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.
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.
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!
Vegetables and I have not been fast friends over the years. I enjoy their company when they’re accompanied with cheese or if they’re prepared so exotically that they coax me into trying them. If they’re in season, at their peak of popularity, I’ll throw a few vegetables in the shopping cart. But we’re not best buds.
It’s not because of diabetes, but there is a correlation. After my diagnosis, I became well acquainted with the Diabetes Exchange Diet. If you’ve ever had the pleasure of hearing: “You can have 1 milk, 2 breads, 1 meat, and 1 fat for breakfast,” you’ll know where this is leading…
Some vegetables AREN’T vegetables.
Peas, according to school lunch, are vegetables, but not to the Diabetes Exchange Diet. Same went for corn and potatoes. Vegetables I liked as a kid. Vegetables that I ate. Now, I had to choose between a piece of bread and a 1/2 cup of corn or peas? Bread won every time. I loved V-8 juice, so my vegetable portion was often chugged on the way out the door… if at all.
Lettuce is also not a vegetable. It’s a “free food” along with cucumbers and celery. (But one tablespoon of dressing is considered one fat. Do you know how little and sad that tablespoon of ranch dressing looked?) I wanted food that had ballast. Not rabbit food. I was starving. Always starving. (Remember that my diabetes management wasn’t management at all; it was chaos.)
It didn’t take long for me to turn my back on vegetables. Even after I stopped denying myself insulin and got my head together (or as together as it’s going to get), I just never thought to myself: “Hmmm… a bunch of veggies would hit the spot right about now.”
But I’m older now. Wiser. I’m trying to cook more (and in doing so, blew up my stove, but I don’t think it was my cooking…) and from scratch. We’ve had hits and misses, but I wanted to switch it up a bit.
Enter The Thug
Across my Facebook feed one day came this video…
(Warning - while hysterically funny, it’s also not appropriate to play at a loud volume at work, around small children, or easily offended by the use of any swear worse than “gee willikers!”)
My fingers practically tripped over themselves rushing to order Thug Kitchen so I could, as they put it, eat some goddamned vegetables.
This cookbook has no meat, no eggs, and no dairy in any of the recipes. I’m cool with that, but some people might not be. What is in abundance is profanity, so if you’re not cool with that, this cookbook might not be for you.
In the few weeks that Thug Kitchen has been in my possession, I’ve made some small changes to what I eat that have made an impact on my daily diabetes management: one involves vegetables and the other doesn’t.
It was almost like a vegetarian Dr. Seuss Green Eggs and Ham question : “Would you try a green smoothie?” Neither of us seemed thrilled, but neither of us would admit it. We followed the recipe (which involved spinach, lots and lots of spinach) and lo and behold, much like Sam I Am’s friend… we loved it. And most importantly, it didn’t spike my blood sugars like I thought it would, even with the addition of fruit. I think that all my previous smoothie attempts in the past failed because I used regular milk and yogurt. This recipe? Filling and no spiking.
I broke our old blender because I’ve been making so many smoothies. (Wait… I blew up the stove, broke the blender…is the universe trying to tell me something?) We got a hefty, hearty, Sons of Anarchy strong blender replacement. Breakfast or lunch, I’m getting veggies in a swirly concoction.
I have long been a “get a coffee in me before I can function” individual and that’s usually the extent of my breakfast. (Yes, I know. Bad.) But I know exactly how much to bolus for how I like my coffee and no spike. Everything else is a toss-up until now.
Hooked now on the oatmeal recipe in Thug Kitchen and no.freaking.spike. Yeah, it takes a little while to make, but I do a huge batch and shove it in the fridge for later in the week. I get a warm belly, a slow-digesting breakfast, and I feel better. (No veggies in the oatmeal, just to be clear.)
Slowly Thugging Diabetes
I’m not shilling the cookbook. I’m talking about how I’m slowly thugging my diabetes.
Making small changes to my diabetes management over the last few months has been eye-opening. Different ways to bolus, to eat, to include yoga and some very mindful mediation, down to adding a medication that I never thought I would. And the result?
The lowest A1C I’ve had in years and not a single severe hypoglycemic episode in the last few months.
We aren’t meant to act like a major organ 24/7/365. (Well, some people can act like a big glutenous muscle…) We weren’t meant to calculate and regulate and feel guilty if we don’t get it right.
