Fear of DKA – what we know, what we don’t, and what we NEED to know

Type 1 and LADA
1

Now I had a slight knowledge of what DKA or Diabetic Ketoacidosis is, thanks in part to my being an Administrator of this site, but no REAL knowledge. So I set out to find what I didn’t know. I asked lots of my friends with diabetes, many of whom are T1’s. They either haven’t had a case of DKA or experienced it when they were young, at the time of diagnosis. I wanted to search out the facts, as there is such a fear related to DKA, and I wanted to truly know why.

WHAT WE KNOW:
 “According to the Wikipedia entry,”… Diabetic ketoacidosis (DKA) is a life-threatening complication in patients with untreated diabetes mellitus (chronic high blood sugar or hyperglycemia). Near complete deficiency of insulin and elevated levels of certain stress hormones combine to cause DKA. DKA is characterized by hyperglycemia, acidosis, and high levels of circulating ketone bodies. Onset of DKA may be fairly rapid, often within 24 hours.

A key component of DKA is that there is no or very little circulating insulin so it occurs mainly (but not exclusively) in type 1 diabetes (because type 1 diabetes is characterized by a lack of insulin production in the pancreas). It is much less common in type 2 diabetes because the latter is closely related to cell insensitivity to insulin, not, at least initially, to shortage or absence of insulin. Some type 2 diabetics have lost their own insulin production and must take external insulin; they have some susceptibility to DKA, somewhat like Type 1s.

What are the signs and symptoms of DKA?
The symptoms to watch for are not always obvious. They can start slowly and can be mistaken for other illnesses. Often toddlers do not show the classic signs of DKA.

Early signs:
• Feeling tired or fatigued
• Excessive thirst and/or excessive urination
• Signs of dehydration such as dry mouth
Later signs:
• Nausea/vomiting
• Abdominal pain
• Confusion
• Rapid, deep, labored breathing (Kussmaul’s respirations)
• Breath that smells fruity
• Fever
• Unconsciousness

WHAT WE DON’T KNOW:
What damage can be incurred by DKA? Renal failure, chronic heart failure, and respiratory distress can happen due to DKA. Even after someone has survived DKA, the resulting damage can be extensive. The long term damage can inflict the value of life as we know it. “It is the metabolic acidosis that pushes you into respiratory distress and is what can kill you,” according to Holly Brewer, MS RD CDE

WHAT WE NEED TO KNOW:
I spoke with my good friend, Dr. Michael B. Davidson, who is an Endocrinologist in New Hampshire, he gave me this analogy: “Starvation in a time of plenty. Insulin is the key that lets glucose into cells, if you have no insulin, the cells think they are starving. When insulin binds to the surface of the cells, little channels open up to let the glucose move from the blood to the cells. When there is no insulin, there is a lot of sugar in the blood stream, but the cells are blind to it. Your body’s response it to try to find MORE glucose. Glucagon, and other ‘stress hormones’ are released and tell the liver to break down storage glucose (glycogen) and to make new glucose (gluconeogenesis). When the liver makes new glucose, it needs building blocks. One of the important building blocks comes from the breakdown of triglycerides. The liver uses glycerol to make glucose, but the remaining part of the triglyceride breakdown becomes ketone bodies. All of these factors act as a vicious cycle to worsen DKA.”

One of the ways that DKA is becoming recurrent, that I learned while doing the research for this article was insulin manipulation. We are seeing more cases of DKA in women now more than ever before. Taking less insulin so as to lose weight, which is truly an eating disorder in type 1 diabetics, it is known as “diabulimia,” Women with eating disorders and diabetes typically struggle with symptoms similar to those of women with eating disorders who do not have diabetes. However, they exhibit a very dangerous symptom of calorie purging in the form of insulin restriction. This was something I was quite unaware of, it is very scary to know that someone may be “starving” their bodies of insulin. I’m sure a lot of people have never heard of this condition.

How to be on the lookout for DKA:
Testing of ketones MUST be done:
• Anytime your blood glucose is over 250 mg/dl for two tests in a row.
• When you are ill. Often illness, infections, or injuries will cause sudden high blood glucose and this is an especially important time to check for ketones.
• When you are planning to exercise and the blood glucose is over 250 mg/dl.
• If you are pregnant, you should test for ketones each morning before breakfast and any time the blood glucose is over 250 mg/dl.

