LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Tuesday, August 14, 2007

Empowerment

One of my sisters, who has an agile, creative mind and a great sense of humor, once advocated the theory that the world was flat until Columbus sailed around it. “The weight of his ships caused the very edge to collapse and turn in on itself, making the world round,” she told me when I was young enough to almost believe it. Hard to prove otherwise, after all. No matter what you think of Columbus now, you have to give him credit for having the intellect to recognize the world was round (or could be made round with the weight of three small ships) and the courage to prove his point.

Worlds tend to stay flat until someone sails around them. Recently I’ve had reason to suspect that our flat diabetes world might actually be round too. I’m not sure I have the courage to sail around it to prove it, but I’ll at least raise the issue.

I first began to suspect the diabetes world isn’t flat just the other day, when I did a truly great thing. I gave a man we’ll call ‘Tom’ control of his life again. I gave him the tools that empowered him to gain control over his diabetes. And the experience has led my mind in a whole new direction.

We have a growing number of Type-1s at my clinic, mostly, I suspect, because I’m there. We T-1s are lone wolves by statistical happenstance rather than by choice, but we are social animals like anyone else. I saw a kid in Target last week wearing a MedT pump and I almost grabbed him and hugged him, I was so happy to see one of my own kind in the wild.

At the clinic I now have eight T-1’s so starting next month we’re going to add Type-1 group meetings. Pretty exciting, but of course the rest of my 200 patients are Type-2s.

Some will argue that the two conditions shouldn’t even have the same name, as they are soooooooo different in many fundamental ways. Any T-1 who has been accosted by some ignorant fool and accused of having brought diabetes on themselves by over-eating probably falls into this camp. When I worked at the largest hospital in the northern half of my state I even had a senior RN tell me that I “didn’t look like a diabetic.” I told her the big red ‘D’ that had been tattooed on my forehead when I was Dxed finally washed off.

Oh yeah, back to my point. I feel that all diabetics have more in common than we differ. We use many of the same meds. We share much of the same technology. We suffer the same complications, fears, challenges, and depression. We’re not quite the same family, but we are all certainly the same tribe.

But recently I’ve been thinking a lot about BGL testing. I read somewhere (and I wish I could remember where I read this) that there was a study comparing T-2 on orals who test vs. those who don’t and found no real difference in outcome. At the time I thought it was the stupidest thing I’d ever heard of. How can one control diabetes without checking your blood sugar, for Christsake?

When Tom’s Type-2 went to the next level he’d exhausted his oral options and it was time for the insulin talk. A brief side on treating Type-2 diabetes: First, on Dx, a patient is instructed to lose weight, eat sensibly, and exercise. This first step so universally fails that I’ve done away with it at our clinic. It’s too much change too quickly. Patients given these instructions can’t do it, then they don’t come back because they don’t want to face the negative wrath of their provider. Sort of like crawling under a rock to die, but usually justified with “but I don’t feel bad.”

Our approach, instead, is to medicate the patient to safety, ask them to give up only regular soda and to use Splenda in coffee and tea instead of sugar. I’ve had good luck with this approach. As sugars begin to drop and the patient starts to feel energy they’d forgotten they had, they are ready to make a series of small changes to their diet and activity. I call it “winning the war one tortilla and a time.”

Now, Type-2 medication plans look like a wedding cake. First you start with Metformin, at a small dose ‘cause the stomach needs time to tolerate it, then keeping racking it up until the patient is at goal or you’ve reached the max dose. When the first layer of the cake either fails or loses it’s effectiveness you add the next layer. So the second layer, if your doctor has been living with cavemen, is a sulfonylurea agent like Glipizide. Terrible stuff.

Picture this drug like the slave-driver with the whip in the back of the Roman galley. Row! Swishhhhhcccraccck! Row! Swishhhhhcccraccck! Row! Swishhhhhcccraccck! Row! Swishhhhhcccraccck! Row! Swishhhhhcccraccck! This drug makes the pancreas over-produce insulin 24-7 to try to overwhelm the inherent insulin resistance that is part of Type-2.

The problem is, well actually, the problems are as follows: you are producing extra insulin all the time. If your activity is up or you skip meals you are hypo prone. These hypos are harder to predict than the ones those of us shooting or pumping insulin have to deal with. For folks on insulin therapy, most hypos come from fast-acting insulin. You know the window of opportunity the hypo has based on when you bloused. Back to the Glipizide, the other problem is that overworking anything, be it machine or body part, has only one inevitable outcome. It will burnout. Then the patient is totally insulin dependent.