I’m thugging my diabetes, small change by small change. All of us can thug diabetes, whether it’s making a conscious decision to eat more veggies or walk a little further (or start to walk!) or try something different. What works for me may not work for you, but what works for you might work for someone else.
How are you thugging your diabetes? What do you want to try? I’d love to hear from you!
Does this illustration scare you?
I first encountered this slide during an academic lecture given by Dr. Mikhail Kosiborod, MD when I attended the International Hospital Diabetes Meeting in May. He was sharing data about cardiovascular events and outcomes. (If you’re not an academic, the smart people begin to sound like Charlie Brown’s teachers after a while.) But when this illustration came onto the screen, I frantically scribbled the study’s authors down.
This slide was the first time I saw so plainly what was happening to me when I had a moderate hypoglycemic episode. (Dr. Kosiborod said that a “moderate” hypo was 57 mg/dl or less.) Not just the “I feel like I’m dizzy and not all here and let’s concentrate on something insignificant and is it hot in here?” reaction. This was what was going on inside without me feeling most of it.
Complications are not always from high blood glucose levels
We all know the long-term implications of high blood sugars. It’s that same old “-Opathy” chant that everyone sings loudly: “Retinopathy-neuropathy-nephropathy” with the back-up singers humming: “Don’t forget about stroke and amputation and arteriosclerosis and…big finish, everyone! Gum disease!”
But with lows, it’s a quick ditty: “Unconciousness, seizure, death.” It’s not a chart-topper, but it can be #1 with a bullet if you’re hypoglycemic. When I had those times of “Whoa…let’s stand in the kitchen and daze off into space,” it didn’t feel like I was doing any damage to my body. Sure, I felt like my head had been run over by Gravedigger and I was treading in molasses for several hours after some lows, but I recovered. Or so I thought. Now?
I am setting myself up for long-term complications with repeated moderate low blood sugars. So are you.
Here’s what happens (you can follow along with the slide, but I’ll break it down in terms we all understand):
Every moderate hypoglycemic reaction sends out wonderful proteins to increase inflammation in our body. (I’ll cut to the chase. We don’t want that.) They are:
Vascular endothelial growth factor (VEGF ), is a signal protein that helps to promote the growth of new blood vessels. We need VEGF as we grow in a womb (to create the blood vessels), after exercise or injury, and VEGF can help create new blood vessels when there is an obstruction. But, much like really good food, it’s only good in moderation. Too much of it (“overexpression”) can contribute to asthma, retinal problems, and cancers. The levels go up when we have a moderate hypoglycemic episode.
C-reactive protein (CRP) is a protein released in response to inflammation. Some of our organs, like colons, show a greater risk of cancer when they’re chronically inflamed. This lovely protein also raises our risk for heart disease, high blood pressure, and coronary artery disease.
Interleukin 6 (IL-6) is an interleukin (No, I’m not a medical professional or a biology whiz, so I had to look it up. Fancy word for protein) that does double duty: it promotes inflammation and can help with healing in certain situations. In this case, when we have a low, it’s under the inflammation category. And it gets busy.
“IL-6 stimulates the inflammatory and auto-immune processes in many diseases such as diabetes,atherosclerosis,depression,Alzheimer’s Disease,systemic lupus erythematosus,multiple myeloma,prostate cancer,Behçet’s disease, and rheumatoid arthritis.” - Wikipedia
Vasoconstriction, the narrowing of blood vessels, is not something you want unless you need to stop a massive bleed. But, when you don’t need to stop a hemorrhage, it’s not often something super to have going on. Vasoconstriction raises blood pressure (which is why vasoconstrictor medications are given to people with low blood pressure) and can cause erectile dysfunction. You know what else causes vasoconstriction? Caffeine. Sigh.
Time for a breather. Here’s a picture of a bunny, because this stuff is pretty heavy. Warning, after the bunny, there are no more cute things.
Abnormal Blood Coagulation
If it’s a medical term and it starts with “abnormal”: uh-oh.
Factor VII is another protein in our body that helps the clotting process. Too little Factor VII = hemophilia. Too much Factor VII = clotting when there shouldn’t be. Moderate hypoglycemic episodes increase this protein in the body.
Neutrophils are white blood cells. When inflammation starts, neutrophils head towards the area of inflammation. Because our body is doing the inflammation dance when we’re having a moderate low, neutrophils show up for the party, too.
Platelet Activation - platelets help to staunch bleeding by clumping and clogging a blood vessel. Great for stopping bleeding, of course, but lousy when the result is thrombosis. We increase platelet activation when we’re low.
