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Ludo

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Hello, I'm new here, but it seems to be a good place.

I've recently returned an HbA1c score of 53 for the second consecutive time, and my GP has prescribed Metformin (500mg).

I don't take any meds unless strictly necessary, so am very, very wary of beginning it, primarily because it's been suggested that if I were to come off Metformin after trialling it for 6 months or so, my scores would be higher than if I hadn't taken it.

I can't find evidence for this in any of the literature - can anyone help (or point me toward where to ask, if there's a more appropriate board than this one)?

Anyone's best guess seems to be that I'm Type 2, but all the GP's I've had have been as stumped as I am. I've been 'on the borderline' consistently since I was in my very early twenties, I was a competitive cyclist then, have always been in shape, never overweight, and have kept my numbers just on the good side for the last 40 years by rigorous dietary control and lots of exercise. So now the scores have taken to climbing, I'm running out of options...

Thanks
 
Hello, I'm new here, but it seems to be a good place.

I've recently returned an HbA1c score of 53 for the second consecutive time, and my GP has prescribed Metformin (500mg).

I don't take any meds unless strictly necessary, so am very, very wary of beginning it, primarily because it's been suggested that if I were to come off Metformin after trialling it for 6 months or so, my scores would be higher than if I hadn't taken it.

I can't find evidence for this in any of the literature - can anyone help (or point me toward where to ask, if there's a more appropriate board than this one)?

Anyone's best guess seems to be that I'm Type 2, but all the GP's I've had have been as stumped as I am. I've been 'on the borderline' consistently since I was in my very early twenties, I was a competitive cyclist then, have always been in shape, never overweight, and have kept my numbers just on the good side for the last 40 years by rigorous dietary control and lots of exercise. So now the scores have taken to climbing, I'm running out of options...

Thanks
Welcome to the forum
For some people it is just the luck of the draw but for others diet and lifestyle can account for it.
Often people think they have a good diet but don't appreciate that if their body has a problem coping with carbohydrates then what might be a healthy diet for somebody who is not diabetic is not so, if you are.
Many people manage to reduce their HbA1C from where you are or higher without medication by making some significant dietary changes as it sounds as if you are pretty active.
It is worth looking at your diet to see if you can identify high carb foods like potatoes, rice, bread, pasta, some fruits as well as the obvious cakes, biscuits, sugary drinks including fruit juice which may be causing the problem.
Many find a low carb approach with plenty of protein and healthy fats is successful, this link may give you some ideas for re-evaluating your diet.
The suggestion is that no more than 130g carbs per day is a good starting point, it is not NO carbs.
 
What is your diet?

I'm guessing you are not overweight or obese.
 
Welcome to the forum
For some people it is just the luck of the draw but for others diet and lifestyle can account for it.
Often people think they have a good diet but don't appreciate that if their body has a problem coping with carbohydrates then what might be a healthy diet for somebody who is not diabetic is not so, if you are.
Many people manage to reduce their HbA1C from where you are or higher without medication by making some significant dietary changes as it sounds as if you are pretty active.
It is worth looking at your diet to see if you can identify high carb foods like potatoes, rice, bread, pasta, some fruits as well as the obvious cakes, biscuits, sugary drinks including fruit juice which may be causing the problem.
Many find a low carb approach with plenty of protein and healthy fats is successful, this link may give you some ideas for re-evaluating your diet.
The suggestion is that no more than 130g carbs per day is a good starting point, it is not NO carbs.
Thanks for taking time to reply. I'm afraid the link you mention doesn't seem to work for me. As I say, I was obliged to make all those changes quite a while ago now - haven't had a refined or simple carbohydrate in decades, alas - but where there are more changes left that I can make, I'm always interested. Trading in wheat products for flours from other grains a couple of years ago has had a measurable impact on my scores, for example, and blueberries have a really counterintuitive effect on my post-prandial numbers, so I've cultivated allotments full of low-GI fruit bushes! I'm glad you're not advocating zero carbs - I cycle, climb, work out, etc., and need the glycogen!
 
What is your diet?

I'm guessing you are not overweight or obese.
Hi,

Thanks for replying. Good guess: no, really not overweight - very lean/low bodyfat percentage. Diet is largely plant based, lots of higher-fibre greens & low-GI fruits (I 'grow my own' on a few allotments - this frost's doing wonders for the kale), protein is fish, white meat & fermented dairy, preferred fat is olive oil. Weakness is porridge oats! Oh, and coffee. I do like coffee.
 
Virtually the same diet as myself, although I don't do oats.

Berries have very little effect of my blood sugar, and my hba1c was 83 when diagnosed. I can throw down a whole punnet of Raspberries with no effect.

Metformin has been shown to reduce BG in slim T2 diabetes, even on a low dose - most of the research I've read onto its effects is with overweight people who do not adjust their diet.

I'm not sure they they think stopping Metformin would lead to levels higher than if you hadn't taken it.

I know someone in a similar situation - T2 diabetes when very young and slim, no signs of T1, just a slow progression with higher levels due to age.
 