Call your diabetes educator or physician, as you may need additional insulin. Drink plenty of water and fluids containing no calories to “wash out” the ketones. Continue testing your blood glucose every 3 - 4 hours, testing for ketones if the blood glucose is over 250 mg/dl. Do not exercise if your blood glucose is over 250 mg/dl and ketones are present.

Have you had DKA? What has been your experience? What can you share that will help others?

2

I’ve had T1 diabetes for 24 years and only had a bout with DKA in December 2007 (exactly one week before Christmas). Here’s my experience.

My wife got the stomach flu over the weekend and since it is the gift that keeps on giving, I got it from her. On Monday afternoon, I started to feel run down and kind of “squishy”. By Tuesday morning, I was vomiting. I have not vomited like this for quite some time. I could not even keep water down. Since I wasn’t eating, I didn’t take any insulin (I didn’t want to go low and then try to bring it back up when I couldn’t keep food or liquids in my stomach). Wrong decision. The stress of the illness, lack of insulin and then the dehydration from the stomach flu all added up to DKA for me.

This is something that I NEVER want to experience again. By 5 p.m. on Tuesday evening I was in major pain. I could not get comfortable (between bouts of vomiting about every hour). I felt like I could crawl out of my skin! My wife finally convinced me to go to the hospital when she couldn’t get a BS reading on my glucometer (remember, I’m a stubborn man who doesn’t like doctors and hospitals). I was in so much distress, I said yes.

After the 5 minute drive to the hospital, I told her she would need to go in and get a wheelchair, because I was so weak I couldn’t walk. By this time, my thirst was unquenchable! It was horrible. After waiting only a few minutes to get into the exam room, I started having horrible abdominal cramps. My temperature was so low, it wouldn’t register on the thermometer (we found out later I was down to 94 degrees). When ER staff couldn’t get a blood sugar reading on the glucometer, they got worried and started moving fast (found out later I had a blood sugar of 800). I was so dehydrated they had a horrible time getting an IV started (I ended up with 3 IVs with one of them surgically implanted into my neck).

The doctors were most concerned about my abdominal cramps. They were not very familiar with the abdominal pains in DKA. During the two hours I was the ER, I had HORRIBLE pain that Morphine wouldn’t touch. They finally got me in ICU and I ended up with x-rays and a CT scan just to make sure I didn’t have any abdominal blockage, etc.

I spent two days in ICU and then two more days in the regular hospital floor. I was weak as a kitten for about a week after I got out of the hospital.

Needless to say, we have a new rule in our house. If I vomit more than 3 times, it is off to the doctor. I also have become insane about checking my blood sugar and I’m just waiting on insurance approval for my insulin pump.

3

Wow! Thanks for writing this. I learned some new things.

My only experience of DKA was at diagnosis (so I’m not sure how this differs from other experiences). I had the symptoms of diabetes for months, but ignored them (and actually thought it was either depression or cancer).

I just wanted to add one symptom to you list above, which was actually my MOST disturbing one. I had extremely painful LEG CRAMPS. To the point that they woke me up during the night and I had to get up and walk around to try to relieve the pain. I let this go on every night for about a month.

Apparently these cramps were due to a lack of certain minerals (potassium??). In the hospital, I had to drink these shakes to replenish the missing minerals. The nurses warned me that they tasted horrible, but I thought it was the most delicious thing! I guess my body was craving something!

I went to the ER when I woke up vomiting and felt like I was about to black out.

4

Kristin:

Yes, a deficiency in potassium is one of the results of DKA and a cause of leg cramps (we call them charlie horses) in the middle of the night.

During my recovery in the hospital I had to drink several drinks of potassium stuff (tasted like really strong Gatorade).

