Dave, I see your point about gastroparesis (GP) prolonging meal digestion into the "out-hours," 3+ hours after a meal. It could be an explanation of why my Afrezza corrections do not consistently drive my BGs 40+ points lower. My perception of my GP is that it's moderate in effect. My immediate post-meal BGs do not go hypo like some people with BG report.
Thanks for your perspective. I'll continue to experiment and see what happens. Digestion and BG results have just enough factors in play, that drawing conclusions can be tricky. I'll continue to look to my BG line as my guide.
I think it marvelous that we have people in our "test cohort" with quite a diversity of diabetes challenges... We're building some valuable experience for others to build on.
GP I would thing that GP might be something that a doctor would at least "question" w.r.t. Afrezza; I can see a patient being denied the drug because of ignorance that our experiences here can resolve.
I think one of biggest risks with GP would be a delay in the initial digestion of carbs. I don’t experience this symptom. With the ultra fast acting Afrezza, going hypo soon after eating would be a risk.
While our collective Afrezza experience could help other people with diabetes and maybe their doctors, the research community will likely dismiss us as merely anecdotal.
As much as I respect science and the scientific method, its apparent disdain of valid individual experience troubles me. I have leveraged many anecdotal reports made here at TuD into solid treatment regimens that have well-stood extensive challenges over time.
I think suggesting science has disdain for individual experience is a huge stretch. The medical literature is full of articles along the lines of, "hey, look at this fascinating individual case that might have broader implications."
In fact, my most research-oriented doctor used to call my case "interesting enough to present about to his doctors' seminar, not interesting enough to write a journal article about." Actually, now that I apparently carry an unreported mutation of the GCK gene mutation that causes MODY-2, I might actually be worth writing a journal article about!
I do agree that doctors tend to be leery to make recommendations based on individual experiences and to want to wait for the evidence to cumulate. There are some good reasons for such caution, but I'm also glad lots of folks are willing to get ahead of the curve on occasion.
The online diabetes community was producing hundreds of individual cases of people bringing A1cs down from 10% or 11% to the 5% range back fifteen years ago. They were doing it by ditching the low fat diets that were universally prescribed at the time.
Doctors paid it no attention. It wasn't until the Atkins Foundation helped fund a whole host of studies that there was the slightest bit of interest. Even now, very few doctors tell patients with Type 2 that they could avoid medication entirely by changing how they eat. Even fewer tell them that they could avoid developing complications by keeping their A1cs at normal levels.
My doctor frequently tells me I "must" have heart disease because I've had diabetes since the 1990s. And of course, I come from a family riddled with heart disease. But I don't have heart disease. Nevertheless, I have never had anyone in the practice I've attended for well over a decade ask me how come my diabetes has not only not progressed but apparently improved? I never had anyone ask me how I kept my A1c in the 5% when I had been using insulin for 5 years.
The gene studies are fashionable right now and get the doctors who do them invited to present at prestigious conferences. But when it comes to day to day GPs and even endos, slogging in the trenches, there seems to be zero interest what the outliers who succeed in dealing with complex conditions do and whether this might be something that could benefit other patients.
And in my region the medical practices are still telling everyone diagnosed with diabetes--both Type 2 and Type 2 to eat lots of healthy carbs and avoid fat.
Perhaps disdain is too strong a word, maybe dismissive is better. I remember the debate online a few years back between the camp personified best by dietitian Hope Warshaw and the low carb advocates in the Dr. Bernstein camp.
The Warshaw proponents argue that it was only responsible to recommend diets based on peer-reviewed double blind randomly controlled trials. The Bernstein camp replied that these studies cost a lot of money and neither Big Food nor Big Pharma was ready to fund a study that compared high carb low fat against a truly representative low carb (<75 grams/day) high fat diet. Some studies disingenuously used much higher daily carb limits like 150-200 grams/day to represent "low carb."
The low-carb camp countered that just because something was anecdotal did not mean that it was not true. Especially when many people with diabetes were reporting, time after time, their success with limiting carbs.
My doctor does not seem curious about my success in a way that indicates enthusiasm for spreading what I do to her other patients. The only reason I can attribute to that behavior is that a medical professional basing recommendations not rooted in scientific fact would open her to difficult to defend criticism.
Unfortunately, clinicians waiting for scientific evidence to accumulate, will often delay effective action by decades. I don't have many decades left for that luxury!
Terry, I think its more a matter of seeing the data as unreliable, rather than disdain.