I’ve taken scores of people off this horrid drug. I have however, put one man on it. A A1C 15.7 commercial truck driver with morning fasting numbers in the high 400s and low 500s. Anyone else on the planet would have been learning to use a flexpen the day they came in to the clinic; but if I put this guy on liquid insulin he loses his license and his livelihood. After much soul searching with the medical director, we chose glip as a “lesser of evils.” The shit really does work. The guy is doing great. For now.

So as I say, we usually skip this layer of the cake and go straight to the TZD. Use to be we used Avandia until the recent flap. I can’t honestly tell you if Avandia is bad stuff or not. We pulled every one of our Avandia users off, migrating them to Actos, Byetta, or insulin. I don’t think much of the study that caused the trouble but I also didn’t think much of the Avandia rep sitting in my office and telling me with a straight face that his company, who made 3.2 billion-with-a-B dollars on this drug last year alone, wasn’t in it for the money. The real tragedy, he told me, wasn’t any money GSK might have lost, but was all these poor diabetics who might have to do without their meds. “We’re only in this to help the patients,” he said with the sincerity of the world’s best used car salesman.

I bit my tongue, told him that of course our door was always open to him but that Avandia didn’t have a place on our pharmacy shelves until the smoke cleared. Even if I was totally convinced that it was safe (and I’m not) I doubt that at this point I could get my patients to take it, even if I held a gun to their heads. As a side note, the mother of a Avandia rep in the mid-west told me her son’s bonus last year was $55,000. Yeah, not his pay, just his bonus. I don’t make that much working three jobs.

Once the met and the glip and the TZDs are maxed its time to talk about insulin or Byetta. (If the @#$%&# insurance companies would pay for it I’d start many people on Byetta the day they were Dxed. However, our world being what it is, a patient has to “fail to reach goal” for six months on all of these old school meds before insurance will even think about paying for something that will actually work.)

OK, so it wasn’t really that much of a “brief” side note after all. Maybe this is why I wasn’t able to get that job at Reader’s Digest. Aren’t all of you glad I’m posting weekly now instead of daily? Think how much more time I’ve freed up for all of you!

Back to “Tom.” As every day passed over the years Tom’s diabetes progressed. Like a glacier moving down a mountain slowly but relentlessly an inch per year his diabetes slowly but unstoppably became worse. During the same march of time his oral meds began to lose their effectiveness. His body adapted to them. They didn’t work as well as they once did. The entire wedding cake was maxed at each level. His morning fasting numbers were stuck at in the 150s. He checked diligently. Watched his diet like a hawk. Took his all his meds but was still powerless to stop the glacier. He was very frustrated.

I showed him a demo flex pen and discussed the ups and downs of insulin with him. He had no fear of needles, but had a problem. His hands have a Parkinson-like shake. He didn’t think he had the motor control to give himself a shot. His wife completely freaked out at the thought of having to give him shots. It was then my eye was caught by a very expensive paper weight on my desk. An Exubera inhaler.

When the novel inhaled insulin first hit the market about a year ago our clinic was actually the first non-endocrinology practice in our state to have both real inhalers and powered insulin packets. I like to keep us on the cutting edge and I like to have every possible tool to use.

Life being what it is, only the poor and the smokers were interested. We never scripted it out. I used it several times and liked it well enough. It has a very flat profile compared to liquid insulins, the excursion is blunted. I just wish they had thought to start with an inhaled basal insulin rather than a fast-acting. Most of my T-2s need basal first and once they are use to taking basal shots, inhaling the fast-acting doesn’t have that much appeal.

But now it looked like I had a good candidate. As a bonus, his real problem seemed to be his post parandials. I felt we had a good chance of bringing his morning fastings into line if we knocked down the post p’s.

So, long story short (hehehe) we got him set up. I called my Pfizer rep who came over for the “insulin start” bearing chicken-green-chili-alfredo-lasagna. Heaven on a plate. We trained Tom then he and I and one of my crew (I have a staff of five, four of whom are D-folk) all took “hits” on Exubera inhalers. Looks a bit like a bong, but it feels no different than breathing normal air.

