How treatments are labeled, and how we PWD *really* use them

Treatment
#1

Much discussion of late has been around this topic. Some of it a bit contentious.

Yet, pondering it, I realized that pretty much only pills, and in this the only D-drug I'm on other than insulin is metformin, do I follow instructions faithfully.

Insulin? No way. I'm all over the map doing stuff with it that is most definitely "off-label" from the standpoint of standard D prescription. Same with my G4 CGM.

Here's what I do "off-label" to manage my Diabetes:

  • Intramuscular injections -- 2-3 a week to bring down highs. I even do this for moderate (<150) stubborn highs, just because it's so much faster (2x). I do this even though I'm wearing a pod and could bolus that way.
  • Manage IOB on two devices -- pump and/or smartphone -- as needed due to insulin administration outside pump delivery. It's not hard, but it's more complicated.
  • Make bolus decisions based on my CGM. I have so much experience with the thing now, how it plays with my system, when it's going to be significantly off, etc., that what risk is there is minor in my opinion, and my experience. Since the new firmware flash last fall, it's become even way more accurate. I can rely on the readings usually well into a calibration cycle even, within constraints (sensor not too old, BG stable, some other conditions).
  • The pre-bolus game. I try to time my boluses so that insulin peaks when carb digestion begins (i.e. glucose entering the blood) if I'm starting from normal (70-90), or peak when I take first bite (starting a bit high, 100-130). It's a game of chicken, and I've had to pre-empt hypos now and then with a few skittles. However, it's a strategy that allows me to still have 40-60 carbs at a meal an still stay under 140 peaking, then landing back in the 80s 4 hours later.
  • If I miss a met dose (1000mg 2x a day) I'll take 1 1/2 on the next dose. Works really well.

There are others that I'll post as I think of them.

The biggest takeaway here is this: I'd never be able to achieve an a1c of 6% if I didn't "go rogue" like this. I firmly believe I can get down to my goal of 5.5% with these same tools if I work more agressively at treating highs and cutting out late night snacking, my demon.

I know I can get there easily with a tool like Afrezza added to my arsenal, which of course I'll be administering in all sorts of off-label ways.

#2

Dave,

You do realize that most people can't even balance their checkbooks. The math and engineering skills you are using are very rare. One of my kids teaches science at the university level and has students--with Science Majors--who can't do fractions or percents properly.

So you really have to be very aware that some of what works for you is very dangerous for people who don't fully understand what they are doing, and that this being the internet, quite a few of them are probably reading what you post.

The reason that doctors are so careful is that they have learned that their patients do not know or are even capable of understanding all the things that seem so obvious to someone who has studied this stuff. And they have also learned--often through spending time as ER doctors--that their patients will do some incredibly dumb things.

Just in my years of answering a lot of mail from people who visit my site, I have learned that people have extremely poor reading skills and that they will do some very strange stuff because they read something on a web page--that they don't actually understand.

So keep this in mind when you write about offlabel uses. You really don't want some well-intentioned person who doesn't understand things you think everyone must understand ending up in the ER or harming their child, because they did something that you described.

The intramuscular injections, in particular, sound like an extremely bad idea. I've heard from people who have accidentally mainstreamed Lantus. It makes for a very exciting couple of hours of nonstop carb loading. And while you know the difference between fast acting and Basal, a lot of people don't, including a lot of Type 2s "on insulin" who don't realize there is other insulin besides Lantus.

So take care ...

#3

I think what you are saying, is that it's not "one size fits all."

Endos PCPs, PWD, should all be aware of this. Unfortunately, when it comes to treating D, many are not.

#4

Based on my completely unscientific observations, a huge percentage of pumpers (probably a majority) have no desire to; no understanding of the pharmacodynamics of; or are simply afraid to do something as simple as adjusting their basal rate, let alone something more 'sophisticated'.

Heck most don't even understand that are several different types of insulin.

This observation has been confirmed by my doc.

