Change of Meds, increase BS.

[ChrisT2]

Over the last 4 months I have been finger prick testing in an effort to understand my T2 diabetes. After an initial"getting to grips" with the readings and what they meant I embarked on a lower carb diet aiming to reduce daily intake to betwwen 50-100g per day. Not exactly low carb but certainly better than 50% of what I had been eating previously.
The good news is, over the last 3 months with the help of this forum my BS readings reduced from an average Hba1c (as measured by MySugr app) of 60 down to 45. I was reasonably pleased with myself as I felt I had finally got on top of my readings and had a reasonable level of control. Having discussed this with my DN she recommended I stop taking my Alogliptin and just stick to 1000mg Metformin but I should continue with the Alogliptin until my stock was finished.
I did as instructed and promptly forgot 6 weeks later that a changed Metformin tablet was now being taken and my readings shot up to averaging 60+ Hba1c and regular finger pricks were in the 9's, 10's and even higher.
In a way I was relieved to have discovered and remembered the reasons for the increase (although felt a complete idiot for forgetting )but now worried that all that hard work has been undone and I am no longer able to bring those readings down. My diet hasn't changed much but I do attempt to restrict carbs even further to get below to 50g level, not easy with my family and work life.

I read so much about reversing diabetes with diet and exercise which has worked for me in the past but only when on tablets. As I reduce the tablets the BS goes back to high levels and I am thinking that my own body cannot do without the diabetic medication which I do find somewhat depressing.
I know it is early days and I have had to go back to the previous days of experimentation including selling all the family heirlooms and purchasing a months worth of CGM to hopefully get a more accurate picture. I cannot get an NHS blood test until next April so won't know until then if my readings will have gone back down but the last few weeks have not impressed me or given any indication that they have.

Has anyone else similar experience or advice when reducing meds. I would hate to go back on increased meds but able to control things, my ambition is to reduce meds completely but I have hit a major roadblock.

Thanks.

 

[Outlier]

It is, as you say, early days. This is just a short pause on a long journey. Bodies each adjust in their own time, and they don't actually "want" to adjust at all, so we have to be tolerant of this. You know what to do, and there is every chance you will get where you want to be. Many of us have been along this road, and we are all here to support you and assure you it is worth persevering. You will look back on this one day and be able to offer the same words to others who will be where you are now.

 

[LivingLightly]

Unfortunately @ChrisT2, the body adapts to the continued presence of a drug and IME switching to an alternative medication or dropping one altogether as in your case, seldom proceeds smoothly at first.

Consistency with everything else is the name of the game. We stress carb intake and timing of meals because those are two factors we can control. If you can hang in there and keep to a low carb lifestyle then, barring illness or injury, your blood glucose levels should gradually improve and you'll get results.

Keeping BG levels in check is a daily challenge I know, but well worth the effort and it does get easier. I hope your next HbA1c test reflects all those efforts.

 

[flonvic]

Over the last 4 months I have been finger prick testing in an effort to understand my T2 diabetes. After an initial"getting to grips" with the readings and what they meant I embarked on a lower carb diet aiming to reduce daily intake to betwwen 50-100g per day. Not exactly low carb but certainly better than 50% of what I had been eating previously.
The good news is, over the last 3 months with the help of this forum my BS readings reduced from an average Hba1c (as measured by MySugr app) of 60 down to 45. I was reasonably pleased with myself as I felt I had finally got on top of my readings and had a reasonable level of control. Having discussed this with my DN she recommended I stop taking my Alogliptin and just stick to 1000mg Metformin but I should continue with the Alogliptin until my stock was finished.
I did as instructed and promptly forgot 6 weeks later that a changed Metformin tablet was now being taken and my readings shot up to averaging 60+ Hba1c and regular finger pricks were in the 9's, 10's and even higher.
In a way I was relieved to have discovered and remembered the reasons for the increase (although felt a complete idiot for forgetting )but now worried that all that hard work has been undone and I am no longer able to bring those readings down. My diet hasn't changed much but I do attempt to restrict carbs even further to get below to 50g level, not easy with my family and work life.

I read so much about reversing diabetes with diet and exercise which has worked for me in the past but only when on tablets. As I reduce the tablets the BS goes back to high levels and I am thinking that my own body cannot do without the diabetic medication which I do find somewhat depressing.
I know it is early days and I have had to go back to the previous days of experimentation including selling all the family heirlooms and purchasing a months worth of CGM to hopefully get a more accurate picture. I cannot get an NHS blood test until next April so won't know until then if my readings will have gone back down but the last few weeks have not impressed me or given any indication that they have.

