Don't let DKA fool you -- be ready for it

Diabetes Complications and other Conditions
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I woke up this morning feeling unwell. My brain was cloudy and I felt slightly nauseated. Then I remembered briefly waking up a few hours earlier and seeing my CGM displaying the lost data ??? symbols. My overnight blood sugar traces recently have been particularly well-behaved, so seeing the ??? lost data indicator made me think that I’d change out the sensor when I finally arose for the day. At 4:15 a.m., I was more interested in returning to my sleep.

After I got up just before 7:00 a.m., I did a fingerstick and it surprised me with a 262 mg/dL (14.6 mmol/L). I can’t remember the last time I’ve been above 200 (11.1). It was at that point that the slight queasiness in my stomach took on a menacing meaning. I knew that feeling nauseous combined with a high BG comprise classic symptoms of diabetic ketoacidosis or DKA.

Familiarity breeds contempt

I’ve now lived with T1D for 36 years and I’ve never been through DKA. My diagnosis occurred as a slow-onset form of T1D now referred to as LADA. So I think my pancreas at the time of my diagnosis was still secreting enough insulin to keep my out of DKA.

A year ago, I read an account written by Wil Dubois over at DiabetesMine. In that column, he wrote how he was surprised with a DKA diagnosis in the ER, even though he is particularly well-informed about diabetes. He has written books on the topic and also worked for several years in a clinic that served many people with diabetes.

Wil’s writing on DKA caught my attention. This passage stuck in my memory.

What happened? I still don’t know. A lot of it is a blur. Something made me sick. I did throw up, but my sugar was at a normal level when it happened. But then things went south. My blood sugar level started rising and wouldn’t stop. I threw insulin at it, but it all happened so fast. So frickin’ fast. It only took a few hours, coasting just below 300 mg/dL, to send me into a full-blown metabolic crisis that left me in the hospital for three days, two of them in the ICU.

I had always thought that if well-informed and vigilant about the classic symptoms that I could simply take corrective insulin and head off all the bad consequences. I trusted the facts that Wil reported in his story and gained a new appreciation of the devious adversary that is DKA.

Back to my story

Following the fingerstick 262 (14.6), I used my Precision Xtra blood ketone meter, thankful that I had ordered a fresh complement of test strips from Amazon just a few months back. The ketone reading registered at 4.7 mmol/L, well above my usual 0.5-1.5 mmol/L caused by the nutritional ketosis I normally experience, especially in the morning.

I understand that anything above 5.0 mmol/L is edging into dangerous territory. In fact, if you read Wil’s account, he notes that he’s resolved to go to the emergency room if he has symptoms, like throwing up, and a reading above 1.5 mmol/L.

I immediately inhaled a 4 unit dose of Afrezza and delivered via syringe a 4-unit intramuscular or IM dose of Fiasp. My blood sugar was slow to come down but my sick-to-my-stomach symptom disappeared within an hour. I also set a pump temporary basal rate of 5 units/hour and ran that for about 90 minutes closely watching my BG levels. I changed the infusion site at 8:00 a.m. – should have done that immediately.

In fact it took two hours for my BG to fall to 209 (11.6). Ninety minutes after getting out of bed, I took another 4-unit Afrezza and a 4-unit Fiasp IM dose. I added a 4-unit dose of Afrezza at 11:05 a.m. with my blood sugar resisting correction at 158 mg/dL. Six and one half hours later, my BG is cruising sideways at 91 (5). I checked the ketone levels about every hour and they’ve trended down from 4.7 to 4.0 to 2.3 to 1.7, with the last one at 2.0. I will keep an eye on this.

Root cause unknown

I haven’t figured out the root cause of this incident. I inserted a new infusion site even though the existing one was only 24 hours old and had performed well the previous day. I half-way expected to see a bent cannula when I removed it but it was unimpaired.

Before bed the previous evening, I installed a new insulin cartridge in my pump. I do this on a separate schedule from site changes. It’s possible that I missed an air bubble in the cartridge and that accounted for the missing insulin. Since my Dexcom CGM was not displaying any glucose data after midnight, my Loop program simply reverted to the basal rates programmed into the Med-T pump.

Lessons

What lessons can I draw from this experience?

  • I need to respond to sustained missing CGM data, even if it occurs during the night.

  • Intramuscular injections are a great way to begin treatment since you absolutely know that you’ve delivered the insulin.

  • Afrezza inhaled insulin also worked for me in this situation.