5

argh. reading about dka (which i knew was very serious) just made me VERY uncomfortable. i have been in dka once - - - when i was diagnosed. here’s the story. it ain’t pretty, but i’m doing well considering.

my father had fallen off of the roof clearing leaves and had had surgery to repair his broken ankle. he did very well during the surgery and came home a few days afterward (in time for christmas:-). about 11:30 pm on the night of 2 january 06, my mom called me to say that my dad was very sick (“heartburn” he said), but he didn’t want to go to the hospital. i went over there, took him some tums, and sat down to talk to them. he was on the phone with the doctor chatting away when he dropped the phone. i called 911 and started cpr, but he didn’t make it.
i remember being extremely thirsty between the time i stopped cpr and the emts took over, but it had been really hard to do cpr on my dad as he was in a recliner and not a petite guy (6’2", 180).
we had followed the ambulance to the hospital, and when we left the hospital, i noticed that i felt every breath going into my lungs. of course, i blamed it on the “night air”. soon after we got back to my parents’ house, my sister jane came in. we all tried to go to bed, but i couldn’t sleep. i vomited what seemed like buckets, but i thought it was because my father had just died in front of me. when my other sister pat and her husband came in, they didn’t like the way i looked. they both tried to find a pulse on me, and my sister just found one that was thready. they insisted on taking me to the hospital and i am so glad they did.
my blood sugar was 560 and i was in dka. i also had an aspiration pneumonia (i had inhaled vomit into my lungs) and tako tsubo syndrome. apparently when papa went into cardiac arrest/respiratory distress, my system was flooded with adrenaline. it fried everything. tako tsubo syndrome is also called “broken heart syndrome” because it usually happens to post menopausal women who are grieving or under severe stress. i am considered a type 1 diabetic, although i would suspect that i was pretty close to being diabetic if not one already when this episode happened. i am thankful everday that i’m in houston with a cracker jack team of doctors who figured things out quickly. tako tsubo typically looks like a heart attack, but it is not. it is simply treated with beta blockers (praise be). i spent 8 days in the hospital - - - 6 in ccu (intubated, central line, the whole enchilada). not only was i dealing with the diagnosis of diabetes, but also the death of my father. i feel extremely lucky to still be here as i was told after i got out of the hospital that doctors had given me a 30% chance of surviving. my endo even told me that he had been called in as a “courtesy” because they didn’t expect me to be “living” with diabetes.

my advice for avoiding dka?
be as on top of your bs as much as possible. if something doesn’t feel right, get your booty to your doc or to the e.r. drink lots of water. pay attention to the warning signs. i believe i saw a blog post of someone who said that if you can keep from throwing up and get your sugar down, half the battle is won (please remember i’m NOT a doctor, nor do i look like one:-).

here are the signs i had
• feeling tired or fatigued
• excessive thirst and/or excessive urination
• signs of dehydration such as dry mouth
• nausea/vomiting
• abdominal pain
• confusion
• rapid, deep, labored breathing (Kussmaul’s respirations)
• breath that smells fruity
• fever
• unconsciousness

my story is sad. the wee hours of 3 january 07 truly changed my life, but i’m healthy and happy and LIVING with diabetes. sigh.

6

Wow, what a story.

I can’t imagine how you coped with so much. But the fact that you are a “healthy and happy and LIVING with diabetes” is an inspiration.

7

I had to have IV potassium, which felt like hot metal running the length of my vein. Never again!!

8

Thanks for this essential information. DKA has always been a mysterious animal to me.

I’ve had two or three bouts with it - in hindsight - none requiring a hospital visit. They all came after turning off my pump before some vigorous exercise and the all showed up about two hours after I started. Because insulin peaks in about two hours and I ran a long distance with my pump off - two hours later I had no insulin.

Symptoms - light headed, muscle aches in shoulders, arms and thighs, weakness, stomach ache, nausea. Like a bad flu.

Bed rest and lots and lots of water helped me. I don’t turn off my pump now and I’ve had no recurrences. But I know what to watch for.

Thanks again for the informative posting and responses.

Terry

9

I’ve been a Type 1 for 35 years and with not too good control at the times it happened been through my share of DKA! and hadn’t even relized what it was!What you’ve posted has told everybody about all I can about DKA1 I know I don’t want to have to go through it again if I don’t have too! HA!

10

DKA happens, the “trick” is not letting it happen twice (ie find out you are in DKA… and then stop it in its tracks ASAP).