Has anyone else similar experience or advice when reducing meds. I would hate to go back on increased meds but able to control things, my ambition is to reduce meds completely but I have hit a major roadblock.

Thanks.

I'm going through the same thing.Got my Hba1c down to 45 and they took away my linagliptin(last november).My fasting numbers are now in the 8s and climbing.Speaking to Diabetic nurse next Monday.

 

[ChrisT2]

I'm going through the same thing.Got my Hba1c down to 45 and they took away my linagliptin(last november).My fasting numbers are now in the 8s and climbing.Speaking to Diabetic nurse next Monday.

Sorry to hear your results and situation are so similar. Let us know how you get on and what advice you get from the nurse. Good luck for Monday.

 

[lovinglife]

Whilst for the majority of T2 a low carb diet can work but it’s not the same for everyone, some need the extra help that medication can give. Like others have said it’s very early days for you coming off the medication so give your body time, but if you find nothing changes then there is no shame in needing medication to help you keep your numbers down.

For me personally if I could no longer manage with diet alone then I would much rather use the medication available to me to reduce my numbers than run higher numbers and risk complications that those higher numbers can bring. It’s your diabetes, no one else’s and you have to do what’s best for you

 

[flonvic]

Sorry to hear your results and situation are so similar. Let us know how you get on and what advice you get from the nurse. Good luck for Monday.

Good news.Back on linagliptin.(If I need them,so be it)Heres hoping for lower numbers.

 

[ChrisT2]

Glad you have got the decision you wanted and the diabetic nurse listened and reacted positively to your concerns. Agreed with comments of yourself and Lovinglife that there are situations where we need the medication for that bit of extra help. Sadly there is no "one size fits all" solution to diabetes which makes it such a beast to keep under control. Good luck going forward and hopefully those readings will start to fall.

 

[flonvic]

Glad you have got the decision you wanted and the diabetic nurse listened and reacted positively to your concerns. Agreed with comments of yourself and Lovinglife that there are situations where we need the medication for that bit of extra help. Sadly there is no "one size fits all" solution to diabetes which makes it such a beast to keep under control. Good luck going forward and hopefully those readings will start to fall.

Thankyou.She was really nice.

 

[ChrisT2]

Just thought I would add a minor update to this. It has been over 3 months since changing meds and dropping back to Metformin only (1000mg twice daily. ) Whilst I have managed to keep my BS HbA1C to around the same 45 levels being measured by Libre and My Sugr app I am slightly disappointed that they have not gone lower allowing me to ditch the meds altogether.
My NHS blood test is not until end of March 2025 so I still have some time to go but have to jump over the carby hurdle of Christmas that I know will be difficult to stick to keeping the BS levels down. But we do have to live life and take what it throws at us.
On a slightly more positive note I have read that Metformin research by the British Heart Foundation has shown it to be possibly beneficial in reducing heart disease as well as the benefits for diabetes and if I was consigned to a life on Metformin it may have some advantages after all. Despite this I am always wary of anything I read on the internet good or bad so remain to be convinced.
A final note that has certainly helped me on my BS control journey is the use of a CGM. Having to self fund is a pain in the wallet but seeing those levels going up and down in real time is a great way to reveal what foods are good and bad for me. The figures I get are always 2 mmol less on the CGM than the finger prick gives me but strangely enough the predicted HbA1c from both indicators are roughly the same. What the CGM has shown is that I have a natural steady rise in BS from about 0500 until a maximum peak at 1200, there is nothing I can do to halt this and the CGM just shows spikes along the rise obviously with choice of foods. Fasting, exercise or pill taking does nothing to halt this rise at all. BS then falls slowly and rises again just before a 1700 dinner. It is Groundhog Day every day with the trend and I hope when I have my NHS test next year the diabetic nurse can shed some light on it as I will have the proof and figures to show.
Apologies as the minor update has become a major one, good luck to all over the Christmas period and lay off the mince pies if you can.

 

[ChrisT2]

This thread seems to be my ongoing diabetic blog but thought I should keep it going if only for my own record and in the hope it may be of some use to others. It has now been almost a year since trying to do something positive in managing my T2 diabetes, mainly through diet as I have always been reasonably active and through the technology available to see what is going on specifically with my blood sugar.
Last blood test measured me at a HbA1c of 41 which I was well pleased with as my previous annual results with my "couldn't care less" attitude to my condition was in the region of 60-80 and frequently chastised by my Diabetic Nurse on my annual MoT. It has to be said that through the help and encouragement of this forum and the useful information on the internet ( filtering out some of the not so helpful) has raised my knowledge and awareness to try and improve things. To be totally honest I was more than a bit scared of things getting worse as I got older and the threat of having to go on insulin in order to manage things.
The attempts at low carb have really been the magic bullet for me. By focusing on carbs and reducing my carb intake wherever possible I have lost about 3.5 stone (22kg) in a year, my blood pressure is now within the good range for once and my blood glucose is significantly lower. I am certainly way above the low carb , ketogenic levels which could possibly take me into even better lows but I know that is not achievable given my circumstances. That is not an excuse but sadly for me a reality, however it has certainly achieved results to which I am grateful.
It is not easy trying to live an average family life and get carb levels in the the 30g per day mark. On a good day I can get my cabs below 50g but on the other side of the coin I can only achieve around 100g or even more.

