A Very Mysterious Case of Glucose Dysregulation

[Brontozauras]

I have browsed this forum a little bit before posting as a newcomer,
but found it difficult to find the answer.

Last November, I had some issues with what it seemed like diabetic symptoms.
My diet was full of starchy carbs, no bad sugars or anything. Dr. Google told
me that it could be diabetes, and I went to reduce my intake of starches, essentially
keto diet.

This is what I have done so far and I went to doctors before and am not looking for
a diagnosis:

Went to my GP, who did fasting, HbA1c that were 4.2 mmol/l and 4.9% respectively.

I insisted that there is something wrong when I eat carbs, so was sent to do
GTT. I failed it at 2 hours having 11.9 mmol/l. When that happens, my GP took me
seriously and sent me to an endo. He did type 1 diabetes tests, repeat fastings,
c-peptide and hba1c. I was negative for 4 antibodies tested, fasting was similar
as in GP's, c-peptide was below range (not much), and same HBA1c.

The endo repeated GTT and I failed it again this time 13.2 mmol/ at 2 hours. I was
at 3.9 mmol/l at 3 hours though. He told me I do not have diabetes because of negative
tests and probably failed GTT twice because of low-carb diet.

However, after being discharged I tried to return to carbs, which resulted in spikes
above 10-11 mmol/l and nothing normalized. I then read about MODY, tested my brother
who eats normal diet and saw a number of 10-11 mmol/l at 30 minutes after meal of lots
of rice and tortillas.

Could it be genetic and we simply have weak pancreases and are slowly killing them
by such spikes? My case seems to have endo dismissed the diabetes but normal people
do not spike that high and feel like **** after meals. Also, I was told by other GPs
and another endo that keto dieters should still not fail OGTT.

How is such a condition called? I seem to keep my BG under 6 mmol/l if I eat low
carb with fastings around 5.0-5.3 mmol/l. When I do not eat for 4-5 hours, my BG
can go to 4.5 mmol/l but I never get too hypoglycemic.

Any advice of knowledgeable members is appreciated. The most stand out culprit seems
c-peptide to me, and it proves I am not insulin resistant because I can keep a BG
of 4.5 mmol/l with a bit below range c-peptide...

EDIT: my HbA1c as a week ago was 4.6%.

 

[Lamont D]

Did you have an extended OGTT?

I cannot diagnose you or tell you that you have this condition or whatever.
But do have a read of our Reactive Hypoglycaemia forum.
Your symptoms and fasting hba1c levels could be anything. There are many conditions that have those symptoms.

If these symptoms persist, you have a glucometer, be prepared to test repeatedly before and two hours after first bite, this will tell you what foods are spiking you.
I would also go back to your GP and ask for a referral to a specialist endocrinologist who is knowledgeable in these types of conditions such as hyperinsulinaemia or Hypoglycaemia. Again not saying that you actually have these conditions.
I can't understand why your endo didn't do more tests!

Please read the forum on reactive hypoglycaemia.

 

[Bluetit1802]

He told me ...... and probably failed GTT twice because of low-carb diet.

He was right about that.

When anyone has an OGTT the preparation should be as follows:

The test should only be carried out on patients who are on a stable diet, at a constant weight and with no acute illness. The patient should have maintained an adequate carbohydrate intake (125- 150g/day) for three days prior to the scheduled OGTT. The patient is required to fast overnight before the test for a minimum nine hours with nothing by mouth except water (no medications, caffeine or tobacco). Other factors can weaken the diagnostic power of the test and should be avoided as far as possible. These include severe inactivity over the preceding weeks, bed rest for several days, medical or surgical stress, fear of venepuncture, smoking during the test and certain drugs including thiazides, ß-blockers, glucocorticoids and phenytoin.

(WHO guidelines)

 

[Brontozauras]

He was right about that.

When anyone has an OGTT the preparation should be as follows:

The test should only be carried out on patients who are on a stable diet, at a constant weight and with no acute illness. The patient should have maintained an adequate carbohydrate intake (125- 150g/day) for three days prior to the scheduled OGTT. The patient is required to fast overnight before the test for a minimum nine hours with nothing by mouth except water (no medications, caffeine or tobacco). Other factors can weaken the diagnostic power of the test and should be avoided as far as possible. These include severe inactivity over the preceding weeks, bed rest for several days, medical or surgical stress, fear of venepuncture, smoking during the test and certain drugs including thiazides, ß-blockers, glucocorticoids and phenytoin.

