Desperate to de-drug after years of Type 2. GP unsympathetic.

[Rosie9876]

I had uncontrolled diabetes for many years, but for the past 8 months, I have been on a low carb diet and reduced my HbA1c significantly from a high of 88mmol/mol. Unfortunately, I also have peripheral nephropathy, which the nurse never recognised or referred me about, only looking for total lack of sensation, huge uric acid kidney stones (being dealt with, with several surgeries), painful burning urine, severe albumin in my urine (so far undiagnosed) and recently worsening diabetic maculopathy, which I'm told could be a result of rapid improvement.

Otherwise, I am on the mend . I am not overweight, in fact have very little body fat apart from at my waist. I guess I'm what's called a TOFI. Libre is now estimating my A1c at 43mmol/mol (6.1%). Even if it's inaccurate, it must be around 50, as my stats are much better than they were when I tested 57 in mid-May, up after a bad 2 months. My 7-day average glucose is 5.9, down from a 90-day average of 7.1.

I am on Metformin, Dapagflozin, Atorvastatin, Ramipril and Bisoprolol. I have asked my GP practice several times to be taken off the Dapagflozin and to have the Atorvastatin reduced from 40mg to 20mg. They talk to me like "Do you want to kill yourself?" Of course I don't, but nor do I understand why I am on medication which was prescribed for uncontrolled diabetes, and that has questionable side-effects. The dapa gives me constipation, so I go off it intermittently anyway, to relieve it. I am also wondering if it is responsible for the horrible burning sensation of my urine. Statins are now controversial, with uncertainty whether the relationship between LDL cholesterol and heart disease is causal or not, and they may be responsible for rise in glucose, amongst other things, including weakened muscles, which I have.

I did have a heart attack some time ago, but that was shortly after my husband died in unbearable circumstances and my stress and grief were over the roof. Only recently am I beginning to come to terms with it. I want to pull myself together, but face so many obstacles. One is the unwillingness of the GP practice and the NHS in general to consider that they need to re-think their approach to diabetes. If they were wrong about margarine, skimmed milk and recommending 6 slices of bread per day, then maybe they are wrong about diabetes treatment. I would change practice, but it could well be "out of the frying pan into the fire". I'm even afraid to criticise them, lest they remove me as a patient. Any thoughts? Shared experience? TIA

 

[debs248]

I don't want to wade in here and give you advice that may be inappropriate. I am very "fighty" and happy to argue with doctors but aware that that may not be ideal behaviour.

It is always your right to decide whether or not to take a drug but if you can't get the medical team on side you may lose support in other areas.

I doubt many HCPs will listen let alone consider updating their knowledge. I have a perhaps prejudiced view that those with open, enquiring minds don't usually end up working in GP surgeries. So I query outdated or unhelpful advice but don't pursue it, just go home and do what's best for me.


Hang in there, you've made so much progress in difficult circumstances already.

(Mod edit to comply with forum ethos)

 

[Rosie9876]

I am normally fighty, but I think it would be the wrong thing to do with my GP practice, as you suggest. They've now relegated my diabetes treatment to an in-house pharmacist, who is likely to be biased in favour of medication, and my request was in a phone appointment.

I just go off the dapagliflozin long enough to regularise my bowel movements, but no, the burning hasn't stopped or even subsided. It's been noticeable since early May. I've repeatedly tested negative for UTI, but had an extended course of antibiotics anyway, and I think symptoms would be different if it were thrush. Thank you so much for your feedback and for the encouragement. I'm feeling very down about it, as my post suggests, so it's much appreciated. Good luck with your diabetes team.

 

[ianf0ster]

I am/was a skinny Type 2 diabetic so not the usual patient.
I had a 3x CABG (Coronary Artery Bypass Graft) just before Xmas 2017 and despite the hospital struggling to raise my blood pressure and reduce my heart rate, I was put on a standard mix of 5 drugs which I was told were (then) prescribed for all cardiac patients.
The problem being that 2 of the 5 were for reducing Blood Pressure (and mine was already low - an adaptation to my blocked arteries) and another was Atorvastatin, which although less side effects than the Simvastatin I'd stopped taking some years earlier, still caused me some brain fog.

After I was diagnosed with T2D I had a rethink about both the medications and diet I had been advised. I slowly came off all the heart meds apart from low dose Aspirin - I know I've had 'thick blood' after high altitude Ski holidays, so accepted the risks of the Aspirin. I discovered, by blood glucose testing, That the Low Fat High Carb diet I'd been following (on medical advice) for over 10 years was probably the cause of my T2D and that statins were probably making it worse (admitted by the Pfizer website), but denied by my GP.