I am still frowned upon by close family, relations, friends and work colleagues for ditching the pies, chips, bread, porridge, pasta, potatoes, chocolate, pastries etc but I cannot give up the occasional chinese take-aways or friday night beers once in a while. On the other hand bacon and egg or full fat yoghurt for breakfast has been manna from heaven and steak and meat for dinner a real bonus. For those of you who can maintain those ketogenic levels then my hat off to you! One day I hope to join your club.

I was slightly disappointed at my last diabetic review that my lower carb diet admission was dismissed as a bad choice by the nurse despite her agreeing that the weight loss and blood pressures were a significant improvement. I really wanted some advice as to where to go in order to further reduce meds if my blood sugars were improving but it seemed that I should keep taking the tablets and not disturb the status quo. Also I felt I was really only attending a "box ticking" exercise in order to show that my GP practice were paying lip service to long term care commitments. Sadly no discussion was encouraged in the brief appointment timeslot but that is only my perception.

Looking back though I should be thankful that the previous measurements and chastisements of the yearly reviews spurred me into some action even though it meant going it alone and seeking information elsewhere. My advice to anyone would always be, think about the carbohydrates you eat, forget the calories, and if you can afford it invest in a continuous glucose monitor for a month or so and see what is good for you and what sends your blood sugars into lower earth orbit. It is not easy but by the same token it is not too difficult either. If I can do it a anyone can.

 

[lovinglife]

Great post @ChrisT2, amazing results well done

 

[Resurgam]

@ChrisT2 I find it almost bewildering that people will see improvements in just about all aspects of our lives, but then disparage the way they were achieved because it goes against accepted belief and 'wisdom'.
I got a full on 'come in to discus medication to manage your cholesterol and type 2 ' phone call a while ago - and it took over ten minutes to get to the actual results of the test - an alteration of 0.1 in cholesterol - an increase, yes - but probably down to me losing weight using shakes and a small meal for 2 months. Once that came to light the idea was dropped rather quickly, but until then it was firmly on the tracks and full steam ahead.

 

[KennyA]

This thread seems to be my ongoing diabetic blog but thought I should keep it going if only for my own record and in the hope it may be of some use to others. It has now been almost a year since trying to do something positive in managing my T2 diabetes, mainly through diet as I have always been reasonably active and through the technology available to see what is going on specifically with my blood sugar.
Last blood test measured me at a HbA1c of 41 which I was well pleased with as my previous annual results with my "couldn't care less" attitude to my condition was in the region of 60-80 and frequently chastised by my Diabetic Nurse on my annual MoT. It has to be said that through the help and encouragement of this forum and the useful information on the internet ( filtering out some of the not so helpful) has raised my knowledge and awareness to try and improve things. To be totally honest I was more than a bit scared of things getting worse as I got older and the threat of having to go on insulin in order to manage things.
The attempts at low carb have really been the magic bullet for me. By focusing on carbs and reducing my carb intake wherever possible I have lost about 3.5 stone (22kg) in a year, my blood pressure is now within the good range for once and my blood glucose is significantly lower. I am certainly way above the low carb , ketogenic levels which could possibly take me into even better lows but I know that is not achievable given my circumstances. That is not an excuse but sadly for me a reality, however it has certainly achieved results to which I am grateful.
It is not easy trying to live an average family life and get carb levels in the the 30g per day mark. On a good day I can get my cabs below 50g but on the other side of the coin I can only achieve around 100g or even more.

I am still frowned upon by close family, relations, friends and work colleagues for ditching the pies, chips, bread, porridge, pasta, potatoes, chocolate, pastries etc but I cannot give up the occasional chinese take-aways or friday night beers once in a while. On the other hand bacon and egg or full fat yoghurt for breakfast has been manna from heaven and steak and meat for dinner a real bonus. For those of you who can maintain those ketogenic levels then my hat off to you! One day I hope to join your club.

