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Want to stop taking Dapagflozin but struggling to get Diabetes Clinic onboard.

Geminigirl

Well-Known Member
Messages
165
Location
Suffolk
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
Spicy food, 2 faced people.
Hi all,

Before I started Insulin I was taking Dapagflozin and Gliclazide, eventually they weren't working well, so I am on Humulin M3 x3 daily and the Dapagflozin.

I have tried several times to put my case for stopping the Dapagflozin because I feel it has done little for me but the Diabetic nurses and Dr at the clinic keep saying no, it's working well.

The last few weeks I'm really struggling with Thrush and generally sore ladies area, (sorry if tmi) I'm getting endless creams for it but I'm sick of this now.

I'm also concerned about the rare but nasty Gangrene possibility. Because I'm so sore I'm thoroughly fed up.

I also want to try low carb as I need to lose weight and I can't on Dapagflozin because of the risk of DKA.

I know you can't advise me as such but I'd rather ditch the Flozin. Tbh, I'd rather switch to background and rapid Insulin at meals too, the mixed Insulin gives me little room to manoeuvre.

Any ideas on how I can approach the team? I suppose I can just not take it!
 
If it were me, I'd be saying that the meds are stopping you from reducing the intake of the foods that are at the heart of the problem. Clearly (as you say) nobody can or should advise any change in meds, but I do hear the sense of being boxed in by your treatment.

The best way to chart a better path, is to gather data - and the best way to do that is to be using a CGM. Have you had that discussion with your team? The only way to safely reduce any meds is to track the effect of the foods on your body. For sure the worry is DKA, but then, you need to be able to prove you are not in any risk.

It is ultimately your choice, but there are very definite benefits from bringing the support team with you, and very definite risks from making any changes blind, so to speak...

Going low-carb high-fat needn't be an all or nothing thing - what kind of foods are you eating currently?
 
If you don’t mind me asking @Geminigirl how long have you been diabetic? As you are struggling to keep your blood sugars in check with those meds have you asked for a C-peptide test? A C-peptide test will tell you how much insulin your pancreas is producing. If it is producing a lot of insulin then your T2 diagnosis is on the button, but if you are not producing much insulin, your diabetic team may want to do more tests. It just gives you a better picture of what’s going on with your body. If you are definitely T2 I hope your team can look at your meds and workout ways to incorporate both your meds and a modified diet with a future view to shifting towards diet controlled diabetes.
 
Hi, thanks for your reply. Yes, I use a Libre 2 sensor and have a reader for it. I get it on prescription.

My last Hba1c was 7.5%. Clinic want it at 7, GP at 6.5!

I eat lots of salad, eggs, cheese and fresh meats and fish. Avocado's, veg and no rice or pasta.

I do have a slice of wholemeal toast at lunch with something on it, a weetabix at breakfast and maybe 2 or 3 small new potatoes, or half a mccains jacket potato with my evening meal. I was told to have carbs at each meal.

Fruit wise I normally have an Orange after lunch and a sugar free jelly in the evening.

Yes, I do feel boxed in, I'm told not to go to bed under 6 and if I am have a biscuit. Then I wake up between 9 and 10!
 
Hi. Thanks for replying.
I was diagnosed 15 years ago with an Hba1c of 10%. Over the years diet only, then meds and have been up and down.

2 years ago after a long time on Gliclazide and Dapagflozin the Diabetic nurse ref me to the hospital's Diabetic Clinic.

My Hba1c had risen to 12% and they said I was most definitely T2. Put me on a background Insulin called Semeglee along with dropping Glic but keeping Dapagflozin, that did nothing.

Then I started on Humulin M3, 70% background, 30% moderate release x 3 times daily before meals. Problem with that is that I feel tied to eating the same things. If I take less Insulin my BG goes up, more and I go low. I really would prefer a different regime to give more flexibility. One nurse suggested it but the one I saw last time disagreed. I haven't seen the doctor for a year and my GP surgery now does nothing for my treatment any more.

I need to lose weight, I exercise as much as I can but have Fibromyalgia and a herniated disc so am not able to do as much as I want to.

I don't think I've had a C-Pep test.

The side effects of the Floxin are getting me down, also waiting for throat surgery do feeling fed up!
 
As far as the thrush goes, I'd suggest you ask your gp for a Fluconazole tablet, and a thrush pessary (or get them from a chemist). As you've had thrush for a while it could take a course of tablets to help, especially as you're still on a Flozin. I really feel for you, as Thrush is so sore and irritating.
 
I wholeheartedly agree with changing to a more flexible insulin regime.
 
