Non-diabetic with questions

[CrumblingWall]

Hello, I have posted before thinking of having type 1 diabetes but it has been 1.5 year since being declared non-diabetic by an endocrinologist and my blood glucose can regulate itself. Tests he has done were: c-peptide (a bit below normal range), normal HbA1c and frusctosamine, abnormal glucose tolerance test twice (13.2 and 14.2 mmol/l after 2 hours) and always normal fasting blood glucose.

I do not have a CGM, but have been measuring my glucose on and off for the last 1.5 year. I ate ketogenic diet majority of that time, whereas endo suggested to start implementing carbs back into diet. I started around a month ago but I never eat fast-acting carbs, except really dark chocolate (85%). I eat legumes, chickpeas, meats, vegetables (no potatoes), no grains.

My problem is that I used to overfocus on BG swings, where on occasions a low carb meal sent me to 7.0 mmol/l. I usually know about this because I always feel off - sweaty, headache, weakness, etc. I realise that those are normal blodo glucose swings but they always make me feel unwell and I stop function well enough to do any of my job (software development).

I also noticed feeling low BG, at below 5 mmol/l.

There is also something weird going on with meals that have higher fast-acting sugar content: sometimes it is even caused by very dark chocolate. My BG can go to 7.0 mmol/l, stays there for 2+ hours and then can come crashing down suddendly, like today where I measured 6.2 mmol/l and swung to 4.9 mmol/l in 10 minutes and felt like crashing to the ground.

My insulin resistance has increased, I think, because it seems BG just stays elevated for too long and then crashes down. It makes me feel like ****, like today (thankfully, working from home ...).

One item that worries me is the low end c-peptide 1.5 year ago. Endocrinologist said because I was on low-carb diet at a time, pancreas did not need to pump much insulin to keep my BG stable (It was 4.5 mmol/l fasting at a time of blood draw). I had no antibodies in my blood (he tested all 4) and he did think it is not diabetes.

However, if I eat a banana, I will go to 10 mmol/l easily. I will contact my primary to measure HbA1c just in case, but my grandmother got diabetes diagnosis at age 30 (I am 26), so there is clearly something wrong with me and my body is incredibly sensitive to blood glucose swings. Anyone could shed light?

 

[Emile_the_rat]

This sound kind of familiar, well I always got really high blood sugar after eating, but I still do have some insulin production left. But starting on insulin have done wonders for me, and usually stays between 4-10 mmol after I started medication

I would advice you to take a second check, see if you can get a CGM so you can get a profile of your blood sugar. This can help to see/find out what happens when you eat and what is wrong.

Since you mention hypo I think you should ask your gp to rule out if you might have any sort of MODY. Really hope you get the help needed, wish you the best of luck

 

[SB.25]

Hello, I have posted before thinking of having type 1 diabetes but it has been 1.5 year since being declared non-diabetic by an endocrinologist and my blood glucose can regulate itself. Tests he has done were: c-peptide (a bit below normal range), normal HbA1c and frusctosamine, abnormal glucose tolerance test twice (13.2 and 14.2 mmol/l after 2 hours) and always normal fasting blood glucose.

I do not have a CGM, but have been measuring my glucose on and off for the last 1.5 year. I ate ketogenic diet majority of that time, whereas endo suggested to start implementing carbs back into diet. I started around a month ago but I never eat fast-acting carbs, except really dark chocolate (85%). I eat legumes, chickpeas, meats, vegetables (no potatoes), no grains.

My problem is that I used to overfocus on BG swings, where on occasions a low carb meal sent me to 7.0 mmol/l. I usually know about this because I always feel off - sweaty, headache, weakness, etc. I realise that those are normal blodo glucose swings but they always make me feel unwell and I stop function well enough to do any of my job (software development).

I also noticed feeling low BG, at below 5 mmol/l.

There is also something weird going on with meals that have higher fast-acting sugar content: sometimes it is even caused by very dark chocolate. My BG can go to 7.0 mmol/l, stays there for 2+ hours and then can come crashing down suddendly, like today where I measured 6.2 mmol/l and swung to 4.9 mmol/l in 10 minutes and felt like crashing to the ground.

My insulin resistance has increased, I think, because it seems BG just stays elevated for too long and then crashes down. It makes me feel like ****, like today (thankfully, working from home ...).

One item that worries me is the low end c-peptide 1.5 year ago. Endocrinologist said because I was on low-carb diet at a time, pancreas did not need to pump much insulin to keep my BG stable (It was 4.5 mmol/l fasting at a time of blood draw). I had no antibodies in my blood (he tested all 4) and he did think it is not diabetes.

However, if I eat a banana, I will go to 10 mmol/l easily. I will contact my primary to measure HbA1c just in case, but my grandmother got diabetes diagnosis at age 30 (I am 26), so there is clearly something wrong with me and my body is incredibly sensitive to blood glucose swings. Anyone could shed light?