  • Since I live alone, I need to discuss DKA with my adult daughter who lives nearby.

  • DKA symptoms do not always appear. In fact you can still be in DKA without frequent urination, throwing up, or rapid shallow breathing.

  • Having a blood ketone meter with fresh strips and a working battery I count as a success. I will definitely keep these essential safety supplies on hand going forward. This has not always been the case in the past.

When DKA happens so infrequently, it’s possible to get surprised when it appears. DKA can be lethal and we should not turn our back on this real possibility for each of us. I hope that this story, like Wil Dubois’, reminds others that they need to pay attention and be ready when DKA shows up.

I feel fortunate as I was likely only an hour or two away from serious medical consequences. Diabetes never sleeps!

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Yikes. Thanks for sharing your experience. I once had a sensor go ??? for about two hours and found myself at 450. I wasn’t feeling off - which is amazing - and didn’t have ketone strips. I took a substantial correction and a walk (probably a bad idea since I might have been heading towards DKA) and found myself in the low 200s an hour or two later. Never been so happy to see 200!

Diabetes is a tough and cruel opponent. I don’t think it’s familiarity breeding contempt so much as the fact we’ve handled similar situations so many times that we’re really caught off balance when something goes really wrong. When I was first diagnosed I worried that every blood sugar over 150 was heading to 300. That level of vigilance and worry is paralyzing. It’s a difficult balance and glad you hand both the resources and resourcefulness to respond to a black swan event with so much success.

Maurie

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Thanks for your comments, Maurie.

Definitely a good example that shows diabetes is a goldilocks disease. Yeah, handling something a thousand times a certain way does make you want to just use that same solution.

It’s especially dangerous when there’s another factor you’re not aware of that increases your vulnerability. I assumed that my pump would still be delivering the programmed basal rate and that the site absorption was OK and the tubing and/or cannula was not kinked.

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Just happy to hear you are OK. We can’t lose sight that as our technologies get more and more sophisticated, it becomes so much easier to get lulled into a false sense of security and then when something goes wrong, danger can escalate exponentially. Just like every airplane pilot has checklists and procedures for pretty much any event, we also need to have our technology checklists and procedures developed, and reviewed, while we are thinking clearly for when our diabetes goes awry.

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I too am happy to hear you are okay! I remember reading the story about Wil Dubois and the DKA at a lower level that you don’t really expect it at. Thanks for sharing your story, we can all learn from this type of thing. We do get complacent when we think we have good control that we just don’t think about we still can get DKA, especially so easily.

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Yeah, I agree that thinking about various diabetes scenarios in advance is a good thing. Even given all the recent technology advances, diabetes management is still an art since we vary in our physical and emotional makeup.

@Marie20 – What Wil Dubois’ story as well as my experience today tells me is that it’s a slippery slope into DKA and the window when something meaningful can be done is not open as long as we might imagine. I can think of many variations on today’s events where a work or family distraction could have come at just the wrong time. No matter how proficient we become at diabetes management overall, life can easily turn on twists of fate.

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With a great night’s sleep, newly installed and accurate CGM, and a newly installed and functioning infusion site, I now take a cold, hard look at what happened.

I can’t make a definitive call here as I don’t spot any clear evidence of cause and effect. A bent cannula from the set I removed yesterday would have provided that kind of evidence but it was not bent.

Now I know I’m not required to make any conclusions but I don’t have to prove anything “beyond a reasonable doubt” since this is not a judicial process. What I’m after here is to draw lessons that will enhance my survival going forward.

In the last several weeks, I have been enjoying some dark chocolate every day after dinner. I usually limit it to once per day and the portion size called out on the nutrition label, often 1/3 of the bar or three squares. In the last few weeks, I have relaxed that personal rule but not by a lot. I’ve eaten this portion of chocolate more than once/day, some days twice/day.

But chocolate is not the only thing I’ve relaxed. The evening before this event I enjoyed some peanut butter. I try to limit this to about two tablespoons but I ate it directly from the container and resisting overeating is a feat of personal discipline beyond the reach of most normal humans.

I’ve “gotten away” with this scenario many times but did not realize how much my automated insulin dosing system, Loop, was preventing dangerous overnight BG rises. When my CGM failed and Loop went offline, the programmed pump basal rates were not enough to prevent the march of BGs to the upper 200s (10+).

