A Visit to Lourdes?

I am feeling better and better on Januvia, to the point where it's getting a bit spooky.

I measured my fasting bg this morning (87 mg/dl which is about as low as it gets)and looked at my log to see what it had been yesterday, only to notice that I hadn't tested at all the whole day! This blew me away, because I've been testing at least 2 or 3 times a day since 1998--even when my insurance wouldn't pay for strips. I never had to remember to test, the way my blood sugar makes me feel most of the time would get me testing, plus the uncertainty of what was going on.

But I'm not experiencing uncertainty of late. My bg is pretty much what I expect it to be all the time and the very highest reading I've seen, when I tested the same food item that had put me over 200 mg/dl at the lab last year, put me to 134 at 1 hour and 87 by 2 1/2 hours--and that's with 55 grams of carb--a lot more carbs than I ever eat normally.

So for the first time since diagnosis, I'm Not thinking about every gram of carbs I eat and worrying about how it will make me feel or what it will do to my blood sugar. Oh, and did I mention I'm eating what is, for me, a normal diet? (30 grams per meal mostly, maybe a bit higher here and there.) Even more interesting, I keep forgetting to eat. Food has just receded to the background of my mind.

This, folks, is how I define "cured." It's blowing my mind, because I never expected this to happen for me.

The only remaining niggling concern is wondering about what else this stuff is doing to my body. Looking at every other drug approved as quickly as Januvia, it's almost certain there will be an ugly downside revealed after it's been in use for a decade or long enough for the real side effects to appear.

Do I care? Abstractly, yes, but to feel like a normal person again and put eating in the back of my mind for once, well, it may be worth just about anything that comes with it. I'm old enough that another decade of high quality life is about all I can expect and having seen my parents live to be very old, that has become a fate I dread.

=====

In other news, I'm still doing pretty good in the
Simon & Schuster/Borders First Chapters Competition on Gather.com though not as well as before, partially because it looks like friends of some authors are going around giving competitors the lowest score possible to drop their ranking. Whatever you do, don't do that! It's contemptible and lacking in respect for the other authors who have worked as hard as they have to complete a novel. The stories should be judged on their merits. That said, if you want to help me out, go read the chapter and rate it if you like it.

I've put together a web site with the link to voting and a bit more information about the novel here: http://www.phlaunt.com/DarkLordsHeir

The voting window for my entry closes either Tuesday Night or Weds afternoon (it's not entirely clear which.) Each entry gets two weeks though they will be displaying new entries until the middle of March. So time is getting short!

And to those of you who have read and voted (especially those who have told me you like the chapter) a huge Thank You!!!!

Tied for Fourth, so far--and some diabetes stuff, too

My novel was one of about 275 entered into the Gather.com First Chapters contest sponsored by Simon & Schuster and Borders--the one the New York Times called an "American Idol" for writers, and after 4 days, I'm tied for fourth place!

I'm psyched. If you haven't checked out my entry, the link is:

http://www.gather.com/viewArticle.jsp?articleId=281474976887960


Please rate it if you like it. One is low and ten is high on the rating scale.

BTW, in regard to some of the comments you'll find posted, the contest was stated to be looking for "Commercial fiction." Unfortunately quite a few of the people commenting seem to think that the fact that my piece is commercial fiction--a historical romance--is a detriment. Do keep the goal in mind while reading. Simon & Schuster has a serious presence in Romance publishing. The only "literary fiction" they publish, according to their web site is Stephen King and Jennifer Wiener, the author of Good in Bed, a fact that seems to have eluded 99% of those submitting atmospheric elegies for their lost youth as their contest entry.

Oh, and if you wonder about what this has to do with diabetes, the answer is nothing, but I'm still getting near normal numbers taking Januvia and eating about 30 grams of carbs per meal. Not quite as good as with insulin, but so much easier and I'm not going up and down all day blood sugar-wise which is delightfully relaxing. With the values I'm seeing I'd expect to have a very similar A1c as before--mid 5%, but I don't have to test anywhere near as much because there's no threat of lows and my bgs are much, much more predictable.

