GP refusing to stop my SGLT-2 medication

[Oldvatr]

I have just had my annual MOT at the surgery with my GP. One of the things we discussed was my desire to be taken off dapagliflozin since I was getting several unwanted side effects.

I have noticed the following
1) Severe and painful constipation. Possible outcome = anal fissures
2) extreme flatulence
3) raised ketones (measuring between 4 and 8 mmol/l on the dipstix (Non keto diet)
4) nappy rash in the genital area
5) blood in urine (never had that before)
6) raised cholesterol
7) possibly worsening hyponatremia or hyperkalemia, although i am on other meds that do this too.
8) constantly dripping runny nose .

All these are side effects associated with SGLT-2 meds and I am not happy.

GP prescribes a topical steroid cream for thrush, and reduces my water tablet dose.. Replaces my ketostix.

GP says if I stop taking the SGLT-2 med, then he will withdraw my gliclazide and stop supporting my meter test strip habit. I smiled sweetly and reminded myself who makes up my dosette boxes.
He also wants my next HbA1c to be above 56 (it was 46 this year) in line with NICE guidelines.

I did also discuss the drug trial that he quoted me regarding this med being a miracle drug for all my ailments. I did point out that the pharma industry has a vested interest in those trials, which he says he does not believe.

When I got home, I reviewed that report again and found this in the study report text:
"

Conflict of interest statement​

Funding Support and Author Disclosures The DAPA-HF trial was funded by AstraZeneca. Dr McMurray is supported by a British Heart Foundation Centre of Research Excellence Grant RE/18/6/34217. Dr Docherty has received fees from AstraZeneca (sponsor of DAPA-HF) for his involvement in the DAPA-HF trial to his employer, The University of Glasgow; and has received personal fees from Eli Lilly outside the submitted work. Dr Jhund has been an employee of AstraZeneca and Novartis; has received grants and personal fees from Boehringer Ingelheim; has received personal fees from Cytokinetics and Vifor Pharma outside the submitted work; and is the director of Global Clinical Trials Partners Ltd. Dr Petrie has received fees from AstraZeneca and Eli Lilly during the conduct of the study; and has received personal fees from Novo Nordisk, AstraZeneca, NAPP Pharmaceuticals, Takeda Pharmaceutical, Alnylam, Bayer, Resverlogix, and Cardiorentis; and has received grants and personal fees from Boehringer Ingelheim and Novartis outside the submitted work. Dr Inzucchi has received personal fees from AstraZeneca during the conduct of the study; and has received personal fees from AstraZeneca, Boehringer Ingelheim, Merck, VTV Therapeutics, Sanofi/Lexicon, and Novo Nordisk outside the submitted work. Dr Kober has received grants from AstraZeneca to the institution for participation in the DAPA-HF trial steering committee during the conduct of the study; and has received personal fees from AstraZeneca and Novartis outside the submitted work. Dr Kosiborod