Tom started at 120 mg/dl. He ate a piece of the lasagna about the size of his head. And bread. And salad. And diet Pepsi (tastes better than regular Pepsi which I always hated in my pre-diabetic days). We chatted and took regular finger sticks over the next three hours. He drifted gently down into the high eighties, then came back up to 106 and stayed there. His blood sugar never went higher than where it started. It never went too low. It acted just like a non-diabetic person’s blood sugar. Mine also drifted down initially. I was ecstatic to be able to watch my body’s response to the new insulin in real time on my new Guardian. About an hour into it I had a slow steady rise which peaked around 130 then settled in, a hair high in the 120s. It blew my mind. I’m still hooked up to the pump, but I’ve been experimenting with at least one meal each day using Exubera to see if it is more excursion-free than liquid insulins. I’ve become increasingly convinced that glycemic variability is a greater evil in terms of causing complications than average blood sugar (within limits) is.

Speaking of watching my blood sugar in real time, I gotta tell you, this is a real treat on the New Guardian. The original garage door opener just showed you a number and if my feeble memory serves me correctly, I had to press a button to get that info. ParaPump had a graphic display but it had it’s problems. You had to press some buttons to get there, and the screen timed out after a little while. ParaPump was also limited to three hour and 24 hour graphs. I found that the three hour’s vertical vs. horizontal displacement made all but the most severe drops look flat; and that the 24 hour was too much info in too little space. No way to make sense of it.

The New Guardian solves both of these problems very nicely. First, you can leave one of the graphs “on” all the time as a de-facto home screen. You do this by selecting “none” for Graph Timeout on the setup menu. She’s a bit of a battery hog when you do this, but the payoff is worth it in my book. I burn through a battery in a little over a week. My solution is to buy a huge brick of AAA bunny batteries at Sam’s Club.

The device has a battery strength icon in the upper right. My advice, if you are down to one little square at bed time, is to put in a fresh battery. Trust me on this one.

While I’m on the subject, next to the battery icon is the telemetry icon. It’s officially called the “Sensor Icon” and all it really tells you is that the machine is in communication with the transmitter. If your transmitter goes around the dark side of the moon, just like with NASA in the moon-shot days, you’ll lose telemetry and the monitor won’t receive data from the transmitter. Unlike the old Guardian, however, this data is not lost. The smart little seashell will hold about a half hour of data. I can now take my morning shower without worrying about losing data. Also on top of the screen is the current time. So the device doubles as a digital watch.

Off to the right of the graph, on the bottom right in nice large numbers is the most recent SG, or Sensor Glucose. This terminology is relatively new and serves to remind us that we really aren’t monitoring our Blood Sugar any more. SG is the new BG, as it were.

Above that is a graph type “headline,” 3 hour, 6 hour, 12 hour, or 24 hour. Above that is the time at which the last SG was measured. A quick glance at this number and the time at the top of the monitor tells you how soon you are in for an update.

Remember, continuous glucose monitoring is not continuous at all. It is every five minutes. The best analogy is motion picture film. Motion pictures don’t really move at all. You get the illusion of movement by projecting a series of still images at a very fast rate.

I have settled on 6 hour as my favorite graph, and I leave my New Girl on this graph pretty much 24-7. It puts in current glucose into a perspective that makes sense to me and the length and height of the graph really work. I can see the flow. The trend. The speed. All with very little brain work on my part. Columbus’ compass had nothing on this little beauty for navigating me safely through dangerous waters.

The 12-hour graph is pretty cool too, and I’ll often check it to see how the day has been shaping up. I almost never use the 3 hour or 24 hour graphs.

For the Exubera lunch I slipped the girl out of her belt case and set her on the edge of my desk were I could watch her out of the corner of my eye. I never lost signal and she worked like a champ the entire time.

When Tom left, three-and-a-half hours after he arrived, carrying his giant “starter kit” box with an inhaler, spare chamber, insulin powder packets, spare release units, carrying case and a sheet of stickers to put on his calendar to remind him of chamber maintenance requirements, he had the biggest smile on his face I’ve even seen. He told me he hadn’t seen BGLs this low in years. He felt great, and he felt empowered. He told me of his frustration of taking his blood sugar and seeing numbers he knew where bad and not being able to do anything about it. Now he knew he could take a 1mg packet as a correction bolus if his sugar was too high. Now he knew he could vary the amount of insulin he took depending on the size of his meal. He understood that his life just got more complicated, but that it was worth it. Now he was in the driver’s seat, not his diabetes.