Without careful design and controls that are part of an actual study, all a doctor can say is, "this is what some people who have used it have reported." But the patient wants to know, "well, how will it affect me?"
Problem is, lacking the additional relevant data to the functioning of the drug (for example, degree of obesity may be a factor), and not knowing these parameters for those offering anecdotal experience, the doctor simply can't use that anecdotal information to say anything to the patient with enough certainty to matter. It may be that something about the diabetic on-line telling you to do it this way doesn't apply to the doctor's patient, and will make it not work well.
That said, I agree completely that doctors are not immune from general professional superiority, believing they have the knowledge and we don't, period. Not a problem with doctors, per se, a problem with human beings :-)
Tragic, because the health care profession could learn a lot from us unwashed diabetic masses.
I joined that paid online project just recently posted. I filled out the survey, and got a phone call for further screening about an hour later. Looks like I'm in. T2's only, but the purpose of the study is exciting: It's Big Pharma, trying to learn how T2's actually deal with and manage their condition day to day. The project is basically a TuD with a controlled selection of 60 T2s. I look forward to probably being the only T2 Ninja, although there could possibly be others :-)
I've read in the medical literature where the strength of the evidence was graded, like A though F, from the strongest evidence based trial to less strong evidence.
It seems to me that clinicians should not dismiss the actual experience of their patients, anecdotal though it may be. Especially when the patient's data, like CGM time in range and BG variability, lend credence to their words. We, as diabetics, are burning quickly through our time, while the peer reviewed randomly controlled double blind studies move a glacial speed.
I think clinicians should, at times, allow their patients to inform their recommendations to other patients. They can couch that recommendation in whatever context in which they feel comfortable.
I don't think we're in disagreement here to any significant degree. I would like doctors to give patients more information that could help them better manage their condition too.
However, law, medical ethics, etc. require that they "ignore" patient experience, to a degree, simply because they don't know that approaches that are working for patient A will necessarily work for patient B -- unless they know A LOT about patient A. The vast majority of time patient A is not their patient in these circumstances, but someone like you or me posting on TuD.
Rather, what I think doctors and CDEs could do a lot more of is integrating social media into the overall program, in a neutral fashion. Keep updated lists of good D sites. Visit them regularly, as observer only. Sort the wheat from the chaff (TuD is a great site with pretty credible people; we all know about some of the sites on the opposite end of the spectrum). Encourage patients to join a D community, participate, and learn.
For various good reasons, doctors can't prescribe treatment approaches without solid data from well-designed studies that control for confounding factors. However, they need to come around to recognizing much more credibility and utility in the larger D community and our ability to help each other improve our management.
The problem with following health-related social media is that 99% of it is the medical equivalent of Kim Kardashian.
The migration to Tweets, FB and Instagram etc from Forums has made it almost impossible to conduct substantive discussions. I had tried to do that with a FaceBook group but gave up. Comment streams made it obvious no one was even following the links to the subject being discussed. Half the posts were people spamming miracle cures most of the rest was just people chit chatting in one and two sentence bursts that carried no information at all.
But for those of us who live online, as I have since the days of Compuserve, it is sometimes something of a shock to realize that most people don't know that there are forums or that they could join them and learn about diabetes (or anything else.) I know a bunch of people in real life with diabetes, none of whom has ever read a book about it, gone online to look something up, or done anything but whatever their family doctor has told them to do.
I'm finding it kinda funny the way that investors intersted in Afrezza are assuming that the people posting here are typical of the diabetes community at large. If only!
I remember one doctor at a prestigious medical teaching university roll her eyes when I mentioned finding medical info online. I had to immediately tell her that I am a discriminating consumer of information and that I always consider the source when it comes to important medical decisions. I sometimes think that some doctors reflexively flinch when their dominating role as ultimate purveyors on medical info is challenged.
Jenny - I think the saying that curiosity killed the cat got it backwards. I really think that incuriosity killed the cat.
I never functioned well in any environment that required quick one-liners to stay in the game. I much prefer the longer form of discourse. One where it takes a little thought to respond.
You're right about this forum being misleading to Afrezza investors. They are so hungry for the least little indication of how they should position their portfolios. As people with diabetes, we have much more hanging in the balance.
I agree, we're not very representative of the diabetic population as a whole. Perhaps they see us as influencers of the larger demographic. But if the larger population is weary with earning a living and anesthetized with TV, then I don't think they're eagerly reading what we write.
What have you seen with T2 athletes, especially endurance, like running, soccer, etc where they could be going for hours at a time. If they eat a paleo type diet to build and maintain muscle and try to limit carbs to fuel requirements what happens to their disease state?
