Gotta Start Somewhere

I've never kept a blog or a diary or anything like that, so I don't know what is typical or normal. I guess the best place to start is at the beginning, so here goes -- an abbreviated story of my life with diabetes. Post-diagnosis, that is; the previous life isn't really pertinent.

I was diagnosed T2 at age 45. Assuming that I was diabetic for some time before diagnosis, which seems pretty probable, that makes me diabetic for most of the past 20 years.

For a long time I controlled it -- carelessly and in a casual, mediocre way -- with just glyburide and exercise. Of course, as time passed, the required dose crept upwards until it got to be three or four times what I began with. This happened over a period of years. About 2 or 3 years ago my doctor started me on Metformin too (not the same doctor I started with; we had moved across country in the meantime).

It's the same old story -- I was paying casual attention to diet but not really managing it conscientiously; I was monitoring once in a while but not consistently; and control was getting ever-so-gradually more difficult.

A while back I read a book written by a Naturopath who claimed that he could control T2 with diet, exercise, and supplements. I followed the advice in the book and got some minor improvement, but nothing like what I hoped for.

At about this time I went to see my wife's Naturopath, mostly just to get a second opinion and some fine tuning of the supplements I was taking. She only found one or two things to tweak, but she also told me to read Bernstein's book. I confessed that it had been sitting on my shelf gathering dust for some time. She said, "take it down and read it!" So I did. The best advice I've ever gotten.

Sometimes you just have to be in the right place in your life to hear a message clearly. I must have been, because that book lit a fire under me. Bernstein's credo is that "diabetics are entitled to normal blood sugar," and he is living proof that it can be done. He was diagnosed T1 in 1946. He is now pushing 80 in excellent health with normal blood sugar -- all in all, someone worth listening to.

That's enough for this first installment. Next time I'll describe what I am doing to get this disease under control -- real control -- once and for all. And, since the journey is really just beginning, I'll keep this updated as I go along.

9 JUNE 2012

Thanks for the blog David! Bernstein really is an eye-opener. Glad you're taking care of yourself ;)

Continuing the back story . . .

Ever since the dx (about 17 years), my A1c has hovered in the mid to high sixes. A couple of times it crept into the low sevens, but mostly it's stayed in the general vicinity of 6.5. Now some folks in my local support group would be thrilled to have those numbers, so I realize they're not terrible -- but they're not very good, either, and they're certainly not where I want them to be. (To say that something is "not bad" is not to say it's "good"!)

Up till now I seem to have avoided any noticeable complications, but control has been getting gradually more and more difficult with the passage of time; not an atypical experience at all. For the past three years or so my doctor had me on metformin, glyburide, and simvastatin. So, no serious problems (yet), but the long term picture wasn't encouraging.

Earlier this year I "discovered" Bernstein. I put that word in quotes because I had known about his book for a long time, even had a copy on my shelf gathering dust. A few months ago my Naturopath told me in no uncertain terms to take the book down and read it. What I actually did was order a new copy, because the one
I had was the 2nd edition and the 4th is now current. When the new one got here, I really did read it. Still am, actually, because one reading isn't anywhere near enough to really understand and retain everything he says.

Anyway, I now eat pretty much the way Bernstein recommends (still doing some fine tuning), and I have dropped the glyburide and the statin. My A1C is slowly inching down, and the lipids have improved so much it's almost a joke. Total cholesterol is now 128 and the other numbers are equally good, so bye bye statin . . . which is great because statins are really bad news. All drugs have side effects, of course, but statins have the ability to cause nearly as much mischief as they prevent. I'm glad to be rid of the stuff.

The A1c still isn't down where it ought to be, though it's better than it was. But the thing about A1c is that it's an average. Averages are useful, but they don't tell a complete story. An average, by definition, conceals the highs and lows; and the highs and lows are terribly important to a diabetic.

For the past month or so I have been monitoring eight times a day: fasting, pre and post prandial, and bedtime. Averaging the numbers for each event, the daily pattern looks like this:

Fasting 88
Pre breakfast 103
Post breakfast 119
Pre lunch 116
Post lunch 121
Pre dinner 118
Post dinner 145
Bedtime 107

(I just now checked the first three numbers for today, and they are 86, 102, and 117 -- right smack in the pattern.)

