SGLT2 and ketones / euDKA

My cardiologist insisted that I use Dapagliflozin for my heart. He started me on 10mg per day, and was intending to titrate it up but my body said NO. It made me ill and I started to get symptoms of anal fissure and heavy duty flatulence. He would not take me off the medication and left the dose at 10 mg. I got my GP to change it to 5mg instead and I have been at that dose for about 6 months. He prescribed ketone pee strips, but I got some online privately to cover other indicators.

Recently I have not been feeling right. I get breathing difficulties, I have developed muscle spasm and weakness, and I am unexplainably tired in the day. Otherwise I have no nausea or vomiting, or temperture. But I tested my wee, and I have glucose output (unusual for me especially as my blood glucose is around 5 mmol/l But I also have ketones at a level between 3.9 and 8 mmol/l This was before I ate my meal, and it rose to 8 after the meal so I am not in dietary ketosis. Although I do not feel it is at danger level yet, I am thinking I am tilting at the euDKA windmill.

I have retested again, and I am still showing high ketones around 8, and two glucometer reading agree on glucose being 6.2 (post prandial) which is normal for me. I really want to drop this med, and I will confirm with my GP at my annual review next month. I shall also take it up with my cardioligist who I also see next month.

EllieM said:

Blood ketones? Urine ketones? Units?

(Cross posting horribly here but...)

I appreciate that you are much better informed on this subject than me but in your position I would be ringing 111 or going to A&E. (Assuming that is blood ketones)

I hope you are OK.

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Urine test strips are not very accurate. But I quote the mmol/l The mg/dl I think was 40 to 80. It wasnt the darkest red one (160 mg/dl) I have done keto diet, and I hardly lit the first blob then and in the early days of taking dapagliflozin, then that too hardly registered. But now its like that fairground stall with the sledgehammer to ring the bell.

Yes I am ok thanks. My back pain is muscular (lumbago) and responds to a hot water bottle. Getting to A&E is problematic in the UK at the mo due to industrial action.

Lamont D said:

I do think you need to do something. Phone 111(?)
You are definitely having side effects from the meds. You should not be suffering because of it.
Get help.

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Thank you. I am only suffering from my muscle ache in my lower back which is bearable and not life threatening. I am otherwise feeling ok and the ketones have dropped back to 3.9. I think they went up after the meal because it had high fat content, so lots of LDL to make diisappear, which the SGLT2 does by forcing ketosis. Just surprised to see the levels get so high.

One thing I discovered in my research is that SGLT-2 meds increase LDL levels significantly. Have just yesterday given blood for annual review so I must expect the lecture on statins again.

Feet on the gound wee stix result. ketones 3.9 and some glucose registering. nothing else is unusual. No change in other symptoms. Not losing balance like I was a couple of days ago. Just taken my meds so will retest agin soon after breakfast has settled.

Update: post meal reading still 3.9 I am beginning to suspect my wee stix since that is way above nutrtional level, and may be the stix being near to expiry date.

Lamont D said:

I would still question the use of the meds. The balance thing I know plenty about with my neck and shoulder problems. (Arthritis and spondylitis) You might still have to wait for an appointment but just try talking to your surgery or 111.

Keep safe mate.

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Thank you all for your concerns, but I do not feel myself to be in any danger at the moment. I think my problem is a logistics problem. I have found the ketostix my GP precribed. They are now way out of date, but they show a ketone value of around 0.5mmol/l which is at least realistic. I also note on closer inspection that the other test strip chart has a red tinge to their ketones displays, but the wee sticks after use are grey to black so do seem to be compromised. My recent blood draw also had a urine sample for the lab to check so I am awaiting those results and the mystery will be hopefully put to rest. I am hoping my DKA turns out to be a mirage (aka My age)

LittleGreyCat said:

https://bnf.nice.org.uk/drugs/dapagliflozin/
This makes occasional grim reading and the general advice for each of these problems is to stop taking the medication in the short term.

I would suggest that you consider buying a ketone meter because pee sticks are notoriously unreliable.

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My meter is already able to measure ketones. I have on different occasions requested one off ketone strip support when on Dapagliflozin or similar but this has so far been refused. I was prescribed one pot of urine test strips a year ago.

I did get my GP to lower the dose that had been prescribed by my cardiologist, but because he is not the main prescriber, and I am not using it for diabetic control, then this is why he has not supported this request. I will have to take it up with my cardiologist, but at the moment I am currently discharged from his care. I do have a routine annual check coming up next month with a nurse, and I can raise this issue then.

Since I do not appear to be in danger, I am reluctant to expend my reducing pension on this item (yet) I will be requesting to come off the medication. I am now convinced that my readings are false due to expired strips,

Resolved. My weestix are lying. I received my replacement glucometer today, and inside the bo is a couple of keto test strip samples. simples? NOPE!!!

My replacement meter gave me an unusual error code. My old meter also gave te same error code. Looked in the new instruction booklet, and the code means the meter is below 15C. Normal operating range for bgl is 0C to 30C but ketones are more sensitive. I am using energy hacks to make sure my energy bills are affordable, and the ambient temperature in the main room was 11C so the meter is correctly refusing to cooperate. So I cooked it for a while on top of the radiator and it worked eventually.

So my weestix report 4 mmol/l ketones. but the meter and the GP supplied ketostix both report 0.3 and 0.5 mmol/l resp. So I was being misled by false info. Easily done, but finding independant arbiters was necessary.

My weestix live in the downstairs loo which is unheated. So they too are at below 15C. I will cook them too and dispose of them if they do not start to behave themselves. This may be the crux of the matter. store weestix at high temperatures.

Edit to add. The tub has an expiry date marked which is 20 March 2023 So old, but supposedly still within life expectancy. operating temp for the strips is apparently 2C to 30C so again, should not be a factor. I could say Bum batch but that would mean I was using them incorrectly.

Antje77 said:

As far as I know, most BG meters need a minimum teperature of 4-8C, depending on the brand.
I especially chose my current one because the website claims it works at 4C, my old meter need 8 and it drove me crazy in winter. Waiting for your meter to warm up in your armpit in the middle of the night when you just want to go back to sleep is no fun.

Glad you solved the ketones riddle!

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Indeed. The ISO standard only applies to meters and strips at room temperature, which is defined as 18C to 30C. The SD Codefree that I used to use required operation between 10C and 30C, my Caresens Dual is 4C to 45C. The Codefree full instructions says meter should be stored and held between 18 and 30C before testing starts.

Note: when I was designing control systems and aerospace equipment, they had to be tested and operated over the range -55C to +125C, and engine mounted components had to go up to 200C without losing accuracy. Some equipment had to survive and operate in a bucket of water and survive being driven over by a tank. I don't think my laptop would survive any of those conditions. I also designed blackbox flight recorders