When I’m high without ketones I typically correct by pump and re-check every hour, and as soon as it starts dropping I back off on checking so frequently (especially if it’s overnight). If I’m not coming down after a couple of hours, then I’ll do a shot and change out my site.
I check ketones if I’m super high (like Dexcom is only reading HIGH), if I feel nauseated and I’m high, or if I’ve been trending up despite corrections. If I have ketones, then it changes my actions because I’ll do an injection right away, change out my site right away, and also typically take 10-20% (of my TDD) more insulin than I would if I didn’t have ketones. I also monitor longer even if my blood sugar is dropping.
I use about a package of ketone strips a year (so 10 or so). It costs me about $30 for that package, so isn’t too expensive ($30/year). That price is without any type of government or insurance coverage. I can see if the cost is 10x higher in the USA, I might not see that as affordable. I’ve gone from normal blood sugar to very high BG and ketones within a couple of hours - it can happen very fast. I’ve also developed high BG, ketones, and feeling sick trying to suspend insulin to manage exercise.
I sometimes wonder if the people who never check ketones maybe have a bit of internal insulin production that makes them resistant to developing ketones quickly. I’ve talked to a number of people with Type 1 who say they never have ketones when they’ve checked them, and that’s the reason they never check. I’ve had an almost black ketone strip and blood ketones as high as 2.5 mmol/L in the presence of a blood sugar of 21 mmol/L (which feels awful), and those are the times I feel it’s truly valuable. There are other times, like this weekend, when I’ll be high (15 mmol/L) and feel a bit sick after suspending my pump for two hours (because I had 6.5 units on board and thought I’d drop low), check ketones and find they’re 0.1 mmol/L, and correct and move on. Some would see that as a wasted strip, I saw it as reassurance. Just like checking blood sugar to find it’s normal doesn’t mean you’ve wasted a strip.
On the other hand, I can have very, very prolonged highs that last for hours or even days under some circumstances, like hormones. And I also have issues with pump site reliability, such that even metal sites can be working fine and then just die 12 hours later. Just this morning my CGM is out and I woke up at 14.4 mmol/L, did a correction via pump and ate breakfast and was 16.6 mmol/L two hours later, did a correction with an injection and two hours later (just now) I’m still 16.4 mmol/L. So this is an example of where I’m probably going to check ketones, because I’m at work and don’t want to go through the hassle of changing out my site if my site is still working and my body is just being insulin resistant from hormones.
Maybe it’s insulin production, but as a longtime classic T1, I don’t think I produce any. I think some people’s bodies are just more or less likely to switch over to the ketosis metabolic pathway, which reflects how some people have an easier time burning fat than others and the type of fat available (e.g., belly fat is more bioavailable than fat on the hips/thighs/butt, so I wonder if it’s another thing that might be linked to body shape). I’m definitely on the high hips:waist ratio side of things, very rarely produce ketones, and also have a pretty stubborn weight set point, but that’s just one data point. I also don’t see weight loss from going very low carb, unless I also restrict calories.
This is about the only time I ever check for ketones. Knowing my ketone level when I’m sick helps me decide what supplemental percentage of TDD to take every 4 hours or so – an amount that’s higher than the usual correction. Without knowing the ketone level, I’d of course still take extra insulin, but I’d be flying blind and risking (a) not taking enough and increasing ketones or (b) taking too much and adding hypos to my misery.
There’s also peace of mind. If I’m high and nauseated, it helps if I can determine right away whether ketones are involved, and then either deal with the ketones or consider other causes. In fact I’ve been feeling crappy the past couple of days, but my ketones are negative, so I don’t have to change out pods or discard insulin, etc., and instead can likely pin it on those strange sausages I ate on Sunday. My box of strips expired in 2017, and before yesterday I’d only used one strip from it. Still, I’m glad I could test and rule out ketones.
for the record, I am sorry you ate strange sausages. That does not sound good. And yes, I was trying to fiddle around with my administrator privileges to see how to break off this thread, but couldn’t figure it out. Good call!
That’s an interesting thought about types of body shapes and ketones. The people who I know who “never” produce ketones are also long-term T1s (30+ years). I seem to produce ketones quite easily if I’m having issues with low insulin levels. But when I ate low-carb, I didn’t get crazy high ketone levels even if I went all day without eating, and I also didn’t lose much weight (maybe 10-15 pounds in two years of low-carb). I carry most of my weight on my hips/butt and definitely have a lot to spare!!
Personally, I don’t test for ketones out of laziness and because I also would say my hyper management to be aggressive. However, I’ll put out there, to give an example to @TiaG 's point:
Normally, to bring me down from a 350 I’ll need ~7 units. When I was in pre-DKA, I took 20 units (via injection, not pump. As in it wasn’t a failed site and didn’t absorb - that 20 units got in) and it only brought my 350 down to a 300 (for context I don’t know how long I hadn’t had basal, but personally 20 units at 350 just sounds scary to me like a plummet if I don’t have ketones)
I don’t think ketone testing is necessary for part of management if you’re in and out of 200s and you don’t want the mental and physical burden of doing that on top of normal diabetes management.