So, I'm seeing improvement, but not enough. Things are certainly looking up, but there's still a long way to go.

Next: What I Intend To Do About it

10 June 2012

Part 3 . . .

As mentioned earlier, for some time now I have been eating Bernstein's way, i.e., low carb, with very frequent monitoring. My numbers are relatively stable and pretty much follow the pattern shown above. So, I've come to the inescapable conclusion that if I am ever to have normal blood sugar, it's going to require some insulin.

I had this conversation with my doctor and he is willing to go along; partly because he is open minded enough to freely admit that he doesn't know all the answers, and, I suspect, partly because he can see how serious I am about achieving tight control and how thoroughly I am doing my homework. (I plotted the averages shown above on a chart and took it to my last appointment. I don't think he has very many patients who do that!)

He ordered some tests, mostly the usual suspects (A1c, liver function, lipids, etc.) and I requested a few of my own (Vitamin D and thyroid function to name a couple). I'll have the blood drawn tomorrow morning after fasting and once we get the results we'll meet again to discuss starting insulin therapy.

He also wants me to see a diabetes educator to learn the mechanics of insulin use (actually I think I know most of them already, but there's no such thing as "too much" knowledge), so I'll be seeing her the day after tomorrow.

My plan is to begin with a basal or long-term insulin, probably Levemir. I'll start small and inch upward, monitoring as I go, until I reach a point of equilibrium without any hypo episodes. Then we'll let that settle and stabilize for a while before deciding whether to add boluses to cover means. Slow and gradual, or, to use one of Bernstein's favorite phrases, "the law of small numbers."

As an off-topic aside, writing this down in this way is an interesting experience. As I mentioned in the beginning, I've never kept a diary or journal or blog or anything like that. Writing this stuff down and seeing it in black and while turns out to be very useful in helping to clarify my thought process, whether anyone else ever reads it or not. How about that?

Next: Test results and next steps

11 JUNE 2012

I am very glad you are here David. You have a clear and concise way of writing that I can really related to-I am a Type 1-but it is really all the same and we are in it together. I look forward to learning more about you and hearing about your experience.

Thanks very much for the compliments. I'm glad that sharing where I am at is useful, or at least interesting. That's what this kind of networking is for.

Hi David, I agree with woodfairy. I also enjoyed your conversation on the chat (guess I was just evesdropping!), but I don't type/think fast enough to get in on it. Maybe next time!

Meeting with the educator today to learn the mechanics of insulin use. At least, that's what I'm going in for; she may have her own agenda. :)

Waiting for results from yesterday's tests.

13 June 2012

They usually do-but I feel sure you can steer the conversation in the direction you need-Hope those results are good. Let us know how it goes.

13 June 2012

Well, my luck seems to be holding. I got a diabetes educator with an open mind who was willing to listen and work with me instead of trying to force her own preset agenda. She had even heard good things about Dr. B's book but hadn't read it. I showed her my copy and opened it to a few places that I knew would get her attention. She says she's going to get the new edition and read it! How about that???

How about that?? I knew you could handle it...Sounds like you are wll on your way.

or well on your way--anyway-you're doing great! LOL

13 June 2012 20.10

Got the results from yesterday's tests. Lipids good, thyroid good, A1C up some, Vitamin D definitely too low. Time to up the the amount of D3 supplement and definitely time for insulin. Well, no surprise there. Seeing the doctor next week and should get started then.

14 June 2012

This journey is all about education, and Dr. B almost always has the answers.

I've been giving a lot of thought to the question of how to start insulin therapy. My first impulse was, begin with basal, get that properly adjusted and stable, and then determine whether boluses are needed in addition.

Wrong! That's making a whole series of assumptions without evidence; it's correct for some people but not others. And even if it I'm one of them, should I inject in the morning, or at night? Depends on the pattern. If fasting numbers are higher than bedtime, i.e., BG climbs during the night, then definitely inject at night. But that's not my pattern. I have very good to excellent fasting numbers, but then my BG climbs inexorably through the day.

