DKA - 15 years post diagnosis

Type 1 and LADA
1

Hi all! *waves*
I've not been active on this site in a while but I wanted to see if there was anyone else out there like me.

I was dx 15 years ago this March, just through a vigilant parent who could tell something wasn't right with me. I never went into DKA and honestly, never really knew what it was or how to avoid it other than keeping my blood sugar under control.

I didn't take care of myself for a good 5 years, only taking my long acting insulin, but never checking my sugar and never bolusing for meals. I can only imagine what my sugar was on a day-to-day basis. My a1c's, when checked were generally about an 8.

Flash forward to two years ago, I got married & promised the hubs I would start taking better care of myself. I got on the Omnipod & got a Dexcom cgm. My last two a1c's have been 5.9 and 6.2, which my endo was completely thrilled with (and gave us the green light to have kids, which we aren't yet).

***POTENTIAL TMI WARNING***

Sooo a couple Saturday's ago, I attended a bridal shower where there were NO healthy food options. EVERYTHING was sugar sugar sugar and I was starving so I bolused as much as I could and ate. My sugar was off the screen of my Dexcom (over 400 for those of you who don't have one) but I figured it'd come down eventually once I metabolized all that junky sugar out of my system. And it did. The next day, Sunday, I was feeling pretty crappy and at 11:15 I started tossing cookies - which is extremely extremely rare for me, and that should have been a big huge blaring warning signal right there. It'd been 12 years since I'd thrown up and I'd never thrown up like this. I was back in the bathroom every two hours, but when I couldn't hold down water, I knew I was getting dehydrated and I needed help. I had thrown something in my back from vomiting so every breath hurt and I couldn't even catch my breath (still not sure what caused that).

Off we went to the E.R., aka: the longest car ride of my life (we only live 20 minutes from the hospital). We told them we suspected DKA and I was seen right away. Well, "seen" as in, they took me to the back and started processing me. I was pretty offended at the way a couple of them asked "How long have you been diabetic? Why did you stop taking your insulin??" To which I breathlessly and as forcefully as I could, answered, "Fifteen years and I DIDN'T STOP!" But I guess they had to assume that; after all, what kind of dummy veteran diabetic allows themselves to go into DKA?? **raises hand**

Later that night after a tortuous ER experience (they couldn't get a vein to get an IV in me, I was so dehydrated, I kept begging for water even though I knew I would throw it up, I kept having to get up to use the bathroom, even though my back was in such stabbing pain), they moved me to ICU where I stayed for another 2.5 days. They think I had some kind of UTI as well which may have lowered my immune response and made things worse? I haven't seen my hospital records yet, but I'm pretty healthy as far as things go - never any colds or flu anymore and barely any allergies. But I bounced back fairly quickly, judging by how irritated I was once they moved me to a regular recovery room for one night. I stayed out of work for another full day, used the weekend to recover, and headed back to work the following Monday.

Overall, it could have been a LOT worse, but I also should have recognized the signs of DKA (I was never really shown or taught that) and gone to the ER sooner.

But now it's like my body has re-set itself. I'm at the opposite end of the spectrum, decreasing my basal rates by 40% sometimes just so I'm not drinking a gallon of juice just to stay above 70. I'm trying to ride it out for a while to see if my body will settle into some kind of pattern--thank God for my Dexcom! I have a follow up visit to the endo scheduled in June (couldn't get it any sooner, but they need time to look through my 281 page hospital notes!).

I really want to hear if anyone else has experience with DKA after having T1 for a while and how their body reacted afterwards.
Thanks for reading!

2

I was a slow-onset adult T1D, so I didn't experience DKA at diagnosis. I haven't experienced it since then either. Sorry I can't answer your request but I'm curious about your recent DKA experience.

You reported that your BG did come down after your bridal shower event. Did it come down to normal, like < 150 mg/dl? Were you on the Omnipod the whole time? Did you change your pod when you starting throwing up?

Did you know your BG when you went to the hospital? Did the hospital measure your BG when you showed up? Did the ICU use IV insulin? How did the hospital handle your pod? Did they take it off. Did you test your BG with your own fingerstick kit?

Your UTI infection probably made you resistant to bringing down your BG.

I apologize for asking questions and providing no answers! I wish you well as you work to regain your health.

3

As to the rapid onset DKA after your bg's were normalized... is it possible something you ate (not because of the sugar) there gave you a nasty stomach bug? Descent into DKA from a virus or nasty bug can be surprisingly quick. And not your fault!

Even non-diabetics get extremely dehydrated when they are puking up everything due to a stomach bug or virus. Of course DKA is much more than that, but you get the idea, effects are very rapid.

4

Wonder if you had has a low grade UTI that was smoldering in the background and you had gradually upped your basal to compensate. Now that you had your major crump and they treated it along with your DKA/dehydration etc you don't need so much for your basal.
Pumping has its advantages as you can run temp rates till you find your new normal.
I use several different rates depending on my daily step totals. And I use temp basal rates to transition from one to the other. It is also helpfull when hormone jags mess with things as well.