We release adrenaline, epinephrine and norepinephrine as our blood sugar sinks into the basement. It’s that “fight or flight” feeling; that “out-of-control and my heart is racing” feeling. It’s our body’s adrenal response to get us to do something.
When we have multiple hypos, we can developed a suppressed sympathoadrenal response - and that’s hypoglycemic unawareness. Clinicians talk about raising a target blood glucose level because a person with diabetes has hypo unawareness to retrain the body to have that adrenal response again.
But your nervous system also factors into play here. Your autonomic nervous system. Your heart is part of this system. A moderate hypo causes your heart to beat faster (“Thud-thud-thud”) and can cause long-term issues with the timing of your heart (arrhythmia). We’re making our hearts work harder.
It’s Not Over When You Think It’s Over
Your blood glucose level comes up and the hypo is over. But what happened to your body is not over. Not by a longshot. This is what I learned at the symposia at ADA’s 75th Scientific Sessions on Hypoglycemia.
And it’s this:
Vascular issues can last up to two days and blood coagulation issues for up to a week.
Every moderate hypoglycemic episode builds up inflammation and coagulation responses in my body. One sucky hypo a week was not uncommon for me, even with a Dexcom.
What Am I Doing Now?
I’m doing everything to prevent a moderate or severe low blood sugar. The research I did shows me that I can change the way I react to my lows and help prevent these “issues” from happening.
My CGM is constantly on my body and I’ve set it to alarm at 80mg/dl so that I’m still in my right mind to look at it and take action if I need to do so. Has this helped?
Instead of alarming at 70, when I often tell myself that I’m invincible and that my blood sugar will go back up on its own (I’ve said this to myself a lot…Yes, I know. False.), I’m catching that low. It also has prevented the response of eating everything in the kitchen because I’m in “fight or flight” (or “stuff your face or pass out”) mode. My stress level is lower and I feel more in control.
And that is what this post is about… giving you the info and giving you the opportunity to help yourself, because while you can’t control having diabetes, you can control how you manage it. And hypos are not so innocent.
Desperately Seeking Diabetes Nanny.
Wonderful opportunity for the right individual.
Duties include, but are not limited to:
- Cajoling me to check my blood sugars, even though I wear a CGM and am sometimes lulled into a sense of false security
- Showing me that sometimes, a CGM can be wrong but that it’s OK
- Forcing me to sit and calculate how many carbohydrates will going into my mouth, factoring in the fat and protein content with that wild card of how much insulin I currently have on board and how much exercise I might be doing in the near future (or how much I did in the distant past) and if it’s that time of the month or if I’m not feeling well or… at least telling me that it’s OK that the amount of insulin I take is based on too many factors to nail it every time
- Waking me up when that alarm goes off, signifying a low blood glucose level in the middle of the night, because I might be sleeping peacefully and soundly (Because who needs an uninterrupted night’s sleep? Not this woman.) and stuffing me with glucose when I tell you that I’m perfectly fine
But wait… there’s more!
- Ensuring that I have, in my possession, before I leave the house: my meter, my strips, emergency glucose that doesn’t taste yucky (Glucolift, FTW), back-up insulin to inject if my pump fails, an extra pump cartridge, an extra infusion set, a snack in case I get caught somewhere and can’t get something to eat
- Willing to navigate the labyrinth called the U.S. Healthcare system with its endless medical necessity letters and insurance claims that get kicked back and the multiple phone calls required to get a straight answer about what is covered and what isn’t covered
- Patting my hand (or covering my mouth) when someone makes an ignorant comment about diabetes and I have to give the elevator speech about what diabetes is and isn’t, how we get it and how we don’t, and that sugar isn’t our enemy (our pancreases are)
- Pushing me to stand up and take a stand when I see injustice in the world: lack of access to the drugs, devices, and services that can keep people with diabetes healthy - and alive
Let’s not forget this part of the job!
- Holding me tightly when I am drenched in sweat, shaking, and unable to wait that proposed 15 minutes before ingesting another 15 or 30 grams of carbohydrates after a gut-wrenching low blood sugar - or when I am lethargic, thirsty, and bitchy after a high blood sugar that came out of nowhere
- Reminding me that complications can happen to everyone with diabetes, no matter how tightly or loosely controlled their management has been and that it doesn’t make me - or anyone else with diabetes - a “bad” person
- Lifting my head to look to the horizon for small, but important, advances in diabetes research to inspire me to keep going
- Consoling me when I learn of a life lost to diabetes
- Understanding that I will never be cured, even if a “cure” is found tomorrow, as the damage done to my body will stay long after diabetes is gone
- Keeping me sane when diabetes slows me down
Important aspects of being a diabetes nanny you should know about:
This is a 24/7/365 position.
