Meters matter

At a recent state-wide meeting on medical research in clinic settings I overheard a doctor, who ideally should be taken out back and shot (but at a minimum shouldn’t be allowed to see diabetic patients), say that she didn’t think Type-2 on orals should test their blood sugar at all.

She didn’t see any purpose.

She didn’t think it did any good, as a Type-2 on pills can’t do anything about their blood sugar anyway.

I’m sooooooooo sick and tired of hearing bullshit like this.

Meters matter. For all of us. For Type-1s and Type-2s. For insulin users and pill poppers.

And I’m going to tell you why, Letterman style, with the top ten reasons meters matter for Type-2s well controlled on pills. I’m focusing on this group because there are waaaaay to many people who think T-2s on pills don’t need to test, including some of the patients themselves.

Many of the reasons why meters matter have more to do with our brains than our blood, but this shouldn’t belittle them as valid reasons. To control diabetes successfully requires some brain power, to say the least, and we have a boat load of evidence showing how life can “get in the way” of good diabetes control. If we accept that psychological issues can impact a patient’s ability to keep his diabetes under good control; why are we denying that psychological tools can help her keep her blood sugar under good control? Any tool that can aid us in any way is valid and important.

Meters matter reason number ten: Don’t wait for it to rain to buy an umbrella. Type-2 Diabetes is both chronic and progressive. It never goes away and it always gets worse. Insulin resistance, the corner stone of T-2, increases every day that passes, every minute that passes, every second that passes. In some folks it comes on like a tsunami, in others it resembles the slowly rising sea levels of global warming. The increasing insulin resistance taxes the pancreas. It’ll work overtime to keep up. It’ll put on swing and night shifts. But eventually, the levy is topped. And on top of that fact, our bodies adapt to our medications. My message here is actually several fold. First, get into good habits now, before you need too. Keep in good habits, before you need too. This also sets the stage for...

Meters matter reason number nine: Meters are the night watchman on the tower; looking for the barbarians on the horizon. If you test now, when all is quiet and wonderful, you’ll get the earliest possible warning of change. And one thing we can count on with diabetes is change. Forewarned is forearmed. And speaking of the troops…

Meters matter reason number eight: If you won’t do it for yourself, do it for me. Do it for your Diabetes Educator and your Doctor. Testing is not only good for you in both the short and long runs, it’s good for us in the medical world. Everyone’s diabetes varies. Truly, it has 31 flavors. Meters reveal the personality of your very own personal diabetes to us. Testing lets us put your diabetes on the couch and psychoanalyze it. Is your diabetes the kind that dumps sugar into your blood stream at night? Is your diabetes the kind that can’t handle the carbs in your meals, leaving you high for hours after eating? Is your diabetes one of those that just runs on the high side all the time? The differences drive the therapy. Oh, and speaking of eating…

Meters matter reason number seven: Meters let you know what your diabetes likes to eat. And what it doesn’t like to eat. OK, so there isn’t a “diabetes diet.” Not anymore. We’ve kicked that to the curb ‘cause it didn’t work out so well. But no matter what flavor of diabetes you have, no matter how well or how poorly controlled it is, I guarantee this: there are foods that will give you trouble and foods that won’t. Does that mean you can’t have the ones that give you trouble? Of course not. This is a disease, not a religion. But you may have to look at how much of the problematic foods you eat, what else you eat with them, and when you eat them. The meter is the perfect tool for a very small-scale scientific study, that I like to call a One Rat Study. Yes, you are the rat in your One Rat Study. We know that carbs turn to glucose in your gut. That’s the job of the digestion system. Some carbs turn to sugar faster than others. The marathon sprinters tend to be stuff made with flour, stuff made with potatoes, and stuff made with rice. Oddly, most D-folk seem to be able to tolerate two of the three just fine, but I’ve never been able to establish a pattern as to which one will effect who. Sadly, I’m one of those who has trouble with stuff made with flour, so I have trouble with bread, crackers, cake, tortillas, and (most devastatingly for me) pasta. Anyway, I digress. If you test before you take your first bite, and two hours after that first bite, you can see how various foods effect your blood sugar. You must “test in pairs” as William Polonsky has so elegantly termed it. What you need to look at is not whether the after meal number is at a specific goal, but how much the rise is. Food your diabetes and diabetes medications like is a rise of less than 50 points. And if the rise is waaaaaaay more than that…