As a side note, all of us left that day with by far the coolest drug rep pens any of us have ever seen. Thin, sexy, burnished silver reminiscent of stainless steel. It has both an ink pen and a stylus for PDA or tablet computer. At the top it has two buttons. One turns on a bright clean blue-white LED flashlight. The other a laser pointer. Very, very, very cool.

The next day Tom came to our monthly diabetes support and education group, his laser-flashlight-stylus Buck Rogers pen in his pocket. He stood up and told the group of 31 diabetics that even though it had only been a little over 24 hours that his life had been changed forever and for the better. It was the best thing that had happened to him since he had been Dxed. It was so great that he could now do something about the numbers he saw on his meter.

These words echoed in my head as I drove the 75 miles from mountain valley the clinic is nestled in, to the open mesa lands where I live. That night, on the back porch, smoking my pipe and unwinding from the day by watching thunderstorms sweep over the distant landscape I talked to Debbie about it. She’s a borderline pre-D/T-2; and by far my most non-compliant patient.

“I hate, hate, hate, hate, HATE taking my blood sugar!” she told me. “If it is a bad number what can I do? It just depresses me and then all I want to do is eat chocolate.”

Hmmmmmmmm…..now I’m thinking about the study of diabetics who test and those who don’t again. Exactly why do we ask D-folk on oral meds to test? It’s convenient for me. I can look at their sugars when they come in and see if adjustments are in order. But I could do that with A1C’s too. We’ve got an A1C machine in the lab, I get results in six minutes. We’re getting a second machine later this year, so we’ll have one in my office too. But if I do want a clearer picture of fasting vs. post p wouldn’t it be just as useful for me to have the patient test intensively for one week before his/her visit rather than all the time?

On rare occasions some patients will make connections between what they eat and what they see on their meter. Most times patients come in and say “you’re not going to be happy with my numbers;” or “I’m pretty happy with my numbers.” Actually most times they tell me “I forgot my meter and log book.” But either way, those on orals have no power to change what they see. So much for the self-managed disease.

So I’m beginning to question how we use BGL meters. I wonder if it is a good idea to have oral med patients checking every day. This last week we participated in a University of New Mexico RIOS Net project. RIOS stands for Research In Outpatient Settings. They run field-based mini clinical studies. This one focused on A.N. as a risk factor for diabetes. I chatted with the state coordinator about setting up a study at our clinic. If we can get grant funds we can set up several groups using various testing strategies to see what works best. I do have one fear deep in my belly. I’d hate like hell to give insurance companies any ammo for not covering test strips, but ultimately what is best for the patient is best for the patient. If testing less makes life easier and does not change the quality of control then that is what we should do.

But that is in the future, for now we stick with “test, don’t guess.” For now we hand out BGL meters like candy at Halloween. For now we continue to supply the means of seeing blood sugar without the tools to correct it. For now nothing changes.

But now I’m starting to question if the world is really flat after all.

10 Comments:

Blogger Kelsey said...

Wil,

I had to comment because I was proud of myself for reading that entire post :) Very interesting.

Perhaps the other side of the coin is that T2s who test and see numbers they aren't happy with, might be more motivated to try the next level of care, i.e. insulin. That seems to be the case with Tom, right? I suppose the A1c result could motivate someone, but it doesn't seem like it would as much as seeing those numbers that you take yourself on a regular basis.

I don't know, maybe that's just the T1 in me talking.

Keep us updated on what happens if your clinic gets a study started.

2:06 PM  
Anonymous Amalas said...

RE: "I almost grabbed him and hugged him, I was so happy to see one of my own kind in the wild"

I do that too... =D (Also, "in the wild"... lol!)

2:08 PM  
Blogger cesnh said...

This comment has been removed by the author.

3:21 PM  
Blogger cesnh said...

Your post is fascinating. Thanks for taking the time to tell Tom's story. It's definitely "food for thought."

3:22 PM  
Anonymous itesseract said...

After reading this:

"First, on Dx, a patient is instructed to lose weight, eat sensibly, and exercise. This first step so universally fails that I’ve done away with it at our clinic. It’s too much change too quickly. Patients given these instructions can’t do it, then they don’t come back because they don’t want to face the negative wrath of their provider. Sort of like crawling under a rock to die, but usually justified with “but I don’t feel bad.”

Our approach, instead, is to medicate the patient to safety, ask them to give up only regular soda and to use Splenda in coffee and tea instead of sugar. I’ve had good luck with this approach. As sugars begin to drop and the patient starts to feel energy they’d forgotten they had, they are ready to make a series of small changes to their diet and activity. I call it “winning the war one tortilla and a time.”"