5

It's not unheard of for a veteran PWD to go into DK when using a pump. I was Dx with DK at 34 years old and it was after 20+ years of injecting I started pumping insulin that I experienced DK again. I have learned my lessons and always correct with a syringe any stubborn highs, and any highs over 250 mg/dL. When your only using Fast acting insulin it can only take a few hours for your body to run short of insulin. I have experienced infusion sets that where completely ineffective and if left alone I would surely experience high ketones.

6

I experienced DKA for the first time, after about 25 years of D. I had a cannula clog when I fell asleep. It was terrible. The next day, I was throwing up for hours. My BG was 230.

7

Sorry for the delayed response. I used to get emails notifying me I had a response to my post, but I haven't seen any for this.

As to your question about a stomach bug, nope. I never actually felt SICK. My stomach was fine the entire time until right before I threw up. That's why it was really weird to me.

8

Ha ha! Lots of questions! Let me see if I can answer them all.

After the shower, my bg came down to about 380 and sloooooowly kept dropping from there. I believe it was about 250 before it started bouncing back up again.
Yes, I was on my Omnipod the entire time. I had no idea I was in DKA, so that's why it didn't occur to me to change my pod.

When I got to the hospital, I think my bg was back up in the 400 range. I remember them checking it right away. They did make me stop using my pod once they finally got an IV in--well, two IVs, one for fluid and one for insulin {which was NPH or something like that, the old school one--shouldn't they have used the same one I'd been on?). They didn't take it off me, but told me to turn it off. I finally took it off after a couple days when I was a little more "with it."

I let them test my sugar the entire time--and I had the welts on my fingers to prove it. I kept my Dexcom on the entire time. I don't think they even realized it was there, it was stuck on the back of my hip. My husband would watch the graph as my sugar came down and he would calibrate it based on whatever the results of their fingerstick test was. Overall, they matched up pretty well. I was running in the 200's for the most part, but I attribute that to weird/new/different insulin.

I was a little shocked that 1.) the diabetes educator that came to speak to me didn't know about Omnipods & Dexcoms. As my husband says, "these should be an option for every diabetic!" 2.) the hospital was using such an old version of insulin and didn't ask what kind I'd been on currently and 3.) the hospital pharmacist had NO idea what a compounded medication was (my thyroid medication).

9

Ironic, isn't it, that the "fast" acting insulin takes several hours??
And you're right, I should have used a syringe when my bg wouldn't come down.

I'm still confused as to where the DKA line begins--once you've had ketones for a certain amount of time? The size of the ketones? What determines when you're too far across that line?

10

That sucks. Annoying that they can't alarm and tell you when the cannula gets clogged or kinked or pulls out, isn't it?

But 230 is a normal day for me - well, not as much anymore.:)

11

I did lower my afternoon basal rates, just to start experimenting. And I'm quicker to run a temp basal when I know I'll be working in the yard or around the house now too.

Still have no idea about my full diagnosis, whether I actually had a UTI or not. My medical chart was 281 pages, as I mentioned, and would cost me $65 to get a copy. Although I may call and request an emailed copy now.

12

This happened to me once. I was pregnant and didn't know it. Pregnancy in first trimester can drastically drop your insulin needs, since the fetus is sucking in the glucose as it grows. In addition, you can get DKA very quickly, even at levels that typically don't cause DKA. I was in the low 200s when the DKA occurred. I had put my pump on suspend at the gym to keep from dropping too low, but instead it shot up and I developed DKA. I hope you're doing well.

13

yikes that really surprises me the only time Jacob was remotely close to dka was an occlusion during the night ( no alarm) he threw up around 1 am and his blood sugar was over 500 I assumed you had to be way up there to go into DKA, Jacob can be 230 and say what that's not high gghhrrr his avg is 140-150 ish but 200s are seen frequently I guess vomiting is a huge dka clue....

KCCO glad you are feeling better sounds like it was a combination of factors but perhaps an occlusion for you as well?

14

Hi KCCO-
I don't ever want to hear you call yourself a dummy veteran diabetic again! Diabetic warrior more like it. Unfortunately, sometimes life gets the best of us and sickness, a clogged infusion site or occlusion, or even denatured insulin (don't leave a bottle in a hot car!) can cause DKA. I have had T1D for almost 26 years and several years ago I ended up in the ER with DKA due to occlusion overnight, like someone else posted here. Thankfully the medical team managing me was respectful and understood that it was an issue with my pump, not with my diabetes control. But I have to say- even if it was an issue with my diabetes control, or if I had "forgotten" to take insulin- don't I deserve the same respect as any other human being in a life-threatening situation? I work in healthcare and am always alarmed by the condemnatory tones and attitudes directed at diabetics of all stripes (T1 and T2) regarding their care or lack of. This is a tough disease with a lot of unpredictable moments and medical professionals need to unlearn some of their attitudes towards diabetic patients. A kind word or a harsh one can make a big difference to someone struggling to understand their disease.