The only side effect now is a slight bit of edema and occasional attacks of abdominal gas, but nothing I can't live with.

Something Entirely Different

As some of you may know, in my spare time, when not contemplating the intricacies of diabetes and writing software, I write novels. My most recent novel was just entered in the Gather.com novel writing contest. It's an unconventional historical romance set in the Regency period with a darker tone than what you usually find in such tales and a whiff of the paranormal. If you'd like to read it, the first chapter is at

http://www.gather.com/viewArticle.jsp?articleId=281474976887960

If you like it, join Gather Join at THIS LINK
(a matter of just giving them an email address) and vote. The winner gets published. Yes, I know the chances of winning are right up there with those of curing diabetes with a magic pill, but who knows!

Januvia Revisited - Results of my Own Trial of This New Drug

Januvia is a new drug which works on the incretin hormone system in a different way from Byetta. While Byetta provides a synthetic version of GLP-1, Januvia allows GLP-1 secreted by your body naturally to rise to higher than normal levels by inhibiting the action of DPP-4, an enzyme which removes GLP-1 and another hormone, GIP, from the body.

I was initially skeptical that Januvia was worth taking, given its very high expense ($5 a pill) and the study data that the manufacturer supplied with the press releases which made it sound like it produced very little improvement in blood sugar overall--the study data showed that in people whose A1c was 8%, Januvia decreased the A1c by a measly .6%--bringing it to a level significantly higher than even the dangerously high 7% recommended by the ADA. Added to Metformin or Avandia, the studies found Januvia got only about half of patients near 7%.

But in reading initial reports online from people trying Januvia I noticed an interesting pattern. The drug either worked very well for them or not at all. This made me rethink the statistics in the Prescribing Information and wonder if that .6% decrease in A1c was the result of averaging the results of many people who experienced a 0% decrease in A1c with a few who achieved a much larger decrease.

Having noticed how many people with health histories similar to my own were doing extremely well on Byetta, I'd been wanting to try an incretin hormone drug, but had avoided Byetta because of the possibility of developing antibodies and a disinclination to be nauseated. I got some samples of Januvia from my endocrinologist early in January and started taking it. I've been on it 11 days now.

Initial results have been extremely impressive. I stopped taking my low dose insulin and an getting almost the same normal blood sugars with Januvia as I had been with low dose insulin--without having to worry about hypos. I find I need to eat some carbohydrate with each meal to stimulate the release of insulin while taking Januvia, but once the insulin is secreted, since it is being secreted in a normal physiological way it works quickly. I found myself at 99 mg/dl (5.5 mmol/L) one hour after eating 30 grams of pastry several times and was in the very normal 80s an hour later!

I found that in my body a carb intake of 20-30 grams was handled very well by Januvia. Above that level it took three hours to get to a fasting level of 85 mg/dl (4.7 mmol/L) not two, so at this level insulin did a better job. But the ease of use of the Januvia, a once a day pill, is a huge plus compared to insulin. Keep in mind when reading this that I have a kind of diabetes where I am not insulin resistant. So tiny doses of supplemental insulin work very well for me.

The main side effect I have noticed so far is a lowered blood pressure which occasionally makes me dizzy. (I am not on any BP meds.) Because the drug is so new and is suppressing a hormone (DPP4) which is used by many other organs in the body, including the immune system, I do have a serious concern about what its long term side effects might be, in particular whether it might promote cancer. DPP4 is also suppressed in melanoma cells and those of other tumors. Rats fed a very high dose of Januvia (60 times the normal amount) did develop liver cancer, though mice did not. This is not trivial and only a lot of time with reveal the impact of DPP4 suppression on people.

Despite my good results on Januvia, it may not be the best choice for most insulin resistant people with Type 2 diabetes. The reports from people who had been getting good results from Byetta whose doctors moved them to Januvia are not encouraging. It does not appear to work for most of them--possibly because they have developed antibodies to their body's own GLP-1, or perhaps because they don't make enough GLP-1 to do the job. Januvia requires that your body be making GLP-1 on its own. I am very insulin sensitive, so Januvia doesn't need to stimulate my body to make much insulin. If you need more insulin, you may not get good results with Januvia.

