Monday, November 28, 2011

The A1c as a Diagnostic Tool

Although the medical establishment is increasingly leaning toward using it, the A1c is a LOUSY test for diagnosis. It can vary a lot among different people, because some people glycate more and some glycate less. When I was diagnosable by current standards, with FBGs of 138 and 131 three months apart, my A1c was a glorious 4.8. Even when I was miserably symptomatic, and the docs could no longer deny the diagnosis, I had a 7.1, which would, now, be diagnosable (the cutoff is 6.5), but did not reflect how very sick I was. And the top-off is that when I was near death from a coma last year, my A1c was 10.7, which is supposed to equate to an average BG of about 250. NO FRICKIN' WAY! I was actually running between 400 and 600 for MONTHS before I finally collapsed.

It's clear from these results that I'm a low glycator. Maybe being a low glycator means I'm resistant to complications, too (I HOPE), but living with constant thirst, constant hunger, and needing to pee all the time is NOT quality of life. And I have not read any evidence that I actually AM resistant to complications, so why take the chance? I'm aiming for an A1c in the 5's, even though my PCP's APN told me that below 6 is dangerous for us older people. I know my body better than she does.

Then, on the other hand, there are high glycators, who do their darndest, and still can't get below that magic 7.0. Again, I don't know if they are more prone to complications (and again, I HOPE not!), but in NO way should they compare themselves to me. It's not fair, and it only makes them feel bad. And in my case, if I didn't know better, it could lead to undue complacency. Neither one is a good place to be.

So, having no voice, there is nothing I can do about it, but seems to me like if there is ANY suspicion of diabetes in the family, especially Type 2, then a person should INSIST on an Oral Glucose Tolerance Test -- that's the only REAL way to know if you have disordered glucose metabolism. Yes, it's more of a hassle for both the doc and the patient, but it's better to know the truth early. No one WANTS to have diabetes, but if you do, you do, and it's better to learn to take care of yourself BEFORE those complications set in!

Sunday, November 27, 2011

Thoughts about Bernstein

Seems like most diabetics who are serious about their control know about Dr. Richard K. Bernstein's books on diabetes management.

Bernstein demands a high degree of self-discipline and determination. He, himself, has had good success with a very low-carb diet, and has plenty of anecdotes about other people, both Types 1 and 2, who have also done well.

But I still don't know of any studies that have actually used a REAL low-carb diet (i.e 30g a day, as Bernstein calls for) in comparison with a low-fat diet for any significant period of time, and that's what the medical field is really waiting for. They are very cautious about accepting new practices without standard scientific evidence (yes, I know Bernstein isn't new, but he is to them). If anyone knows of such studies, it would be worth calling the attention of professional organizations to them.

The other thing is, some people feel they really CAN'T give up their carbs. It's a pleasure issue to them, and in a way, it's like smoking -- current gratification outweighs distant harm. Also, some people have reported success with McDougall -- if it works for them, great. I'm convinced that there are different types of metabolism in humans, and what works for one may not work for another. It would be nice to see research on defining those differences, so that dietitians could work, not only with a person's food preferences, but also with the way their metabolism functions.

As for me, I'm a picky eater, and I can't go with Bernstein all the way, but I've had some good success with a modified approach. My food palette is relatively limited (but NOT extreme, like Anderson Cooper!), but I'm pretty happy with mostly the same foods every day. I know I'm light on the veggies and meat, and I do eat cottage cheese, yogurt and a little milk, so my total daily carb intake is closer to 60 than to 30, but my weight is at a healthy place (BMI 24.1), my lab results are excellent (totally normal lipids, and an A1c of 5.8), and I feel good.

So I guess I'm trying to say there IS wiggle room, and people have to come to their own accommodation of what they are and aren't willing to do, and what risks they are willing to take. Humans are complex animals, and one size does not fit all.

Saturday, November 26, 2011

The Terminology Battle

I'm getting more and more anti-type terminology. While Type 1 and LADA are pretty clearly defined, Type 2 is just a garbage-can diagnosis, because there are SO many things that can go out of whack to cause what appears to be "classical" Type 2, and one person's treatment needs may be very different from another's. 

