Invoking Invokana and Type 1 Diabetes

invokana_fbookFirst off, I am going to slow your roll a bit, before you have a hissy.

I’ve said it before. Here’s proof. I may be many things, but I am not a medical professional.  The choices that I make in my daily diabetes management, especially when it comes to medications, involve a lot of research and shared decision making with my CDE (who also happens to have Type 1 diabetes).

Please do not take what I say and freak out about what I am choosing to do or march into your health care teams office and demand to do what I am doing. 


I began taking Invokana about 3 months ago. It’s a sodium-glucose co-transporter 2 inhibitor. Big words for a little pill. This drug works to lower blood glucose levels by preventing the kidneys from reabsorbing some of the filtered glucose in the blood. That filtered glucose is then… excreted. (You pee it out.)

It’s also prescribed for people with Type 2 diabetes and “not indicated for people with Type 1 diabetes.”

But I knew that some individuals with Type 1 had been prescribed it off-label and saw dramatic results. I asked them privately about their experiences. About a year after I did my original research and inquiry, I approached my CDE.

My A1C didn’t suck, but I was having difficulty with my post-prandial spikes (and subsequent lows), even with pre-bolusing. One of the benefits of taking Invokana as a Type 1, I was told, was the flattening out of the post-meal spikes. That was what I was after.

Why didn’t I choose a medication approved for Type 1s? Because the side effects for that drug were worse than the benefit, given the fact that my stomach is pretty sensitive to start.

My Experience with Invokana

The pill is taken in the morning immediately before my first meal of the day. For someone who isn’t a big breakfast eater, that was my first adjustment. (So, I’m thugging it and it’s a win.) Having the luxury of watching my CGM graph throughout the day, I immediately saw the impact. The post-prandial spike didn’t happen. It was more of a bump. And because I didn’t overcorrect (and I am prone to do…), there wasn’t a low following the high.

Yes, I pee a little more. But because I MUST drink more water to help flush out the glucose, I am also more hydrated than I’ve ever been. (And I’ve… shock… cut down on the amount of Diet Coke I drink.) So, thanks Invokana, for helping me get my daily water dose!

The highs I do have aren’t that high anymore and the lows that I have aren’t that low anymore because I’m not chasing and overcorrecting. I’m happy that it’s working for me.

Artwork by Holly Fischer
Artwork by Holly Fischer

Not Everyone Has The Same Experience

It’s worked for me, but it doesn’t work for everyone, just like most drugs.

There are downsides: you are at increased risk for urinary tract infections yeast infections (both men and women). You must be able to drink a lot of water, as this drug can cause dehydration. It can also cause hyperkalemia (high potassium levels in your blood), which can be really, really bad.

If you’ve got any kidney or liver issues, it’s a no-go for the prescription. And if you are planning on becoming pregnant or are breastfeeding… nope. Don’t take it.

Last, but certainly not least, the latest info out has shown that people with Type 2 and Type 1 are at a higher risk for eDKA.

eDKA – Euglycemic Diabetic Ketoacidosis

What’s the difference between DKA and eDKA? Blood glucose levels. In DKA, you’ll find elevated blood glucose levels causing the high level of acidic ketones in the blood. In eDKA, you can have a blood glucose level of 100 mg/dl and still have a high level of ketones. Unlike mild DKA, which people sometimes treat at home with the advice of a medical professional, eDKA is an immediate ER trip, because it can’t be treated at home.

What’s scary about this is simply the lack of knowledge that most Type 2s have about what diabetic ketoacidosis is… they don’t normally have this issue to worry about. (When a Type 2’s BG is high, they can have diabetic hyperglycemic hyperosmolar syndrome without ketones.) If they don’t know what the symptoms of DKA are, they might just assume they have the flu or a stomach bug… and this is incredibly dangerous and possibly fatal.

Even some Type 1s are unaware of what DKA is, how to test for it, and what to do about it, which is why prescribing Invokana to a Type 1 who may not understand how crucial it is to check ketones the minute one starts feeling off is not wise. And even those who do know can still end up in the hospital, because no one expects to be in DKA with a blood glucose level of 113 mg/dl.

Most of the eDKA has occurred after an increase in the Invokana dosage, surgery, illness, or a large reduction in insulin. (My daily insulin reduction has been about 30%, but some have had more…)

Will I Continue To Take Invokana?

Yes. In the three months I’ve taken it, my A1C dropped 4/10th of a point. May not sound like much, but for me, that brought me to my lowest in a long time, and more importantly, the lowest without major hypoglycemia. I’m spending more time in my blood glucose target range, which is exactly where I want to be.

The Takeaway?

Be an activated patient. Talk with your medical care team about what’s going on with the latest research, what’s on the horizon, and what you can do together to be healthy. If your care team doesn’t know what’s going on in diabetes, you can either do the research yourself and talk about it at the next visit… or find a care team that does.

There are a lot of different ways to manage diabetes. One person’s way may not be yours, but it may send you on a journey to find yours… All you need to do is ask and share your knowledge!


DAM: Diabetes and Sick Day Rules

1209598_63761593I thought this might be a good post for today, seeing as our entire house is under a red level threat: snot alert. The Kid developed a runny, then stuffy nose and John and I knew we were next. We were not disappointed.

