Type 2 - CGM and ‘Official’ Advice

[TC1763]

Hi, this is my first thread and I wanted to have a rant/make some observations about my general experiences with Type 2. Sorry it might be a bit long.

I was diagnosed just before lockdown, I can’t remember what my first HA1c was but it was high. I had the usual stern talk about not eating cakes and sweets and losing weight and was packed off with some metformin and a link to an online course.

To be fair, I was a bit on the podgy side (even though cakes and sweets are not really my thing) so I did the course, tweaked my diet to be more like the Mediterranean diet, switched white bread, pasta and rice to whole grain and upped my exercise. And lost a couple of stone. By my next review my A1c was back in the pre diabetic range. Happy days, or so I thought. Still I was told to keep on the metformin and given a statin as my cholesterol was a little high.

Then I hit menopause. Still doing the same stuff, kept all but half a stone of the weight off but my next review A1c was up again. Same lecture about cakes and sweets, to look at the online stuff, exercise, and to up the metformin to two a day. I was miffed at the assumptions about my diet and exercise ( I’m generally pretty active) but did what they asked.

The next few reviews there was no change or the A1c was slightly higher - same patronising lectures each time. A brief trial of 3 metformin a day, which left me feeling like ****, so I stuck at 2. Nothing appeared to have much of an impact, and now it was increasingly hard to lose weight - I would literally gain and lose the same 4-5 pounds. I was massively frustrated and annoyed that every review was the same.

Then a month or so ago I was offered to take part in a study looking at T2 and diet and jumped at the chance. Partly because I had read Invisible Women which highlights how rarely women are included in medical studies, and partly because they would give me a CGM.

I had my bloods done and again, despite there being no major changes to my diet, my A1c was up to 68. I got a CGM and was told for the first 2 weeks to eat more or less normally, so I decided to run some experiments of my own to see what spiked my blood sugar by tracking what I ate against the CGM output. It was interesting - two bits of whole grain toast spiked higher than a couple of beers on a night out. Any bread, whether white, whole grain, previously frozen, with or without fats and protein it made no difference massive spikes every time.
View attachment 72963

For those first two weeks my blood sugar was all over the place, early morning spikes, spikes after each meal and staying high most of the time.

Then I was switched to a low calorie (1k calories per day) low carb diet for the next 4 weeks. Part of the idea was to look at the impact of weight loss vs diet alone. This was supported with a booklet of guidelines and some menu suggestions.

The difference was pretty much instantaneous, you could see the impact on my blood sugar dramatically from day 1.
View attachment 72964

I am just over 2 weeks in and the difference is staggering. While I have lost weight (difficult not to on 1k cals per day), more importantly in my second week my levels have dropped to the normal range and they are more stable.
View attachment 72965

There are still a couple of weeks to go and a final set of bloods but I am seriously considering self-funding a CGM for a couple of weeks while I up the calories to a more sustainable level.

Now here is my main issue, for the past 3 years at least I have gone in for my review, my numbers have slowly risen but nothing different has been suggested. All I get told is to stop eating things I don’t really eat, to eat whole grains and wholemeal, and to keep taking the tablets. What is the point if it is clear that this is having no effect at all? Was the plan that I just drift along with everything getting gradually worse and more medications being thrown at me? Why were there no alternatives suggested? Even a noncommittal have your tried x, some people have found it helps would have been better than nothing. I wonder what this may have cost me health wise over the past few years.

If I had been given a CGM for a few weeks three years ago I could have seen the impact of the supposedly healthy choices I was making. And while they are expensive, so is multiple years of increasing medication and worsening outcomes.

