GP refusing to stop my SGLT-2 medication

[Oldvatr]

Might be too low depending whether hypos lower that number or not. And he’s not suggesting you stop that but using the threat of withdrawal to make you take the sglt2. Also how does hbA1c relate to withdrawing glic only if you refuse the sglt2? Two different issues imo.

Not to mention as your diet of choice is low carb and sglt2 don’t sit well with that.

You speak as if your dr has no prescribing discretion at all - which simply isn’t true. Yes he has some limitations but what you are describing does not fall within that typically.

Yeah, your dr’s own opinions. And he’s gaslighting you by dismissing your concerns and issues


Honestly @Oldvatr I’m surprised. You’ve always had great reasoned postings but here you seem to be excusing terrible care in a way you never would if the posts had someone’s name on it other than your own. It’s your care and your choice but maybe reread your posts and think how you’d advise someone saying the same.

I have in many instances pointed out to others that they have the right to refuse treatment. That is the right I am considering exercising now for myself. My GP has used this same ploy before on me since it is the only lever he can pull. He did the same last year when I queried the 56 as he said at the time (53 as in NG28)

What concerns me, as I pointed out earlier in his thread, the drug trial that he is so excited about was a meta study paid for, performed, and marketed as a miracle drug by the pharma indiustry, The 33% inprovement that my GP quoted is relative Risk, and is a ploy used nowadays to inflate the results by a factor of about 10x. The actual number to treat is 6 for this med. That means that of 6 people on full strength dose for a long time, then 1 may be saved a CVD event and 5 will be taking the drug to no benefit (and may themselves have a CVE). we saw a similar claim made for statins, and the 10 year follow up now shows the number of actual events is not backing up those claims and is comensurate with those of the general public..

 

[ajbod]

It looks to me that the Pharmaceutical companies are realising that the Statin bandwagon is starting to break down. And so they are pushing to make the SGLT2 drugs the new cash cow.

 

[Oldvatr]

It looks to me that the Pharmaceutical companies are realising that the Statin bandwagon is starting to break down. And so they are pushing to make the SGLT2 drugs the new cash cow.

Indeed it is being prescribed to treat heart failure, athersclerosis, kidney damage Alzheimers, and general demntia, It was looked at to see if it helped treat cancer, but they ended up with the opposite effect. It seems that Dapagliflozin is associated with increased risk of breast cancer, bladder cancer, and also acute kidney failure (AKI).

My heart consultant wants me on it to reduce my heart failure, but then he let slip that my real problem is not my heart but the nerves that fire the contractions being damaged. He agreed that the med will do nothing to retime my heart, but will reduce blood pressure which is why he wants me to continue with it. That and the 33% reduction being claimed for heart failure patients (but my heart is not at fault) My GP wants me on it to help my failing kidney function, but my attention is drawn to the increasing risk of AKI. It is contraindicated in cases of CKD stage 3 and 4 . So all in all I am not impressed.

 

[HSSS]

I have in many instances pointed out to others that they have the right to refuse treatment. That is the right I am considering exercising now for myself. My GP has used this same ploy before on me since it is the only lever he can pull. He did the same last year when I queried the 56 as he said at the time (53 as in NG28)

What concerns me, as I pointed out earlier in his thread, the drug trial that he is so excited about was a meta study paid for, performed, and marketed as a miracle drug by the pharma indiustry, The 33% inprovement that my GP quoted is relative Risk, and is a ploy used nowadays to inflate the results by a factor of about 10x. The actual number to treat is 6 for this med. That means that of 6 people on full strength dose for a long time, then 1 may be saved a CVD event and 5 will be taking the drug to no benefit (and may themselves have a CVE). we saw a similar claim made for statins, and the 10 year follow up now shows the number of actual events is not backing up those claims and is comensurate with those of the general public..

So you have multiple issues with the dr, you admit he ignores NICE, pushes a biased study and blackmails you - yet you blame the ccg (icb)

 

[Oldvatr]

So you have multiple issues with the dr, you admit he ignores NICE, pushes a biased study and blackmails you - yet you blame the ccg (icb)

He is following NICE. His offer to with draw my med is entirely according to NICE. His insistance that I continue the SGLT2 med is the puzzle. The CCG decide what meds can be prescribed and what support should be given to patients in the way of courses and seminars etc. They control the aspects of care and allocate funding, so yes. in a way they can control what choices a GP can offer, For instance they defined what test meters will be offered to T1D based on price, and I had to change my meter too as a direct result of CCG dictat.