Virtually the same diet as myself, although I don't do oats.

Berries have very little effect of my blood sugar, and my hba1c was 83 when diagnosed. I can throw down a whole punnet of Raspberries with no effect.

Metformin has been shown to reduce BG in slim T2 diabetes, even on a low dose - most of the research I've read onto its effects is with overweight people who do not adjust their diet.

I'm not sure they they think stopping Metformin would lead to levels higher than if you hadn't taken it.

I know someone in a similar situation - T2 diabetes when very young and slim, no signs of T1, just a slow progression with higher levels due to age.
Heartening to know I'm not alone - in dietary habits or baffling diagnosis - albeit I'm sorry to hear your score. I hope you enjoy the punnet of raspberries anyway.

Can you point me to any useful research on Metformin &/or the effects of stopping taking it? The line that cessation leads to higher scores is all that's putting me off. I'm oddly keen to take it - I'm well aware of how harmful my increasing scores can be on my innards, and its chemistry seems pretty benign - but if it turns out not to help, I really don't want stopping it to undo what I've managed to do with my fantastically dull diet...!
 
Heartening to know I'm not alone - in dietary habits or baffling diagnosis - albeit I'm sorry to hear your score. I hope you enjoy the punnet of raspberries anyway.

Can you point me to any useful research on Metformin &/or the effects of stopping taking it? The line that cessation leads to higher scores is all that's putting me off. I'm oddly keen to take it - I'm well aware of how harmful my increasing scores can be on my innards, and its chemistry seems pretty benign - but if it turns out not to help, I really don't want stopping it to undo what I've managed to do with my fantastically dull diet...!

Ah, I was back down to the 30s after 3 months (I was overweight) and have been in the 30s for two years now.

I've never seen any research on the effects of stopping Metformin - I was told I could stop it if I wanted, but I decided to keep on it, just 500mg. There's quite a lot on Metformin and doses, some of it going back into the 1980s. Try googling for 'efficacy of low dose metformin'

This one looks at Metformin and another drug:



As it's been in use for a long time in the UK/Europe, there is a lot of research, although some of the earlier papers seemed to overstate its effect, and 1500mg is seen as a minimal effective dose (But that doesn't mean it doesn't work at doses of < 1500mg, it means that over time hba1c still goes up from baseline, but not as much as someone on a placebo, whereas someone on 1500mg may see a decrease in hba1c compared to baseline.)
 
@Ludo I have been able to keep my blood glucose down in normal numbers by eating low carb foods, I set a limit of 10% carbs and limit those in the 7 to 10 range, plus I eat a small amount of high cocoa chocolate, but I do mean small.
I don't eat porridge as it is too high carb.
We don't need to eat carbs to have glycogen stores, there are other options available.
Metformin made me so ill, along with Atorvastatin, that I gave up taking them after a few miserable weeks - I doubt I ever needed them, but I was vastly overweight and dismal at diagnosis as I was eating low fat high carb and dragging myself around on sticks.
I tried to lower my HbA1c number into the 30s by reducing the daily maximum intake of carbs from 50gm to 40, when my HbA1c was 42. A year later my HbA1c was - 42, so I suspect that the many years being undiagnosed and pushed to eat a 'healthy' diet took their toll.
I did wonder if you could be a slow onset type 1 with some remaining insulin production - as some people seem to potter along for decades in that state eating low carb with just the occasional blip which eventually shows up if they are tested at the right time such as after Christmas....
 
Thanks for taking time to reply. I'm afraid the link you mention doesn't seem to work for me. As I say, I was obliged to make all those changes quite a while ago now - haven't had a refined or simple carbohydrate in decades, alas - but where there are more changes left that I can make, I'm always interested. Trading in wheat products for flours from other grains a couple of years ago has had a measurable impact on my scores, for example, and blueberries have a really counterintuitive effect on my post-prandial numbers, so I've cultivated allotments full of low-GI fruit bushes! I'm glad you're not advocating zero carbs - I cycle, climb, work out, etc., and need the glycogen!
Sorry seems I didn't include the link. https://lowcarbfreshwell.com/
 
Actually, people who do a lot of exercise do tend to require more carbohydrates to restore glycogen and can also, with a lot of training, increase their glycogen stores.
 
@Ludo I have been able to keep my blood glucose down in normal numbers by eating low carb foods, I set a limit of 10% carbs and limit those in the 7 to 10 range, plus I eat a small amount of high cocoa chocolate, but I do mean small.
I don't eat porridge as it is too high carb.
We don't need to eat carbs to have glycogen stores, there are other options available.
Metformin made me so ill, along with Atorvastatin, that I gave up taking them after a few miserable weeks - I doubt I ever needed them, but I was vastly overweight and dismal at diagnosis as I was eating low fat high carb and dragging myself around on sticks.
I tried to lower my HbA1c number into the 30s by reducing the daily maximum intake of carbs from 50gm to 40, when my HbA1c was 42. A year later my HbA1c was - 42, so I suspect that the many years being undiagnosed and pushed to eat a 'healthy' diet took their toll.
I did wonder if you could be a slow onset type 1 with some remaining insulin production - as some people seem to potter along for decades in that state eating low carb with just the occasional blip which eventually shows up if they are tested at the right time such as after Christmas....
Thanks for your reply, @Drummer - much food for thought - and congratulations on your weight loss and remission (not to mention the camper van!). Oh, and yes, I'll work on my oat intake.

