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

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.

“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 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

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?

Landileigh - I have had two episodes of DKA in my 34 years of T1. The first was about 20 years ago. My brother had just died of AIDS and I had spent the previous 10 months participating in his care. I was emotionally and physically drained. I had gone for a bike ride and was about 7 miles from home when I suddenly felt nauseous and literally threw up in the gutter. I didn’t think anything of it and made my way home. I just thought I had a stomach bug and waited 2 more days. Then I started having trouble breathing and thought I was having a heart attack so I went to the ER. I was in the hospital for 5 nights and my recovery seemed uneventful.
The second was about 10 years ago and we still don’t know what caused it. Sure, I was certainly not taking care of myself but my sugars were not running any higher than usual. I knew right away what it was and again went to the ER. This time I was rushed to intensive care, because my blood chemistry was way out of whack. I remember the snippy resident saying to me, “you’re very sick and your life is in jeopardy”. It was a teaching hospital and all sorts of med students were hovering around me, wide-eyed (that’s a whole story for another day). I had to spend 2 nights in intensive care and then one night on a med/surg floor and then went home. But this time I felt horrible for weeks after, like I’d been through a war. Maybe because I wasn’t as young as the first one. I didn’t think I’d ever get back to normal. But, eventually I did. The doc said that DKA is like making someone run a marathon without having trained first.
So…I truly don’t anticipate having a 3rd episode. My hospital bill for the ICU stay was $40,000. Fortunately I had insurance.

Sorry, I guess I didn’t really say anything that would help others. So I’ll add that at both points I was not testing my urine for ketones - did not even have any ketostix on hand. Also, if you even have the slightest suspicion that this is happening, get to the hospital immediately. I think it’s much easier to nip in the bud that deal with a full blown episode.

i think that we learn from each other. and sometimes just telling your story, tells us so much more. thank you kathy!

What a great educational article, thank you very much!

I did not have DKA when I was diagnosed, but I did have it once about 8-9 years after my diagnosis. I was on the high school cheerleading team, and for the first time ever, we won a spot to compete at a national competition in Florida. It was in the winter, and cold in Virginia, but warm in Florida. We think the insulin in my pump crystalized, because it just stopped working. I spent about a week at a hospital in Cocoa Beach. When I got to the ER, I kept telling them I needed insulin, but they didn’t listen to me! They kept ordering more lab tests. Finally, after a few hours, they put me on an insulin drip. By then, my “blood gases” were out of whack because my blood was too acidic. My parents drove all night to get down to Florida, and things improved once my mom was there (she is a nurse and a great advocate!!). Someone later told us that in Florida, they don’t know how to treat you unless you’re 65 or older, so that’s why they had no idea how to treat a teenager who had DKA! (I hope that’s not still true!) Anyway, I missed the competition and felt terrible that I had disappointed the team.
I would recommend that all T1’s be sure that they’re very familiar with the symptoms of DKA. I did not immediately recognize that my labored breathing was due to DKA, and I probably would have gotten to the hospital sooner if I knew the symptoms right away.

I have experienced DKA 3 times. When I was diagnosed 30 years ago and again when I was about 18 y/o. I was under a lot of stress at home and was not taking very good care of myself at the time. I spent several days in ICU. It was not a fun. Another time was when I had purchased a insulin air pen. Obviously it was not penitrating well enough to get the insulin through my skin as it should. I spent another couple of days in ICU. This time with a small child and away from my family. We were in the military and had just moved to a new town. I have a wonderful husband that was there for me and took great care of our little one.
My daughter was diagnosed last July at 17y/o. Luckily we caught hers early enough that she was not in DKA! I have told her of my experiences and how awful they were. Her Doc described it to her when she was first diag. He told her it will make you feel like you are minced meat and have been run over by an 18wheeler. I hope she will never have to experience it. I hope the stories and from all who have been there will help educate others and keep them from the terrible experience of DKA.

I had a DKA about 9 years ago when I was 15 years of age, It was my own fault as I was a very rebellious and depressed teenager and stopped taking my insulin for about 3 days. I thought I knew what would happen but I was severely mistaken!
I ended up having to be brought into hospital by my parents, They had to wheel me in as I was too weak to walk. I was vomiting, I couldn’t catch my breath and was very drowsy.
I had to stay in hospital for about 2 weeks. It was absolutely horrible and I would never want to go through that again.
I have had keatones in in my urine since then but I have always managed to get rid of them before needing medical help.
One of the most important things to remember with DKA is to drink plenty of fluid to remain hydrated and also to help flush them out.
I find that I am more susceptible to them if I go for a long period with out eating, for example when I am ill, as illness also raises my blood sugar level.
My advice is just to check your blood sugars regularly especially when ill and to also check your ketone levels.
I hope this helps.