My CCG is still active and provides the Medication Formulary to be used by GPs under their watch. It is peculiar to our county CCG and they write and update it in line with their development plan. (I am not going to link it since it identifies my location) There is a Prescribing Forum at county level who make the plan, and then local prescribing and therapeutics sub comnittees providing the advice to the GP practices. What may have changed is the funding control which may have gone back to County Level like the hospital trusts. It used to be the CCG that allocated funding.


Looking at the Formulary, the recent update is to recommend SGLT2 meds for all diabetic with an eGFR <60 (stage 1) based on new evidence (that 2022 study report I bet) So Yes there is a dictat from above.

Hey The Formulary is advocating Low Carb diet under the NHS And Dr David Unwins method. Including those infamous infographics and the full report on their website. all is not lost.

 

[Outlier]

What an infuriating set of circumstances for you to have to deal with, especially when you are managing quite a lot of ill-health. So often we are targeted when we are feeling less than 100% as if those responsible can identify we are "weak". All power to you. But it is of concern in the macro as well as the micro, as not everyone has the intellect and the enquiring mind to delve beneath the surface.

Knowledge is power. What you are finding out now will help many people, but it's a shame we have to be our own experiment. It would be so comforting to be able to hand our health responsibilities over to our professional healthgivers, but most unwise.

 

[Oldvatr]

This is what advice my CCG is giving to their GPs in relationship to their PWD
"
Blood glucose control
The VADT, ACCORD and ADVANCE trials show that tight control of blood glucose in long standing Type 2 diabetics (reducing HbA1c to below 53mmol/mol or 7%) may be harmful.
• Involve the person in decisions about their individual HbA1c target which may be above the general target of 48mmol/mol or 6.5% especially in long standing diabetes.
• Offer lifestyle advice and medication to help achieve and maintain the HbA1c target.
• Inform patients with a higher HbA1c that any reduction towards the agreed target is advantageous to their health.
• Avoid pursuing highly intensive management to levels of <48mmol/mol or 6.5%.
♦ Self-monitoring of blood glucose should be offered to a patient newly diagnosed with T2DM only as an integral part of his/her self- management education. Its purpose should be discussed and there should be agreement how the results should be interpreted and acted upon."
I think it is clear why my GP has changed his approach to my care, It is coming direct from the CCG guidelines that govern his Practice..

 

[HSSS]

This is what advice my CCG is giving to their GPs in relationship to their PWD
"
Blood glucose control
The VADT, ACCORD and ADVANCE trials show that tight control of blood glucose in long standing Type 2 diabetics (reducing HbA1c to below 53mmol/mol or 7%) may be harmful.
• Involve the person in decisions about their individual HbA1c target which may be above the general target of 48mmol/mol or 6.5% especially in long standing diabetes.
• Offer lifestyle advice and medication to help achieve and maintain the HbA1c target.
• Inform patients with a higher HbA1c that any reduction towards the agreed target is advantageous to their health.
• Avoid pursuing highly intensive management to levels of <48mmol/mol or 6.5%.
♦ Self-monitoring of blood glucose should be offered to a patient newly diagnosed with T2DM only as an integral part of his/her self- management education. Its purpose should be discussed and there should be agreement how the results should be interpreted and acted upon."
I think it is clear why my GP has changed his approach to my care, It is coming direct from the CCG guidelines that govern his Practice..

 

[Oldvatr]

We all know that NG28 governs what GP's do for T2D in adults. It is only guidelines, but somehow that is immaterial - it is what the practice is contracted to deliver. The NG28 guidelines also say that patients should be involved in the discussion. I was involved in a discussion on HbA1c. I was given a choice of treatment to acheive the recommended level for HbA1c. Next time make it >56, or stop hypoglycemic medication and let nature take its course with the standard level of 48. My choice. Both targets are viable.

I am a long term diabetic of over 30 years since DX. I need my glic since remission is unlikely for me although I have been close to acheiving it for a short while and non diabetic for nearly 8 years now. But I only control it, and can easily return to full diabetes again if I am not watchful. The Beast is still lurking.