I was slightly disappointed at my last diabetic review that my lower carb diet admission was dismissed as a bad choice by the nurse despite her agreeing that the weight loss and blood pressures were a significant improvement. I really wanted some advice as to where to go in order to further reduce meds if my blood sugars were improving but it seemed that I should keep taking the tablets and not disturb the status quo. Also I felt I was really only attending a "box ticking" exercise in order to show that my GP practice were paying lip service to long term care commitments. Sadly no discussion was encouraged in the brief appointment timeslot but that is only my perception.

Looking back though I should be thankful that the previous measurements and chastisements of the yearly reviews spurred me into some action even though it meant going it alone and seeking information elsewhere. My advice to anyone would always be, think about the carbohydrates you eat, forget the calories, and if you can afford it invest in a continuous glucose monitor for a month or so and see what is good for you and what sends your blood sugars into lower earth orbit. It is not easy but by the same token it is not too difficult either. If I can do it a anyone can.

Really well done. You've had to deal with a less than helpful and supportive environment, and sticking to it in the face of that deserves credit. A lot of people simply won't want to do the hard yards that you've done.

And of course, you've succeeded, and visibly so, which will annoy some. Managing your diabetes by yourself? Whatever next.

Keep it up.

 

[ChrisT2]

@ChrisT2 I find it almost bewildering that people will see improvements in just about all aspects of our lives, but then disparage the way they were achieved because it goes against accepted belief and 'wisdom'.
I got a full on 'come in to discus medication to manage your cholesterol and type 2 ' phone call a while ago - and it took over ten minutes to get to the actual results of the test - an alteration of 0.1 in cholesterol - an increase, yes - but probably down to me losing weight using shakes and a small meal for 2 months. Once that came to light the idea was dropped rather quickly, but until then it was firmly on the tracks and full steam ahead.

Firstly thanks to all for kind words and encouragement, that is what keeps me going when things go a bit astray. I certainly wished I could get similar encouragement and advice from my health centre and I am envious of your situation. I even had to ask specifically for my bloods to not only include my HbA1c but also my lipid/cholesterol profile as at my last test it was only my BG they measured. I had to explain that as I had changed my diet to a lower carb one I was very much aware that I was no longer eating all the low fat diet products but full fat, mainly dairy products (cheeses, yogurts, cream etc) and I wanted to know what that had done to my cholesterol levels as several years ago I was also chastised about and put on the dreaded statins. Thankfully all the cholesterol markers had gone in the right direction which surprised even me as the bad cholesterol was down and the good cholesterol gone up.

Of course some people are never satisfied and that includes me as I am aware that my recent results are only a flash in the pan and done whilst still on medication. My secondary goal is possibly to come off the meds but I think that is a brick wall ahead. Certainly my GP practice don't see reducing meds as a policy. I have several friends trying to drop the statins but meeting refusal as statins are regarded as a good thing in old age. For me I would love to drop or reduce the metformin but with no discussion on diabetes management that is probably just a pipe dream. Also reading up on the guidelines it appears that a reading of less than 48 mmol/mol is only an indication of good control and not one of cure or remission which in reality is what I am aiming for but that may be un-realistic. Overall I am happy with what I have achieved and I am also pleased that with the technology available I can choose what I eat and what is best for my body and Blood sugar. I don't wish to rant and rave about failings in the health system but I know it sometimes seems that way.

Anyway thanks once again to all, good luck with your own personal battles and keep at it as it is a long journey with many pitfalls but also some successes hiding somewhere, just got to find them.

 

[KennyA]

If you're interested in remission etc this might be something useful to read. The problem is there are conflicting views on what it is, and in the UK the prospect of being paid via the Quality and Outcomes Framework for achieving something called "remission" tends to skew decisions.

Consensus report: definition and interpretation of remission in type 2 diabetes - Diabetologia

Improvement of glucose levels into the normal range can occur in some people living with diabetes, either spontaneously or after medical interventions, and in some cases can persist after withdrawal of glucose-lowering pharmacotherapy. Such sustained improvement may now be occurring more often...

link.springer.com

If applied to my own case I could have technically been in remission (under 48 mmol/mol) while still having a boat load of diabetic symptoms.

It's not the definition that was used and I think is still used by my GP practice - one complete 12 month period of normal blood glucose measurements throughout that period without any glucose-lowering medication in that time.

 

[debs248]

Following with interest as I am at the start of a similar journey.

My aim is to manage BS through diet if possible, and if my body won't play along, take Metformin only.

This fits in with the current orders from my GP surgery (they really don't do discussion or mutual agreement), well they said nothing about diet, but I've been low carbing and intermittent fasting for nearly 10 years anyway. They demand I eat an extra meal in order to take meds twice a day but I'm experimenting with timings to see if that's really necessary.

Great work so far, don't be disheartened by patchy support from health professionals who should know better!