has received grants and personal fees from AstraZeneca and Boehringer Ingelheim; and has received personal fees from Sanofi, Amgen, Novo Nordisk, Merck, Eisai, Janssen, Bayer, GlaxoSmithKline, Glytec, Intarcia, Novartis, Applied Therapeutics, Amarin, and Eli Lilly outside the submitted work. Dr Martinez has received personal fees from AstraZeneca during the conduct of the study. Dr Ponikowski has received personal fees and fees to his institution from participation as an investigator in clinical trials from AstraZeneca during the conduct of the study; and has received personal fees from Boehringer Ingelheim, Servier, Novartis, Berlin-Chemie, Bayer, Renal Guard Solutions, Pfizer, Respicardia, Cardiorentis, and Cibiem; and has received grants, personal fees, and fees to his institution from Impulse Dynamics; and has received fees to his institution from Vifor, Corvia, and Revamp Medical outside the submitted work. Dr Sabatine has received grants and personal fees from AstraZeneca during the conduct of the study; and has received grants and personal fees from Amgen, Intarcia, Janssen Research and Development, Medicines Company, MedImmune, Merck, and Novartis; and has received personal fees from Anthos Therapeutics, Bristol-Myers Squibb, CVS Caremark, DalCor, Dyrnamix, Esperion, IFM Therapeutics, Ionis; and has received grants from Daiichi-Sankyo, Bayer, Pfizer, Poxel, Eisai, GlaxoSmithKline, Quark Pharmaceuticals, and Takeda outside the submitted work; and is a member of the TIMI Study Group, which has also received institutional research grant support through Brigham and Women's Hospital from Abbott, Aralez, Roche, and Zora Biosciences. Dr Bengtsson has received personal fees from AstraZeneca outside the submitted work. Drs Boulton, Greasley, Langkilde, and Sjöstrand are employees and/or shareholders of AstraZeneca. Dr Boulton is a stockholder of Bristol-Myers Squibb Company. Dr Solomon has received grants from AstraZeneca during the conduct of the study; and has received grants from Alnylam, Amgen, AstraZeneca, Bellerophon, Bayer, Bristol-Myers Squibb, Celladon, Cytokinetics, Eidos, Gilead, GlaxoSmithKline, Ionis, Lone Star Heart, Mesoblast, MyoKardia, National Institutes of Health/National Heart, Lung, and Blood Institute, Novartis, Sanofi Pasteur, and Theracos; and has received personal fees from Akros, Alnylam, Amgen, Arena, AstraZeneca, Bayer, Bristol-Myers Squibb, Cardior, Corvia, Cytokinetics, Daiichi-Sankyo, Gilead, GlaxoSmithKline, Ironwood, Merck, Myokardia, Novartis, Roche, Takeda, Theracos, Quantum Genetics, Cardurion, AoBiome, Janssen, Cardiac Dimensions, and Tenaya outside the submitted work. Dr McMurray has received grants from and his employer has been paid by AstraZeneca, Theracos, and GlaxoSmithKline during the conduct of the study; and he has received grants and his employer has been paid by Novartis, Amgen, Bristol-Myers Squibb, Bayer, Abbvie, Dal-Cor, Kidney Research UK, and Cardurion; and he has received grants from the British Heart Foundation outside the submitted work."