Also Januvia is being described as being weight-neutral (i.e. not causing weight gain) based on two studies, one of which showed a slight gain of weight in those taking the drug. This might make it a worse choice for many people with Type 2 diabetes than Byetta as Byetta, when it works, causes weight loss.

For the time being, it looks like Byetta would be a much better choice for an incretin hormone-based treatment for Type 2s who need to lose weight, though Januvia might be an ideal drug for normal weight people with non-autoimmune diabetes whose diabetes like mine is characterized by a very high post-meal blood sugar and near normal fasting blood sugars. It might also be a good drug for people with pre-diabetes--if their insurance will pay for it. The cost issue is a tough one since Januvia is so expensive and so new that many plans won't pay for it.

Taking a Break from Online Activity

As much as I've enjoyed interacting with the many people active in the online diabetes community, I've come to the conclusion that it's time for me to rethink how I use my time and energy. My diabetes work online has always been something I do to give back to others, but I need to save more of my energy for earning a living and doing things that involve more face-to-face real time interaction with people.

Much of what I know about diabetes is already available on my web site, What They Don't Tell You About Diabetes. Thanks to Google, the people who need this information are finding it. But after a lot of thought, I've concluded that investing further time in posting on bulletin boards and updating this blog is not making enough of an additional impact to justify the many hours that I've been dedicating to doing it.

I'll continue to respond to emails from the people who visit my site (and this blog) as I have always done, and I may post occasionally here and on various online boards as time goes on. But for now I'm on an "online diet" and will be avoiding online communications for as long as it takes to get other parts of my life up and running again.

It's been fun. . . .now on to what's next . . .

Recovering from Holiday Diet Mayhem

A quick scan of various diabetes support boards shows that people have either stopped posting completely, or they're posting messages along the lines of, "I can't believe I ate the whole thing!"

Yup. It's holiday time again.

Personally, I believe it is dangerous to be too perfect with any diet, because when people are utterly perfect, and never eat a single uncounted gram of carbohydrate, when they eventually DO crash off their diet plan, they tend to go off massively and end up harming their health and their weight. One day off plan won't do terrible things to your health, nor, for that matter, three days But if you're still eating your head off three weeks after Christmas, yes. You are in a world of hurt.

It's long been my belief that if you go off plan every so often you will learn how to get back on track, so you'll be more likely to handle times of excess like the holidays when temptations and the weight of family traditions make it extremely difficult to avoid diabetes-related food craziness.

There isn't any way around it. Unless you are one of those lucky people who have no emotional issues around food and could live happily on Purina People Chow, at times like Christmas, you either don't eat the special foods that have decades worth of warm associations and end up feeling like the Little Match Girl, standing in the cold, peering through the window at the more fortunate people enjoying the glorious family feast. Or you pig out and end up feeling like crap, because your body can't handle the carb-load and then spend the next week hiding from your diabetic friends out of embarrassment--hence the quietness on the diabetes discussion boards.

Fortunately, the official Diet Season starts January 2, and we can all stop thinking about party food until the Diet Season's Official End, which is of course, Super Bowl Sunday. Don't you love the irony of the way the supermarkets fill the "seasonal" shelves with diet food January 2, and then, 3 weeks later, replace them with Cheese filled Cheese Doodles and nacho sauce?

Meanwhile, for those of you who are relatively new to cutting back on carbohydrates, who did over do it on Christmas, here's a page I put together some years ago which helps you understand some of the physiological effects that can make you very hungry and feeling crazy when you try to get back to good dietary control. If you find yourself in a non-stop binge, reading this page may help you get back on track.

Crashing Off Your Low Carb Diet

Me, I'm going on a diet next week, until, of course, Super Bowl Sunday.

The Formulas equating HbA1c to Average Glucose Level Don't Work with Near Normal Blood sugars?