I had episodes as a kid back in the “dark ages” when I was sick with flu, colds, etc. Had them when I was sick since then every so often as well.

The worst DKA episodes I ever encountered was when I used a pump . My body apparently got used to the basal-background short acting insulin. Any time I disconnected, for even a single hour… BANG… DKA for Stuart

Had serious problems with delivery, infusion sets not working… proof, DKA. Not daily at all but at minimum once a week several times a month versus if I badly got sick maybe, maybe once a year, if that, .

No more pump, no more DKA espsodes

Stuart

11

The one and only DKA experience I have had was when first diagnosed. That was limited to having an unquenchable thirst and of course going to the bathroom constantly, other than that I felt fine. Well I would get very tired after eating.

In the ER they had told me I was close to the vomiting stage. I spent two days in the ICU as that was where they could give me an insulin drip, followed by a one day stay in the regular part of the hostpital and then sent home

12

Wow! I have never had an experience with DKA! and after reading all of these post I hope I never will have to deal with it. Thank you for posting your finding’s, I diff learned something.

13

I went through DKA my senior year of college. I’d been Type 1 for about 4 years, no problems. Then, I had a pretty stressful semester (student teaching, researching and writing a paper for my honors college, being a head resident, and trying to have a life otherwise!) and got sick. I thought I had, or might have actually had, food poisoning. But it kept getting worse. I started throwing up and eventually dry heaving more and more, and like others have said, didn’t want to take any insulin because I was afraid of going too low–even though I tested my sugars which stayed elevated and at times got higher. (My mom, also Type 1 and an RN had warned me years before about vomiting/sickness causing bs increases, so I was on the look out for it.) Despite not keeping down anything for so long, I had taken some insuln but kept thinking If I take more insulin, my sugars will drop too low, and I won’t be able to get them back up if I need to.

I spent what seemed like hours in bed exhausted from vomiting but too physically pained with stomach cramps and an excruciating, all-around, full-body pain to sleep…wanting to “crawl out of my skin” is the perfect description for how the pain felt. A friend who knew I was sick kept coming to check on me, and at one point, she said, Sarah, you look really bad. You don’t have any color. Do you want me to take you to the ER? I really think I should take you to the hospital. You look so bad… I agreed that I was too sick not to go and called my mom to let her know what was going on. She immediately left to make the two hour drive to meet me at the hospital in my town.

Being in the waiting room instead of my dorm room was like moving from purgatory to hell, but at least I had the tiniest bit of hope that if I did manage to die (which, in all honestly, is exactly what I felt like doing the whole time), I’d be where someone would notice pretty quickly. When I was finally called back, I could barely see or move, so my friend helped me get back to the exam room. I remember being “processed” and then having to wait for some test results. My super-awesome nurse explained everything that was going on, that I had KTA, and what they were going to do about it. It made me feel better that he was telling me all that, but I was too out of it to process anything. I just felt relieved that someone was going to be able to do something and that I wasn’t going to feel like I did forever. At some point, my mom got to the hospital and I was put on a gurney where I proceeded to do my best to pass out. I guess I must have.

The next thing I remember was being on the gurney, surrounded by curtains, and I assumed, other people on other beds nearby. I was very groggy and only woke up because Mr. Awesome Nurse was there to check my bs or something. When he saw my eyes open, he told me what he was doing and asked me how I felt. While I was trying to understand that we were having a conversation, he answered for me: You feel pretty bad, huh. But better? I agreed, then he asked me You know what you smell like, Sarah? (I didn’t.) He answered, Nail polish remover. Because my body had been producing acetone from the DKA…kinda cool to know, but not a cool experience to say the least!

Never again, y’all!

14

Yes, I had DKA several times in the 2 years prior to my Type 1 diagnosis and only once afterwards. The recent time was when I didn’t take enough insulin to cover my needs on the day of a hike. My bs was normal during exercise, but I paid for it the next day! I’ll never make that mistake again.