Meters matter reason number six: Meters are Myth Busters. Many T-2s on orals (including my esposa in the past) buy into the myth that there is nothing that they can do about high blood sugar anyway, so why depress yourself by testing? Well… Well, for starters, in the future you could avoid doing whatever it was that got you in to this mess in the first place. And there are some things you can do if your sugar is high and you are on orals. You can drink water, walk briskly, and avoid eating high carb foods until you are back down where you belong. And speaking of denial…

Meters matter reason number five: Meters remind you that you are diabetic. OK, I’ll be first to admit that on the surface this sounds craaaaaaazy. But it is true and important. I know several otherwise very smart people who were diagnosed with diabetes, put on pills, and thought the problem was solved. And why wouldn’t you think that? Your blood pressure is fixed with your hypertensive med, your cholesterol is fixed with your statin. Your thyroid is fixed by your thyroid pill. Your blues are fixed with your anti-depressant. Most of our illness require no more than taking the right pill and seeing your doctor again in six months. Not true with diabetes. You are an important part of the picture. You are in the drivers’ seat. This illness takes some work, and I think meters serve as important daily reminders that we need to stay on the ball. Which is really the next reason meters matter…

Meters matter reason number four: Meters remind you of your responsibility in your self-management. They help you keep your head in the game, even when you are waaaaaay ahead of the opposing team. Just this week I had a guy in my office who told me that he realized that when he didn’t test he started to eat more sloppily; but that he realized that when he did test it kept his eye on the ball. So in many ways, meters are the best medicine. And you must take your medicine because…

Meters matter reason number three: Because nothing is more dangerous that deciding you are not diabetic any more. You’d be surprised how often this happens. And it never ends well. At some point folks who are detached from their diabetes often decide that they don’t have it anymore or maybe never had it in the first place. Not only are they not testing, but they stop taking their pills. The meter, and testing, keeps you in touch with your diabetes. It reminds you who and what you are, and what that requires of you to keep yourself healthy for your loved ones. Don’t get depressed. But speaking of depression…

Meters matter reason number two: Meters are the best anti-depressant. Yeah, I know, some folks get depressed by having to “poke their finger,” but this is diabetes. No wimps allowed! Meters are a powerful reminder that you are in control, and that is heady stuff. It is your diabetes and you own it. In many places, especially in minority communities where it seems everyone has had diabetes for generations upon generations, a certain degree of fatalism takes over. Bad outcomes are accepted as destiny. Bull-fucking-shit. Yes, diabetes has wrapped it’s slimy little tentacles around your family’s DNA. Yes, Grandpa had it, Dad had it, Uncle had it. Yes, Grandma had it, Mom had it, Auntie had it. Your sibs have it. Yes you have it and probably so will your children. And so what? Just because everyone had diabetes doesn’t mean everyone needs to die from it. Look, diabetes treatment has come a long way. You don’t have the same diabetes your parents and grandparents had. You have New and Improved Diabetes. Yep, same killing action as the old product, but now more controllable than ever. Used right, used often, the meter should not depress you. You should rejoice in the power it grants you to change your family’s destiny. In some areas of the county, having a first generation go to college is cause for great celebration. I think we are on the verge of a new celebration. The first generation of some families dying at very old age with eyes, kidneys, and toes all original equipment in the coffin.

And the number one reason that meters matter: The fucking A1C test lies. So I need to lay the back ground here. The A1C test has for years been the gold standard the Docs use to determine diabetes control, or lack thereof. Actually, the A1C test is not a particularly good tool to do this, as you will soon see, but it was all we had. So what exactly is an A1C test, you ask? OK, here we go. Red blood cells are the FedEx trucks of your body, delivering little packages of oxygen from the lungs to every cell in the body. The freeway system the little trucks drive on is your circulatory system. But of course, they aren’t the only vehicles on the road. Sugar is on the road too. Let us pretend it is a very cold snowy day. The sugar is snow on the highway. The FedEx trucks need to make their deliveries, snow or not. But driving in all that snow, the trucks get splattered with ice and mud and muck. So too with the red blood cells. If there is a lot of sugar in the blood stream, the red blood cells get all splattered with it. The worse the snow, the dirtier the trucks get. The A1C test is simply a way of seeing how dirty the fleet of trucks is, on average. The score, ranging from 4.0 to 14.0+ is simply revealing the percentage of the red blood cell’s skin that is coated in sugar. As red blood cells live about three months, an A1C score reveals the overall sugar environment in the blood stream for the last three months. Opinions vary, but generally speaking, somewhere in the sixes is considered in good control. For perspective, an A1C of 6.5 would tell us that the average blood sugar for the past three months is 140 mg/dL.

