Ketones are like the mud icing on the dirt cupcake that we call diabetes. As if dealing with Type 1 diabetes were not enough children and adults with T1 must also be very mindful of deadly ketones which can appear for obvious reasons, like pump malfunction, or out of the blue perhaps because of an external sick joke.

Ketones put your life on hold. You cannot exercise, travel, go out, move around, anything until they are cleared. If they climb it could be deadly. Once ketones are present it is of the utmost priority to rid the body of them.

Normally I don’t include medical descriptions in the blog, but I have found a good explanation of ketones at If you would like to learn more, read on.

Ketones are a by-product/or waste product when your body burns stored fat for energy. Ketones can be measured in the urine with a visually read strip, and in the blood by using the Precision Xtra® meter. Before I describe various situations in which a person might have ketones, let me provide a simple review of how the body works:

  • The foods you eat break down into glucose (sugar). Glucose travels in the blood and into your cells. Insulin is a hormone (or “key”) that “unlocks the doors of your cells” to allow glucose to enter your cells where it can be turned into energy. So without insulin, glucose wouldn’t be able to get into the cells.
  • Your brain (and the rest of your body) requires glucose to function. When you haven’t eaten for a while, or during the night when you’re asleep, your liver releases stored glucose to keep you supplied with energy.
  • If you don’t eat for several days, the stored glucose in the liver is depleted, and your body is in a starvation state. In this situation, the body will break down stored fat to get energy, (and ketones can show in the urine, indicating that fat was burned) and also the body will create sugar out of other substances in the body in order to supply the brain with glucose.

So if you keep in mind that fat burns when there isn’t available glucose (that is, when the body is starving) and ketones indicate that fat was burned, then the following situations will be easier to understand.

Situations where you could have ketones:

  • A non-diabetic can show ketones if he/she hasn’t eaten for several days, or is on a severe weight reduction diet. In this situation the body is starving, and there isn’t enough available glucose, so fat will burn for energy and the by-product, ketones, may show in the urine or blood.
  • Pregnancy: During pregnancy, you are eating for two. If you aren’t eating enough, your body will burn fat to get more energy. In gestational diabetes (temporary diabetes during pregnancy) and in pregnancy with pre-existing diabetes, women are advised to check ketones each morning. If the blood glucose is normal but there are ketones present, usually the mother will be advised to increase her bedtime snack (but you should first check with your healthcare professional).
  • Hypoglycemia if you are taking diabetes medication: When no glucose is available, your body is in a starvation state and will break down stored fat to get energy. It is not necessary to check ketones during hypoglycemia and these ketones are harmless. When the blood glucose is low, it is most important to immediately correct it with proper treatment of a fast-acting sugar such as glucose tabs, fruit juice or a regular soft drink.
  • High blood glucose: High blood glucose means you don’t have enough insulin to allow the glucose to get into the cells, so the glucose is piling up in the blood and/or being excreted in the urine. Your body needs insulin to use glucose for energy. So if you don’t have enough insulin, your body will start to burn fat for energy.
  • Insulin pump malfunction or dislodged pump set: Insulin pumps provide a continuous delivery of background insulin. If the supply is disrupted due to a pump problem or a clogged/dislodged pump set, then no insulin would be available and, as noted above under “high blood glucose,” you will start to burn fat for energy. Insulin pump users are trained to check ketones and to check the pump connections anytime there is unexplained high blood glucose, for the ketones may indicate a pump malfunction.
  • Illness/stress: When you are under physical or emotional stress, your body needs extra energy to fight it. Hormones are triggered, which tell the body to release stored glucose in an attempt to give you more energy. If you don’t have enough insulin to help this glucose get into your cells, your body will again burn fat for energy.
  • Exercise: Exercise requires extra energy. If you haven’t eaten enough or if you don’t have enough insulin available to allow the glucose to get into the cells, again the cells are starving and will turn to fat for energy.

When ketones are a concern with high blood glucose:

If you don’t have enough insulin available in your body, and the blood glucose rises, your body will eliminate the glucose by passing it into your urine. As your body takes fluid from everywhere it can to help dilute the urine and pass the sugar out, you’ll get dehydrated. Because the glucose is passing out through the urine, the body is starving and fat will burn. If the body burns too much fat too quickly, ketones will accumulate in your bloodstream. Ketones make your body too acidic, which will upset the body’s chemical balance. Your body might not be able to excrete the ketones adequately. In this setting, if your glucose is high, you are dehydrated, and your ketones are large, then your body’s chemical balance is disrupted and you could develop a life-threatening condition called ketoacidosis. Usually only people with type 1 diabetes are at risk for this condition, but everyone should know the signs of Ketoacidosis.