Hi, I had exactly the same as you on the flozin, I tried as I was also told to try and keep with it, I tried all the creams, tablets etc but it was unbearable. I just stopped it and told my hospital diabetic team I just could not stand the problems ‘down there’ that no woman, man or beast should have to endure! I did have evidence that it was that causing it as I had a gastro bug which lasted a few weeks so as per sick day rules I had to stop the medication and the relief was almost within a day of stopping it. For me though it did have the effect of not having to use as much insulin so I did ask if there was anything else and I have been put onto Mounjaro, which has worked for the insulin reduction but don’t believe all the hype about the weightloss!

I was also on Humilin M3 in the past and found it restrictive as well, i was on this when I first saw my diabetic hospital team as I had been referred from the GP DSN. When I saw the hospital DSN she classed me as being under diabetic distress, and changed me to a bolus and basal regime. I would just keep onto the team looking after you, there are other options out there but I know it can be frustrating asking / getting them and not feeling as though you are listened to.
 
I have always found that if I Goto the clinic and say ‘I am stopping’. That they say ‘ok’. Be cause they can not force anyone todo anything and whether you chose to take their advice is up to you

So you do have that option

BUT the flozin WILL be helping to some extent as you pee out extra sugar so you may find control with the insulin alone much harder especially a mixed insulin like m


So you may want to discuss alternative treatments to the flozin with your team
 
Thanks, yes, I have creams on repeats. Can't have Fulconazole due to my blood thinner.
Yes, it gets you down. I often do a swab for the nurse and it's not Thrush but Vulvitis which is just as bad! Grrr.
 
Antje77 said:
I wholeheartedly agree with changing to a more flexible insulin regime.
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Thanks, when we discussed it a year ago one nurse agreed but when I saw the next one she didn't, based on "you'll only eat bad stuff, then correct it!"
I assured her I'm not like that and am quite strict on myself but it's so boring.
I'm due an operation in a few months and want to get myself sorted.
I have called the clinic today and am on their call list for tomorrow. Fingers crossed.
 
Thankyou.
My surgery DSN ref me to the clinic as she said she didn't know what to suggest with an HBAIC do high and no oral meds working.

So it was the hospital clinic who started me on insulin. The GP has no input now.

I do find it frustrating to get to speak to someone though and my HBA1C's are getting further and further apart!

I feel (and I understand T1 is much more complex and dangerous) that they aren't so keen on us T2's. It seems to depend on who I see.

I'm getting a call back tomorrow so I'll let you know how it goes.
 
Geminigirl said:
Thanks, when we discussed it a year ago one nurse agreed but when I saw the next one she didn't, based on "you'll only eat bad stuff, then correct it!"
I assured her I'm not like that and am quite strict on myself but it's so boring.
Click to expand...
You're an adult!! The 2nd nurse is treating you like a child in my humble opinion anyway. What is their definition of 'bad stuff'?

If it was me, and you're still having a problem getting moved to a basal/bolus regime, maybe ask to trial it for 6 months, and see how you're hba1c is, and if it's resolved the other problems.
 
Hi. Having the typical MDI insulin mix i.e. Basal & Bolus gives the most flexibility and good BS control once you learn dosage etc. Not going low carb in case you go hypo with the Dapa is the wrong way round. The usual advice is to have the right diet to suit your weight and BS and to take meds that match that regime i.e. don't feed the meds. Make any changes slowly and monitor your BS along the way to avoid a hypo. I agree having a C-Peptide test to check your insulin levels is worth doing as I did but you will need to convince you nurse/GP. You can get them done privately.
 
Sounds like a good idea.
Yep, I'm 66yrs old and she spoke to me like I was 5yrs old.
She basically implied I might stuff my face full of carby stuff, cake etc because then I could correct it!
I would not do that to myself.
I have a better phone now so have ditched the reader for the app, so now it is working as a proper cgm.
I'm going to tell her I am willing to give them access too.
 
Thank you. Yes, I have written down lots of questions so I don't forget to ask everything.
 
I don't know if this will help, but on those occasions I get treated like a 5 year old, I say something like: "I expect you've dealt with many who do but I'm not one of them". Seems to work.
 
Outlier said:
I don't know if this will help, but on those occasions I get treated like a 5 year old, I say something like: "I expect you've dealt with many who do but I'm not one of them". Seems to work.
Click to expand...
Yes!
 
UPDATE
I have had a long chat with the Senior DN at the clinic and he understood my point and agreed I'm a bit limited.

He agrees and thinks a Basal Bolus regime would give me more adaptability, albeit it's more complicated.

Anyway, he is making an appt to see me ASAP.

I explained I now have Librelink on my phone and it's now working as a continuous Glucose Meter and he sent me an email to link up with them on Libreview so between now and my appt they can see what's happening. I've accepted that and I'm filling in the notes for meals, exercise and dose of my M3 before the three meals.

I'm also filling in what my meals are.

So, I'm going to make a list of questions ready for my appt and will be asking about stopping the Flozin.

Thanks for everyone's support. I have a lot of other medical issues and waiting for an op which I think reduces your fighting power!

I will update once I've been seen, I know they're busy so might be a week or 2!
 
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