Hypoglycemia + Heart = Things You Need To Know ASAP

 

Does this illustration scare you?

It should.

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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):

Inflammation

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,[22]atherosclerosis,[23]depression,[24]Alzheimer’s Disease,[25]systemic lupus erythematosus,[26]multiple myeloma,[27]prostate cancer,[28]Behçet’s disease,[29] and rheumatoid arthritis.[30]” – Wikipedia

Endothelial Dysfunction

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. 

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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.

Sympathoadrenal Response

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?

Yes. 

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.

 

Black Boots, A Whip, and A Tophat: Diabetes Circus

1395333_65756224-2Welcome to my diabetes circus.

I’ll be your master of ceremonies. My top hat, black and shiny and oh so worn, beckons you with a twitch of my wrist to come closer. The show, I promise you, is mesmerizing.

You’ll find plenty of interesting games for you to play on the midway before you enter. Guess The Blood Sugar is one of my most popular, followed closely behind by Why Did Your Blood Sugar Do That When You Did Nothing Different? The booth, Five Years To A Cure, is pretty old, but there are those who still try to win the prize.

Take your seats.

Watch your step as the lights dim and strobes flash. Diabetes likes to make an amazing entrance.

I wield the whip on my hip to keep the nasty blood sugars at bay, watching the arc of my CGM as I crack them into submission.

Like my shiny black boots? They’re my boots of truth. I use them to stomp on those pesky little fallacies about this disease. (They make little sighs and oofs as I grind them into the dirt.) But they know it’s a show, so they come back the next day, sometimes towing new friends.

The clowns in the corner are unpredictable. Sometimes, their antics are hysterical, bringing down the house with laughter and giggles as my blood sugars creep lower. They’ll want you to believe that everything is just hunky-dory. Don’t believe them. Those clowns will turn on you in a hot minute, smearing their greasepaint as they sob uncontrollably and unexpectedly. I don’t pay them anything, but they keep showing up. Can’t get good help these days.

1262184_84252893The jugglers and acrobats show you just how difficult keeping all the things we think about in the air.

My magician act is stupendous, if not a little unoriginal. From thin air, I pull carbohydrate counts and multiple mitigating factors, weaving them into my day while walking on that thin wire above our heads.

The music you hear? Relentless drumming that ebbs and flows in volume, depending on how precarious the act becomes. And you must know… sometimes the show is more dangerous than I let on.

The monkeys chatter from the top of the trapeze artist’s perch, chiding me about past mistakes and future fears, while the dogs on bicycles wearing party hats circle below, distracting me from my goals.

The sweet, wise elephants never let me forget that the show must always go on. 

And it does.

Every day, even when I want to drag the big top to the group, ripping up poles and stakes. There is no rolling into the next town.

I am forever here, in the center of the ring, waiting.

 

 

 

Help Wanted: Diabetes Nanny

Desperately Seeking Diabetes Nanny.

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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. 

Patient Centricity at #DIA2015

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?

Everything.

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. 

Diabetes Connections with Stacey Simms Featuring… Me?

DC_FinalLogo_GrayBkgrnd_Podcast-300x300I’m honored to be Stacey’s first guest on her new podcast, Diabetes Connections. We talk about diabeticFeed (RIP), the connections we make in the diabetes community, the idea of “me, too” and The Diabetes UnConference.

As I listen to it, I remembered that I got a little choked up at one point when I talked about how I felt like a failure…

Take a listen to Stacey (who is amazing) and bookmark her site. She told me that I was her guinea pig… she was speaking to the JDRF CEO next. (That took a lot of pressure off!) I’m glad I helped her get the kinks out and that I got to talk about what is important to me…

Here’s the link…

I’m off to the American Diabetes Association’s Scientific Sessions in Boston. So many research announcements are expected to be made… and I’ll be sharing what I think are the highlights. And I’ll be making connections… like I talked about with Stacey.

Have a wonderful rest of the week. Enjoy the podcast!