Could not have said it better myself.

 

[lovinglife]

Well I think your GP needs some refresher courses. How horrid for you. My surgery is completely opposite and I know I’m very lucky in that. Why in any situation would he want your HbA1c to be in the 50s doesn’t make sense?? Sending you hugs x

 

[Deleted member 475901]

Sounds like your GP has been reading a different doc?
"
1.6.7 For adults whose type 2 diabetes is managed either by lifestyle and diet, or lifestyle and diet combined with a single drug not associated with hypoglycaemia, support them to aim for an HbA1c level of 48 mmol/mol (6.5%). For adults on a drug associated with hypoglycaemia, support them to aim for an HbA1c level of 53 mmol/mol (7.0%). [2015]
1.6.8 In adults with type 2 diabetes, if HbA1c levels are not adequately controlled by a single drug and rise to 58 mmol/mol (7.5%) or higher:"

Recommendations | Type 2 diabetes in adults: management | Guidance | NICE

www.nice.org.uk

 

[Hopeful34]

How about emailing/taking your gp a copy of the info you found @Oldvatr and changing gp's? Or at the very least seeng another gp to discuss your concerns.

 

[Oldvatr]

Sounds like your GP has been reading a different doc?
"
1.6.7 For adults whose type 2 diabetes is managed either by lifestyle and diet, or lifestyle and diet combined with a single drug not associated with hypoglycaemia, support them to aim for an HbA1c level of 48 mmol/mol (6.5%). For adults on a drug associated with hypoglycaemia, support them to aim for an HbA1c level of 53 mmol/mol (7.0%). [2015]
1.6.8 In adults with type 2 diabetes, if HbA1c levels are not adequately controlled by a single drug and rise to 58 mmol/mol (7.5%) or higher:"

Recommendations | Type 2 diabetes in adults: management | Guidance | NICE

www.nice.org.uk

Indeed. But the 56 is what he asked me to achieve last year too. I am charting my own course, but the penalty may be losing the glic and the test strips. I think this is a target that the CCG feels it needs to adhere to to prevent comeback in the future if there is any legal actions or class actions regarding users of hypoglycemic medications.

 

[Oldvatr]

Well I think your GP needs some refresher courses. How horrid for you. My surgery is completely opposite and I know I’m very lucky in that. Why in any situation would he want your HbA1c to be in the 50s doesn’t make sense?? Sending you hugs x

My GP is actually fairly well clued up but I detect interference from the bean counters and a fear of litigation if they step outside the set guidelines. we live in troubled times. I can see his puppet strings when the light shines - its not his fault. Someone somewhere is being paid handsomly for pulling these strings. We see the same thing with Ozempic, where that Grauniad expose of their slush fund was quite an eye opener.

Revealed: experts who praised new âskinny jabâ received payments from drug maker

Novo Nordisk gave millions to obesity charities and healthcare professionals, including expert who advised Nice

www.theguardian.com

 

[Lainie71]

How about emailing/taking your gp a copy of the info you found @Oldvatr and changing gp's? Or at the very least seeng another gp to discuss your concerns.

Personally I would echo the above as Hopeful34 has suggested. Drs are there to advise not hold you to ransom!

 

[Oldvatr]

Personally I would echo the above as Hopeful34 has suggested. Drs are there to advise not hold you to ransom!

Who is the piper calling the tune? If it is the CCG then all practices in this area will have the same targets and constraints. My GP is strictly following NG28 guidelines at the latest revision so I cannot argue against that since it is in his contract to supply NHS services. I would have to go private to get away from this NHS straitjacket. If I give up the gliclazide, then I immediately fall into the lower (48) bracket. As regards SGLT-2, again it comes down to what the CCG is setting as target and why.

 

[Oldvatr]

GP did finally agree to give me a D3 supplement after several years of asking. But only 3 months worth, and then I have to self fund and unable to get the high strength doses. Better than nothing. I will be increasing my Bitter Melon dose to see if it compensates for not taking the SGLT-2 med.

 

[AndBreathe]

GP did finally agree to give me a D3 supplement after several years of asking. But only 3 months worth, and then I have to self fund and unable to get the high strength doses. Better than nothing. I will be increasing my Bitter Melon dose to see if it compensates for not taking the SGLT-2 med.

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

 

[Oldvatr]

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

Box says 84ug or 1.3U Whatever it is its free so I;m not sending it back. I was using my late wife's D3 and that was 10ug spray.

 

[Oldvatr]

NICE guidance actually says

• If adults with type 2 diabetes achieve an HbA1c level that is lower than their target and they are not experiencing hypoglycaemia, encourage them to maintain it. Be aware that there are other possible reasons for a low HbA1c level, for example, deteriorating renal function or sudden weight loss
  
  
• HbA1c lower than target:
  • if adults with type 2 diabetes achieve an HbA1c level that is lower than their target and they are not experiencing hypoglycaemia, encourage them to maintain it. Be aware that there are other possible reasons for a low HbA1c level, for example, deteriorating renal function or sudden weight loss

Sadly my kidneys are not running at 100%. But he is concerned I am getting hypo's in my sleep. I did point out that my liver is delivering glucose so any low periods will automatically readjust themselves. But in his eyes hypo's equate to fatality or serious brain injury. I suppose in most of his patients that could be relevant seeing as most are on insulin therapy and elderly. He does not have many diet controlled patients it would seem.

Also I am probably one of the few (or the only) T2D that is self testing, and I had to fight the CCG for that one.

