This is SO sad, at Beyond Type 1 we have a DKA campaign to identify the symptoms during diagnosis, but it seems some of our community members are not paying the needed attention to DKA during sick days.
How do we raise awareness?
https://www.paloaltoonline.com/obituaries/memorials/scott-kleckner?o=5552
That is sad. The young man in the link you posted held such promise. We, as diabetics, need to always be on the alert for DKA. It’s so easy to get busy with life and then when we start to experience DKA symptoms, we rationalize it as something more pedestrian, like flu.
There’s even a new class of diabetes drugs (SGLT-2 inhibitors), intended for T2Ds but also useful for T1Ds, that makes it possible for something termed “euglycemic DKA.” That means you can go into DKA at modestly high or even normal blood sugar levels.
Every time I hear of a fellow person with diabetes who has passed away, I always think why? Have we not learned how complicated and serious this disease is? Have we not learned that people need to trust us when we feel “off”? Have we not learned that the more tools we have, the better the outcome? I am devastated for this family and the families I have meet over the years who have lost young family member due to highs or lows from diabetes. We shouldn’t be where we are right now. And am so amazed and ashamed that we lose so many during the misdiagnosis stage. How does this happen, still?
And to comment on Terry’s post, these new drugs can do a lot to help many with their control. But my concern is how much does the medical team talk about the side effects and how to handle them. It was one reason I didn’t go with these drugs but a different class of drugs. But those we do use these drugs, need to be monitoring their ketones on a regular basis, even if blood sugars are in line.
Again, I pray for this poor family and their friends and hope it never happens again.
We were taught to check for ketones anytime BG is over 300, & always during illness. When I first started interacting with the DOC, I was a little shocked that so many older T1s never check. I suppose their theory that if they’re high they take more insulin & the presence of ketones doesn’t change that is logical, but we have always been provided a formula or specific dosage to give in addition to a correction. I’ve worked hard over the years to teach my daughter protocols we’ve established for safety, including when to monitor for ketones. I truly hope she sticks with those protocols as she grows older. The attitudes towards ketone testing (& other safety protocols as well) seem to be ingrained, for good or bad. I’m not sure those attitudes can be changed easily.
My heart hurts for any family dealing with such an unnecessary loss.
I guess I fit in that group. My blood sugar, however, rarely exceeds 300 (16.7) and when it does, I am on full alert. I switch to intramuscular injections (instead of pump delivery) and will make my insulin sensitivity factor (ISF) much more aggressive. For instance, if my ISF is usually 50 (2.8) , I will reduce it to 25 or 30 (1.4 or 1.7) so that my correction calculation will yield more insulin. I also use Afrezza for corrections. For me, any stubborn BG over 240 (13.3) or so will induce me to change out my infusion set, cartridge, and insulin. When in doubt, change it out!
I see the ketone test strips kind of like my glucagon emergency kit. Whenever I buy these supplies, they seem to go to waste. They are, however, a form of insurance, and if the ketone strips alert you to possible DKA, that is invaluable and may save your life!
I didn’t use Forxiga for long, but when my endocrinologist prescribed it we spent a good 20 minutes discussing the risks of DKA. He asked me to check ketones daily in the beginning and outlined what to do if they were high or if I just felt unwell. Interestingly, eh said that more recent studies of these medications in people with T1D have not shown an increased risk of DKA, possibly because doctors are more aware of the risk and educate their patients (hopefully).
I check ketones regularly and carry a ketone meter with my backup pump supplies and insulin everywhere. I’ve never really understood the logic of never checking for ketones. Ketones are an indication that you need insulin above and beyond what you’d normally need, that you need to take immediate actions to change out a pump site or insulin pen, or an indication that you need to seek medical attention. That all seems like very valuable information to me. Being on a pump where i can develop ketones very quickly, I check any time I have an unexpectedly very high reading, any time a high reading doesn’t come down with corrections (even if just moderately high), and any time I feel nauseated.
I love a doctor that gives you the good and the bad, and gives you the choice. I love that so very much! That shows a doctor who knows and understands what might work and also knows you as a person. Some of these treatment plans might work great but if the doctor knows there is no buy in from the patient, it might be the best choice. So very cool to hear it is working for you. And don’t you just love a blood testing meter that tests for ketones?!
I stopped Forxiga after only a short time due to side effects not related to ketones. It worked quite well, though, and I might give it another try. My endocrinologist has Type 1 diabetes himself and is wonderful; the best doctor I have ever had.
I’m not trying to be contrarian, I think of myself as a well-educated diabetic and I still don’t have a good understanding of when DKA would happen or why I would need to be vigilant for it. Ive never tested for ketones, if I’m high I just inject more as I always would. Ive been sick with higher than normal BGs but don’t think I’ve ever been in DKA danger or close to it. Are some people more prone to it than others?