NOTE: Important New Information Added to this post in OCT 2007. Please scroll to bottom to read!

I got my new A1c result yesterday, the first in six months.

It was 5.5%.

During this period, my blood sugars have been significantly better than they had been for years. My fasting blood sugars have dropped about 20 mg/dl and my post-meal values have dropped by about 30 mg/dl. These changes have been measured many times using reference meals with known blood sugar outcomes.

In the past, my A1cs were almost always 5.7%.

The drop in A1c doesn't seem to capture the significant lowering of my blood sugars over this period.

The usual formula to estimate the relationship between A1c and mean plasma glucose was derived from the DCCT study.

That formula is:

Mean Blood Glucose = (A1c * 35.6) - 77.3

Applying this formula, an A1c of 5.5% is supposed to correspond to a mean plasma glucose of 118.5 mg/dl and an A1c of 5.7% is supposed to correspond to a mean plasma glucose of 125.6 mg/dl.

Neither of these values correspond to anything I have ever seen in my testing, and I test a lot and at many different times of day. My 30 day meter average, based on 150 measurements, has ranged between 98 and 103 during this period.

There is another, less cited formula that works better, at least for me. It is called "The Nathan Formula" it is:

Mean Plasma Glucose = (A1c * 33.3) -86

This formula yields a mean plasma glucose value of 97 mg/dl, which comes much closer to what my meter's 30 day average has looked like throughout this period.

Here's a calculator that will give you the Nathan Formula A1c/Mean Plasma Glucose equivalents:
A1c Calculator

However, I think the most important point is this: despite doctors' reliance on A1c it is not a particularly accurate measurement of what your blood sugars have been over the past three months. And not only that, the DCCT formula seem to work a lot better in people with very high blood sugars which is the group from which it was derived than they do those of us with near normal ones.

Here's a study published in the Journal of Family Practice that looked at the evidence connecting observed glucose measurements and A1c.

Does daily monitoring of blood glucose predict hemoglobin A1c levels?

The conclusions of this review include the following statements:

The relationship between HbA1c and blood glucose levels is such that blood glucose levels from the preceding 30 days determine about 50% of the total HbA1c. (10) This relationship may be altered by uremia, intake of vitamins C or E, and conditions that affect erythrocyte turnover. (11)

It remains unclear whether management strategies that focus on minimizing HbA1c levels are optimal for prevention of diabetic complications.

Although HbA1c levels correlate with the risk of some complications, aspects of glycemia not reflected in the HbA1c level, such as the heights of glycemic "excursions" from the mean, may independently affect the risk of complications of diabetes. (12) If so, quantitative analysis of day-to-day blood glucose levels might yield a better estimation of the risk of diabetic complications than HbA1c levels.


So what this means is this. The improvement I've made in my blood sugar by keeping my "excursions" (i.e. post meal values) around 110 instead of 140, is probably a lot more significant, healthwise, than the measily .2% improvement in A1c.

Keep this in mind if your A1c results don't match your observed daily testing results, and trust what you see on your meter not a cheering (or baffling) A1c.

UPDATE OCT 31, 2007

The American Association of Diabetes Glucose Trials has come up with a new and improved equation to relate A1c to mean glucose developed using "hundreds of thousands of readings" and CGMS data.

It is the A1C-Derived Average Glucose (ADAG) formula:

Measured in MMOL/L: Average Glucose = 1.583 * A1c - 2.52

Measured in mg/dl: Average Glucose = (1.583 * A1c - 2.52)*18.05

Using this formula:
4% = 69 mg/dl
5% = 97 mg/dl
6% = 126 mg/dl
7% = 155 mg/dl
8% = 182 mg/dl
9% = 211 mg/dl
10% = 239 mg/dl

In short, 1% of A1c equates to a difference in mean glucose of 29 mg/dl.

UPDATE: 4/23/2008.

I've put together a calculator that will convert A1c and average blood glucose using the new ADAG formula.

You'll find it at http://bloodsugar101.com/A1Ccalc.php