Thanks, too, for your info on Metformin tolerance. Part of the motivation for my original question on the effects of Metformin cessation was that i seems anything up to a third of users do stop taking it (from analysis of the CPRD database - Tang Y, Weiss T, Liu J, Rajpathak S, Khunti K. Metformin, 2020), but I can't find a study of what happens to HbA1c scores when they do!

If I do commit to the Metformin, and if my body tolerates it! - one of the things I'm keen to discover is how much I 'need' some carbs for glycogen production; I've found that as I cut them down, I get more light-headed at the gym or in a long ride. BTW, the odd thing is how this is viewed in different 'communities' - sportspeople accept it as something that's pretty much inevitable in competition or a heavy workout, so not very serious, whereas anyone with any nous about diabetes might see it as a symptom of hypoglycaemia...

Info on 'slow onset T1' / LADA seems sketchy, but, yes, it does seem to fit my bill at least as well as T2, albeit the treatment seems to be the same. I'll look into it.
 
Thanks for your reply, @Drummer - much food for thought - and congratulations on your weight loss and remission (not to mention the camper van!). Oh, and yes, I'll work on my oat intake.

Thanks, too, for your info on Metformin tolerance. Part of the motivation for my original question on the effects of Metformin cessation was that i seems anything up to a third of users do stop taking it (from analysis of the CPRD database - Tang Y, Weiss T, Liu J, Rajpathak S, Khunti K. Metformin, 2020), but I can't find a study of what happens to HbA1c scores when they do!

If I do commit to the Metformin, and if my body tolerates it! - one of the things I'm keen to discover is how much I 'need' some carbs for glycogen production; I've found that as I cut them down, I get more light-headed at the gym or in a long ride. BTW, the odd thing is how this is viewed in different 'communities' - sportspeople accept it as something that's pretty much inevitable in competition or a heavy workout, so not very serious, whereas anyone with any nous about diabetes might see it as a symptom of hypoglycaemia...

Info on 'slow onset T1' / LADA seems sketchy, but, yes, it does seem to fit my bill at least as well as T2, albeit the treatment seems to be the same. I'll look into it.
Hypoglycaemia doesn't happen with non mediation controlled diabetes, as high glucose is the one symptom which defines all the different types.
If you convert to being in ketosis for energy then stamina seems to improve even if glycogen is reduced as from what I have read it seems there is no 'wall' if you are fat adapted. If going for a short burst of high intensity then glycogen stores are soon gone, but several hours moderate speed bike ride, for instance, is so much easier now. Crossing on the Sandbanks ferry from Poole and cycling around by Corfe Castle would be the sort of ride I mean - outside the tourist season.
 
Hypoglycaemia doesn't happen with non mediation controlled diabetes,

Not strictly true, hypoglycaemia can be experienced by people with or without diabetes when undertaking intense or endurance exercise with insufficient ‘fuel’. Marathon runners and the like. There is also hypoglycaemia as a separate condition outside of diabetes itself.

Hypos are not commonly caused by Metformin. But people can feel a bit ‘wobbly’ when their levels get down near the borderline (low 4s, high 3s), even those with perfectly functioning pancreases 🙂
 
Welcome to the forum @Ludo

We‘ve quite a few atypical members here. Some who seem to defy classification entirely(!) and others who are simply misclassified initially. Diabetes can be a tricky beast, and there aren’t really any 100% foolproof tests that can be carried out to separate the types (or what feels like points on the spectrum at times).

Since your HbA1c is rising despite significant dietary changes, and a high level of activity, and since you don’t carry some of the classic clinical indicators for T2, you might want to enquire about diabetes antibody tests, and getting your cPeptide measured. This could help to show if your diabetes has an autoimmune component, and how much home-grown insulin production remains if your beta cells are being attacked.

If you do end up being LADA, then insulin may be a better first med than some of the oral options that simply work remaining beta cells harder. Adding a little exogenous insulin can help take the pressure off your remaining beta cells.

Hope you get to the bottom of things 🙂
 
Not strictly true, hypoglycaemia can be experienced by people with or without diabetes when undertaking intense or endurance exercise with insufficient ‘fuel’. Marathon runners and the like. There is also hypoglycaemia as a separate condition outside of diabetes itself.

Hypos are not commonly caused by Metformin. But people can feel a bit ‘wobbly’ when their levels get down near the borderline (low 4s, high 3s), even those with perfectly functioning pancreases 🙂

Absolutely. I walked up to the peak of Vesuvius the year before last and my Libre sensor was throwing alarm as it was getting down into the low 3s, verified by a finger prick test. Felt very wobbly! It does come back up quite quickly, though.
 
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