(WHO guidelines)

I agreed that it was a good explanation but it does not explain why after 2 continuous weeks of higher carbs, I got nowhere with regards to restoring the metabolism. I now know the symptoms of a higher blood sugar and remember getting them as far as 2 months before the onset of some symptoms in November. Normal people return to normal glucose metabolism after a week or two at most, but it was not the case for me. Hence my GP is puzzled but cannot do anything because HbA1c is normal.

 

[Bryce74]

I'm no expert but 10-11 mmol/l at 30 minutes after meal is still acceptable with a "normal" non-low-carb diet I think. Two hours later it should be much lower.
You were still high two hours later with the glucose tolerance test. What about food? How high are you two hours after food?
As for rice, the glycemic index varies a lot depending on the brand/how it is prepared. There is rice with high glycemic index and rice with low glycemic index.

"Normal people return to normal glucose metabolism after a week or two at most, but it was not the case for me."

Could be you derailed your body with the keto diet much more than usually happens. Not all people react the same and therefore I am not a fan of rather extreme diets.
Maybe your body simply needs more time to find a new equilibrium.
Maybe it's best to have a moderate intake of carbs now. Somewhere between 130 and 200 grams, slow carbs, spread throughout the day with a good amount of proteins and fats to slow digestion.
Just an idea of course I would try if I were in your position.

Your diabetic-like symptoms could have another cause, but that's just guessing of course.

 

[Emile_the_rat]

10-11 mmol after 30 min are still within normal, over 11 mmol are more of a concern.

Also a OGTT will give false results if you’re on some sort of low carb or keto diet.

 

[kitedoc]

When do you feel unwell in relation to the timing of your meal? Try testing with a glucose meter ( hire, or buy) at that point and for an hour to 90 minutes after that. A friend of mine found that his blood sugar dropped below 3.6 mmol/l at about 3 1/2 hours after eating, so he was going hypo. ( low in blood sugar which does make people feel unwell, particularly when they are not used to it) Perhaps try this and with that info it may be possible to find a description for what it might be that you have.

 

[Brontozauras]

When do you feel unwell in relation to the timing of your meal? Try testing with a glucose meter ( hire, or buy) at that point and for an hour to 90 minutes after that. A friend of mine found that his blood sugar dropped below 3.6 mmol/l at about 3 1/2 hours after eating, so he was going hypo. ( low in blood sugar which does make people feel unwell, particularly when they are not used to it) Perhaps try this and with that info it may be possible to find a description for what it might be that you have.

I feel unwell when I am above 6.0 which is happening right now. I am sweating a lot and have a headache, feel a bit disoriented, etc. I ate 90% chocolate, which used to not get me above 6.0 but now I saw more. I always start sweating at 6.0 mark and feel moody right before 7.0. I do not have hypos.

10-11 mmol after 30 min are still within normal, over 11 mmol are more of a concern.

Also a OGTT will give false results if you’re on some sort of low carb or keto diet.

True, but still something is wrong.

I'm no expert but 10-11 mmol/l at 30 minutes after meal is still acceptable with a "normal" non-low-carb diet I think. Two hours later it should be much lower.
You were still high two hours later with the glucose tolerance test. What about food? How high are you two hours after food?
As for rice, the glycemic index varies a lot depending on the brand/how it is prepared. There is rice with high glycemic index and rice with low glycemic index.

"Normal people return to normal glucose metabolism after a week or two at most, but it was not the case for me."

Could be you derailed your body with the keto diet much more than usually happens. Not all people react the same and therefore I am not a fan of rather extreme diets.
Maybe your body simply needs more time to find a new equilibrium.
Maybe it's best to have a moderate intake of carbs now. Somewhere between 130 and 200 grams, slow carbs, spread throughout the day with a good amount of proteins and fats to slow digestion.
Just an idea of course I would try if I were in your position.

Your diabetic-like symptoms could have another cause, but that's just guessing of course.

With my current foods, I tend to hover around mid 5s after 2 hours. I doubt it. The moderate amount of carbs will keep me high for whole day. Not a very wise idea.