Hello, my story isn’t exactly the same, but I have had similar tests done.

In comparison to you, my hba1c was 103 on diagnosis.

I then had c peptide done, this came back as ‘low’ and as this was a fasting test they measured my glucose as 13.5 (I was eating low carb at the time so clearly it should have been much lower!). They also done the anti body tests also which came back as negative. They have clearly established I produce very little of my own insulin (which they said was more like a T1 than T2 who often produce too much).

This left them with little answers on what type I was. But MODY has been suggested and I am waiting on these tests to be done. However I understand it’s very rare, so much so that my consultant who has worked over 2 London boroughs for 4 years has never referred anyone for the tests.

As my glucose levels kept creeping up and due to the fact I have almost no symptoms of the classic T2 (I.e. I am only 26 and not over weight), I was initially put on slow acting insulin. Now I also have to take quick acting insulin with meals and carb count.

Admittedly, 10 afer a banana is high. But in comparison, even with insulin, if I eat a banana I easily go over 15 or higher.

Things can change within 1.5 years so I would suggest going back to the doctors for another hba1c.

Best of luck and let us know how you get on

 

[Lamont D]

Hello, I have posted before thinking of having type 1 diabetes but it has been 1.5 year since being declared non-diabetic by an endocrinologist and my blood glucose can regulate itself. Tests he has done were: c-peptide (a bit below normal range), normal HbA1c and frusctosamine, abnormal glucose tolerance test twice (13.2 and 14.2 mmol/l after 2 hours) and always normal fasting blood glucose.

I do not have a CGM, but have been measuring my glucose on and off for the last 1.5 year. I ate ketogenic diet majority of that time, whereas endo suggested to start implementing carbs back into diet. I started around a month ago but I never eat fast-acting carbs, except really dark chocolate (85%). I eat legumes, chickpeas, meats, vegetables (no potatoes), no grains.

My problem is that I used to overfocus on BG swings, where on occasions a low carb meal sent me to 7.0 mmol/l. I usually know about this because I always feel off - sweaty, headache, weakness, etc. I realise that those are normal blodo glucose swings but they always make me feel unwell and I stop function well enough to do any of my job (software development).

I also noticed feeling low BG, at below 5 mmol/l.

There is also something weird going on with meals that have higher fast-acting sugar content: sometimes it is even caused by very dark chocolate. My BG can go to 7.0 mmol/l, stays there for 2+ hours and then can come crashing down suddendly, like today where I measured 6.2 mmol/l and swung to 4.9 mmol/l in 10 minutes and felt like crashing to the ground.

My insulin resistance has increased, I think, because it seems BG just stays elevated for too long and then crashes down. It makes me feel like ****, like today (thankfully, working from home ...).

One item that worries me is the low end c-peptide 1.5 year ago. Endocrinologist said because I was on low-carb diet at a time, pancreas did not need to pump much insulin to keep my BG stable (It was 4.5 mmol/l fasting at a time of blood draw). I had no antibodies in my blood (he tested all 4) and he did think it is not diabetes.

However, if I eat a banana, I will go to 10 mmol/l easily. I will contact my primary to measure HbA1c just in case, but my grandmother got diabetes diagnosis at age 30 (I am 26), so there is clearly something wrong with me and my body is incredibly sensitive to blood glucose swings. Anyone could shed light?

You are obviously feeling symptoms every time you go hyper, and then the sudden drop. This is how I would feel if I was eating too many carbs. The rollercoaster ride of highs and lows are if you are non diabetic, usually correct themselves and there is no symptoms. But if you have an imbalance in your hormonal response to food, the abnormal readings that happens can have an effect on your health.
Because you have been eating Keto for quite some time, the awareness of going above a certain blood glucose level, you will feel it. Your body has adapted to Keto. So any hyper or drop, the symptoms will be felt.

I have also read a report and also there is a thread on the RH forum about a condition called Post prandial syndrome!
This condition mimics Hypoglycaemia, with all the symptoms but the patient doesn't go hypo!
And with certain conditions that involve Hypoglycaemic symptoms or non diabetic post prandial pancreatic conditions, the Hba1c and fasting levels are usually in the normal range.

However, it is very difficult to get a diagnosis, because supervised tests need to be done, and these are usually used to eliminate other conditions.

Hope that helps.

 

[Spl@]

I know what you mean, if I eat even a basic amount of carbs, like, a cheese sandwich within the hour I would be falling asleep. I would have to do something active or eat, played havoc with driving. I would time meals to breaks so I could have a 15-20 snooze after eating which seemed to stop or greatly reduce it.
My eating habits became a semi permanent graze which I suppose kept bg constant after a fashion.


Now, on omad and low carb and the naps have gone. Simple as that, alert and active all day, if I have carbs it comes back.