I have a tough time being sick. As a person with diabetes, I’ve been labeled “sick” while feeling perfectly healthy. When I begin to feel under the weather, I always have to ask myself: “Is this diabetes or is it something else?” If I am actually just sick, my diabetes takes an extra beating, so I have to be extra careful and follow the rules.

I’m talking Sick Day Rules. This is the plan that you use, developed by your medical team, to deal with your diabetes while you are dealing with illness.

A cold is not just a cold. A fever is not just a fever. A bout with a gastrointestinal bug is not… well, you get the gist. People with diabetes and their family members go into high gear, even when we feel like we can’t get out of bed, because diabetes doesn’t stop and rest.

What’s the big deal about being sick with diabetes?

As I’ve said before, our bodies are amazing machines, doing lots of things behind the scenes that we don’t consciously control. When we get sick, the fighting commences against whatever ails us, which often involves an increase of hormones making our blood sugars harder to control and rise with normal insulin doses.

If you don’t follow the sick day rules (and sometimes it should be called sick week rules), you can end up in the emergency room, dehydrated with high ketones and blood sugars. If you don’t have a sick day rules sheet, you should talk with your medical team about it and plan ahead. You can look at some great samples here:

U Mass Memorial’s Sick Day Rules for Type 1 Diabetes

Clinical Diabetes’ Sick Day Guidelines

University of Wisconsin-Madison Sick Day Guidelines for Patients with Type 1 Diabetes

I’m not eating. Why do I have to take insulin?

Your body is fighting, remember? The hormones are waging war against the invaders and your blood sugars rise with the hormones. Even if you are puking your guts up, you still need insulin. I know, it sounds crazy, but insulin must be taken, and sometimes, in larger quantities than when you feel fine and dandy.

(You didn’t think that your body would miraculously start making insulin because you’re sick? Nah. Didn’t think so.)


As if being sick didn’t suck enough, people with diabetes have to be super-vigilant about ketones. Your body, while amazing, also fails miserably when separating being sick from being “ketone sick” – it feels the same. Nausea? Shortness of breath? Vomiting? You can be sick – or have ketones – or both. So, the only way to know for sure is… check ketones by peeing on a stick (one that measures ketones, not one you found in your backyard) or by using a blood monitor that measures ketones and glucose levels.

If you’ve got ketones, follow your medical team’s guidelines. For me, depending on my ketone level, it’s more insulin and more liquids and more frequent testing. If it’s not coming down, I’m required to call for further instructions. I’m not failing if I have to call; I’m sick and I need help.

Help When You’re Sick With Diabetes

Some people have an emergency preparedness kit with water and matches and extra batteries. Do you have a sick day preparedness kit? If nothing else, have a list to give someone to pick up items at a pharmacy or grocery store if you don’t keep this stuff handy (but you should!). My list includes:

  • Sugar-free cough drops/throat soothers (I love Ricola.)
  • Sugar-free cough/cold medicine (ask for recommendations from your medical team)
  • Pedialyte – I know. Why Pedialyte? It’s got sugar in it. Yep. And electrolytes. If I’m puking, I’ll need both to absorb quickly. You can also get Pedialyte pops. If you have ketones, your body still needs carbs ingested to help clear out the ketones. I’ll talk ketones later this month. It’s fascinating.
  • Fever medication/Pain reliever
  • Tissues for your tender nose! (You can never have enough and when you run out? Ow!)
  • Prescription anti-emetics (If you can hold it down long enough to absorb it, you’ll thank yourself later. There are dissolving tablets of Zofran available. I adore these.)
  • Popsicles (sugar-free and regular)
  • Broth/clear soup/tea/soda
  • Bananas, toast, crackers and pudding
  • Glucagon, in case things go south fast (And while it may not happen, the whole point is to be prepared.)

You must check glucose levels and ketone levels more frequently. You must stay hydrated. You must keep carbohydrates in your system. And if you don’t normally write all the tests and dosages down (::raising my hand::), then start in case you need to call your medical team.

Calling Your Medical Team When You’re Sick with Diabetes

There are times when you must call your medical team. Fever doesn’t go down? Food doesn’t stay down? Blood sugars won’t stay down? Ketones refuse to come down? It’s a downer, but making a call can save your life. The medical team may give you extra advice or advise you to go to the ER. You may need reassurance and it’s perfectly OK to ask for that help.

The best thing that you can do for yourself is to have your sick day rules ready before you need to use them. At your next appointment with your medical team, get it in writing. Then share it with a friend or family member in case you’re too sick to get out of bed. 

You’ll save yourself a lot of hassle. It may not do anything to shorten the duration of the cold or fever or puke-a-palooza, but at least you’ll have your diabetes covered.

Fortunately, this cold is mild. I’ve raised my basal a little bit and no ketones, so I’m holding steady. I know that this won’t be the last time I fall prey to whatever bug is out there, but I’m going to play by the rules, even when my body doesn’t.

Remember: I am not a medical professional. Do not think that what I’m giving you is medical advice for even a second. I do not play a doctor on TV or on the Internet.