However, the amount of water to flush out ketones vs just help feel better from a high I think could be a change in hyperglycemia management that would be an advantage of ketone testing. (along with the insulin differential)
We all deal with diabetes differently and tbh, whatever makes it easier on you to bring that high down and make Liam feel better and at a lower risk of complications on a daily basis is the move. I can’t be bothered to test for ketones and tbh if I did everytime I was higher I might be less aggressive with my highs, so I totally feel why leaning away ketone testing works for you
Interesting! Another factor could be pumps vs MDI—have the other T1Ds who don’t produce them easily also been on pumps? I suspect being on MDI is protective against ketones generally in that you’re far less likely to end up in situations with very low levels or no insulin in you suddenly. The only times that’s likely to be a factor is if something is suddenly altering insulin need or causing someone to back off doses (i.e., being sick and/or not being able to eat). I suspect I’d probably be more careful about checking for ketones if I had a pump.
They have been on both MDI and pumps. But I agree, I’m pretty sure the only time I developed ketones on MDI was if I was sick or forgot a basal shot. Since going on the pump, I develop them very quickly with interrupted insulin delivery.
Yeah, and with a basal insulin like Tresiba, with significant overlap across doses, probably even less likely, even if someone does forget a single shot. Or same thing if you split Lantus doses.
I also never test for ketones, but after reading this thread, and the article @jim26 posted, I’m thinking it is a good idea to at least have ketone strips available especially when ill. I’ve had to take as much as 5x TDD for flus and colds and dehydration goes along with them, probably ketones, too, but I never checked
I think you really hit the nail on the head - if a procedure really isn’t going to change your actions, why do it. That philosophy applies to ketones as well as anything else. I think far too often we end up going through the motions to satsify what someone else has decided is best.
I don’t test for ketones because I don’t feel like it’s a value added measure. I would simply be holding a strip next to a color chart on a bottle with no definitive value derived. When I check BS I get a real number that I can do something with.
That being said, I also assume BS values above X mean I have ketones. BS values above X also mean I am taking Y insulin bolus in addition to the insulin bolus indicated by the sliding scale.
I often remind myself that they want me to see the podiatrist regularly (and I honestly can’t even remember if it is yearly or twice a year). I don’t go that often. I don’t have any regular problems in my feet that the podiatrist is going to treat, so why go regularly. I check my feet daily and see the podiatrist when an issue arises. I don’t lie to the endo about going more often, and I dont let the endos or others recommendations dictate what is going to work best for me.
I know people who count carbs and people who don’t. However, I always ask, “if you knew you weren’t going to count carbs, why did you spend hours training with someone and waste everyone’s time?”
It may not change your management strategies, but there are blood ketone meters that give ketone values in mmol/L with guidelines for what to do at each number range. I think this is what most of us who do check ketones are using these days. At least it’s what’s been recommended to me for the past 10 years over urine ketone strips (which can be inaccurate or outdated by hours, affected by certain medications, don’t measure the right type of ketones that cause DKA, etc.).
If we upgraded to this device, we would probably be more prone to doing them since this device would provide actual recommendations based on ketone levels that one can take some specific and quantifiable action upon. Not just some obscure strip where the colors are often unable to even be differentiated from one another. Any Amazon link to such a device?
Well, the device doesn’t provide advice for what to do. The meter is just like a blood glucose meter (in fact, they can test blood glucose, too). It gives you a number, but your doctor/CDE will give guidelines on how to act on that number.
Abbott is the main company who makes these meters, the same people who make the FreeStyle meters, although I think there may be some other brands in the US. The Precision Xtra has been a popular choice in the past.
I use the Precision Neo, but I don’t think this meter has ketone capabilities in the US. The FreeStyle Libre can measure ketones in Canada, for those who use that system (I don’t know if this is the case for the US version).
Unlike blood glucose, I believe ketones are measured in mmol/L regardless of country, so at least that’s convenient.
And as for the urine ketone strips, God no! We have NEVER used those. those are, indeed, useless because the info is hours old. Blood ketone strips show you what your levels are in the moment.
I haven’t used ketone urine strips in years. I’d also never check if I needed to pee on a strip to do it. The ketone meter is great because I just keep it in the same case as all my other diabetes supplies, along with a few strips. If I decide to check ketones, sometimes I don’t even have to re-prick my finger, just pop some blood on the strip (it does require more blood than the glucose meters) and 10 seconds later it gives me a number in mmol/L that I can act on.
When Liam was diagnosed, we were prescribed ketone strips. We still have the same container of ketone strips that I maybe used 5 times total since he was diagnosed because I found them worthless.
Thanks for the knowledge!