 

[CrumblingWall]

Hello, my story isn’t exactly the same, but I have had similar tests done.

In comparison to you, my hba1c was 103 on diagnosis.

I then had c peptide done, this came back as ‘low’ and as this was a fasting test they measured my glucose as 13.5 (I was eating low carb at the time so clearly it should have been much lower!). They also done the anti body tests also which came back as negative. They have clearly established I produce very little of my own insulin (which they said was more like a T1 than T2 who often produce too much).

This left them with little answers on what type I was. But MODY has been suggested and I am waiting on these tests to be done. However I understand it’s very rare, so much so that my consultant who has worked over 2 London boroughs for 4 years has never referred anyone for the tests.

As my glucose levels kept creeping up and due to the fact I have almost no symptoms of the classic T2 (I.e. I am only 26 and not over weight), I was initially put on slow acting insulin. Now I also have to take quick acting insulin with meals and carb count.

Admittedly, 10 afer a banana is high. But in comparison, even with insulin, if I eat a banana I easily go over 15 or higher.

Things can change within 1.5 years so I would suggest going back to the doctors for another hba1c.

Best of luck and let us know how you get on

Do you remember how low was yours? I was at 0.68 with lower bound 0.8 but fasting BG 4.5 mmol/l I found it really hard to believe it is insulin resistance because surely such low c peptide is the opposite one would expect.

Yes, I figure demanding the GP to repeat the tests make sense. I am thinking of vitamin D as well because of depression and moodiness, I remember it helped before.

 

[SB.25]

Do you remember how low was yours? I was at 0.68 with lower bound 0.8 but fasting BG 4.5 mmol/l I found it really hard to believe it is insulin resistance because surely such low c peptide is the opposite one would expect.

Yes, I figure demanding the GP to repeat the tests make sense. I am thinking of vitamin D as well because of depression and moodiness, I remember it helped before.

I think my figure was 444 but I understand all labs use different numbering and there is no universal measurement used. I was told this was quite low given the glucose was quite high at 13. What measurement was yours in?

Did you get a hba1c before? What were those results?

I personally don’t think I am insulin resistant, I think I just don’t make enough insulin rather than being resistant to what I do produce. I think that would explain why my blood glucose can go so high.

I’m still being tested and I’m 5 months down the line. It’s very frustrating not to have a diagnosis but given I am on quick and slow acting insulin, I doubt a correct diagnosis would change my treatment.

 

[CrumblingWall]

I think my figure was 444 but I understand all labs use different numbering and there is no universal measurement used. I was told this was quite low given the glucose was quite high at 13. What measurement was yours in?

Did you get a hba1c before? What were those results?

I personally don’t think I am insulin resistant, I think I just don’t make enough insulin rather than being resistant to what I do produce. I think that would explain why my blood glucose can go so high.

I’m still being tested and I’m 5 months down the line. It’s very frustrating not to have a diagnosis but given I am on quick and slow acting insulin, I doubt a correct diagnosis would change my treatment.

I did not get hba1c from endocrinologist. I do have 2 measurements after that in the last 1.5 year. 4.9 and 5.0 %.

I mentioned above 0.68 which is below normal lower bound of 0.8. Yours was probably in pmol/l

Overall, I don't know, I am thinking it has to do with stress as well. My glucose is always higher when I am under stress and high mental load (which causes stress). When I am more relaxed, it is around 5.2 mmol/l. Stress can make it 6.5 mmol/l+ fasting, eating nothing.

I think, all I can do is not to eat things that cause me spikes and hope this self-regulation will never fail

 

[SB.25]

I did not get hba1c from endocrinologist. I do have 2 measurements after that in the last 1.5 year. 4.9 and 5.0 %.

I mentioned above 0.68 which is below normal lower bound of 0.8. Yours was probably in pmol/l

Overall, I don't know, I am thinking it has to do with stress as well. My glucose is always higher when I am under stress and high mental load (which causes stress). When I am more relaxed, it is around 5.2 mmol/l. Stress can make it 6.5 mmol/l+ fasting, eating nothing.

I think, all I can do is not to eat things that cause me spikes and hope this self-regulation will never fail

It could have been pmol/l - I have no idea just was told it was low and then put on insulin! What was yours in pmol?

Your levels don’t seem crazy high - I never wake up below 9 in the mornings and that’s with insulin. In November I was very stressed with exams and ended up passing all 6 university exams when my levels were probably on average 13/14

 

[CrumblingWall]

It could have been pmol/l - I have no idea just was told it was low and then put on insulin! What was yours in pmol?

Your levels don’t seem crazy high - I never wake up below 9 in the mornings and that’s with insulin. In November I was very stressed with exams and ended up passing all 6 university exams when my levels were probably on average 13/14

They are not crazy, they are indeed normal, or at least when I measure. I am just not so sure about spikes eating carby foods - I feel like they are too high and it is masking some issue.