So, back to Dr. B again, and here's what he says. For a pattern like mine, the first thing that needs to happen is to determine whether the rise happens by itself, or is due to meals. Either way, it's necessary to measure the rise to determine an appropriate dosage. And the only way to know any of this is to run a controlled test by skipping breakfast and lunch and testing throughout the day to see what happens. So that's what I need to do before proceeding any further.

14 June 2012

Footnote to the last post: He also says, "It's very unusual, by the way, for fasting blood sugars to rise during the day if you don't require insulin at bedtime, usually to compensate for the dawn phenomenon." He then goes on to describe the test experiment you should do to find out.

David, it's been fascinating watching your thinking process through all this - thanks for sharing it, and keep up the experimenting!

15 June 2012

WOW. Today was a real eye opener.

As mentioned earlier, I needed to do a controlled test to determine my basal behavior. So today (per Bernstein) I got up, took my usual morning metformin, and fasted all the way till dinner. Nothing but water. Tested every hour and guess what? Without food, I stayed in the 80s almost the entire day. I may not need basal insulin at all; just some Regular or Novolog to cover those terrible meal spikes. Seeing the doc Tuesday morning. Should be very interesting.

16 June 2012 12.11

Always learning . . . This week's fasting numbers, from Sunday thru Friday:

86 74 93 81 82 82

Skipped exercise yesterday, and voila: today it was 112. Trying to pin down BG is like trying to herd cats.

For those new to this blog, don't be too impressed by those numbers. The day nearly always starts out well (as long as I do exercise), but by evening I'll be up to 150 or more.

The journey continues . . .

Haven't updated this for a few days. Here is my current thinking.

Basal at bedtime isn't the answer. Since my morning numbers typically are in the 80s, evening insulin would increase, by some unknown amount, the risk of an overnight low. So then I would have to eat a bedtime snack to counteract that, and now we're into Rube Goldberg territory -- complexity for complexity's sake, aka a solution in search of a problem. Seems to me this would also implicitly violate Dr. Bernstein's "Laws of Small Numbers."

So that leaves the possibility of basal in the morning. But since the long-acting insulins take several hours to reach operating strength, I would either have to wait 2 or 3 hours to eat breakfast -- which ain't gonna happen -- or else still be dealing with the same old spike, though (possibly) with a slightly shorter recovery time.

So I am inclined to begin with carefully calculated boluses, on the low side, monitor very closely, and see where that goes.

So much for background.

Met with the doc today and showed him my charts and graphs. We're agreed on the initial strategy. First I need to eat a calibrated amount of carb after a fast and monitor closely to determine exactly how much my blood sugar rises per gram of carb. Then I need to do it again, this time with a bolus of 1/2 unit, and monitor to see how much, and how fast, it comes down.

That will give me the two yardsticks I need to begin calculating appropriate boluses for meals. I will begin with less than the calculated dose (probably half), and creep up slowly until the balance point is reached.

I will monitor it closely for the first little while, then continue checking it in detail occasionally -- every week or two, to make adjustments as needed.

We also agree that I will probably be dealing with VERY small doses. I'm going to have the pharmacy dilute the insulin 2:1 to make it easier to control the amounts with precision.

Doc also agrees that I may not need to do this for every meal, or forever. Since I still have significant beta cell function, one or two boluses a day may give my pancreas enough rest to allow it to handle what's left. Another possibility is that doing this for long enough may allow it to recover sufficiently to handle the low carb diet I now follow on its own. Or not. Time will tell.

21 June 2012

Accumulating supplies. Got the insulin, had to order a Glucagon kit; they'll call when it comes in. Had to order syringes online, nobody local had the ones I wanted (31g, .3 cc, 8mm, half unit markings). Waiting for them to show up.

One really irritating thing: doc and I agree that I will be using very tiny dosages, at least in the early stages and probably for a long time. So I want to have the insulin diluted to make it easier to draw precise amounts. We live in the middle of a valley that is mostly very rich farm country and there is only one compounding pharmacy within an hour of here, so I went to them.

Turns out that someone -- Fed or State, don't know which and it doesn't matter -- has recently tightened the rules and now insist that the pharmacist use a sterile chamber and a bunch of special equipment that didn't used to be required. So they no longer do it. I'm going to have to get the supplies and do it myself. Thank God for Bernstein.

Do I sound annoyed? Gee, can't imagine why . . .