• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

How many ketones are too many ketones.

Sugarstre

Active Member
Messages
31
Type of diabetes
Type 2
Treatment type
Insulin
Hello, new user here.

I am a T2D with anti-GAD antibodies, so likely will be Type 1 someday, but still measuring high C-peptide levels.

I have mitochondrial disease, so even with high insulin levels, I do not really use carbs very well.

My current meds are Glipizide, Lantus (insulin glargine), and Farxiga. Even as such, my diabetes is not well controlled. (Fasting numbers are OK but spikes are too high)

A few years ago, before starting Lantus, I measured my first ketones per urine, not being on a keto diet. I purchased a ketone blood meter. In a couple days the ketones went away.

Two years ago, the ketones returned and were quite high per urine test strips. (measured the highest on the strip at 16mmol/L). When measured in the blood they were elevated, but not nearly as much at 1.6mmol/L. I was instructed to go to the ER, where the ketones were noted at high levels, but the blood was not acidic, and I did not have any normal DKA symptoms above my normal. I am short of breath from heart failure and breathing muscle weakness steady state).

I was told to discontinue the Farxiga which at the time left me with only Glipizide which proved inadequate to control my blood sugars. The ketones washed out in a few days off the Farxiga/ My endo then added Lantus which has been slowly increased over the years (Current dosage is 120u/day). Even on Lantus, control had been poor. After a few months it was thought to add Farxiga back into the mix, now that I had injected insulin to possibly cover any insulin deficiency I had. I did not get the control I liked, but it was much better on this drug.

One week ago, the ketones returned. I am not on a low carb diet. I have a good amount of insulin, Levels per blood max at about 1.7mmol/L in the morning and then fall through the day. My endo and cardio are reluctant to remove the Farxiga as it is known to have beneficial effects in heart failure and chronic kidney disease. It feels a bit like walking a tight rope though where ketones could run away. Most of the literature online is not very nuanced in this area, stating any ketones in a T2D is cause for alarm.

How many ketones are too many ketones?
 
How many ketones are too many ketones?
Unfortunately you are unlikely to get a definitive answer on this - especially due to the combination of medications involved. 0.5 to around 5mmol/l is considered nutritional ketosis, you may or may not find this range cause you problems.
You need to be careful about sufficient hydration and may need to supplement with electrolytes.
I suggest you talk to your specialist and explain you are on a low carbohydrate diet and see if more appropriate criteria can be set for you.
You are also likely to need to monitor ketones on a regular basis by reliable means (not urine).

Ed: sorry misread about the low carb diet ... ketone monitoring and hydration comments still apply.
 
Last edited:
I suggest you talk to your specialist and explain you are on a low carbohydrate diet and see if more appropriate critera can be set for you.
You are also likely to need to monitor ketones on a regular basis by reliable means (not urine).
Suagarstre said they are NOT on a low-carb diet though
 
Unfortunately you are unlikely to get a definitive answer on this - especially due to the combination of medications involved. 0.5 to around 5mmol/l is considered nutritional ketosis, you may or may not find this range cause you problems.
You need to be careful about sufficient hydration and may need to supplement with electrolytes.
I suggest you talk to your specialist and explain you are on a low carbohydrate diet and see if more appropriate critera can be set for you.
You are also likely to need to monitor ketones on a regular basis by reliable means (not urine).
I am not on a low carb diet.

My body has sufficient carbs and insulin.
 
@Sugarstre When I was first diagnosed I was told to get to A&E if my ketones went over 3mmol/mol (on my combined BG and Ketone meter). Must admit, I never normally check anymore, think after the first month I have only checked 2 or 3 times when I've had a stomach ache. I am low carb, in non-diabetic range and hate finger-pricking.

Interested why you are still classed as T2 when antibody positive, and on all the drugs - although my c-peptide was OK, because my anti-body tests all came back positive, I was reclassified as T1/LADA but in the honeymoon period, no question.
 
@Sugarstre When I was first diagnosed I was told to get to A&E if my ketones went over 3mmol/mol (on my combined BG and Ketone meter). Must admit, I never normally check anymore, think after the first month I have only checked 2 or 3 times when I've had a stomach ache. I am low carb, in non-diabetic range and hate finger-pricking.

Interested why you are still classed as T2 when antibody positive, and on all the drugs - although my c-peptide was OK, because my anti-body tests all came back positive, I was reclassified as T1/LADA but in the honeymoon period, no question.
My anti-GAD antibodies were found 8 years ago, yet still over 8x normal C-peptide today with a lot of insulin resistance. This favors that I am Type 2 even if I also become Type 1.
 
Last edited:
Well, of course this stuff always happens on the weekends. I had gone 4 days with ketones under 1. This mornings was 2.4mmol/L. I think I will hold my Farxiga today, and live with the higher sugars, until I hear from the doc on Monday.
 
Well, of course this stuff always happens on the weekends. I had gone 4 days with ketones under 1. This mornings was 2.4mmol/L. I think I will hold my Farxiga today, and live with the higher sugars, until I hear from the doc on Monday.
If you were in the UK I'd be advising you to call 111 (the emergency healthline) for advice. Is there an equivalent in the US?
 
If you were in the UK I'd be advising you to call 111 (the emergency healthline) for advice. Is there an equivalent in the US?
911, but that is not for advice. It's for an emergency. (come pick me up with an ambulance)
 
Back
Top