But giving us an average is the first way the A1C test lies to us. You can get an average of 140 by adding 65, 140, and 215 and dividing by three. I think most of us would agree that if your blood sugar was rollercoastering between 65 mg/dL and 215 mg/dL that you are most certainly NOT in good control of your diabetes. But if you only looked at your diabetes through the lens of the A1C test, you might make the fatal mistake of assuming that you are in control. That is critical because for years we thought that it was simply high average blood sugars that cause microvascular damage (your eyes, kidneys, penis, and toes), but now we are learning that excursions, rapid changes in blood sugar levels, may play as large a role in kindling these diabetes complications as does the average sugar.

And the A1C cannot and does not reveal excursions. It is a blunt sword. It only gives us averages. So beyond the insidious nature of mathematics, the A1C tests are also subject to false readings from anemia, hemoglobinopathies, and plain old-fashioned human error. But proper and creative use of a meter, on the other hand, can reveal what the A1C test is blind to. Don’t get me wrong. The A1C test has an important role to fill, and I think the test and the meter together provide an excellent set of checks and balances against each other’s weaknesses.

Oh yeah, but one more thing for those physicians who want to rely on controlling diabetics with A1Cs alone. As the test covers a three month period, the standard is that every diabetic should be tested quarterly. But that does not happen. Many diabetics are tested twice a year, and a shocking number only get a test once per year.

Care to wager how much damage high sugar levels could do in a year?

Meters matter.

Period.

End of subject.

Now go test your blood sugar, all of you.

Looking for two good writers…

Any readers out there members of the National Association of Science Writers (NASW)? Or married to members? Or children or parents of members? I was looking to join this organization, but need to be sponsored by two existing members and seem to be up a creek without a quill pen, as it were.

Me ‘n Rufus

So recently a young lady from the JDRF visited me at my clinic. She had come to see what we might need to help our patients. Among other things, for those of you who feel this organization has ignored adult T-1s (both the little ones that have grown up and those of us diagnosed as adults) she left a few copies of a book titled the “JDRF Adult Type 1 Toolkit.”

Now, I confess, I’ve not made time to read it yet, but it sounds very promising.

Of course, their main focus remains on the kiddos. My visitor asked how I was set for “bags of hope,” of which the signature element is Rufus, the bear with diabetes. I hope you all have a Rufus of your own. Rufus is a teddy bear of the classic design, but he sports a diabetic alert bracelet and has red patches on his paws to show where he should do a paw-prick to check his blood sugar. Other colored patches on his body indicate where he should take his shots.

For a brief history, Rufus was the brain-child, or brain-bear, of Carol Cramer. She created the first one in the early 90’s when her small son was dx’d. She actually made and donated over a thousand of them out of her own pocked.

Then she turned to the JDRF, who along with support from Pharma (originally Bayer), Medic Alert, and a toy company, ramped up production of over 15,000 Rufi and his sister girl-bear Ruby.

Rufi vary, depending on the generation, but generally sport a pair of tan corduroy overalls and a T-shirt. The current model has a JDRF/ Roche T-shirt. Presumably, someone at Roche has been filling out purchase orders for massive numbers of teddy bears.

Oddly, Rufus has been down-sized. Originally he was about a foot-and-a-half tall or so, now he is more of a pocket bear. I guess even bears are affected by the crappy economy.

But I digress.

From personal experience I can tell you that, for a child, having a stuffed animal who has to go through all of the diabetes crap with you is invaluable. But for that story we need to turn not to a bear, but to a lamb.

One day, several years ago, one of my elderly T-2 ladies brought me a stuffed lamb. I have no frickin idea why. At least, not at the time. The universe functions in the oddest of ways. Lamb sat on my bookshelf for months. Somewhere along the way Lamb ended up wearing a medic alert around her neck.