Ironically, EVERYONE, my newest HbA1c was 4.6%. So, I cannot get my primary care doctor to take me seriously. I seriously feel unwell after even minimu amount of carbs but cannot get any help, or further investigations...

 

[Bluetit1802]

Have you examined the contents of your meals when this happens to see if any of the usual culprits of food intolerance might be causing this? Gluten, lactose, dairy, nuts, whatever?

 

[lindisfel]

If I were you Brontosaurus I would read what Lamont said carefully, it could be relevant.
You hba1c seems rather low for someone having high blood glucose on an ogtt?
That could indicate something to follow up.
Derek

Did you have an extended OGTT?

I cannot diagnose you or tell you that you have this condition or whatever.
But do have a read of our Reactive Hypoglycaemia forum.
Your symptoms and fasting hba1c levels could be anything. There are many conditions that have those symptoms.

If these symptoms persist, you have a glucometer, be prepared to test repeatedly before and two hours after first bite, this will tell you what foods are spiking you.
I would also go back to your GP and ask for a referral to a specialist endocrinologist who is knowledgeable in these types of conditions such as hyperinsulinaemia or Hypoglycaemia. Again not saying that you actually have these conditions.
I can't understand why your endo didn't do more tests!

Please read the forum on reactive hypoglycaemia.

 

[Brontozauras]

If I were you Brontosaurus I would read what Lamont said carefully, it could be relevant.
You hba1c seems rather low for someone having high blood glucose on an ogtt?
That could indicate something to follow up.
Derek

I did, it is not a problem. I never measure less than 4.5 mmol/l on the meter.

I sometimes wake up at night and have to go to pee. And have acetone breathe and taste at night. I am in ketosis so it is somewhat expected but maybe some people can observe something wrong with it all.

 

[Emile_the_rat]

I feel unwell when I am above 6.0 which is happening right now. I am sweating a lot and have a headache, feel a bit disoriented, etc. I ate 90% chocolate, which used to not get me above 6.0 but now I saw more. I always start sweating at 6.0 mark and feel moody right before 7.0. I do not have hypos.

True, but still something is wrong.

With my current foods, I tend to hover around mid 5s after 2 hours. I doubt it. The moderate amount of carbs will keep me high for whole day. Not a very wise idea.

Ironically, EVERYONE, my newest HbA1c was 4.6%. So, I cannot get my primary care doctor to take me seriously. I seriously feel unwell after even minimu amount of carbs but cannot get any help, or further investigations...

«But still something is wrong», here is your problem. When you already have convinced yourself that you have problems, regardless of your blood sugar showing differently, then you have a problem.

No one get shaky or sick because of blood sugar when it is 6 mmol, and no one gets moody because of blood sugar of only 7 mmol. Sorry, but if you think blood sugar of 6-7 mmol makes you sick, shaky, moody, then you do not have a clue of what it is to really have high or low blood sugar.

If you ever experience a hypo or hyperglycemia then you would had understand. Having 2 mmol or 20 mmol is much worse, when you get blood sugar in these range you won’t feel just shaky, moody or a little bit off. To be honest it is much worse then having completely normal blood sugar readings.

If your blood sugar stays between 4-8 mmol when eating, then you should be happy. That is pretty good, and won’t give any discomfort or symptoms at all. If you feel ill, sick or that something is off, but your blood sugar stays between 4-11 mmol I can guarantee that your discomfort are NOT blood sugar related. I don’t say you do not have some sort of problem or feel ill, I’m only saying it can’t be blood sugar related when you have a completely normal readings of 6-7 mmol when/after eating.

Hoping I’m not sound harsh, but I kind of get tired of people complaining about their blood sugar when it is completely normal, and they don’t understand what it actually feels like to really have blood sugar problems. Sorry for that.

 

[donnellysdogs]

Ref you feeling hot/sweaty when you say levels at 6 or 7.0.

To me that is not related to diabetes... but could be saying something about your reactions to what you have ate.

Ie fish can make some people ill, peppers can make some people ill. Some spices can provoke this reaction.

The moody/sweat etc at 6 and 7's is very unlikely to be anything linked to diabetes, more likely to be related to intolerance of some sort of food you have ate.

 

[Lamont D]

It does sound to me like an intolerance to something!

 

[Brontozauras]

«But still something is wrong», here is your problem. When you already have convinced yourself that you have problems, regardless of your blood sugar showing differently, then you have a problem.