...what I have to say is that you deserve so much more than you have right now...you should be some famous doctor writing revolutionary books about diabetes treatment, not struggling with your finances working several jobs...

Thank you SO much for such an insightful post. I hope there are lots of doctors and diabetes educators, etc. reading, as well as PWDs.

Oh, and I am also of the opinion, as a type 1, that we PWDs (type 1 and type 2) have more in common than some people (including my mother) think.

7:46 PM  
Blogger Iheartfashion said...

Great post!
My 7 year old son's got Type 1 and gets very excited to see another of his kind in the wild too.

4:09 PM  
Anonymous Anonymous said...

I am a type 2 diagnosed on April 1, 2006. I take 500mg of Metformin 3 time/day (1500mg total) and 45mg Actos every morning. My meter is a great tool that I utilize for my diabetes self management. I couldn't manage my diabetes without it. Using it to test two hours after a meal has taught me what foods I can eat and what I cannot. This has been more helpful than working with the dietician's guidlines because we are all different and don't react to food the same way. I also found that if I eat the wrong thing and end up high a 30 minute walk will bring my blood glucose down 50 points.

By taking meds, eating right (for me), and walking for 30 minutes 5 to 7 days a week I have taken my fasting glucose from 300 down to 110 and my A1C down to 5.7, not bad in my book! It wouldn't have happened without my meter.

I will admit that I am not your average person. I've always had an analytical and scientific mind (what some would call anal) so I use the meter to my advantage. I also had a strong motivation to get healthy fast because my diabetes wasn't diagnosed until I developed Peripheral Neurpathy in my feet.

A medical study questions how a meter can help a type 2. I say that if a type 2 is properly educated in the use of the meter and how to make changes in lifestyle to improve those numbers their numbers and health will improve.

Just my two cents from a type 2 point of view.

Stuart

5:56 PM  
Blogger Scott K. Johnson said...

Great post Wil.

10:31 PM  
Anonymous JasonJayhawk said...

I liked your comment about the Avandia drug rep. The way you described how the rep spoke with you is common with all other reports of marching orders.

My endo said that an Avandia drug rep actually came up to her and said, "Don't you care about your patients' insulin resistance?"

She couldn't believe he said that to her! A lot of these drug reps have no clinical experience, and are more about good looks than medical knowledge.

1:02 AM  
Blogger nonegiven said...

IME carbohydrate restriction improved my insulin resistance more than a TZD and more than weight loss has.

If type 2s aren't making the connection between what they eat and the numbers they see on their meters whose fault is that? Maybe you could suggest that the next time they eat whatever they had again they should cut the amount of starch (or dessert) and add more low carb veggies to make up for it and see how much that helps. And why aren't you telling them the number will come down if they will take a walk or go for a swim, bike ride, etc., so if they want to eat a treat they should plan to exercise shortly afterwards?
If I listened to the person who educated me, I'd be eating 225g carb per day (actually I'd probably be eating much more than that, I found out that carbs were what were making me get hungry so often,) I'd be on several oral meds instead of metformin only and I'd probably be gaining more weight and using insulin by now, also. Luckily, algore invented the internet and some people on Usenet clued me in to what I should have been told by proffesionals.

My A1c started out at 12.3%, FBG 341, multiple drugs and the best I could stick with the ADA diet got that down to 10% and 200+ mg/dl, (also made me a balding, starving, bitch on wheels with no energy.) With carbohydrate restriction my A1c has been <6% for almost 3 years, lipids improved (were good to start with, tho) and my FBGs are in the 80s. Also, even though I never expected to lose any weight (no reason to think this time would be any different,) I did lose quite a bit and I'm still losing, without
going hungry or eating tasteless diet crap.

btw...you said
"Once the met and the glip and the TZDs are maxed its time to talk about insulin or Byetta."

If a sulf is not doing the job, Byetta or Januvia are unlikely to do any good at all. Raising the levels of GLP-1 stimulates the production of insulin similar to the way the sulfs do, but it only kicks in when BG rises higher than a certain amount so you don't have the same unpredictability and there is less chance of a dangerous hypo than there is with a sulf. If an incretin drug or a sulf doesn't work it means the person's ß-cells aren't capable of producing enough insulin to cover what they are eating.

Why do I have to tell you this stuff?

11:17 AM  

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