#5

I think the "dose" on my humalog is ridiculous! "Take 60 Units, ONCE per day". I'd need to eat a damn pizza and ice cream to handle that, and I'm resistant as hell. lol

#6

The sad thing is a lot of people who aren't real capable or inclined to think for themselves would just read that and think, "well its the doctor's orders" and dial up 60u....

That's a real problem...

#7

I suppose I've always been the kinda person to learn almost everything on my own, and feel like my blood sugars are my responsibility. I think that my Dr. is there to give me the medication that I need to manage it rather than tell me how to use it. I can learn more on my own than my Dr. can ever learn about my response to certain foods.

I guess most people aren't willing or able to take the time to learn the nuance of diabetes. If the Dr. says testing 2x week is ok, they're cool with that, whereas I would look at my Dr. like he was a fool. I suppose that's why most T2s prefer a pill, whereas I prefer insulin and feel I can get better long term control with that approach.

#8

Your insulin comes with a dose? Mine just says "Use as needed as directed" as do other medications I have that are used as needed rather than on a fixed schedule.

#9

I think part of the issue is that a lot of people are just struggling to get the basics - even people who know perfectly well what they are doing. It's hard enough just to find basal rates and ratios that keep blood sugar steady and learn how to correct lows without over-treating and learn how to manage exercise and sick days and hormones. Sometimes it's hard to get that stuff because you don't have the right tools, but even with the right tools it can be a long haul (decades) to figure out. It takes a lot of persistence and patience and determination to do. The stuff you are talking about are things people only look into once they have a grasp on all of the above. By the time they get to that point they're at a pretty advanced stage of diabetes management, and since not a lot of people get there (either because they can't or they're not willing to put in the effort), it's maybe the top 1% of the diabetic population...

#10

I think it's for insurance purposes? I determine how much Insulin I need, prove it to my Dr. with my numbers, and he calls in/updates the Rx based on those numbers.

For instance, the humalog says "use 60 units once a day" which means I need a pack of 6-7 pens to last me a month. So therefore, I have to get the 10pack of pens which makes my supply effectively a 50 day supply for insurance purposes, thus having to pay 2 copays.

That's why I thought the Dr had to write a dosing requirement on the Rx

#11

Oooh, okay. Maybe it's differnet here. Our prescriptions have one part that says the requirement (1500 units for 30 days, for example) and one part that says the instructions (use as needed as directed).

#12

The sad thing, IMO, is a pharmacist who starts to give you a hard time for NOT dosing "as prescribed" ... along with the pharmacy "systems" that are tied into insurance that can't understand how each of us is variable.

#13

I have actually had to ask my doc (and he had no problem with it) to put on my prescription, exactly what it had to be so that I get a vial every month (what with Humalog and Lantus nominally only being good for 28 or 30 days). This works out to 33 units a day. 33*30 = 990.

I more typically take 20 units a day but if he writes a prescription for that, I only get two vials every three months. (20*30*3 = 1800).

#14

I have been T1 for a third of a century now. That means hundreds of endo visits. Inevitably part of the conversation especially when I was younger was what classes I was taking - which were very much math oriented (with degrees in math, physics, and astronomy, and a job that is very much applied-math and engineering oriented).

One thing I have noticed from these conversations is docs really don't like math. They especially didn't like math when they were in colelge. They took math classes in college but that was only to meet the bare minimum of the pre-med requirements, and they all thought the classes were grueling hard, and never enjoyed it at all. They might be OK with tables of numbers but often break down when it comes to graphed complex values.

OTOH, any engineer would recognize bg control as a servo loop problem, very close to a PID controller. And of course anyone with a deep background in measurement and physical sciences knows the letters in PID mean P = proportional (a math word!), I = integral (a math word!), D = derivative (yet another math word!). We are always looking at the difference between our current bg and target bg and coefficients like "correction factors" and "insulin sensitivity" all the time in our talking, those are the "Proportional" factors. We use rule-of-thumb summations like the "rule of 1800" related to industrial stoichiometry as well as area-under-the curve summations like "dual wave" or "insulin in board" related to the "Integral" word. And we know (or want to know) if our bg is trending up or down at any given moment, and how fast, dependent on recent insulin and meal absorption, related to the "derivative" factors. So there is a lot of applied math going on in keeping bg under control.