Then, in the summer of last year, a young mother brought in a very sick two year old girl. She had been losing weight. There were behavior problems. She had started wetting the bed. I think you all know where this is going…

So my new little patient latched on to lamb at her first visit, and on the next visit I thought lamb looked a little pale. So I checked Lamb’s blood sugar. And sure enough, Lamb was above target. So we gave her a shot. Then I checked my blood sugar. And, damn those brownies, I needed a shot too. So, what the hell, we’re checking everyone’s blood sugar, we might as well check the little T-1s blood sugar too, huh?

And that became the office ritual. We’d check Lamb, then me, then the little girl. When we were able to get my little patient a CGM, Lamb came in the week before sporting a cardboard CGM on her belt.

Sometimes it does not matter what boat we are in, so long as we aren’t in it alone.

I was amazed at how much support the stuffed animal gave the little girl.

So I definitely wanted a Rufus or two on hand. You know, just for in case. But, only half joking, I told the JDFR rep, well, no one gave me a Rufus when I was diagnosed.

“Oh, I’m so sorry,” she said, looking genuinely bummed, “how old were you?”

Mumble, mumble, four mumble, dec-mumble.

“I’m sorry? I didn’t catch that.”

Four… decades. I was 40 when I was diagnosed.

And she laughed.

But two weeks later a box showed up at the clinic with my name on it.

And inside was…




Yep. Almost a decade late, but better late than never, a Rufus of my own.

So I wasn’t sure whether to keep Rufus in my office to help me with patients, or whether he should live at home with Debbie, Rio, the cats, and me. I took him home to show him off, and well, he never left. He’s the perfect size to cuddle. Kinda like holding a baby. Only without the slobber and the hole-fear-of-dropping-on-head thing. And his fur is softer than a cat’s.

And you know what I discovered? At the end of a crappy day, you are never too old to hug a teddy bear.

Rufus. The bear with diabetes. Good medicine for diabetics of all ages.

The four dollar death sentence

Hospice is catch-all phase for end-of-life care, with a focus on easing suffering—physical, emotional, and spiritual. Hospice is actually covered by Medicare and most other insurance, the only requirement being the expectation that you’ll be dead in six months.

The official line is “clinical findings that support a patient’s life expectancy of six months or less if the terminal illness runs its normal course.” Of course, if you want to torture your insurance company by living longer (and eating into their profits) your doc can recertify you if you are still alive at the end of six months. That sometimes happens.

Recertifying more than once is rare.

My rules for diabetic patients on hospice are pretty simple: don’t check your damn blood sugar and eat whatever the fuck you want.

OK, I exaggerate, but that’s the essence of my feelings towards diabetes and end-of-life care. About two years ago I had a home health aide call me in a panic. “Mr. Gonzales (not his real name) is insisting I go buy him a candy bar, what should I do?”

Buy him the candy bar, I told her.

“But… but… he’s diabetic!”

Don’t worry, the cancer will kill him long before his blood sugar will get the chance. It’s OK. Go. Buy him the candy bar.

Modern medicine suffers from a lack of balance at times.

I recently got a new patient. She was on hospice for three fucking years. Three. That’s six recertifications while waiting to expire. She must really hate her insurance company.

She was dying, no shit, of diarrhea. Uh… OK, so that was a really bad choice of words on my part. She was suffering from severe, chronic, mystery diarrhea so horrendous that she was malnourished. Every test in the world had been run. Blood tests, MRI’s, CT scans. Numerous specialists were brought it. I think they even consulted an Ouija Board.

One of the docs involved told me the diarrhea was so severe it reminded her of chlorella. But the patient was negative for chlorella too.

Until my boss got on the case, no one could figure out what was causing it. It turns out the recipe for this woman’s near demise was four atoms of carbon, eleven atoms of hydrogen, and five atoms of nitrogen. More on that in a bit.

But first I want to take a detour into botany and history. Grab your keys, jump in your time machine and fire it up. Let us go to 1920.

What’s happening in diabetes in 1920?

Everyone is dying.

Yep. This is before insulin. Not only is there no cure for diabetes, there isn’t even any treatment. Of course, diabetes didn’t kill most diabetics. Starvation did. To pull every day of life out of their patients, the diabetes experts of the day literally starved their patients to death.