My guess would be that people with less insulin production would be more at risk than people with more insulin production. But anyone can be at risk if they are sick or dehydrated. I’ve always had ketones when I’m sick, and since going on the pump I get ketones quickly if there’s an interruption in insulin delivery.
Were you diagnosed as an adult? I was diagnosed as a kid and was in (or very near) DKA at diagnosis, so I had to check for ketones from at first morning in hospital and it was definitely part of our diabetes education while I was hospitalized. I also went to yearly diabetes workshops for kids/families where things like sick day rules (basically ketone protocols) were reviewed. My guess is that adults don’t get anywhere near this level of education unless maybe they are in DKA at diagnosis.
Yes, I was 19 and wasn’t near DKA when diagnosed. I was very familiar with the disease as my dad has had it since he was 15, so I didn’t stay for any education and left the hospital soon as I could. My honeymoon lasted almost 3 years which was probably due to being diagnosed as an adult. I do not have the rebound effect that some people say they have after lows who were diagnosed as adults though.
It can be very hard for someone without local (family?) support to handle both T1 and a serious flu-like illness on their own.
I myself had chicken pox at age 20 while T1 and in retrospect I probably should’ve been in a hospital for most/all the time. I went home for a week from college to deal with it, but it’s not obvious that had I forgotten to take a shot, that my parents would’ve known exactly what to do or when to do it.
For a young kid thousands of miles from home it would’ve been way harder than for me.
I think it’s asking too much for a T1 living alone to just “be aware of DKA” while extremely ill. They really honestly do need continual “checking in on” by someone local. It’s a very slippery slope, even just hours, between “sick and struggling with high bg’s continually taking large doses of insulin just to try to stay on top of things” to sleeping for 8 hours and missing a shot and into full blown DKA.
There is a lot of failure to understand in the medical field too. The endo group I saw after my 2nd near dka told me not to go to er unless bg was 400 for several hours with ketones. Wtf?
So tragic that this happened, and will happen again.
If I go over 200 I inject and change inset as well usually. High ketones and nasuea etc. I go to the er.
I think “being aware of DKA” just means being aware of the risks. Part of being aware of the risks is being aware of when it’s time to seek assistance. If you’re so sick that you’re struggling to take basic care of yourself like monitoring BG and taking insulin even when setting alarms (and if that’s the case, very likely also struggling to eat and drink regularly), then it’s time to seek help. That can mean local help from family or friends if available, or medical assistance by calling your medical team or going to the hospital. Sadly, I think some people in the US where cost is an issue see the hospital as a last resort, when really it should be there as a resource for anyone who feels they have a serious medical issue.
I’ve never had DKA in the 52 years I’ve had type 1 diabetes, not even at diagnosis, but since people have different genetic dispositions to develop DKA, I may have been just lucky. I don’t see how anyone misses a DKA diagnosis, since typically the room is filled with the scent of nail polish remover as soon as the patient enters.
Unfortunately it is missed way too often. You can read story after story of people not being diagnosed correctly and slipping into a coma. And as you said each of us is so very different and how long we go without insulin before it becomes deadly is very different.
In my 47 years went DKA twice, once on diagnosis due to a mix up at the lab, almost died. And once with a perfect storm situation with a large steroid injection in hip and pump issue at the same time. And I tried everything to correct the problem but couldn’t. So when I had that horrible feeling(which is why I hate higher blood sugars) and almost couldn’t get out of bed, I called the doctors office and was told to go to ER. DKA and it was only about 4 hours with no insulin. For some of us it doesn’t take long. But in that short time, blood values were so bad, they wouldn’t release me. But IV, some insulin and potassium pills(yuck), I was out in under 24 hours.
But my main point here is diabetes is such a tight rope disease. We walk a very fine line between too high and too low and swinging one way of the other could be deadly. Which is way so many family members are so con when one of their loved ones with diabetes is on their own. My parents were freaked out when I went away to school and my husband is on high alert when he is out of town. It is a scary disease that we must always be ready for whatever is thrown our way. DKA is nothing to shrug off. It might take a little longer to happen vs a low, but is something we should all be taught how to handle. Those sick days can happen to any of us.
I should correct my earlier statement that I never had DKA, because I may well have, though I did not notice (nor did anyone around me) the characteristic nail polish remover scent. Because of an airplane accident in which my insulin supplies were lost in a third world country, I was left without any insulin for an extended period and forced to carry heavy luggage through what seemed like endless airport corridors as part of the rescue process. I was nauseous, vomiting, and I could sense that my consciousness was dimming, but I had no choice except to it nothing, keep well hydrated, and struggle on. When I finally got to an aid station I was quite disappointed to find that they only had NPH insulin, but I took a large dose of it and almost instantly my symptoms vanished, though standard medical practice uses i.v. fast-acting insulin in such a situation. The NPH alone made it possible to hold out until fast-acting insulin became available. This all happened long before modern insulin technology, back in 1982.