No one get shaky or sick because of blood sugar when it is 6 mmol, and no one gets moody because of blood sugar of only 7 mmol. Sorry, but if you think blood sugar of 6-7 mmol makes you sick, shaky, moody, then you do not have a clue of what it is to really have high or low blood sugar.

If you ever experience a hypo or hyperglycemia then you would had understand. Having 2 mmol or 20 mmol is much worse, when you get blood sugar in these range you won’t feel just shaky, moody or a little bit off. To be honest it is much worse then having completely normal blood sugar readings.

If your blood sugar stays between 4-8 mmol when eating, then you should be happy. That is pretty good, and won’t give any discomfort or symptoms at all. If you feel ill, sick or that something is off, but your blood sugar stays between 4-11 mmol I can guarantee that your discomfort are NOT blood sugar related. I don’t say you do not have some sort of problem or feel ill, I’m only saying it can’t be blood sugar related when you have a completely normal readings of 6-7 mmol when/after eating.

Hoping I’m not sound harsh, but I kind of get tired of people complaining about their blood sugar when it is completely normal, and they don’t understand what it actually feels like to really have blood sugar problems. Sorry for that.

Hi, I am sorry for such a tone, I was not aware this happens on those forums and that you had to deal with similar situation in the past. I tend to overreact and am actually getting help for this from my doctors. I had once measured a hypo which was at 3.9 mmol/l and yes it was not pleasant. I will try to get back to my doctor to describe those issues and get an opinion. Much appreciated.

Ref you feeling hot/sweaty when you say levels at 6 or 7.0.

To me that is not related to diabetes... but could be saying something about your reactions to what you have ate.

Ie fish can make some people ill, peppers can make some people ill. Some spices can provoke this reaction.

The moody/sweat etc at 6 and 7's is very unlikely to be anything linked to diabetes, more likely to be related to intolerance of some sort of food you have ate.

I ate some 90% chocolate today and a month ago it caused me diarhea, around 3 hours after. Sorry for TMI. Maybe it is a sign that chocolate is off the table, maybe chocolate provided lots of endorphins and along with antidepressants caused mini-serotonin syndrome. During it, BG rises as adrenaline levels are high. It could be chocolate, since I do not have BGs above 6 or feel irritable and sweating on my normal meals which consist of broccoli, cauliflower, beef, chicken, radish, spinach and various leafy greens. eggs and bacon as well. cheese.

 

[bulkbiker]

Hi, I am sorry for such a tone, I was not aware this happens on those forums and that you had to deal with similar situation in the past. I tend to overreact and am actually getting help for this from my doctors. I had once measured a hypo which was at 3.9 mmol/l and yes it was not pleasant. I will try to get back to my doctor to describe those issues and get an opinion. Much appreciated.



I ate some 90% chocolate today and a month ago it caused me diarhea, around 3 hours after. Sorry for TMI. Maybe it is a sign that chocolate is off the table, maybe chocolate provided lots of endorphins and along with antidepressants caused mini-serotonin syndrome. During it, BG rises as adrenaline levels are high. It could be chocolate, since I do not have BGs above 6 or feel irritable and sweating on my normal meals which consist of broccoli, cauliflower, beef, chicken, radish, spinach and various leafy greens. eggs and bacon as well. cheese.

Was it made with a sweetener? some of the sugar alcohols can have very undesirable bowel effects.

 

[Brontozauras]

Was it made with a sweetener? some of the sugar alcohols can have very undesirable bowel effects.

No this is the best quality chocoalte I have ever had. Pure cane sugar and organic cocoa. Bitter at 90% goodness.

 

[bulkbiker]

No this is the best quality chocoalte I have ever had. Pure cane sugar and organic cocoa. Bitter at 90% goodness.

Not that then...

 

[Zilsniggy]

As for rice, the glycemic index varies a lot depending on the brand/how it is prepared. There is rice with high glycemic index and rice with low glycemic index.

Glycaemic index isn't a good way for diabetics to decide what to eat. The total carb content is a better method of deciding if any food will spike blood sugar.

 

[Zilsniggy]

No this is the best quality chocoalte I have ever had. Pure cane sugar

But how much sugar? You are aware that as diabetics we should be restricting or completely taking sugar out of our diet?