I dipped as low as 50 around 2:00 a.m. as I continue to adjust my overnight basal rates. As I've stated before, I've been experiencing fluctuating basal requirements in the 10 p.m. to 2 a.m. segment. Last week I was bumping rates up to push down trending highs in the 150+ range. (Green strip in graph ranges from 65-140 mg/dl.)
I've been doing this drill for the last several months. Bump rates up for trending highs then I get lows like last night. Back off on the rates and things drop in line for a few days or more before trending higher to repeat the pattern. My conclusion is that my metabolism oscillates. I think its the nature of things. I suspect that even healthy metabolisms oscillate about a central tendency.
The bright spot in my low excursion is that it did not bounce back insanely high. For that I'm grateful.
Afrezza doses
I delivered 4 units of Afrezza at 11:30 a.m. for my first meal and followed up with a second dose at 12:16 p.m. I did a correction of 4 units at 3:19 p.m. and you can see the nice gentle downward trend. My evening meal required a 4 unit dose at 5:55 p.m. and I added 4 units at 7:38 p.m. I took a total of five 4-unit Afrezza doses yesterday; the day before it was seven.
I've been using Afrezza at mealtime and now I've added meal follow-up doses. I'm also finding I can confidently correct "highs" as low as the 95-100 range. I continue to use rapid acting analog insulin for my basal needs as well as an extended pump bolus for each meal to cover meal protein and fat.
Numbers
My Dexcom Studio program tells me that my 7-day average has now dropped below 100. I had been in this range before starting Afrezza and I'm happy to return to double-digit averages using Afrezza. My 14-day average is just over 100 and my 30-day average is less than 100. My 7-day time in range (TIR) is 91%, 14-day TIR is 88%, and the one month TIR is 89%.
Yesterday's summary
Time in range (65-140 mg/dl) = 91%
Time hypo (<65 mg/dl) = 9%
Standard Deviation = 17 mg/dl
Average = 89 mg/dl
This is Afrezza day 13. I placed a new Dex sensor last night and will terminate the old site and move the transmitter this morning. The line had been getting a little ragged on its 16th day. It also started to become less accurate. Look at the 2 p.m calibration that was more than 30 points off.
Those are pretty amazing numbers for anyone, to say nothing about for someone with diabetes. I have tested quite a few normal people over the years and most people over 30 seem to be routinely going up to 120 and even 130 mg/dl 1 hour after meals. All the group studies I've seen have shown that to be typical, too.
Thanks, Jenny. It’s always nice to receive positive feedback!
I’ve enjoyed reading your various comments. I was surprised to learn your investing knowledge. You have enhanced my understanding of diabetes and provided important context relating to the Afrezza introduction.
Dave, Thanks for the response and humor! Life is good. These kind of days are the perfect inoculation against burnout and depression. It gives me a glimpse of what life would be like without diabetes.
Afrezza is performing well but I’m reminded that I did have days like this before Afrezza. Afrezza has simplified my dosing and it’s thrilling to shoot down trending highs at light speed. Fits in with my impatience. And it does it without the a punishing low reaction common with many RAA insulin corrections.
My mom left me a bunch of stocks and funds when she died some years ago, and they had been very poorly invested by a financial advisor she had trusted too much who had invested them in ways I knew were really dangerous, so I had to do some serious self-education to figure out what to do with them. I have a business background as I was a business writer long before I became a diabetes writer. Our family has several small businesses and I do the accounting for them, including one that is a manufacturing company. So I have enough of an accounting background to be able to think some of this stuff through. And I have a really good grasp of the difference between having a wonderful product and having a profitable business. Sadly, the two don't necessarily go together.
Your background is diverse and it's interesting to see how you've developed your skills, interests and career.
On a separate topic, I'm a bit put-off when the "thread police" snipe about being off-topic. It's these off-topic remarks that can often branch into some especially germane diabetes topics. Human conversation is organic and I like digression provided that it doesn't completely hi-jack the original poster's thread.
difference between having a wonderful product and having a profitable business. Sadly, the two don't necessarily go together.
In fact, very rarely.
As much as people slag on marketing, it's almost always a critical part of making a product successful. A great product that no one knows about, well, really doesn't exist.
None of this is to excuse sleazy marketing tactics, which are ubiquitous. The situation is very much like that apocryphal saying attributed to Winston Churcill, "Democracy is the worst form of government, with the exception of all others." Well, "marketing is the worst way to inform people of a product..."
