Hi all, I’m new to the forum - after countless hours Googling about ketones, I found a lot of posts on here helpful so I thought I would ask my own question.
I’m Type 1 on a pump and my control isn’t great - HBa1c is 9.5 - but I’m working on it. For the last two days I have had high ketones (in my blood, no urine strips at home) but normal blood sugars. I’ve been to the Doctor and my urine showed no ketones even though my Doctor said she could smell it on my breath. Blood tests all came back clear, so no infections either. It’s entering the third day now - I’m up every hour through the night urinating, and I have that dry mouth feeling.
Do I need to be worried about DKA if my levels are okay?
I’m not on a weight loss diet and didn’t exercise prior to this happening.
Please help - feeling worried and out of my depth on this one.
when you say your bg is normal, what has it been? also, are you on a SGLT-2 inhibitor, like Invokana? I would strongly suggest you get some Ketone strips for urine testing, Walmart has the relion brand, or ask a pharmacist what they have in any pharmacy.
DKA is almost always accompanied by high bgs. but I’d want the doctor to call me back asap.
If your ketones are seriously high (not just a little bit, but a lot), you really need to have the doctor find out what is going on.
In fact there are ways to have high ketones with relatively normal blood sugars. Here is just one of them: if you are taking an SGLT-2 inhibitor such as Invokana or one of its clones, that can invalidate urine ketone tests. What happens is that you eliminate the excess sugar through the urine so you don’t realize you’re not getting enough insulin. And there are other ways it can happen, too.
Once again, if those levels are elevated to the point of being a genuine danger, you need to get seen.
If you are experiencing any of these
•High BG
•Vomiting (usually more than once)
•Abdominal pain
•Diarrhea
•Trouble breathing
•Confusion or trouble concentrating
•Loss of appetite
•Weakness and fatigue
then those high ketones are a danger and the ER is the place to go. Take care MFW80.
An A1c of 9.5% corresponds to an average blood sugar of about 225 mg/dl. Normally high ketones associated with DKA will occur only when you blood sugar is very high (i.e. > 300-400 mg/dl) and you don’t have enough insulin. As @MarieB asked there are certain exceptions to this rule that include taking the SGLT2 drugs and becoming dehydrated.
If your blood sugars surge into the range I indicated you may start producing ketones which are a very serious red flag. But simply having to make regular runs to urinate can simply be an indication that your blood sugars are running too high. Once your blood sugars hit about 180 mg/dl your body starts excreting glucose in your urine and if you routinely run over 180 mg/dl it is not surprising that you have become close fast friends with the bathroom.
So I guess I could tell you that everything is ok. But both you and I know it actually isn’t. Some of this stuff could be anticipated with the high blood sugars you have had. But the real concern is that if you average is 225 mg/dl you may well have spikes up to 400-500 mg/dl and that is “alarming.” All these high blood sugars place you not only at immediate risk for something like DKA, but when you sustain high blood sugars over time it just hurts your body.
You have gotten good advice from @karen57 and others that if things get out of control you should go to the ER. But my greatest hope would be that we could work with you to attain better overall control. Dealing with uncontrolled diabetes is terrible. It isn’t just the long-term stuff, I would suspect you often just don’t feel well. You deserve to feel well. I do hope that we could help you feel well.
Thank you all for the replies so far. I’ve had T1 for 24 years and I’ve never come across this before I’m working with my Endo to get my HBa1c down - I have OCD as well which I’m sure plays a role in my levels.
I’m not taking any inhibitors, I’m just on NovoRapid on the pump. I also take Lexapro for my OCD and birth control pills.
I haven’t had any of the other DKA symptoms - I’m just thirsty, urinating a lot (at night) and I’m tired.
My doctor said, as my blood tests were all clear, that it could be my body picking up an early infection? I don’t get the urine test results back until Monday.
I’m off to the chemist this morning to get more urine ketone strips.
are you on a cgm?
I’m guessing it could be that you are running high, producing ketones and then getting some control and the BG down and then clearing the ketones.
I’ve seen it said because there is no long acting, it’s easy and quick to get ketones on a pump. with a kink or a blocked site, so a period of wrong settings could do the same
the symptoms don’t sound like dietary ketones, I would start at the start and run through everything again.
you could start with a basal check and get that right or you are just chasing your tail. Write the results down so your endo can set the pump, if you don’t https://mysugr.com/basal-rate-testing/
Are you actually testing your blood with a ketone meter? Or just feeling like you have high blood sugar? I agree with what everyone else says, but I think if you had ketones in your blood you would have them in your urine, regardless of what your blood sugar was…?
Thanks Jack - the basal testing could be worth looking at. I mainly go high after certain foods (like a bagel for breakfast) and I’m starting to think I might be carb-sensitive. I’m going to change my site today so I’ll see if that makes a difference - I’ve had no kinks though and my levels have been fine.
Thanks Jen - I was using the Optium XCeed with the blood ketone strips. It was showing high, but the urine ketone test at the doctor was clear. Doctor was as puzzled as I am.
UPDATE:
Urine ketones: I’ve been to the chemist to get urine test strips - would you believe there is a state wide shortage of them and I had to call around and drive to a few chemists to finally get some! I tested and the result was 0. So that is good.
Blood ketones: Even though it was working yesterday, my meter is now not recognising the blood ketone strips. Customer service is Mon-Fri of course, so that’s no help. Going to see if I can get another meter at a chemist tonight (I have five meters, but only one that is compatible with the blood ketone strips!)
I would find a new doctor who can figure out what is going on. They should be able to get urine test results immediately for blood/protein/ketones/sugar/bacteria etc. You can be in dka at 250 or even lower if the circumstances are right. I was in dka at 279 and I was in severe dka about a day later at 363 by the time I got to ER with ph at 1.5 and blood gases at 5. You can go from early dka to severe dka very rapidly. Has your doctor done a complete blood panel to see if anything else it going on? There are other things that can make you urinate a lot such as your body is trying excrete calcium which happens in hyperparathyroidism. The blood measurement is usually more accurate than the urine measurement for ketones.
Btw I only vomited 2x in dka but had very severe nausea, trouble breathing and a lot of other symptoms… another potential symptom is bad diarrhea.
you will be surprised by your next A1c if you join the pump group here. Even without a CGM the flatliners club here will have all the tricks they use.
I’m just passing on info, after you get your basal right, your meal bolus will be a lot easier, again most would say to start at the start and go through all the bolus stuff again for I:C ratios and corrections etc
A workbook (the certificate ran out but the site is safe)
Normally your body will produce ketones during times of fasting or exercise. If you test upon first awaking you may well find some level of blood ketones. This is simply a by product of fat burning as your body burns fat during sleep. Same thing after exercise. Blood ketones and urine ketones are different. Urine ketones are generated by your body “dumping” excess ketones. If you generate blood ketones just enough fuel your body you may detect blood ketones but not see any urine ketones. Most advice on ketones is focused on urine ketones as they are truly an indicator that your producing excess ketones. I hope this helps you understand how you will see “routine” ketones in your tests. As others have said, high levels of ketones with a high blood sugar are a real red flag for DKA that you should immediately deal with.
If you don’t mind my asking, what is your daily routine for insulin management? When do you test, take your basal, take your mealtime doses and correct?
I’m working with my Endo to get my HBa1c down - I have OCD as well which I’m sure plays a role in my levels.