 24, and without an indication it could be something else than T1, T1 is the default diagnosis in young people and children. Their antibodies are hardly ever tested to decide on T1.

Antibody testing comes in only when type isn't clear from circumstances, and it can help a diagnosis but it can also muddle the waters. Negative antibodies, even if all known types are tested do not rule out T1.

 

[AloeSvea]

Oh! And, I keep meaning to simply answer the thread question - can you survive long term as low carb but not in ketosis -

YES! Carbohydrates are not essential for humans to eat to survive. Because the little glucose we need to fire up our brain, we can make ourselves without eating it, from fat and protein. It is in fact really important that this fact is said as often as necessary.

 

[Vectian]

Oh! And, I keep meaning to simply answer the thread question - can you survive long term as low carb but not in ketosis -

YES! Carbohydrates are not essential for humans to eat to survive. Because the little glucose we need to fire up our brain, we can make ourselves without eating it, from fat and protein. It is in fact really important that this fact is said as often as necessary.

The process you are describing there is ketosis though, my question was if you are not in ketosis, so the primary source of energy is glucose/carbs but you eat a lot less of it.

 

[Vectian]

For what it's worth, many, perhaps even most T1's are diagnosed without any antibody testing.
The average age of developing T1 is 24, and without an indication it could be something else than T1, T1 is the default diagnosis in young people and children. Their antibodies are hardly ever tested to decide on T1.

Antibody testing comes in only when type isn't clear from circumstances, and it can help a diagnosis but it can also muddle the waters. Negative antibodies, even if all known types are tested do not rule out T1.

This is partly what that paper is saying, it's very uncommon for a child to get T2 so it's far more likely it is T1. With an older population the reverse is true. I believe that at least c peptide is routinely measured at least which together with clinical signs should make it clear in most cases. I can't understand how you could be T1 with no antibodies, the autoimmune process is what defines it as T1 and if that isn't there?

 

[Antje77]

This is partly what that paper is saying, it's very uncommon for a child to get T2 so it's far more likely it is T1. With an older population the reverse is true. I believe that at least c peptide is routinely measured at least which together with clinical signs should make it clear in most cases. I can't understand how you could be T1 with no antibodies, the autoimmune process is what defines it as T1 and if that isn't there?

Sometimes antibodies can come and go, and I think in long term T1's they are often gone but correct me on that if I'm wrong.

There may also be antibodies as of yet unknown.

 

[AloeSvea]

The process you are describing there is ketosis though, my question was if you are not in ketosis, so the primary source of energy is glucose/carbs but you eat a lot less of it.

I got so used to the Forum-legendary Brunneria coming in at this stage, I realise I need to be a good student of hers and say - ketosis is a state that can be, is, gone in and out of, unless on a very low carb diet.

Otherwise it's a scale, a spectrum that one goes up and down, in and out of.

I know that just eating four or five blueberries can take me out of very-low carb enough diet for ketosis. Or a serving of peas with lamb chops. But still with the peas and the berries - it's a low carb way of eating. Low-carb itself is a spectrum. This is why I say "sometimes keto" . I have been on a ketogenic diet way of eating, and had lower levels of ketones in my blood.

But nowadays, I personally, (as a very metabolically deranged person, and - only I can call myself that! ) only go into ketosis proper after three or so days of fasting. But yes - I've been lower carbing since about three to six months after diagnosis. Loooong term, as in ten years. Which is not uncommon to find online. (I have a great BG meter which is pretty cost effective when I'm gainfully employed, called the CareSensDual, and you buy test strips for both BG, and ketones. I don't have to test ketones nowadays though, due to past years of self-checking/testing. And I don't unless I am particularly looking out for them for some reason or other.)

But, I have 'unnaturally', as in diabetic-proper, high blood glucose, regardless of eating LCHF, for the past year or so.

 

[Binky21]

I had all the common things tested - B12 fine (I have taken supplements for years), iron on the low side but I take iron supplements now and a little better but not a massive difference. I thought that gluconeogenesis mainly takes place when you are in ketosis i.e. the intake of glucose is very low (or your blood sugar drops too low). It's frustrating because my diet is on paper really good now, it should be super healthy but I struggle to get through the day sometimes because of the fatigue. I don't eat meat so can't increase that (I haven't for 40 years so it's not because of that) consultant said it's because you're not eating enough carbs...

i have been at this for 20 years with varying degrees of success so i'll put my 2 cents in. When first diagnosed I went VLC for 6 months. Took my carbs down to 20 - 30 a day. Hoped it would help me lose weight but no. No ketosis, no weight loss. Fabulous HBA1C, Liver results and lipids however. Tons more energy since forever. Very low hunger. On this basis I suggest you try 25 carbs a day for 1 - 2 weeks if you can manage it. Its hard and it'll mean being very strict on fruits and most veges as well as no breads etc. It would be interesting to see if this revs up your energy levels, if its a BG issue, I suspect it might.

I left this way of living because it was miserable for a previous gourmand to screen out so many foods and I started feeling sorry for myself. The precipitating factor in me changing my eating was that we were in Australia at the time and it was stinking hot, I was at 5.5 hours since eating (not yet on any meds at that stage) and I was hot and hungry. I saw an ice cream stand and the rest is history.

But why I say this is, after eating the ice-cream I had to go to bed for the afternoon, the impact of the sugar was so great, I was totally exhausted. After that, I had managed to kick start my sugar cravings again and never got back to VLC again.

As to other conditions, have you considered thyroid and had a range of thyroid tests done? Low thyroid can be pretty tiring. If you have something like IBS, that too can result in nutritional deficiencies over a longer period which may effect energy.