 

[HSSS]

Who is the piper calling the tune? If it is the CCG then all practices in this area will have the same targets and constraints. My GP is strictly following NG28 guidelines at the latest revision so I cannot argue against that since it is in his contract to supply NHS services. I would have to go private to get away from this NHS straitjacket. If I give up the gliclazide, then I immediately fall into the lower (48) bracket. As regards SGLT-2, again it comes down to what the CCG is setting as target and why.

of course you can argue against it. It’s the darn guidelines to encourage lower levels and I very much doubt all practices in the ccg are doing this. Do you have any evidence they are? Nor should he be blackmailing you with the glic threat. It doesn’t even make any sense how you stopping sglt-2 should require the removal of another med. Nor do I understand why you’d lower hba1c if you give up glic either. Surely you’d go up not down?

I disagree strongly with your dr being on the ball. Forcing you - with threats - to take a drug you are unhappy with, ignoring NICE guidelines to maintain a lower than target hba1c, and it very much is his choice as not all drs do this. I’d be changing drs at the least and considering a complaint even.

As far as D3 goes have you had levels tested to see where you are at? It’s widely available pretty cheaply and at higher levels than the very low doses you quote. Mine are £8 for 400 tablets at 4000iu (pretty high but below absolute maximum levels) off Amazon. Once at good levels mine are a bit high and something a bit lower but daily is better.

 

[HSSS]

But he is concerned I am getting hypo's in my sleep

I know low hba1c has the concern it’s achieved by means of hypos, particularly in the more mature patients. However it’s an assumption on his part and surely there’d be some signs of hypos in the day if that was likely. And his suspicions or fears are not the same as knowing that’s what’s happening. Nor do they justify forcing you onto an unwanted medication or removing the one you are content with if you don’t do his bidding. That would leave you without medical assistance reducing levels entirely so whilst you wouldn’t be getting hypos you would be getting much higher hba1c and getting sicker.

Have you ever used the libre to establish if hypos are happening and to reassure him? It sounds like he is refusing to accept you are diet assisted (I’m not sure you can claim diet controlled when also taking gliclizide and dapagliflozon.

 

[Oldvatr]

of course you can argue against it. It’s the darn guidelines to encourage lower levels and I very much doubt all practices in the ccg are doing this. Do you have any evidence they are? Nor should he be blackmailing you with the glic threat. It doesn’t even make any sense how you stopping sglt-2 should require the removal of another med. Nor do I understand why you’d lower hba1c if you give up glic either. Surely you’d go up not down?

I disagree strongly with your dr being on the ball. Forcing you - with threats - to take a drug you are unhappy with, ignoring NICE guidelines to maintain a lower than target hba1c, and it very much is his choice as not all drs do this. I’d be changing drs at the least and considering a complaint even.

As far as D3 goes have you had levels tested to see where you are at? It’s widely available pretty cheaply and at higher levels than the very low doses you quote. Mine are £8 for 400 tablets at 4000iu (pretty high but below absolute maximum levels) off Amazon. Once at good levels mine are a bit high and something a bit lower but daily is better.

The CCG are the bean counters. They define clinical practices, what treatments can be offered, and which are being witheld or withdrawn. They decide which drugs will be fully supported, and their own guidance for any alternatvie treatments. for instance, I am on a new heart med. The CCG does not support it because it is expensive, so it has been prescribed by a Consultant at the district Hospital which is controlled by the county health authority, not the CCG.

 

[Oldvatr]

I know low hba1c has the concern it’s achieved by means of hypos, particularly in the more mature patients. However it’s an assumption on his part and surely there’d be some signs of hypos in the day if that was likely. And his suspicions or fears are not the same as knowing that’s what’s happening. Nor do they justify forcing you onto an unwanted medication or removing the one you are content with if you don’t do his bidding. That would leave you without medical assistance reducing levels entirely so whilst you wouldn’t be getting hypos you would be getting much higher hba1c and getting sicker.