Remember what I said about lack balance in medicine?

Well, we all know about Best and Banting and insulin. But do you really think no one else was on the case? Ever heard of Werner and Bell? Or Slotta and Tschesche?

Me neither. They were barking up a different tree than Best and Banting. Well, not a tree so much as a plant. While Dr. Banting was operating on stray dogs, Werner and Bell were stopping to smell the flowers. The lilacs, to be precise.

Various scientists played with galega officinalis, a.k.a. the French lilac, a.k.a. Goat’s rue, from 1920 onwards. Folklore dating back to the Middle Ages had long held that the plant could lower blood sugar. The only problem is that it’s toxic as hell.

As a complete side note, it may or may not interest you to know that here in the States, galega officinalis is listed on the Federal Noxious Weed List (I didn’t even know there was such a list until I started researching this subject).

Anyway, as insulin improved, other approaches were over shadowed. Galega officinalis was shelved. Until Type-2 diabetes started expanding.

T-2s don’t like shots.

Actually we T-1s aren’t wild about them either, especially if you look back at those harpoon-sized needles we used to use:

The difference being, of course, if our kind doesn’t take the shots we die. Type-2 can die too, but it takes a looooooooong time and that leaves lots of wiggle room. And an opportunity for pills. Motivated by the prospect of easy money, pharma scientists started looking at past research. Not for drugs that would keep T-1s alive, there was insulin for that, but for something else. For something than could lower blood sugar just enough to keep the T-2s alive and kicking.

Among other things, the French lilac got a second look. It was turned into a pill and by 1957 the first clinical trial was conducted, ironically, in France.

It was first in a class of drugs that would become known as the biguanides. Ironically, this med was shelved a second time when a sister drug in the same class caused a handful of deaths after it hit the market.

The French lilac again collected garden dust until the mid 1970s when new studies showed it was more than 20-times safer than its killing cousin. France again took the lead, approving it in 1979. The FDA took longer. It hit the US market in 1994.

It’s trade name was Latin for sugar eater: Glucophage. It is now generic and is known more commonly by its technical name: Metformin. It is the de facto first line medication for T-2 diabetes, with over 42 million prescriptions written for it last year in the US alone.

Metformin had one recognized side effect. Rare but serious. So rare, in fact, I’ve never met a doc who’s seen it in the flesh. But so serious that it is debatable whether it makes more sense to call an ambulance or call a hearse. Especially in those with comprised kidney function, metformin can cause lactic acidosis. I won’t bore you with the details, but trust me when I tell you that you really don’t want a case of lactic acidosis.

On the opposite side of the coin from death is life, and metformin has the bad habit of making women more fertile. I was running an oral glucose tolerance test on a young woman just last week. She’d been put on metformin (not by us) for pre-diabetes. No one told her it would bump her fertility up. Oops!

Oh yeah. Metformin has one other side effect too. It can cause upset stomach, especially when you are just starting out. This is why we generally start people off with little baby “sub-therapeutic” doses and titrate them upwards.

Oh, yes. One other little thing. Sometimes metformin gives folks diarrhea. But it’s usually not serious and doesn’t last long.

Now, remember my woman on hospice? The one with three years of ultra severe diarrhea so bad it was killing her?

My boss, who does hospice work on the side, was looking at her med list. She’d been on metformin for over a decade. But, what the hell, he figured. Metformin sometimes causes diarrhea. He ordered it stopped.

And three days later she was fine.

After three years of hell, after dozens of tests and doctors visits and consults and specialists, it turns out her problem was caused by a humble, $4 generic diabetes medication.

She’s off hospice. We started insulin to keep her blood sugars at bay. She’s back from the dead, or at least from the expectation of dead soon. She certainly has her life back.

So now she can at long last relax and smell the flowers.

But just not the lilacs.

The Ames Eyetone Trophy for Writing Excellence

I won a writing award for my CGM compendium, Beyond Fingersticks, the other day: the Ames Eyetone Trophy.

Now, I’ll forgive you for being unfamiliar with the Eyetone trophy, as it is not nearly as well known as the Pulitzer, Hoffer, or even the National Book awards. I’ll even forgive you if “Ames Eyetone” doesn’t ring a bell in your brain, either.