I have been in T2D remission for over 5yrs now - controlled by my low Carb way of eating alone. My GP has accepted not to pressure me on Statins since even he seems to agree that my risk of a heart attack is lower in remission, than they would be if I followed the standard advice and remained diabetic.

* Edited to comply with forum rules, spelling and clarity.

 

[lovinglife]

I’m sorry for your troubles, but be proud of yourself after what you’ve achieved this last 8 months. It’s always difficult getting back on the wagon and sticking to it, but your results are showing that it works can be a great motivator.

I’ve no experience of dapaflozin but it may be that it is still helping you get the numbers you’re seeing now? I was on insulin, then Gliclizide maximum dose (I’ve been on Metformin for many many years before T2 for something not related to diabetes and I tolerate it well so still take it) I did get off all those medications but not without a very very strict low carb diet no cheating whatsoever & the full support of my GP and it took a long time. I still have to be very strict with my carbs at no more than 20g carb a day.

I have a liver condition that I cannot take statins (which taking statins brought to light) so was only on them a matter of weeks

I’ve always been lucky to have supportive HCPs in the 16 years of being T2, some more openly than others. My current DSN (who I’m very lucky to have as not many GP surgeries have a nurse who is a fully trained Diabetic Specialist) is very on board with my keto lifestyle. Her words to me were that her most successful T2 patients in the practices she works in all follow a low carb lifestyle of some sort. Those HCPs who have been less open still supported me in my choices. I found letting them have their say & then politely discussing and asking if I could try A B or C and having very good reasons and evidence for asking & being prepared to compromise slightly worked much better than demanding or refusing outright

What we have to remember is HCPs in the NHS have to work within the NICE guidelines and the NICE guidelines are all about medication and nothing about low carb. Many HCPs may disagree with what those guidelines say but there is only so far they can step out of them without getting themselves into trouble. I have no problem bashing the guidelines, they are outdated and need a overhaul, but I sympathise with those that have to work within those guidelines & respect their choices of how far they are prepared to step outside them.

I fully understand that people's experiences with HCPs vary, there’s always good & bad in every profession but those who've had a bad experience shouldn't assume that other HCPs will behave in the same way. It’s wrong to assume that anyone working in a GP surgery is there because it’s an easy option and they don’t have to keep up with training and new practices & protocols. I know my surgery closes for 4hrs every other Thursday for staff training & individual staff are often on outside training courses.

 

[Nicola M]

Just a reminder to all that forum rules https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/ don't allow us to diagnose or give medical advice or tell people to disregard the opinions of their HCPs. What we can do is describe our own experiences and give information supported by reputable links or by our own experiences.

But please remember, when someone describes their own experiences, it doesn't necessarily mean that what they did will work for someone else in superficially the same position, and it could be dangerous. Human bodies are remarkably complex organisms which can react to different drugs in different ways.

 

[Rosie9876]

I am/was a skinny Type 2 diabetic so not the usual patient.
I had a 3x CABG (Coronary Artery Bypass Graft) just before Xmas 2017 and despite the hospital struggling to raise my blood pressure and reduce my heart rate, I was put on a standard mix of 5 drugs which I was told were (then) prescribed for all cardiac patients.
The problem being that 2 of the 5 were for reducing Blood Pressure (and mine was already low - an adaptation to my blocked arteries) and another was Atorvastatin, which although less side effects than the Simvastatin I'd stopped taking some years earlier, still caused me some brain fog.

After I was diagnosed with T2D I had a rethink about both the medications and diet I had been advised. I slowly came off all the heart meds apart from low dose Aspirin - I know I've had 'thick blood' after high altitude Ski holidays, so accepted the risks of the Aspirin. I discovered, by blood glucose testing, That the Low Fat High Carb diet I'd been following (on medical advice) for over 10 years was probably the cause of my T2D and that statins were probably making it worse (admitted by the Pfizer website), but denied by my GP.

I have been in T2D remission for over 5yrs now - controlled by my low Carb way of eating alone. My GP has accepted not to pressure me on Statins since even he seems to agree that my risk of a heart attack is lower in remission, than they would be if I followed the standard advice and remained diabetic.

* Edited to comply with forum rules, spelling and clarity.

Very well done on over 5 years remission with diet alone!!! I'm wondering whether we TOFIs are not as rare as supposed, maybe especially in Asian populations.

 

[Rosie9876]

I’m sorry for your troubles, but be proud of yourself after what you’ve achieved this last 8 months. It’s always difficult getting back on the wagon and sticking to it, but your results are showing that it works can be a great motivator.