Hi, I can understand your frustration. I had the same experience. I was told that my diet sheet couldn’t be right or I was forgetting to add things. I was so miserable as I was so accurate to no avail. In the end I ignored the diabetic specialist and my GP and am on a very low carbohydrates diet, my sugars are within the low range, my medication drastically reduced, the HBA1c had gotten so high I was put on insulin, got to 96 units Toujeo daily plus 60 units Novorapid four times a day. Now I’m on 18 units Toujeo and no novorapid. My diabetic team not happy with my diet but I don’t care as I feel better and am in more control. Sometimes the health professionals just can’t cope when people don’t fit in the norm ( and I am a nurse myself)

 

[Dynamic Penguin]

As an aside from your CGM question @Dynamic Penguin I read an interesting study the other day about the effects of declining estrogen on blood sugars in menopausal women . Here is a quote from the paper:

"The decline of the metabolic functions is not due only to the lack of progesterone, but also to the hypoestrogenic state. As women shift from the “perimenopause” status to the “postmenopausal”, hypoestrogenism worsens insulin resistance, which is also triggered by the slow but progressive cortisol increase typical of aging. It is well known that cortisol induces gluconeogenesis and, this, further promotes insulin resistance. At the same level, hypoestrogenism also partly induces a significant reduction of growth hormone (GH) plasma levels, which predisposes to more storage of abdominal fat mass with a reduction in lipid metabolism."

That may be the reasoning behind "Then menopause hit" , and why doing the same thing for controlling your blood sugars no longer is sufficient. Metabolic syndrome, to which insulin resistance plays a major part, is the likely reason what you did before menopause no longer had the same impact on your blood sugars.

Here is the full paper.

https://gremjournal.com/journal/02-...-body-structure-and-the-therapeutic-approach/

Thank you. I thought it must be something along those lines. It is interesting to understand it in more detail.

 

[Dynamic Penguin]

Right, final set of blood work was done after 2 weeks of normal eating and 4 weeks on the low cal low carb diet.

Starting HbA1c was 68
End HbA1c was 48
So down 20 in just over a month, and a 6kg weight loss.

Going forward, I’m increasing my calories to about 1400 and sticking to the low carb most of the time. In a month or so I’ll self fund a CGM to see how things are going, and make adjustments as needed.

Sticking to the diet, even at the 800-1000 cal was much easier than I thought and I didn’t feel hungry most of the time. I think the higher cals will make it easier.

 

[E as they say in Brizzle]

Hi, this is my first thread and I wanted to have a rant/make some observations about my general experiences with Type 2. Sorry it might be a bit long.

I was diagnosed just before lockdown, I can’t remember what my first HA1c was but it was high. I had the usual stern talk about not eating cakes and sweets and losing weight and was packed off with some metformin and a link to an online course.

To be fair, I was a bit on the podgy side (even though cakes and sweets are not really my thing) so I did the course, tweaked my diet to be more like the Mediterranean diet, switched white bread, pasta and rice to whole grain and upped my exercise. And lost a couple of stone. By my next review my A1c was back in the pre diabetic range. Happy days, or so I thought. Still I was told to keep on the metformin and given a statin as my cholesterol was a little high.

Then I hit menopause. Still doing the same stuff, kept all but half a stone of the weight off but my next review A1c was up again. Same lecture about cakes and sweets, to look at the online stuff, exercise, and to up the metformin to two a day. I was miffed at the assumptions about my diet and exercise ( I’m generally pretty active) but did what they asked.

The next few reviews there was no change or the A1c was slightly higher - same patronising lectures each time. A brief trial of 3 metformin a day, which left me feeling like ****, so I stuck at 2. Nothing appeared to have much of an impact, and now it was increasingly hard to lose weight - I would literally gain and lose the same 4-5 pounds. I was massively frustrated and annoyed that every review was the same.

Then a month or so ago I was offered to take part in a study looking at T2 and diet and jumped at the chance. Partly because I had read Invisible Women which highlights how rarely women are included in medical studies, and partly because they would give me a CGM.

I had my bloods done and again, despite there being no major changes to my diet, my A1c was up to 68. I got a CGM and was told for the first 2 weeks to eat more or less normally, so I decided to run some experiments of my own to see what spiked my blood sugar by tracking what I ate against the CGM output. It was interesting - two bits of whole grain toast spiked higher than a couple of beers on a night out. Any bread, whether white, whole grain, previously frozen, with or without fats and protein it made no difference massive spikes every time.
View attachment 72963

For those first two weeks my blood sugar was all over the place, early morning spikes, spikes after each meal and staying high most of the time.

Then I was switched to a low calorie (1k calories per day) low carb diet for the next 4 weeks. Part of the idea was to look at the impact of weight loss vs diet alone. This was supported with a booklet of guidelines and some menu suggestions.