So that’s what I am going to conclude and try to prevent in the future. I am a disciplined diabetic, but I’m not perfect. I’ve enjoyed many metabolic successes using low-carb and technology. This event reminds me that there are limits to those highly effective tools and if I fail to take heed, I do so at my own peril. Diabetes plays for keeps and so should I.

I will adopt renewed habits around evening snacking. I fear that if I attempt to commit to total abstinence, I will not be able to sustain. I’m thinking that just measuring out the portion and only eating that much is a rational approach, and I’ve used it before.

I could also deliver a bolus dose to cover the evening snack instead of letting Loop clean things up later. My snacking is not excessive and most gluco-normals would not see the portion sizes I consumed as worrisome, at all. But I know better about diabetes and the vagaries of fate.

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I’m so glad you are okay. You were very thoughtful in how you handled this and this is not an easy feat when bg is haywire. Hats off to you.

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Those headed-toward-DKA experiences do feel awful. I’m glad you turned things around before you got to DKA! These types of things happen to me infrequently but regularly with interrupted insulin delivery of some sort. Sometimes I never find the cause. The last time it happened was late last year when I was arriving to work getting ready to head out on a road trip to the US with colleagues for a conference. Luckily I was awake and actively monitoring, so although my blood sugar reached 23.9 mmol/L (430 mg/dl), my ketones only got to about 0.6 mmol/L or so because within 30 minutes of the huge spike I had already taken action. I never did find the cause because I didn’t even change my pump site (for whatever reason, though that is something you should definitely do!). My only guess (with help from people on FUD) was that it could have been some sort of giant air bubble interrupting insulin delivery for a time that then resolved. Every time I have one of those experiences I’m amazed at how quickly things can go downhill and it gives me more respect for what we all do each day just to stay alive and safe with this disease.

I’m glad you were able to avert DKA and are now back on track and feeling better. I find these situations the scariest when they happen overnight. That happened to me once due to dropping my pump before bed and not realizing that the connection between the tubing and cartridge got bent, thus insulin was leaking out. I woke up hours later dying of thirst, and my blood sugar (had been normal before bed) was around 21 mmol/L (350 mg/dl). I don’t remember what my ketones were, but that was another situation where it took forever and lots of insulin to correct the situation.

Note that, for people who are not on a low-carb diet, the ketone levels they want to be careful at are different from people who are already running a baseline level of ketones (and are often comfortable with much higher levels). According to the information that comes with the Abbott blood ketone meters:

Under 0.6 mmol/L is normal
Between 0.6 and 1.5 mmol/L is moderate (correct and monitor)
Between 1.6 and 3.0 mmol/L is high (possibly contact medical team)
Above 3.0 mmol/L is possible DKA (go to hospital)

Hopefully this is not something you will experience again anytime soon!

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Thanks for the comment, Jen. It’s possible that I had a giant air bubble, too. I need better optics when I’m filling my pump cartridge. I’m thinking that a large magnifying glass with excellent lighting could help. My eyesight has diminished with age and I need some optical help.

This certainly resonates with me, especially after yesterday.

I hadn’t really thought about this, but it makes sense. I don’t test my blood ketones often but when I do, they are usually in the 0.5-1.5 mmol/L.

It’s rare for my body to experience blood sugar in excess of 180 (10), so the multi-hour excursion up towards 300 (16.7), was a metabolic shock. I count myself lucky and I’m grateful that the consequences were not too significant.

Thanks also for that helpful table from Abbott. I think I’ll make a note of it and put it in my ketone kit.

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So glad that you are doing well again Terry. I must say that I don’t understand DKA. I did read the article last year, but I still don’t really get it.

When I was dx in 1959 I was dropping into a coma after being ill for several weeks. Diabetes wasn’t much heard of but finally my pediatrician tested my urine. I was in the hospital for 3 days. I received no training and my parents didn’t receive much. Having my urine free of sugar once a day was considered good enough.

In college and my 20’s I took my one shot of 40 units of insulin and didn’t worry much at all about diabetes. Once in a while I had a low
But no highs or lows have ever put me in the hospital. I am positive that I had plenty of 300 and 400 sugars because I only tested my urine very periodically and ate all the sweets I wanted. When I developed a bit of retinopathy when I was 30 and blood glucose testing came around, I cleaned up my ways.

I haven’t produced any of my own insulin in decades. I have never checked for ketones.

I have strictly controlled my diabetes for 40 yrs and very strictly controlled it for the past 20 yrs. keeping a non diabetic A1c.