But it should.

I’d heard about the Eyetone, of course. I knew a little about it, but not much. I don’t think I ever even saw a picture of one. Until I won the Trophy.

The Ames Eyetone was the great-great-granddaddy of every blood glucose meter on the planet. It came on the market when all of our kind were still peeing on strips to see where our blood sugar was hours ago.

I Googled around to try and learn more about this pre-internet technological marvel, but there is an appalling lack of information out there about it. What I did learn is that it came out in 1978 and was the first device available to consumers for testing their own blood sugar. It tipped the scales at nearly four pounds, and had to plug into a wall outlet. It was fast. Why it gave you results in a minute!

Life was slower back then.

Except for that whole plugging into a wall thing, it is about the size and shape and look of Mr. Spock’s tricorder device in the original Star Trek TV show.

Who knew Spock was diabetic?

Back in the day, the Ames Eyetone would set you back $400. Of course, what’s really appalling, is that it would have set you back $1,390 in today’s money. Something to think about the next time you are whining about the cost of CGM systems.

It read the existing-for-a-decade Dextostix strip. The Dextostix was a strip that you put a drop of blood on, engaged in a ritual using a squirt bottle of water, a stopwatch, and a color chart. Dextostix strips apparently worked great, but the variation in color was so subtle that most users could only tell if they were high or low. The Eyetone read reflected light off of the Dextostix strip to give you a more accurate blood sugar reading.

My favorite part of the device is the readout. We are so used digital readouts where a machine gives us a number. The Ames Eyetone has a needle:

Actually, according to diabetes guru David Mendosa, the Eyetone was the second-generation of the Ames blood-sugar meter. Ames had been making the more pricy reflectance meter, the A.R. M. of Dr. Bernstein fame, for hospitals and doctor’s offices for a few years before that. You can read David’s fascinating history of meters here: http://www.mendosa.com/history.htm

But back to the Trophy. Beyond Fingersticks had only been out about two weeks when I received an email with the deceptively simple subject line: Trophy.

My first thought was that I was getting spam from some company that makes trophies and award plaques. I almost didn’t open it, as that whole thing with the hot Russian babes that were dying to meet me didn’t work out so well.

Instinct saved me. I opened the email and read:

“I just finished your CGM book and am reading it again. I’m impressed. You certainly deserve some kind of award for writing this book. It could only have been written by a seasoned and very honest diabetic, a world-class teacher, an experienced clinician, and a storyteller.

So what could be an appropriate gift, a trophy of sorts? Well, I have just the thing.

I'm sending you something with some serious sentimental value that I hope you can use in your office as a conversation piece: my 1979 Ames Eyetone Reflectance Meter. I was diagnosed in Dec 1979 and along with teaching me how to do urine tests and showing me how to inject 20 u of NPH every morning and hope for the best...the folks at Children's Hospital in Pittsburgh also recommend I try this other thing, this brand new thing that people had just started using to test their own blood at home, this big black box that could kind of...supplement your urine-test chart, said the nurses.

I've been hanging on to this little piece of diabetes history all these years thinking I'd sell it to the Joslin Clinic for a pretty penny for their museum after there was a cure. But since that hasn't happened, I want to send it to a fellow PWD that is seeing patients, teaching, writing and telling stories. (I surely wish I had known someone like you to give me a hand back in 1979.) Enjoy it for a while, then sell it to a museum if the time comes.”

The email was from “Laura,” one of my diabetic sisters. (That’s what I get for looking at the subject line instead of just looking to see who the email is from). We’ve corresponded on and off over the years. She’s an “undercover” T-1, as her job could be threatened if her employer knew of her condition. She’s not breaking any laws, it’s not like she’s flying an airliner for a living, she’s just being prudent and realistic about the prejudices where she is.

So yeah, the Ames Eyetone Trophy isn’t a “real” contest. I had no competition, no panel of judges. But it was awarded from the heart, by one of my own kind, and that makes it, by far, it is the greatest honor I’ve ever won.

And while I’m the first diabetes writer to ever win it the Ames Eyetone Trophy, I won’t be the last. I’m never selling it. But when I’m old and grayer and willing to part with it, I’ll award it to some other deserving writer.

Maybe to the guy or gal who writes the history of the cure.