The prospect of diabetes complications can be scary indeed. In this week’s edition of our weekly diabetes advice column Ask D’Mine, our columnist Wil Dubois (himself a longtime type 1 who also works as a diabetes educator) offers some thoughts on killer neuropathy, following a troubling news report from overseas.

As our own Mike Hoskins read the news, he started worrying about what it could mean for his own life, so he’s reaching out to Wil himself today for some straight-up 411 on this topic.

Mike H, type 1 of DiabetesMine, writes:

Wil, I read an an article in a British newspaper recently, about a 41-year-old woman with type 1 who died one night while sleeping. She had been diagnosed a quarter-century ago, and was living with autonomic neuropathy. Her husband is quoted as saying she didn’t experience a heart attack or low blood sugar, which is what immediately came to my mind. Instead, a pathology report apparently confirmed that her autonomic neuropathy had “traveled to her chest and stopped her heart from beating in the night.”

WHAT?! I’ve been living with type 1 for many years now and am partially hypo unaware, so the thought of a severe hypo at night killing me is a big fear of mine. But I’ve never heard of this before! Yes, I’ve also lived with neuropathy in my feet and toes for about 10 years now... and I do realize there is more than one type of neuropathy. Still, should I be worried that this could happen to me??

Wil@Ask D’Mine replies: Advanced warning: This will be a downer of a column, filled with pain, despair, and death. We’re going to talk about an extreme complication of diabetes that’s rarely discussed, but may be frighteningly more common than any of us wants to accept.

First, can neuropathy stop a beating heart? Yes. I’m sorry to say that it can. But to understand the mechanics behind the grim reaper’s scythe, you need to know a little more about how the heart beats and about the two flavors of neuropathy.

Oh God, where to start? I guess with the blue candle, which of course is a symbol in our D-community of lost loved ones. My condolences to British soccer player Stephen Reeves, the man who lost his T1 wife Louise (pictured) -- and on their wedding anniversary no less! As we say in this part of the world: Siento mucho, which translates to “I am so very sorry.”

Now on to neuropathy. Mike mentioned living with it in his feet and toes. We tend to use “neuropathy” almost like slang, but in most cases its proper name is diabetic peripheral neuropathy (DPN) because it’s the result of damage to the peripheral nerves. It’s caused by the corrosive effects of elevated blood sugars over time, and the best guess is that between 60 and 70% of all D-folks have some degree of peripheral neuropathy. In some people it causes a loss of sensation, and in others is causes phantom pain that ranges from hardly noticeable, to mildly annoying, to absolutely horrific.

DPN impacts us by hitting at how the brain communicates with our bodies through the so-called voluntary movements we make. If I reach out to take a drink of my cup of coffee, I’ve just used my voluntary nerves. I chose to make a movement and my brain sends messages, via assorted nerves, to the muscles in my arm, hand, and fingers to pick up the cup and move it to my mouth. It doesn’t take any particular degree of concentration to do this, but it does require conscious choice. It’s this voluntary system that’s damaged by peripheral neuropathy.

But that's not the only type of neuropathy, and the other type impacts all the things my brain controls in my body that I don't necessarily think about -- my lungs breathing, my stomach digesting, my sweat glads regulating temperature, and yes, my heart beating. That's run by what's called the autonomicnervous system, and that's what is impacted by Diabetic Autonomic Neuropathy -- or DAN as many in the medical profession call it.

DAN most commonly shows up as urinary or digestive issues, the inability to maintain body temperature, eye trouble, exercise intolerance, and crazy drops in blood pressure causing fainting spells. Oh yes, and “resting tachycardia,” when the heart rate explodes while doing nothing.

There’s more, too. Experts now speculate that “brittle” diabetes is caused by DAN, and even hypo unawareness may also be caused by DAN. Oh, grrrreat…

Hi, Dan, nice to meet you, you son of a bitch.

Can this get any worse?

Yes. A subset of DAN is known as CAN, or Cardiovascular Autonomic Neuropathy. This appears to be what got our D-sister in England. The nerves that ran her heart were damaged by her diabetes, ultimately leading to her heart simply not getting the message to keep beating. So it stopped.

Apparently, CAN is linked to a myriad of types of heart failure, with charmingly technical names like cardiac arrest, cardiac dysrhythmia, sudden cardiac death, painless silent ischemia, and the plain and simple “unexpected death.” Top cardiology experts are duking it out as to whether autonomic neuropathy is “causative” or merely a “contributing factor” but I’m not sure that really matters to us if it’s the bullet or the gun.

How common is this heart-stopper? That’s hard to say, and it depends on what group of PWDs you’re looking at, and what degree of automatic neuropathy you are testing for. In the best-case scenario, some established diabetes researchers think it affects only 2.5% of us. On the other hand, 90% of long-term type 1s on transplant lists have it. One large-scale study using heart-rate variability testing put the incidence at 25.3% of us T1s and 34.3% of our T2 cousins.

How serious is it? Well, don’t shoot the messenger, but if you have DAN, your risk of death is double that of D-folks who don’t have it. If you have CAN, your death risk is five times greater.

The onset of autonomic neuropathy and its deadlier subset are usually described as “slow and insidious,” and typically show up in the sixth decade of life. But not always, as another blue candle case study shows of one of our sisters who was only 26 years old when she succumbed to this complication.

So what is anyone doing about this? Well, interestingly, the American Diabetes Association recommends screening for DAN on diagnosis and annually thereafter for type 2s. For T1s, it suggests screening annually once you are five years post-diagnosis. These are the same intervals as for dilated eye exams, and for the same reason. Nerve damage takes some time to happen. With type 2s, the sugars have usually been elevated for a number of years prior to diagnosis, whereas type 1 comes on like a hurricane and at diagnosis the sugar hasn’t been out of whack long enough to have caused nerve damage.

Five years of diabetes is all it takes to cause damage.

Can it be treated? Not so much. It’s one of those treat-by-prevention kinds of complications, and the main thing is to do is to do your damnedest to control your blood sugar. That will help you avoid it, or keep it from getting worse if you already have it.

So what’s the take-away message from this depressing sermon? Should you be worried about this, Mike? Nah. I don’t think so.

First off, you could be the healthiest man in the world and a piece of Soviet-era space junk could fall out of the sky and squish you flat. Death comes to us all at some point. I think we should all do the best we can to keep as healthy as we can, but beyond that I think that worrying about the details is wasted energy.

To me, nothing changes with the new attention on autonomic neuropathy. As a person with diabetes I’ve known all along -- as should you -- that "heart stuff” will have a starring role on my death certificate. That’s the nature of diabetes. Now maybe there will be a new label for the same scythe of the grim reaper. Call it whatever type of heat failure you will, caused by neuropathy or something else, but in the end, does it really matter which?

Disclaimer: As mentioned way up above, this is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.

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