I’ve no experience of dapaflozin but it may be that it is still helping you get the numbers you’re seeing now? I was on insulin, then Gliclizide maximum dose (I’ve been on Metformin for many many years before T2 for something not related to diabetes and I tolerate it well so still take it) I did get off all those medications but not without a very very strict low carb diet no cheating whatsoever & the full support of my GP and it took a long time. I still have to be very strict with my carbs at no more than 20g carb a day.

I have a liver condition that I cannot take statins (which taking statins brought to light) so was only on them a matter of weeks

I’ve always been lucky to have supportive HCPs in the 16 years of being T2, some more openly than others. My current DSN (who I’m very lucky to have as not many GP surgeries have a nurse who is a fully trained Diabetic Specialist) is very on board with my keto lifestyle. Her words to me were that her most successful T2 patients in the practices she works in all follow a low carb lifestyle of some sort. Those HCPs who have been less open still supported me in my choices. I found letting them have their say & then politely discussing and asking if I could try A B or C and having very good reasons and evidence for asking & being prepared to compromise slightly worked much better than demanding or refusing outright

What we have to remember is HCPs in the NHS have to work within the NICE guidelines and the NICE guidelines are all about medication and nothing about low carb. Many HCPs may disagree with what those guidelines say but there is only so far they can step out of them without getting themselves into trouble. I have no problem bashing the guidelines, they are outdated and need a overhaul, but I sympathise with those that have to work within those guidelines & respect their choices of how far they are prepared to step outside them.

I fully understand that people's experiences with HCPs vary, there’s always good & bad in every profession but those who've had a bad experience shouldn't assume that other HCPs will behave in the same way. It’s wrong to assume that anyone working in a GP surgery is there because it’s an easy option and they don’t have to keep up with training and new practices & protocols. I know my surgery closes for 4hrs every other Thursday for staff training & individual staff are often on outside training courses.

Thank you so much for your comments. You've been lucky with your HCPs. I have to admire anyone who chooses medicine as a career, but the NHS could do with better funding and some reform.

I can't see how the dapagliflozin has contributed to my reduced HbA1c. I was prescribed it in July 2024, when my GP was alarmed that my A1c was 85 and wanted to put me on insulin, which I resisted. So instead she added the dapa to my Metformin. It was later, in October 2024, that my hospital found my A1c to be 88 in pre-op testing and cancelled my operation. THAT was my wake-up call. I immediately did independent research and altered my diet to low carb, and made steady progress from that time, with a few glitches. I feel quite stupid to have gone along mindlessly for years with received opinion, when it clearly wasn't working for me.

 

[Tony337]

Hi @Rosie9876
I am soooo lucky to have a surgery that is either 3rd or 6th best in the country as per the CQC.
I'm type 1 of 50 years haven't seen a specialist or DSN in years.
My GP loves my view on diabetes self care the nurses often tell me i know more about diabetes than they do and i rock up at christmas with chocolate for the wonderful ladies on reception who i adore.
At the start of covid i supplied them with fresh milk and they have never forgotten that....

Sounds too good to be true?
It is true and you yourself can check out the performance of your surgery on the care quality commission website.
Bang in your post code and see what options you have ...its that easy.

I have an hba1c of 39 or 5.7 but still make stupid mistakes but have the experience to correct mistakes.
As already pointed out we are all different and wouldn't recommend my way of doing things to anyone but i do have the care and trust of an amazing surgery to call upon.
Please take a look at the CQC website.

The other bit of luck i have is i have access to a fantastic pharmacy too which is also important.

I wish you well

Tony

 

[Jo_the_boat]

Medical advice.... change doctors (surgery).

 

[Michael 1701]

I had lots of problems with medication and doctors. I asked to see the diabetic specialist at my local hospital's diabetic department. They have taken over my treatment and provide recommendations the GPs have to follow.

 

[Rosie9876]

Very well done on over 5 years remission with diet alone!!! I'm wondering whether we TOFIs are not as rare as supposed, maybe especially in Asian populations.

I had lots of problems with medication and doctors. I asked to see the diabetic specialist at my local hospital's diabetic department. They have taken over my treatment and provide recommendations the GPs have to follow.

I had lots of problems with medication and doctors. I asked to see the diabetic specialist at my local hospital's diabetic department. They have taken over my treatment and provide recommendations the GPs have to follow.

You spoke with the hospital's diabetes specialist directly? That's amazing.

 

[Michael 1701]

Your hospital should have an e-Referral service. Your doctor or diabetes nurse can refer you too - they can't reasonably refuse.