Nausea, vomiting, confusion, and fatigue were the main symptoms I experienced, with the emphasis on vomiting. I would get DKA the day after eating (high carb) Mexican food for dinner the night before. This was before I was diagnosed w/ diabetes…the doctor suggested stomach pills for acidity and insisted that the fatigue & confusion must be depression. After all, my marriage wasn’t the happiest, and then he left me. I was “boring”. Well, I was sick, but it wasn’t until I had a dramatic weight loss (10 lbs one week), and constant thirst and urination that the doctor discovered it.

I wonder how many of us could have benefited from an earlier diagnosis. If the hemoglobin A1c were the standard, instead of the fasting bs level, I’d bet we’d catch a lot of people earlier…while they still have some/occasional insulin production. Or maybe if 'borderline" ketone readings in an urinanalysis indicated further testing instead of ignoring it.

I was/am a thin 40something with NO huge history of diabetes in my family, so the doctor didn’t think of it, I guess…even when I googled the symptoms and came up w/ pancreatitis, which could be caused by medication, according to the journal article abstract that I’d read and showed her. My MD ruled out pancreatitis, saying, “You’ve got to be in your 40s, fertile, and fat. You’re not fat.” Turns out that my maternal grandfather’s male cousins (who were thin) developed type 1 diabetes in their 40s. This fact wasn’t in my case history, because I didn’t know about these distant relatives.

I 'd bet that the uneducated onlooker would ascribe a different diagnosis to DKA (diabetic ketoacidosis) symptoms. Not knowing about diabetes, a person could they put together “fruity breath,” “confusion”, “fatigue,” “nausea” and vomiting," and come up symptoms of alcoholism.

It is time-consuming, having this disease. But it is also my loyal friend, who urges me to take care of my body.

Love to learn!
Learn to love!
Elaine

15

My most recent bout with DKA was just last year.

A year ago Jan I fell and tore my left shoulder rotor cuff. I had been loosing my balance a little over a couple years but not too bad. I THOUGHT my diabetes was under control, even though I seldom tested. I had not seen any doctor or a couple years, except for my eye doc. Then one day a friend asked what food was burning? I knew right then and there I was IN TROUBLE! More insulin, testing, food and especially fast carbs plus water. I though I had brought myself out of DKA in good shape. I ventured to my project house and had plans to go up and co-pilot a biplane and such while down there. I felt like I was half here and half something else, all I knew was things were not NORMAL, not even my normal.

On the drive back my BS was a little wacky but worse was how I felt. Here I was half way back home, stopped to grab a bite since it had been FIVE hours since I ate last and that was a chick-filet sandwich and diet pop. I pulled into a waffle house, hey its late night and not even Wendy’s drive thru is open. Like a robot I hauled out my Glucometer and here I was in the low 300s! OUCH! I had gone back to 2 shots a day, increased my insulin and my BS was UP? Anyway being a bit confused I did have the presence to call 911 and asked what to do. My BP was also sky high something like 200+ over 110 or 120 somewhere in that area. They wanted me to go to the hospital but I did not want that, so it was agreed I would stay at the motel-6 overnight and take a break and watch things and call back if I needed. My BS did come down below 200 before they left. I called my wife, asked her to make me an appointment ASAP and I would be home late that night, after the lay-over.

When I did get back home one of my kids took me to ER and they got me stabilized and released back home to follow up with a doc the next day. Problem is I learned that I did NOT have the doc I thought my wife had set me up with previously (just in case). I had to go to the walk-in and there was referred to Dr. FlipFlop. (my pet name for a logical obvious 2 me reason).

I crossed his threshold barely able to walk under my own power, in short a whale of a mess. MY BS still not in GOOD control, BP way too high, balance shaky and in need of shoulder surgery, Dr. flip flop worked on my insulin routine making adjustments every other week till things got better. At least I had brought myself out of the fruity stage, but COMPLICATIONS from the DKA still haunt me. My balance is still not good, took 2 surgeries for the shoulder cause the first one did not heal well due to being out of control. The list is not a short one of doctors I now have. From NO doctor to a couple surgeons, a cardiologist (ya heart problems to), a new eye doc (2 surgeries last year, plus a laser session), a foot doc (new problems there) and even though I am in better control now I have a Nephrologist ‘cause my kidney function has been on the decline.