Yet the vast majority of docs out there are afraid of math. They can kinda stomach some of the rules of thumb which are useful, but don't really grok the curves and graphs and how useful they can be for tweaking to get most optimal control.

We are fortunate that the folks who design the most advanced bg control tools are engineers and physical scientists not scared of graphs. Heck, folks here instantly look at multiple days of readings on CGM's little graph display and instantly know what it means. And the pumps I've seen have a menu option for "dual wave bolus" that uses an icon which is a little graph of the insulin dose pattern for that option. There are some docs who are truly comfortable working with graphs etc. but they are a very small fraction of the total there. Fortunately between pump companies and their patients using these tools, many docs are receiving the needed education on dealing with the complex factors through graphical tools. You will notice, still, many endos bump all that "math and techno stuff" to pump-specialist-CDE's and do not do it themselves.

#15

My docs real aware of that… Thankfully… Writes rxs for significantly more than I “need”

#16

Jenny, all valid points, and complications to public fora that I am sensitive to.

I balance this against my views that adult people are responsible for themselves, and it is their charge to not be foolish.

Despite this, people ARE foolish all the time. I've seen posts about foolish people getting injured (seriously) trying complicated modification to their cars without mechanical experience or skills, and then crashing.

My dad is a retired internist. The stories of people getting sick from crap they've read about in "natural foods" newsgroups, and then trying something themselves that they really don't know enough about.

I don't believe in censorship to protect people from themselves. I believe strongly that other diabetics like me, that want to take a more "hardcore" approach by learning from others.

Re: IM injections. I'd urge you to do a bit more research on this. What I found before trying it was quite different from your characterization. Never seen it called "dangerous", and there are plenty of doctors and CDEs that are fine with them, if the patient knows what they're doing. My endo is on board.

The main issue with an IM is just that it's faster, so any duration of action calculations normally used (and perhaps programmed into an app like Glucosurfer) will miscaclulate IOB. However, that error is in the safe direction (yielding IOB when in fact it's all gone), so theirs a built-in safety fail-safe on that one.

In fact, IIRC Gary Scheiner, CDE extraordinaire, published an article about ways to speed up insulin action, and IM was prominent as one of the really good ways to do it.

#17

That's the way mine's labeled -- 3000U/30days.

#18

One trick I use to build up a little reserve is to refill every 25 days. You can always refill 5 days early (don't know if this is regulated or not, but it's always been that way in my experience).

This is allowed -- at least for me, maybe I'm just special :-) -- for 30-day prescriptions.

#19

I agree with your analysis, Jen.

It is my firm opinion that much of this is because of the way we (society) manage diabetes, not because people are just not capable of a more involved approach.

Yes, there are plenty of "disinterested" diabetics that just want to take a pill and forget about it. That's their choice.

At the same time, I know there are many, many diabetics both motivated and capable to do much more to manage their condition, of only they knew. Just among the slice of society that Jenny mentions -- engineers -- the vast majority of T2 diabetics are simply completely ignorant about the whole thing, functioning under the "take a pill and forget it" regimen because that's how they've been told to treat it.

They are not informed about all the issues with BG over 140, and on and on, that are outlined on Jenny's site, and discussed here routinely.

Those people are the target of my postings (not just engineers). Their quality of life, and perhaps life itself, is at stake. They are not being educated and informed by the health care industry. They are not offered the tools that can make controlling their D really well possible.

They are not going to get this from their doctors. They are only going to get it from us.

#20
OTOH, any engineer would recognize bg control as a servo loop problem

BINGO!!

Give that man a cigar :-)