And I just read an article about diabetes in Africa (which also occurs in other tropical countries) that is NOT Type 2, nor is it type 1b, although that does occur. They are calling it Type 3 (sorry, caretakers, you slot is being occupied! And not only that, some are now calling Alzheimer's Type 3, too. So WHY am I anti-type terminology???), and it is related to malnutrition, and not insulin resistance (there goes the Type 2 criteria), and occurs often, but not always in children. If the child's nutrition status improves, and there is no permanent damage to the pancreas, it can go away (there goes the Type 1 criteria). Personally, I would rather see diabetes classified by cause: autoimmune diabetes, insulinopenic diabetes, insulin-resistant diabetes, surgical-diabetes, malnutrition-diabetes, PCOS diabetes, Cystic Fibrosis diabetes, whoa, I've already described 7 types! If diabetes were described in this way, it would at least give docs a clue as to how to treat -- as an insulinopenic diabetic, I don't want docs harping on oral drugs, which I'm afraid will happen if I have to switch docs when I go on Medicare. 

Don't you think it's time to stop oversimplifying diabetes, and recognizing it for the vast array of disorders it actually represents, and start concentrating on identifying and treating people properly?

Friday, November 25, 2011

How to enjoy Thanksgiving!

OK, first revelation is that I'm not perfect. Second revelation is, guess what! I have diabetes! Third revelation is that every once in a while, it's really WORTH it! I went out with friends, and had a filet mignon (my favorite; I don't really like turkey or ham), a salad, about half a baked potato, and CHOCOLATE DECADENCE for dessert. That means a small piece of warm chocolate cake and a scoop of vanilla ice cream drizzled with chocolate sauce and whipped cream. It's a LOT more than I usually eat, and my stomach was full for about 8 hours afterward. I took a dual wave bolus, but for me, the insulin only lasts about 3 hours, and when the square part just dribbles out little bits, it's really not enough to knock down those highs. I really do need to figure out a way to deal with pigouts. Not that I do them very often, but once in a while.....

Monday, November 21, 2011

Hospital/nursing home hell

For those of you that don't already know the story (everyone else, bear with me! :-)  )

At the end of August, 2010, after a couple of months of climbing BGs, which I was unable to control, I saw my endo. My fasting BG was 302, A1c 10.7 (really high for me), liver enzymes in the 100′s (normal is less than 40) and I was suffering increasing mental confusion, and blackouts, which I was unaware of. He did nothing; just sent me home.

6 days later, I didn’t show up at a picnic I was supposed to attend, and my friends came looking for me, and found me near comatose. The last thing I remember is them calling my name from outside the door. Good thing I leave my door unlocked, because they came in, found me, and somehow got me into the car and to the emergency room. The ER DID save my life, after testing me for drunkenness, drugs and dementia — the wrong 3 D’s. All my systems were out of whack, and I was in acute kidney failure.

So I was admitted, and remember nothing for a day and a half. According to the CDE on the case, they took a look at me — age 62, and decided I was a Type 2, and started me on Type 2 protocols. Which meant insulin on a sliding scale, only to correct highs, but no basal and no meal coverage. And then, couldn’t figure out why my BGs were going up instead of down. The reason for the Type 2 protocols is that they expect the patient’s own body to bring down postprandial highs, which is often (but not always) the case in Type 2′s. So the CDE fought with them to get them to use Type 1 protocols on me. Whereupon, my BGs started to come down.

Then, because I was no longer acute, they sent me to a rehabilitation hospital AKA Alzheimer’s home, which assured them that they knew how to take care of diabetics. Ha! I arrived there on a Friday night, and the hospitalist was off until Monday, and somehow the Type 1 orders didn’t accompany me. So back to the no insulin except for corrections, and going up into the 400′s after meals (and I was eating only protein, because I knew that carbs would just blow me sky higher than I already was), and they just left me sitting there with miserable highs for hours, because it wasn’t time for insulin yet. And I couldn’t corner the hospitalist until Monday, so I relapsed back to the place where I started, with confusion, hallucinations and blackouts. Worried about going low? HARDLY!!!

Finally, I got to the hospitalist, and convinced him I needed a basal, and boluses before meals, and he put me on fixed doses — wouldn’t let me take control for myself — I’m sure he was used to dealing with passive, demented patients. So I ate as little as possible, and slowly, slowly, my BGs started to come down. But I was there for THREE frickin’ weeks (plus the week in the acute care hospital), when, if I had had proper treatment to begin with, it should have taken no more than a week to recover sufficiently to go home. Fun with spending unnecessary money, and Alzheimer’s patients are SO much fun to spend all your time with.