The difference was pretty much instantaneous, you could see the impact on my blood sugar dramatically from day 1.
View attachment 72964

I am just over 2 weeks in and the difference is staggering. While I have lost weight (difficult not to on 1k cals per day), more importantly in my second week my levels have dropped to the normal range and they are more stable.
View attachment 72965

There are still a couple of weeks to go and a final set of bloods but I am seriously considering self-funding a CGM for a couple of weeks while I up the calories to a more sustainable level.

Now here is my main issue, for the past 3 years at least I have gone in for my review, my numbers have slowly risen but nothing different has been suggested. All I get told is to stop eating things I don’t really eat, to eat whole grains and wholemeal, and to keep taking the tablets. What is the point if it is clear that this is having no effect at all? Was the plan that I just drift along with everything getting gradually worse and more medications being thrown at me? Why were there no alternatives suggested? Even a noncommittal have your tried x, some people have found it helps would have been better than nothing. I wonder what this may have cost me health wise over the past few years.

If I had been given a CGM for a few weeks three years ago I could have seen the impact of the supposedly healthy choices I was making. And while they are expensive, so is multiple years of increasing medication and worsening outcomes.

My story is pretty much the same.
I take all the advice as a given, I knew I was too fat, did lose a couple of stone. I adopted the phrase " The diet starts in the shop" which helped.
However I hit a brick wall and just couldn't get to my target weight. My work clearly wasn't helping , as difficult to be good when your sooo hungry. .
Anyway my Hab1c was getting worse and diabetic clinician was upping my metformin to the max. All came to head when they wanted to put me on some other tablets in addition to my maxed out Metformin. I was reluctant and cut a deal, saying let's put the new medication off. Instead I will lose some more weight and up my anti. However soon hit the brick wall again, with regard to weight.
Anyway moving forward a friend who is a type1 bought me a cgm for my birthday ( He used to buy me whisky ), I was reluctant to use it but after much badgering , I agreed. Wow after week 1 I had managed to keep myself in the green all day ( by eating less more often and cutting the carbs) . On the first week my spikes were enormous. I am now losing weight again but more importantly, I have a way out of diet or bust. By changing the way I eat I feel fuller for longer, my spikes are under control and the motivation has never been so good.
I have decided to self fund for the next couple of months. If I can get to my target weight and keep in the green. I will use the cgm to increase my calories to a sustainable level, maintain my weight and would like to reduce number of metF tablets. ( After consultation.) My next annual review is in October. I don't know how much discretion my clinician has but if I can demonstrate how effective the cgm has been, it might be worth the ask.
Thank you for posting your experience. Nice to know also working for you and I am not clutching at straws.

 

[TreboroughLiz]

I was diagnosed with Type 2 in my thirties. Before this I had gestational diabetes with each of my four children. The advice I was given prior to diagnosis was to avoid weight gain by following a low fat diet. Of course that was the erroneous advice everyone in Britain and America was being given at the time (I am now 60) I have yoyo'd the same 2 stone on and off throughout this time - never understanding why I would gain weight back so easily and whilst going just into the overweight range remaining in the 'ideal' BMI range. Every time I had a change of medical professional they would look at me and suggest it was a misdiagnosis because I was 'too thin' to have type 2. Ten years ago I started to query the low fat advice. One Diabetic Nurse shouted at me that low carb was dangerous and amounted to an eating disorder. My HBA1c has just been going steadily up over the last 25 years and I have been in a permanent struggle to stop gaining weight. Last year I did three things - started to self fund a CGM, read about personal fat thresholds (I should have been much thinner for me but kept being told my weight was fine if I was in the ideal BMI range) and I learnt about UPFs. I have had the same experience as others here - my 'healthy' wholemeal Hovis bread was spiking my blood sugar in an alarming way - I might as well have been eating a slice of cake. I have now dropped my BMI to 19, removed most UPFs from my diet and track my blood sugar levels. I don't think the majority of NHS staff understand how raised insulin levels drive weight gain and make you feel hungry all the time. I think there is still a lot of blaming T2 diabetics when actually it is the food industry and incorrect medical advice that has caused the so called epidemic.