There are no vacation days, sick leave, retirement plan.
You’ll get on-the-job training, as the manuals don’t seem to cover the day-to-day living with diabetes.
This job has been held by parents, friends, coworkers, spouses, and sometimes, strangers, but they can’t really explain what they did or how they did it. You’ve got to experience it for yourself.
You may not be angry at me (or the world) for having diabetes, although you can be angry with me.
Did I mention that this is an unpaid position and no opportunity to advance?
Whiners and martyrs need not apply.
Applications being accepted now.
I have the honor and the privilege of speaking on a panel at the Drug Information Association today about patient centricity in clinical trials.
What? What does that have to do with diabetes?
Did you know that less than 1% of the global population participates in clinical trials, but that clinical trials are what provides us with new drugs and treatments? Without them, we wouldn’t have new drugs and devices?
Clinical trials often have issues recruiting patients and getting patients to stay in studies through to completion. Reasons for recruitment and drop out rates can include: issues with traveling to a clinical trial site, exclusions due to age or lab results, and the complexity of the trial (including invasive procedures). What if these issues were minimized because the clinical trial was patient-centric?
What is patient-centric?
We’ve heard the term “patient-friendly” bandied about when discussing organizations that speak on a level that patients can understand. These are the companies who share disease education in an easily digestible way (infographics overload sometimes!) and provide ways to contact the company if further information is needed. When you apply the term “patient-friendly” in clinical trials, it means, in my opinion, the clinical trial personnel can talk to the patient without sounding too… well… clinical. And here’s the difference between “patient-friendly” and “patient-centric” - Patient-centricity means listening to the patient, talking with the patient, and sharing with the patient at every point in the clinical trial timeline.
Patients Aren’t Stupid
We’re not. We understand that without new drugs and devices, our care is the same as it ever was. However, many of us don’t know what’s involved with a clinical trial and the role that we play in helping to get new drugs and devices to market. If we slog through clinicaltrials.gov and read the gobbledygook that is all clinical and zero layman, we’re still left to reach out on our own to get more information and see if we qualify. Most people don’t bother to go that far. And the opportunity to help, to get access to investigational drugs and treatments from the get go, to be a part of the future of healthcare is wasted.
What Needs To Happen
A successful clinical trial, much like everything else, needs clear, understandable, two-way communication between patients and the key people running the trial at every stage. It’s no longer acceptable to bring a token patient to help recruit for a trial. That’s not “patient-centric.” Patients actively participating in developing trial protocols, patients sharing thoughts and potential issues surrounding adherence to a trial - or what might prevent people from participating - and having those who run the trial listen and make changes based on the feedback given - that is “patient-centric.” Understanding the patient (and we aren’t just one patient - all of us are unique, so having “one patient speak for all” isn’t good enough) and incorporating that understanding goes a long way.
Patients want to help. Patients want to be at every table that may help their health or the health of a loved one. Patients need to know if trials are available that they can easily participate in and have an understanding of what is needed and wanted from them - and why they should participate. Communication is key.
Have you thought about participating in a clinical trial?
Take your time to look through the available clinical trials available worldwide. (There are many available for Type 1 and Type 2 diabetes.) Some involve taking investigational drugs. Others involve using a device. All will have a list of “thank you for your interest, but you don’t fit what we’re looking for…” criteria, but take the first step. Be the patient and step into this world. Get involved and while the study may not help you, it may help someone else.
For me, I want to be at the table from the very beginning to the very end. Why? Because at the end of a trial, I’m the patient… hopefully being able to use the new drug or device that I helped bring to life. I want to be patient-centric to other patients.
BBK Worldwide and the Michael J. Fox Foundation will be sharing their thoughts this afternoon on stage alongside me. Grateful for the opportunity. Grateful to speak from the patient perspective.
Grateful to those who participated in clinical trials so that I can wear an insulin pump and a CGM. I’m just trying to pay it forward.
Disclosure: BBK Worldwide paid for my travel and lodging to speak at DIA 2015. My thoughts and words are my own. Always. Like you could shut me up.