Why has DKA never happened to me? If it had was it possible that I just thought that I was sick and got through it ok? Is that even possible. Have I just been lucky?

If we have to worry about DKA how do those of us with diabetes ever leave the house?

I was recently told about a 60 yr old type 1 woman who has been diabetic since a child and has climbed and is still climbing most of the tallest mountains in the world. Is she just taking her chances?

Do only some diabetics get this? I have never been full of energy between my diabetes and hypothyroidism, but no DKA.

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I’m obviously not a doctor, but my understanding of DKA is that it’s when the blood becomes acidic due to too many ketones. Having high blood sugar and ketones alone is not DKA, but are warning signs that one may be headed down that path. My understanding is that actual DKA (i.e., blood has become acidic) is not something that can be treated or recovered from at home.

If you were going into a coma, then you were probably in DKA (coma is one of the later symptoms). But, I think for many of us who were diagnosed as kids, it’s sort of unclear because doctors weren’t necessarily discussing the situation directly with us but rather our parents. I was sent to emergency by my GP and in hospital for four days. I do remember having to check ketones every time I peed, but I don’t remember specifically whether I was in DKA (nor what my blood sugar level was). My parents were probably told these things, but they don’t remember specifics. However, when I was diagnosed (in the early ‘90s), I do remember getting information about sick day rules, which included information about when and how to check for ketones and how to react to various ketone levels. You can see an updated version of these sick day guidelines at BC Children’s Hospital (“sick day” guidelines aren’t just for sick days, but any time ketones and high blood sugar are present).

I think different people have different predispositions to developing ketones and/or going into DKA. I know some people with Type 1 who say they never have ketones. I myself develop them within a couple hours of interrupted insulin delivery. I don’t know why this is the case. Maybe related to residual insulin production or other factors. I’ve never had my insulin production measured so have no idea whether I make any insulin, but I doubt it.

Taking precautions for DKA isn’t really much different from taking precautions for lows. It’s just a matter of monitoring your blood sugar (and ketones, in this case), having emergency supplies on hand (such as backup insulin and syringe or pen), knowing what the warning symptoms are, and knowing when to seek medical attention. So rock climbing or whatever else one wants to do is absolutely still possible, we just have to do a bit of extra planning.

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In 1959, I am almost positive that my parents weren’t told about testing for ketones or we would have done it. It was a large hospital in Pasadena, Calif so one would think that they would have told my folks If they thought it was important. But like I said, there weren’t many diabetics around and the only ones I knew who had had diabetes had died when I was a child. I wonder if their deaths were from DKA? There was only one other teen with diabetes when I was in Jr Hi and she was frequently being taken off in an ambulance because of low blood sugars.

I find this all very interesting. I remember that my ketones were tested once when I was low carbing, but usually my urine is never tested.

I guess that I have been very fortunate.

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@Jen provides a thorough overview of DKA. One of the links in the Wil Dubois account of his DKA brought me to a Merck site with this explanation of pH.

Acidity and alkalinity are expressed on the pH scale, which ranges from 0 (strongly acidic) to 14 (strongly basic or alkaline). A pH of 7.0, in the middle of this scale, is neutral.

Blood is normally slightly basic, with a normal pH range of 7.35 to 7.45. Usually the body maintains the pH of blood close to 7.40.

What little I know about how the human body works, the ability it maintains to keep various body measures within tight limits tells me that evolution has selected this pH homeostasis as a valuable trait for survival.

I imagine that acidosis throws a metabolic monkey wrench into the mix. I agree with Jen that I was not in DKA but I do think I was on the doorstep. With my heart disease, it makes DKA even more threatening to me.

As to why you have not encountered this threat, I suspect that your metabolism has some compensating abilities that many do not have. It’s a your diabetes may vary thing. I would count this as a blessing.

I have been through dozens of extended high blood sugar episodes like the other night but this is the first one that approached DKA. Perhaps with aging, I am losing some of this metabolic resilience.

I hope you are doing well!

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For the longest time I knew nothing about DKA or ketones. So if I ever had gotten DKA I wouldn’t have recognized it. Maybe I had ketones off and on and never had a clue? (I was commonly in the 300 and 400’s before insulin and also before being diagnosed right). I think I first ran across a mention of it online.

But did I never get it because I was used to those higher numbers at one time?? A steady increase of BG levels over time and my body adjusted? Are some of us more prone than others??? Is it because when you stay consistently low that the sudden higher number is such a shock to the system???