I would add that ketones don’t just happen with high blood sugar. You can be ill with low blood sugar and very high ketones! When this happens to my son we use sugar drinks so that we can bring up the blood sugar in order to give additional insulin.

Better than urine ketone sticks are blood ketone strips from Precision Extra. They are very handy and give a current ketone reading, unlike urine that can be 2 hours behind what is actually happening.

I had mulitple episodes of DKA when I was younger. From the age of diagnosis (I was six) until I was about 12 or so, I was in the hospital at least twice a year - maybe more than that. It got so bad, the hospital (I always went to the same one) assigned a psychiatrist to me because they thought I was suicidal! I wasn’t - adjusting to the disease was hard and I was one of three children to a single mother and she also had to care for my sister who had asthma.

I was never in the hospital longer than four days and it always felt like such a routine. Only now do I really think about the damage I’ve done to myself and I hope that my remaining years are relatively healthy.

I can’t say I was ever afraid when I was going through a DKA. I was so young, I was always around my family who knew what to do. I am more afraid of being low and passing out and not being able to communicate than I am of DKA.

I went to the ER because I was throwing up once. I had unknowingly had high BG all day because my meter was malfunctioning. But by the time I got to the ER, my BG was in normal range. And so they tried to give me JUICE and three tylenol. Because, you see, I was dehydrated and had a “headache”. I didn’t own ketostix at the time. I had asked my doctor about them, and she said in horror, “why would you need those?”

I have had one experience with dka, i was diagnosed with type 1 by way of dka. I was 47 years old when this hit me. I know kinda old to suddenly get type 1 especially with out any prior indicators of diabetes. I spent 7 days in the hospital, 3 of which was in icu. They didnot tell me it was life threatening, other than to say that if i had gone
home from the that saturday instead of being admitted to icu I would have died. They had sent me to a bigger hospital by way of ambulence that day with an insulin drip with morphine in it for pain which I didn’t really know about until I got the the other hospital. Anyway to also add to what we know. I have found out that there are drugs out there tha can bring on type 1 or dka. My endocrinologist told me I can no longer take any anti inflammatory drugs, that the drug Feldene caused my type 1. Also what i found out after the fact is that these drugs should be monitored by way of blood tests while using them. I hope this helps others to not go through what I have. to my knowledge no one in my family is type 1, type 2 yes.

Diagnosed DKA in 1990 at the age of 10. No history of diabetes in my family. Had had all the telltale warning signs, but it was a hot summer so no one found it odd that I was lethargic and drinking 4 gallons of water (literally) a day most of June. I had uncharacteristic bedwetting for my age. By 4th of July weekend, I was in bad shape. Non-responsive and unable to stand. My mother rushed me to the emergency room of the nearest hospital. I was recognized by the ER doc immediately as T1 DKA. My BG was over 1000, which is where their device topped out.

The option that ER team chose was a poor one, but this is where my story may be atypical so it’s worth mentioning. Their goal was to get my sugar down until I could be rushed to the T1 Diabetes team at Children’s Medical Center by ambulance. So they made the odd decision to give me intravenous glucose (I think) to push me higher to cause a crash. I’ve been told that this could have resulted in serious brain damage and the care team at the next hospital were concerned for the next week or so.

Once at the second facility, I was comatose. I remember coming in and out of it and being aggressive, feeling parched, and hypersensitive to everything from the IV to the oxygen tube (which I kept pulling out because my nose was cold). Over the next three days, as they tried to bring my BG down by more conservative measures, I was in and out of consciousness. They would do frequent neurological tests because of the threat of brain damage. “Count backwards from 100 by 7s.” (I was 10. I still have trouble doing this!) “Do you have any siblings? (Yes, one brother.) How old is your sister? (Whu-huh?).” The effects of acidosis on your brain functioning were apparently a major concern. Mostly, for a week or so, I was exhausted, annoyed, and weak. I hope not to experience it again.

This can happen to type 2 diabetics. My husband had an episode this Sunday and was in the hospital 2 days. he has lost weight steadily for 16 months (over 100 pounds) and recently he has been nauseous when he eats breakfast. it has been like that for over a month. Then Sunday he just went downhill really fast and wound up in the hospital. Doc said there was no insulin in his body (?is that possible?) and his urine was full of sugar, protein, blood and ketones. Since we never heard of this we were shocked especially since doc said that my husband could go into a coma. I need to learn more about how to prevent this from happening.