DKA is no fun, and even though I recovered mostly, many of my systems are still not up to snuff, not even back to where they were before the latest DKA bout. The after effects of DKA this time, unlike previous bouts, will be with me the rest of my life now. DKA and diabetes affects every system in your body and just because you bounced back with no complications before does not mean you will bounce back to your normal the NEXT time.

(&( GOMER been there done that more than once.

16

Well Bless your Heart you had a time of it. I am sorry for your heartbreaking loss, losing a parent or anyone you love is just devastating. I’m happy to know you got through it all and are now doing well.
I am a T1 Diabetic for over 50 yrs now. My experience with DKA was a bit different than ya’lls. My husband died of cancer and while I tended him at home, I noticed I was just not very hungry and had to force myself to eat. I had to cut down my insulin doseage and adjust it to the amount of food I could get down…because I was having to many lows. This is not unusal for me, because when upset or mad or hurt, I react emotionally thus no appetite. Part of this was due to stress and tending my husband, (he did not want to die in the hospital and wanted to come home so,…I tended him at home along with hospice until he died in my arms with his head on my shoulder. Well anyway after the funeral, I went back to work and I did not want to go home to my empty lonely house. I began to work long and hard hours 16-18 a day. Still I was not hungry and ate a bite or two of this or that for meals. I already had what I call Terminal Fatigue during and after the time I buried my husband. I had no nausea or vomiting, stomach cramps or leg cramps and no breathing problems at all, I did feel sick though, a different kind of body sick all over. The next thing I noticed was that all of my clothes started falling off of me and my friends, neighbors and church family started to tell me how badly I looked because of all the weight I had lost. I said "Gee Thanks LOL. I had never heard or experienced DKA before and had no idea what was happening to me. And no, I had never tested for keytones ever. So finally when I couldn’t get out of bed to go to work one morning, I went in to see my doctor and that’s the first time I had ever heard the term DKA. He told me to start with ensure along with my few bites of food and eat better and get tight with my control. Well here I am 13 yrs later so for me I guess I was luckly. Two years after the DKA episode, I did have a heart attack and bipass heart surgery. Whether the DKA contributed to my heart surgery is not known, it was probably a combination of stress and overworking~Blessings to ya’ll~Sande

17

I have had DKA 23 times. The first time I was in a fight with my mom and she thought that I was using a blood sugar as a way to get her to play nice. I started throwing up and told her to help and she said she would give me a suppository thinking I would run away and admit I was faking. I told her fine because I felt so bad. Even after having it I puked for an hour straight. My mom knew I couldn’t be faking it and called 911.

By the time the paramedics got there I couldn’t breath, I was so pale I was transparent, and I was completely out of it. I had breathing tubes, 4 i.v.'s, i was being given magnesium, sodium, everything because my body was so dangerously low on it all.

After that I developed it so many more times I was minutes from coma and felt normal.

18

Same here, before I was diagnosed I had some really bad leg cramps. After my sugars normalized they just went away. And my feet would swell in hot weather until my ankles pretty much disappeared.

Add the huge ketones, weight loss and the funny tingling in my feet at that time and I really wonder how much damage that did to my organs and how much damage I could have prevented if I had just gotten myself to the doctor earlier. I knew something was off at least two weeks before I went to see him.

Kat

19

In 1978 before self blood glucose testing was available I was back packing in Wyoming. Got up in the morning and started vomiting. Even threw up water. We were camping 20 miles from the nearest road. My buddy hiked out that night and a helicopter flew in the next morning. It was like Mash they strapped me on the outside and away we went. Upon landing my BS was 880 and I was 5 units low on fluid. I was blind and hallucinating. 30 years later it seems no serious damage resulted. I learned the value of basal insulin and the ability to test. This was my only DKA experience and my last hospitalization. TEST TEST TEST and keep your BS under control.

20

At what ketone number is dka? I was told to worry after 0.6 for my son… he took his pump off in his sleep and went back to sleep for 4 hrs before I woke and found it off… I put new one on and dosed him and checked… 0.4 ketones… highest since he was diagnosed. I am still freaking out by the way… but he seems ok… gonna check him again soon.