One other reason the alerts with a Dexcom are so helpful, I catch a new pod not working or not as good much faster now. But I have been known to shut off said Dexcom when it is annoying me!

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Hi Terry, thanks to you and Jen for the explanations.

I think that aging isn’t all that it is cracked up to be! Knowing that I have had stents for the past 10 yrs is really bothering me. I can’t make up my mind about taking Repatha. I have read the conclusions of the studies, watched YouTube videos, listened to doctors reports. Much of the favorable info is written by doctors being paid by Amgen, the makers of Repatha. Many people have complained about eventual side effects which I don’t want. Then of course who knows if having an LDL of 30 for life is at all healthy. I haven’t felt great since last May because of anemia and SIADH and I don’t need more problems, but I definitely don’t want to have a stroke and I don’t need to develop more plaque.

I don’t know who to believe and it is affecting my sleep. As far as I know my diabetes is fine as usual. Last night when I finally did sleep, I dreamt that two men had jumped into the back of the car and were trying to strangle me with a wire. I talked them out of it, but woke up with a bad headache.

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My understanding is that DKA isn’t related to blood sugar levels. You can have a blood sugar of 600 mg/dl and not be in DKA if you ate a bunch of takeout and forgot to bolus. Or you can have a blood sugar of 250 mg/dl and be in DKA if it’s caused by a pump issue that affects insulin delivery. DKA is more related to having very low levels of insulin in your body than actual blood sugar levels. High blood sugar levels and ketones are just warning signs and symptoms.

It’s possible that years ago, such as back in the ‘50s, there may not have been a way to test ketones at home. When I was diagnosed (1991) the only way to test ketones was urine strips. Like testing for sugar in urine, this was not really accurate. Now they have blood ketone meters that you use just like blood sugar meters (most test blood sugar as well as ketones, with two different types of strips).

For what it’s worth, I grew up with diabetes and didn’t really know the term DKA until I was an adult. I did know about checking for ketones if I was sick, and htat i needed extra insulin if they were present and my blood sugar was high, but that was about it. It wasn’t until I got involved in the diabetes online community in ~2005 that I really learned about DKA. Also, when I went on the pump in 2007, part of my training was learning about what DKA was, ketones and when and how to check them, and how to respond if they were present. The risk of DKA is higher for those of us using pumps because we don’t have the protection of always having a baseline level of insulin in our bodies like those taking long-acting insulin do.

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That would go a long way towards explaining it then. Because before insulin, even though I had higher Bg’s, I obviously was still making some insulin. After I started insulin I was put on a long acting insulin first and there again always have had some insulin. So even though I had higher blood sugars I always had some insulin one way or another.

By the time I got a pump I had read about DKA and had Ketone urine strips, which is still all I have. I have been pondering a blood meter and probably should get one especially since I am on a pump. Gees, I finally just got glucagon last year just cause it sounded like something I should have just in case.

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I wonder if DKA is related at all to insulin total daily dose (TDD) in diabetics. Before I changed my way of eating in 2012 I was infusing about 80 units of insulin per day and weighed about 180 pounds. That’s 0.44 units of insulin per pound of body weight.

I now use about 30 units TDD and weigh about 150. That calculates to 0.2 units per pound of body weight.

Before 2012, I hammered any high blood sugar with insulin. It led to insulin resistance and pushed me into being overweight. Since the point you make, Jen, about DKA being more about the absence of insulin than it is about ketones or high blood sugar, it makes me wonder if my old habit of overdosing insulin might have been protective in some way for DKA.

This is just a conjecture and I don’t think that science or clinical medicine knows the answer to this. In any case, I think that we need a certain level of insulin to maintain our health but that taking more than that is probably not good for us.

I’ve never used a urine ketone test but I think it involves exposing the strip to urine and then comparing the color of the strip after a certain timed interval to a panel printed on the side of the strip container. That involves a certain amount of judgment. The blood ketone strips give you a discrete number and leaves no room for judgment, a good thing when considering the foggy-headed nature of approaching DKA.

Yeah, there seems to be no end to the technology and knowledge required to manage diabetes well. I think the blood ketone meter would be nice thing to have on hand. I don’t think the meters are that expensive and I bought strips off of Amazon for like $20 USD for 30 strips.

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I think the biggest difference is now you are on a pump and don’t have a long acting insulin, that buffered.

Have you considered going ‘untethered’ for 60-80% basal. That should be enough to stop a site failure, quickly leading to high BG and ketones.