Signs of Ketoacidosis:

  • Increased thirst
  • Increased urination
  • Dry mouth
  • Labored breathing
  • Fruity breath
  • Nausea/vomiting
  • Stomach pain
  • Loss of appetite
  • Fatigue, drowsiness
  • Dry, flushed skin or fatigue

Testing for Ketones:

  • Generally you should check for ketones if you are ill, pregnant, under stress or your blood glucose is over 250 mg/dl, but first check with your healthcare professional.
  • According to the ADA Clinical Practice Recommendations, blood ketone testing is now preferred over urine testing for diagnosing and monitoring ketoacidosis.
  • Follow the directions provided on the package. If you show any ketones in the urine or blood, call your healthcare professional right away.

Too shaky to get out of bed.

That’s what my son said to me this morning when I went to wake him up for school. “Mama,” he whispered, “I’m too shaky to get out of bed.” So I ran. I ran to grab his meter and glucose drink all in one swoop. Tested. 41. FORTY ONE!!! Of course he was too shaky to get out of bed, he was about to pass out. For new readers (thank you new readers for joining us) 41 is way way too low. It means there is too much insulin coursing through his body causing the blood glucose to drop dangerously low.

While this appears to be a post about lows, it’s not. It’s a post about endocrinologist and expert recommended settings for my son’s insulin dosage. There is a setting in my son’s pump called ISF that stands for Insulin Sensitivity Factor. In simpler terms it means how much insulin is needed to drop my son’s sugar a certain amount. Some people’s ISF is set at 1:200 meaning that 1 unit of insulin should drop them 200 points. If they are using an insulin pump and they plug in a blood glucose of 350 and their target is 150 the pump will subtract 150 from 350 and get 200 and then using the ISF setting of 1:200 the pump will tell you to administer 1 unit to drop those extra 200 points. Using a pump is helpful because it can do the math for you. If this same person only needs to drop 100 points the pump will tell you to give only 1/2 unit.

These ISF settings are not pulled out of the air, they are recommended by the endo or experts based on the person’s Total Daily Dose of insulin or TDD. Experts use the 1500, 1800, and sometimes the 2000 rule that was created by even more expert endos to determine what ISF you should be using. My son’s ISF is supposed to be set at 1:90 according to the amount of insulin he uses during the day. The problem is is that my son’s body did not read the same material that our endo studied, or the other experts, and when we use an ISF of 1:90 while he is sleeping he drops like a brick.

Yes, as the main caregiver of my son and his diabetes I do have the ability to change the ISF to whatever I wish. In fact, my son’s ISF for the middle of the night is 1:105 and that still dropped him like a brick last night. I have already changed the ISF to be 1:120 for tonight in case I need to make another correction.

But herein lies the problem. I am not the trained endocrinologist. I am a mom. I can only make my changes based on what I ‘think’ my son needs. I have no research study to back my decision. Once I veer away from the settings that our endo recommends it becomes an issue of “Swim at your own risk,” or rather “Make changes at your own risk.” Every change I make that moves farther and farther away from what my endo says moves me farther and farther away from the only hope of support that I have. And quite honestly I desperately wish that I didn’t have to veer from the recommended settings. I wish that my son’s diabetes was textbook so that we didn’t have any unexplained lows or highs. I wish my son’s diabetes came with a handbook, but it didn’t.

Once I move from where the endo recommends I am then put in a position of defending my choices, which is not a good feeling when your only reason for changing is gut instinct. It’s hard when your kids buck any system, and it’s even harder when they buck the diabetes system because you are travelling on uncharted territory when you make changes, but the wrong change could be disastrous…for your child…your baby…the love of your life.

It’s good that we have experts in the field to guide us along, it’s not good that some people still pretend that diabetes care is written in stone. Unfortunately much of taking care of person with Type 1 diabetes is trial and error. I am not an expert, but I am a mom whom will do whatever it takes to keep my son safe, even if he doesn’t fall in the ‘recommended settings’ realm.