I will keep my GP since his change in attitude is systemic and reflecting recent changes in NHS guidelines. Now I have seen what the CCG lays on the practice, I can see that he has been instructed to follow their routemap, and I may plot a different course. My choice.

 

[Oldvatr]

One last flicker. The use of SGLT2 with Low Carb diets. It is indeed contraindicated, but that is based on one single event where a woman who was actually Type 1 diabetic suffered an euglycemic episode of DKA. so in my opinion this does not necessarily prove association of euDKA with SGLT2 since this med is also contraindicated for T1D. And T1D with DKA is a known side effect.

A few days before admission, her bgl was measured at 34.8 mmol/l sometime after admission to A&E her bgl was measured at 10.8 mmol/l hence the euglycemic diagnosis.
She was only on Day 6 of the Low Carb diet when admitted.

The report does not discuss the posssibility of intervention while being admitted or at what stage the blood was drawn. However, the ketone levels were only 4 mmol/l which would not normally cause acidosis.

There are other reports of T1D users having adverse events and it has been found to cause DKA if insulin is lowered or withdrawn too quickly, It is however now being offered to T1D but no trials have been done so it seems to be Off Label use. The FDA has not approved it for use with T1D.

Note: as a T2D on orals this does not apply to my case, but I include it as a coda for general info.

 

[Oldvatr]

OK think I understand the DKA aspect. Most of the info on SGLT2 meds harps on about excretion of glucose in the wee as the primary modus operandi of this class of drugs. However, what is known but not said is that the med increases glucagon, which in turn lowers insulin production, and induces ketosis by lipolysis. So anyone with insulin deficiency may find their insulin dropping and their ketones rising (like my 8 mmol.l) and this can lead to DKA since the glucose in the blood is not being used or stored since the body is turning into a fat burner instead. The med itself overrides the body mechanisms and hence the ketosis will remain as long as the med is in control. As the med passes its half life, the body will normalise and store glucose away as normal so the bgl levels drop again and the ketones also drop. So that T1D patient probably did have a full DKA but by the time they got her into A&E and sorted it out her bloods were returning to her residual state where she probably had enough self propelled insulin to recover to the levels they measured.

There is another case of euDKA on this drug. Again it was someone who needed continued post release insulin therapy after the event since they too were found to be insulin deficient

So it does seem that when I felt a bit off and measured my ketones at 4mmol/l then my 8mmol/l then I was on my way to la la land but the drug dissipated in time thus giving a miracle recovery from this miracle drug. I now have no doubts about stopping it. Il ne passeront pas!

 

[HSSS]

The use of SGLT2 with Low Carb diets. It is indeed contraindicated, but that is based on one single event where a woman who was actually Type 1 diabetic suffered an euglycemic episode of DKA. so in my opinion this does not necessarily prove association of euDKA with SGLT2 since this med is also contraindicated for T1D. And T1D with DKA is a known side effect.

There have been cases reported in this forum of it in type 2 so more than one case.

 

[Oldvatr]

There have been cases reported in this forum of it in type 2 so more than one case.

I am talking about events that have an investigation on them and reported in archived media. The FDA keeps a record of USA events. Of the cases reported here in the forum, one I know was reported to the Australian authority, but unless monitored at the time by medical staff then they are, as we say, anecdotal. The UK yellow card system is also anecdotal. We do have it listed as a known side effect, but no one in the UK seems to be looking into the causes. But if the cause is linked to insulin insufficiency, then indeed one could expect some T2D to experience the effect. I personally experienced a rise in ketones myself. The big problem is once again, T2D do not get tested for c=peptide, so none of us knows if this med is safe for us.

 

[HSSS]

so none of us knows if this med is safe for us.

Which is why euDKA is listed as a side effect, and low carb contraindicated. Few side effects happen to everyone and if it happened to too many then it wouldn‘t be licensed. Why risk it imo? Either don’t take the med or don’t go low carb if you do. Few type 2 have the means to test ketones or think to do so when bgl is not too high. Easily missed.

 

[Ceppo]

What sort of strength are you looking at for your D3 Oldvatr?

Have a look at pharma nord who have various D3 capsules and K2. Not the cheapest though.

 

[AndBreathe]

Have a look at pharma nord who have various D3 capsules and K2. Not the cheapest though.

I'm very happy with the ones already use, and the medics are very happy with my levels on them. I'm monitored at least twice a year.