My Story - Diabetic Glucose Levels / Watching For a Year

I found this forum through Google. I want to share a story and see what people think. I will preface that all of this happened a year ago where an endocrinologist decided this is not diabetes.

November 2017, started feeling run-down. Two years before, during stressful period in life, I was not eating much and got ketone taste in my mouth, after eating carbs. I made a mistake of Dr Googling and it has shown diabetes. I went to do tests which were normal. I remember a reading of 6.5 mmol/l 2-3 hours after a meal at doctor's office. I was told all is good and start eating carbs. And I did ear carbs.

Fast forward November 2017. I got exactly same problem after two months of eating very carb heavy diet. I went to a hospital and they found 3+ glucose in my urine. I then went to GP and I had 3.9 mmol/l fasting BG with 4.9% HbA1c. I insisted on glucose tolerance test and went to do it while low carbing. My BG went to 13.2 mmol/l AND I started to pee bloody urine. Which was weird so A&E time it was. Kidney stone. The registered BG was lost in the hospital. I told my GP what I saw on the meter by the nurse and he reluctantly sent me to an endo.

Endo immediately started a workup on type 1 diabetes. Antibodies (3 of them) came back negative. He seemed to calm down. Ordered HbA1c, fructosamine. Normal. Fasting BG was normal but c-peptide was slightly low. He did not make any fuss about that. He repeated OGTT which I failed again on 14.2 mmol/l after 2 hours. The hospital thought I had DKA so they put me into bed for two days, monitoring BG with no insulin. I was told the variation was normal, that high OGTT was caused by low-carbing and to resume carbs slowly.

The endocrinologist was right. For the last year I was hovering around 5.2 mmol/l while on low carb diet. Why am I on it? Because my attempts to return to normal diet and see what pancreas can do resulted in a disaster where week after week I saw high readings in 10-12 mmol/l after meals and I was not happy with it. My BG always comes back down. But I started eating to the meter to this day.

My blood glucose varied between 5-6 mmol/l on this diet. I feel low when my CodeFree shown 4.6-4.8 mmol/l. My HbA1c increased to 5.0% while on low carb. I feel best at 5.2 mmol/l.

I observed that my blood glucose control worsened in the last couple of weeks where I am consistently above 6 mmol/l after meals, stay there longer and feel symptoms of hyper: pressing headache, tingling and anxiety, sleepiness.

Questions.

1) Does this show a worsened BG control?
2) If so, could it still be type 1 diabetes but very slow progression?
3) What do you make of failed OGTT a year ago? Twice.
4) Why did I have better HbA1c a year ago ona high carb diet but worse % on low carb diet?

Values that I remember from two years ago: 6.x mmol/l after carb heavy meal, 4.x something after meals. Perfectly normal.
Fast forward to now: 5.x mmol/l and no less all the time. Close to 6.x fasting and above 6.x close to 7.x postprandial on low carb meals.

Long, but I hope someone answers.

Contralto said:

It sounds like my beginning. four years later, things got much worse.

Eat to your meter sounds good, especially testing after eating single foods, see which things are spiking you, whether you are having any hypoglycemic tanking?

Also, if you can afford it, get a heart monitor that also notices irregular heartbeats and test several times a day?

Check any medications or supplements for their effects on glucose?

Got the question marks because you are still in the need a good doc phase

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You mean this sounds like the beginning of type 2?

Foods that spike me are carbs. All of them. If I eat mix of fat and protein with low carb veggies, I don't go above 6 mmol/l much. Give me a banana and I feel bad, 30 mins later the BG is like 7-9 mmol/l, same with bread.

My GP cannot do anything because my HbA1c is 5%. All I can do is pester her to do test every 6 months and see if it goes up. I also try to keep my vitamin D high because lack of it is associated with autoimmunity.

Here is what I currently eat: various nuts, low carb vegetables such as brocolli, cauliflower, watercress, spinach, kale, cucumber, radish, tomatoes. I eat meats as well. I indulge in bacon and eggs. Basically, I am in ketosis for a year already.

My grandmother had diabetes and used insulin but I don't know which type it was. She was very overweight.

With regards to heart, I had full testing done recently and it was all fine. So I trust my cardiologist.

DCUKMod said:

To my view, there are far too many things affecting blood glucose to make any sense commenting on the describes circumstances years ago. You cite you have a kidney stone? The stress on your body of that could have elevated your blood sugars.

The OGTTs; if you didn't "carb up" (i.e. eat a decent level of carbs - over, say 150gr, a day for a few days beforehand), you are much more likely to provoke a false positive. It is a well documented situation you might like to Google.

Your fruity breath could be nutritional or starvation ketosis. Nutritional ketosis isn't harmful, but starvation ketosis is a warning sign the person isn't eating enough. I have zero idea if either of those situations applied to you at the time.

I think if your blood work continues to come back as normal, and you enjoy your LC lifestyle, why not just relax and enjoy life. It seems like you may be striving for a label of some sort.

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Yes, LC lifestyle makes me feel mostly normal. I don't gain or lose weight, it is somewhat stable. I don't feel very hungry on it.

I would relax and enjoy life, but I just feel really bad when I get those spikes to 7 mmol/l. They eventualyl come down but I feel so out of order, have to cease doing things and just want to sleep.

Thing is, my c-peptide was a bit below normal range so whatever insulin resistance I had at a time, it was caused by physiological insulin resistance, not pathological. People have glucose-resistant muscles when in ketosis.

I think my problem is insulin deficiency but not enough to cause problems yet. My HbA1c was always below 5% for the last few years so if I was insulin resistant, I would br running way higher % and someone would have spotted a problem. I think it is possible that my glucose pattern would look like steep rises then slow decline. But not fast enough and it causes me symptoms.

At a time, OGTT at 2 hours was 14.2 mmol/l. At 3 hours it was 3.9 mmol/l. I was shaking, sweating, my heart was racing, everything related to a hypo was present. My body brought down the glucose somehow but it was not doing it fast enough. And **** did I feel bad then. I was under endocrinologist supervision the whole procedure and that put me in the hospital under his view for 2 days. He decided I am not diabetic (yet) and released me. I think he is correct but those glucose swings really worsens quality of life sometimes.

kokhongw said:

That is rather typical of reactive hypoglycemia...see how similar it is here...
breakfast at 7:30am 5.5mmol.
Peak at 9am 14.9 mmol.
Around 11am Down to 4.4 mmol

View attachment 29662

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Interesting. What is the source of this graph?