As soon as I got home, I found myself a new endo (Type 1 himself), who immediately figured out that my insulin needs had changed radically, and put me back on my pump. I have since gotten things back to normal. But I am terrified to ever go in the hospital again, even though I really needed it at that time.

Side note: the sliding scale worked for me, once I was getting basal and bolus insulin, because the standard rule was 1u of insulin to lower BG by 50 mg/dl. A friend of mine, who has Type 2, was in a nursing home, and they used the same scale with her. But the difference is that she is very insulin-resistant, and needed more like 10u to lower her BG by 50 mg/dl. I can't understand why hospitals don't understand that diabetes, of either type, is not a one-size-fits-all disease!

Sunday, November 20, 2011


I've been thinking about the JDRF ad, that states that 1 in 20 Type 1 diabetics will die of hypoglycemia. I'm not into arguing statistics, but it got me thinking about diabetes awareness.

So much of what we see in the media falls into 2 stories. The first, well-intended and more common, is that Type 2's caused their own diabetes by overeating and being fat couch potatoes, and that they could reverse it if they'd only stop eating the Twinkies, and get off the couch. This is not only unfair, damaging and depressing to Type 2's, who simply CANNOT be generalized to this picture, but it also creates stigma that crosses over to Type 1's, who, being a small minority of diabetics, get lots of well-meaning but totally irrelevant feedback about their diabetes.

But the second story, also well-intended, bothers me more. That is, Type 1 diabetics are super-achievers, and can do anything anyone else can, with no mention of the struggle and self-discipline that it takes even to live a "normal" life, let alone a super-star life. But we are constantly regaled by stories such as those of Dr. Natalie Strand, who won that race (although she couldn't possibly have done it without the life-saving assistance of her partner), Charlie Kimball, the race-car driver, Nick Jonas, Gary Hall, etc. But these people are the exception, not the rule.

My reaction to both these stories is that they're too Cinderella-ish (eat right, lose weight if you have to, and exercise, and you, too, can marry the prince!!), and not Little Match Girl enough (she died trying). So, even though I viscerally didn't like the JDRF ad, I do know what they were trying to do. There are those that lose the diabetes lottery (and that includes BOTH types), but they remain vague, not translated into the experiences of real people. And no one seems to notice how much work it takes just to live an ordinary life, day to day with diabetes, not to speak of how much harder it is for people who DO develop complications. No wonder diabetes doesn't get the support and funding that breast cancer and AIDS do!

Saturday, November 19, 2011

Osteopenia, Osteoporosis and Diabetes

Well, I just had a DXA bone scan today, which they recommend every 2 years for all men over 70 and women over 65, but younger, if you have risk factors. And I found out that Type 1 in particular is considered a risk factor. I'm 63, but I guess I count as having a risk factor.

Turned out that I have osteopenia (low bone mineral density, but not as low as in osteoporosis) in the femurs, but not in the spine. That surprised me, because I haven't had diabetes as long as some (It started at age 43 and I was formally diagnosed at 45), and osteoporosis doesn't run in my family. :-(

The risk factors include normal to low BMI, thin bone structure, smoking, auto-immune diseases, excessive drinking, not enough calcium and vitamin D in bone-forming years, family history, history of anorexia (diabulimia!) and inactivity. I do have thin bone structure, autoimmune diseases, and (ashamedly!) inactivity.

So there is definite evidence that women (but also men) with Type 1 are at increased risk, and osteopenia is a risk factor for osteoporosis. One article said that 50% of Caucasian women will break a bone at some point in their lives.

But the really surprising fact is that, although Type 2 women tend to have INCREASED bone mineral density, at least partly attributable to the fact that their bones get more weight-bearing exercise, they are also at increased risk of fractures. And no one knows why.

I also read up on treatment, and there is no general consensus there. On the one hand, taking drugs like bisphosphonates and other drugs could actually increase bone mass to some extent, but in osteopenia, the person might never experience a fracture anyway, and why take a drug that may not be needed? Osteoporosis, being more severe, with a higher risk of fracture is another story, but again, the question is why wait until you are at great risk?

So I'm going to continue reading up about it, and going to delay making any kind of decision until I have a chance to talk with both my PCP's APN, and my Endo's APN -- I'm taking enough drugs as it is, and since all the available drugs have unpleasant side effects, I'm not going to rush into anything. But I would be interested in any insight any of you may have! :-)