Have you ever used the libre to establish if hypos are happening and to reassure him? It sounds like he is refusing to accept you are diet assisted (I’m not sure you can claim diet controlled when also taking gliclizide and dapagliflozon.

It would force me to go keto, which is another thing he is not happy with. My GP used to be very supportive in the days before Covid, but since lockdown he has become much more constrained. So again, this is a sign that the bean counters are taking back control. But he is still supporting my test strips fetish. (and has done for 8 years now)

I am not concerned now, since it is I who has to put the tablet in my mouth. If I forget to do so (24/7) then it is not something he will have knowledge about He ticks his box, the bean counter smiles, and I sort it out my way.

You are correct, I am not diet controlled, but I use diet to control. In other words, I have a fixed medication regime, and I alter my diet to control. My bio with the avatar clearly states tablets (oral) for treatment type.

 

[HSSS]

I’m aware of what the ccg are and do (integrated care boards is the new name btw). That still doesn’t mean your dr is doing this because of them unless you have evidence to the contrary. Most drs wouldn’t ignore NICE guidelines deliberately imo, and particularly not the threats to withdraw other medications, which to me is outrageous and incredibly unprofessional.

Ah that you would go keto if unable to take glic. Now your statements make more sense to me. Any reason you don’t do that anyway And avoid all the side effects? Or call his bluff over the dapagliflozin?

I understand you can obtain medication you have no intention of using and lie to him but you shouldn’t have to lie (it could have a detrimental effect on your care at some point) or waste the medication when the nhs is so broke anyway.

 

[Oldvatr]

My GP is perfectly in his rights to withdraw my glic and test strips in line with NG28. I am running an HbA1c of 46 which is too low for s sulfonyl user, so he can legitimately stop the glic. the test strips are cohabiting with the glic since I am still a driver, and I have had hypo events that did not need assistance. So No glic = No strips.

I am similarly happy with my Glic. It is low dose, and I have no side effects from it in the 10 or so years I have been taking it, It gives me some freedom in my diet, and I can happily eat toast and fried bread( (fortified according to UK law so get my essential nutrients) I will also be able to enjoy Easter Egg this weekend without panic.

It is only the SGLT-2 med that I was wanting out of my pill box. Because it is a wonder drug and new, the GP's seem to have jumped on the bandwagon. They will be doing so under direction of the care authority since ultimately they approve the budgets and dapagliflozin is still on licence and glic is generic so there is an immediate price difference I suspect. I have no proof that there is a Directive from on high, but it would not surprise me. My GP of 4 years ago would have been more open to my wishes and more accommodating. Something is driving these decisions other than open discussion.

The GP heard all my listed side effects and dismissed them all as of no consequence. My electrolyte imbalance is potentially dangerous for a start.Anal fissures and rashes for a diabetic can lead to amputations and gangrene. The high levels of ketones is worrisome and unexpected. (and may be just faulty weestix?)

This class of medication is not a fluffy marshmallow sweetie, it can have a sting in the tail. The FDA has it under special drug watch at the moment due to the high number of reported effects in their yellow card system. NICE does not react to their warnings until much later.

SGLT2 Inhibitors Side Effects | Lactic Acidosis and Amputations

SGLT2 inhibitors used to treat diabetes have common side effects like yeast infections and runny nose, but amputations and ketoacidosis may also occur.

www.drugwatch.com

 

[HSSS]

I am running an HbA1c of 46 which is too low for s sulfonyl user

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.

Something is driving these decisions other than open discussion.

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.

 

[EllieM]

I too am shocked by the doctor effectively blackmailing you with the glic and strips to get you to take a med you don't want.

I am also puzzled by the hba1c recommendation of 53 for T2s on glucose lowering meds. What about T1s on insulin, which is a much stronger hypoglycemic drug? I thought their recommendation was 48? Why the different goal?