Something weird going on. Ideas?

[Fox]

I was diagnosed with T2 diabetes about a year ago, with a downright terrifying A1C number.

In late July of last year I had another set of results back. The A1C was down (as was my BMI, from 25.7 to just over 23: I was losing weight so fast at one point that I was worried I was going to end up underweight), but still a worryingly high 68mmol/mol.

I panicked, and started using a flash monitor, and worked out what was causing the spikes. By November my weight had stabilised (BMI a little over 21, and a waist to height ratio of 0.47). My friends made comments about "skinny". For months my daily glucose average was hovering around 5.5mmol/L (which should convert to an A1C of around 32mmol/mol) and a variability coefficient that dropped to as low as 12%.

I thought, "rockin' it like The Boss!"

I thought, "remission territory!"

About 2 months ago I bought a batch of 4 sensors (Abbott Libre 2+). Around this time, my daily average jumped by about 10%. I blamed some iffy sensors, especially when fingerprick tests often (but not always) seemed to be reading lower. One of them was definitely faulty, but a couple of days ago I attached a new sensor from a different manufacturing batch, expecting the daily average to drop back to what it had been.

It didn't.

I don't think my diet has changed significantly. If anything I am eating even less carbohydrate (nuts and peanuts were a key source of protein and fibre, and those have been cut back on because of the carb content). I'm still covering 70-100,000 steps/week (except for ten days in the hills, where I exceeded that by some margin, but that was when I was using the definitely faulty sensor).

I have a review next week. I know that a daily average of around 6.2mmol/L isn't especially risky, and is well within target tolerances for diabetic glucose levels. The faulty sensor aside, I probably haven't had a glucose spike above 10mmol/L in months, but I am very concerned about that fact that my glucose levels are going up.

What do I need to ask? Could this be a homeostasis issue, where my glucose levels are simply reverting to a mean? If so, why is my body not burning even more stored fat (my weight might have gone up slightly, but if so we are talking about half a kilo)? I mention my weight for a reason: I know that LADA (type 1.5) is more common among people who are not overweight, and I was barely into the overweight category. Could this be LADA? If so, how do I persuade the powers that be to conduct what I understand is an expensive test?

Thank you.

 

[Leadinglights]

I was diagnosed with T2 diabetes about a year ago, with a downright terrifying A1C number.

In late July of last year I had another set of results back. The A1C was down (as was my BMI, from 25.7 to just over 23: I was losing weight so fast at one point that I was worried I was going to end up underweight), but still a worryingly high 68mmol/mol.

I panicked, and started using a flash monitor, and worked out what was causing the spikes. By November my weight had stabilised (BMI a little over 21, and a waist to height ratio of 0.47). My friends made comments about "skinny". For months my daily glucose average was hovering around 5.5mmol/L (which should convert to an A1C of around 32mmol/mol) and a variability coefficient that dropped to as low as 12%.

I thought, "rockin' it like The Boss!"

I thought, "remission territory!"

About 2 months ago I bought a batch of 4 sensors (Abbott Libre 2+). Around this time, my daily average jumped by about 10%. I blamed some iffy sensors, especially when fingerprick tests often (but not always) seemed to be reading lower. One of them was definitely faulty, but a couple of days ago I attached a new sensor from a different manufacturing batch, expecting the daily average to drop back to what it had been.

It didn't.

I don't think my diet has changed significantly. If anything I am eating even less carbohydrate (nuts and peanuts were a key source of protein and fibre, and those have been cut back on because of the carb content). I'm still covering 70-100,000 steps/week (except for ten days in the hills, where I exceeded that by some margin, but that was when I was using the definitely faulty sensor).

I have a review next week. I know that a daily average of around 6.2mmol/L isn't especially risky, and is well within target tolerances for diabetic glucose levels. The faulty sensor aside, I probably haven't had a glucose spike above 10mmol/L in months, but I am very concerned about that fact that my glucose levels are going up.

What do I need to ask? Could this be a homeostasis issue, where my glucose levels are simply reverting to a mean? If so, why is my body not burning even more stored fat (my weight might have gone up slightly, but if so we are talking about half a kilo)? I mention my weight for a reason: I know that LADA (type 1.5) is more common among people who are not overweight, and I was barely into the overweight category. Could this be LADA? If so, how do I persuade the powers that be to conduct what I understand is an expensive test?

Thank you.

You could ask for those tests, c-peptide and antibodies but with glucose levels in the range you are I would think it unlikely they would do them. Indications would be rapid loss of weight, high blood glucose which is not responding to diet or medication.
The rule of thumb is if your blood glucose is in the 4-7mmol/l range fasting/morning readigs and no more than 8mmol/l for most of the time in the 3 months prior to an HbA1C test then you would expect it to be in the normal range of below 42mmol/mol.
All you can do is wait for your result and go from there.
People weight will fluctuate on a day to day basis depending on your hydration. 1 litre of water weight 1kg so a couple of extra drinks and less loo visits can easily account for 1-2 kilos variation.

 

[JITR]

For a different perspective on elevated blood glucose as a result of exercise, suggest you look at Nocola Guess's blog post "Prediabetes in athletes".

I have no experience of CGMs but I can see they need calibrating to finger prick tests.

 

[Fox]

Thank you both!

 

[helli]

I have no experience of CGMs but I can see they need calibrating to finger prick tests.

It is not possible to calibrate Libre unless you use an unofficial third party application.
However, the recommendation is to check "unexpected" readings with a finger prick.

 

[JITR]

It is not possible to calibrate Libre unless you use an unofficial third party application.
However, the recommendation is to check "unexpected" readings with a finger prick.

This scatter chart of blood glucose and CGM data points for many individuals illustrates the very loose relationship between the two measures across the population. You will find many similar plots in various studies.

Luckily for CGM users the data for each individual seems to be reasonably consistent from day to day, week to week, and month to month. In other words their position on the chart would be much the same.

If I had a CGM I would look at the graph of highs and lows for each day and the trends week by week and month by month. Fortunately for me, as a T2D, a Newcastle diet brought my FBG down to a normal level in 7 days and I have relied on periodic blood tests since then. I have maintained my HbA1c around 35 for two years now by monitoring my weight and daily nutrition with an app (Cronometer).

If I were ever to want to estimate my blood glucose more precisely from CGM readings I would compare them to finger prick readings over time and work out conversion factors; maybe different ones for high, medium and low levels.

That is what I meant by 'calibrating to finger prick tests'.