Frustrating Advice Re: Meds (SLGT2 inhibitors)

[CaptainTwitchy]

Last time I posted here was my introduction post where I mentioned I'd been prescribed Invokana. Lovely people here gave me advice and pointers towards info about the dangers of a Keto diet and the wonderful world of SLGT2 inhibitors. Scary stuff.

I decided to hold off taking the meds until I'd spoken to my, or indeed any GP. Two weeks later I finally managed to get an appointment to speak to a disinterested doctor. She asked for my BG readings over the last week which have been sitting between 6.1 and 8, but with a gradual downward trend thanks largly to ditching the carbs and swimming as often as possible. I told her about my concerns, but she didn't seem worried and instead told me to take the pills and eat some carbs.

Help!

I've been managing this on a very low (sub 20g per day) carb diet. I've ditched bread, the entire subgroup of foods that fall under "naughty things", cereals, grains, pasta and even my beloved potatoes. I've done it properly dammit! And now I don't really know how to balance it all out again. I've actually kind of liked the Keto stuff because fat is delicious in all it's glorious forms. Losing weight and eating this much cheese! I bought a keytone monitor because I thought it'd be a good idea to see if this is really working, and today's reading was 1.3 which ain't bad really. Plus I've lost 10lbs in the last two weeks which is the first successful weight loss in my entire life.

Sorry... this is becoming another essay but I really needed to rant and I don't know what to do now. I don't want to get stuck on this medication for the rest of my life, especially not since it's going to make me pee a lot and will very likely give me thrush. I want to be one of you amazing people that puts this into remission. Will the SLGT2 thing be a temporary measure? I know I should have asked the doctor this but I'm still in the "assertivness building" part of my therapy so just tend to cave in very quickly in these situations. Anything to be a good girl and not get in the way...

 

[bulkbiker]

I've been managing this on a very low (sub 20g per day) carb diet. I've ditched bread, the entire subgroup of foods that fall under "naughty things", cereals, grains, pasta and even my beloved potatoes. I've done it properly dammit! And now I don't really know how to balance it all out again. I've actually kind of liked the Keto stuff because fat is delicious in all it's glorious forms. Losing weight and eating this much cheese! I bought a keytone monitor because I thought it'd be a good idea to see if this is really working, and today's reading was 1.3 which ain't bad really. Plus I've lost 10lbs in the last two weeks which is the first successful weight loss in my entire life.

So carry on doing what you are doing. It's obviously working well and your disinterested doctor doesn't have your condition, you do!

The decision as to whether to take medicine is yours and yours alone to make.

A doctor can advise but not force you to do anything.

 

[MrsA2]

I am not a doctor, but I have been reading on another site of someone, a t2 diabetic on SLGT2 medication who did have a severe dka within days of starting keto and was hospitalised.
I don't know anything about the medication or why it was prescribed for you, but I do know it and keto don't mix well and it isn't advised to do both at once

 

[CaptainTwitchy]

So carry on doing what you are doing. It's obviously working well and your disinterested doctor doesn't have your condition, you do!

The decision as to whether to take medicine is yours and yours alone to make.

A doctor can advise but not force you to do anything.

Thanks. Having a hard time trusting my judgement, but I think I've decided to hold off on them for at least the time being.

 

[CaptainTwitchy]

I am not a doctor, but I have been reading on another site of someone, a t2 diabetic on SLGT2 medication who did have a severe dka within days of starting keto and was hospitalised.
I don't know anything about the medication or why it was prescribed for you, but I do know it and keto don't mix well and it isn't advised to do both at once

Thanks. These are the kinds of stories I've found too. The GP I spoke do was unconcerned about ketoacidosis and more worried that by taking the meds and doing Keto that I'd end up having a hypo. No idea where that comes from. I've pretty much decided to hold off on the drugs for now and see how things go for a bit.

 

[bulkbiker]

Thanks. Having a hard time trusting my judgement, but I think I've decided to hold off on them for at least the time being.

With blood sugar trending downwards and weight loss your doctor should be singing your praises from the rooftops.
There won't be many of their patients that have done that. You should be proud of yourself!

Your judgement is paying off.

 

[Oldvatr]

The FDA in the USA carries these warnings, but the UK NHS only considers it to be applicable to T1D only since that is where the early events were recorded. We have had anecdotal evidence in this Forum that it can and does happen to any diabetic Anecdotally it has been associated with Low Carb keto diets, but in the US their research indicates it is due to dehydration which can also be associated with LC diets.

The NHS is also ignoring the FDA warning that it can cause genital necrosis. They also ignore the reports of acute pancreatitis being associated. The only FDA warning they have passed on to doctors is the one about UTI risk. This class of drugs has built up a bad reputation for nasty side effects beyond UTI but it seems to be essentially non British to discuss them.

Anecdotally the advice is to make sure you keep up your hydration since keto does remove water especially in the early days. Also consider increasing salt intake since you are peeing out the sodium at a greater rate both by keto and the SGLT-2 combining.

For latest FDA status google fda.gov sglt2 The worrying thing is that the UK HCP's are not being informed about euDKA which is the specific form that occurs due to these druga and it is significantly different in its symptoms to standard diabetic DKA that it may be missed. I had a big argument with my consultant when I was in hospital last year when I refused point blank to take it, but finally she looked on the FDA site with me and understood why.

 

[CaptainTwitchy]

The NHS is also ignoring the FDA warning that it can cause genital necrosis. They also ignore the reports of acute pancreatitis being associated. The only FDA warning they have passed on to doctors is the one about UTI risk. This class of drugs has built up a bad reputation for nasty side effects beyond UTI but it seems to be essentially non British to discuss them.
.

I'm so glad I didn't just blindly and obediently start taking these drugs. I figure a continuation of my lifestyle change approach is probably the best way forward at this stage, especially as I'm noticing a real difference. I'm monitoring everything. I've bought a fancy new notebook and coloured pencils especially for it! If the downward trend doesn't continue then maybe meds will be the answer, but I feel like I owe it to myself to find out. And I really don't fancy genital necrosis one little bit. I told some friends about that particular possibility and watched their faces as they tried not to throw up.

 

[Daibell]

Hi. My reaction is to have a small quantity of carbs each day i.e. not full-blown keto and if your BS and weight come into the good range indicate to the GP that you want to (will, even) reduce or stop those tablets as you don't need them any more. I worry about GPs that suggest you keep medication going when it needs additional carbs to balance it. In general, meds should be matched to your carb intake level and not carbs matched to your meds

 

[Mrs T 123]

Hi there - if you continue doing what you are doing ( low carb) - no drugs is possible - you can only give it a try - I and many others on here control our diabetes with diet and exercise only - have a look at my signature for encouragement - I too didn't want to go on drugs and refused but only you can decide. Good luck.

 

[Tophat1900]

So you are achieving good results and your gp who doesn't seem to care just wants you to take pills and eat stuff that makes your levels go up... that strikes me as completely counter productive to a healthy life.

Up to you if you take them of course, but when you are improving things and enjoying your food why would you want to ditch good progress for pills and what seems like disinterested poor advice?

Enjoy your food and weightloss and improved bg levels.