A Newcomer to Type 1 Diabetes Management

What happens if you are suddenly diagnosed with Type 1 diabetes these days? This happened to my son Karl, who is 17 and autistic, this July. He seemed to have a cold, but took a turn for the worse, looking suddenly very thin and tired and with an odd, deep note in his breathing. He couldn't keep fluids down.

We called 911 and he took an ambulance ride into the hospital. En route, they gave intravenous fluids and tested his blood sugar levels. "We don't know how high they are, because the meter only goes up to 500." Yikes!

At the emergency room, it was more IV fluids, followed by IV insulin, which they increased very slowly. His main complaint at this point was thirst, since he was allowed only ice chips because of the nausea. With insulin, he started feeling better as they increased the dose. 

After a couple of days in intensive care, a couple of days in an ordinary hospital room, and meeting with a diabetes educator and a nutritionist, he was released.

There were many good things about the care he received and some not-so-good ones. The good:

• The ambulance crew did all the right things, and his high blood sugar was known long before he even reached the hospital.
• Everyone at Good Samaritan Hospital in Corvallis was cheerful, competent, helpful, and reassuring.
• The hospital recommended and provided the latest and most appropriate insulin and supplies for Karl. More on that later.

The not-so good:

• The doctors told us, "This is Type 1 diabetes, and that means his pancreas is a goner. You may have a brief 'honeymoon period' where it recovers, but it's burn out soon enough and there's nothing you can do." This is nonsense with no basis in actual research; quite the contrary. It's an outdated assumption that's still widely believed by doctors in spite of having been proven false.
• The nutritionist told us, "Karl needs lots of carbohydrates to survive, so aim for 75-90 grams of carbs with every meal." In fact, the body needs no carbohydrates whatever to survive. The body needs fats and proteins (essential fatty acids and essential amino acids) to survive, but there's no such thing as an "essential carbohydrate"! Again, this is based on outdated assumptions that were proven false years ago.

Keeping Karl's pancreas going. If there's some pancreatic function left, the body makes some of its own insulin, and this makes blood-sugar control work one heck of a lot better. This is because the body increases or decreases its insulin production according to the needs of the moments, secreting more insulin if blood sugars rise and less if blood sugars fall. This feedback loop helps keep blood sugars where they ought to be. This is important because every minute your blood sugars are above around 140 mg/dl, your body is being harmed, while levels that are two low can cause you to be unable to think clearly or even cause you to lose consciousness.

 Injected insulin doesn't have a feedback loop, so if you give yourself too much or too little, oh well. Even small mistakes in carb counting or insulin dosage can lead to big swings in blood sugar, unless you have some pancreatic function left, in which case the swings are much, much smaller. So keeping the pancreas going is very important.

In spite of what the doctor said, there are promising, known-safe methods of prolonging the honeymoon period, including the use of nicotinamide (also called niacinamide, one of the forms of the B vitamin niacin), using enough injected insulin that the pancreas isn't constantly exhausted, and keeping blood sugars under control, since high blood sugars actively harm the insulin-producing cells.

Keeping blood-sugar levels under control. So, in addition to vitamin supplements, the goal is to use insulin to keep blood sugar under tight control, keeping it below the danger zone of 140 mg/dl and above. (This is the goal set by the American Association of Clinical Endocrinologists, as opposed to the old-fashioned stance of the American Diabetes Association.)

Tight blood-sugar control is hampered by the fact that you have to match the amount of insulin you take to the amount of carbohydrates you eat, plus the fact that insulin's effect varies from shot to shot, and the carbohydrate values of the foods you eat are not reported with much precision. Nutrition labels can be off by 20% in either direction, for example.

 To take an example from Karl's menu, a kids' chicken strips basket at Shari's restaurant is supposed to have 82 grams of carbs, but this can vary by 20%, or 16 grams either way. The safe range of blood-sugar levels is 70-140. A gram of carbs will raise Karl's blood sugar by 5 points, so if he's at 100 at the start of the meal, if the meal has 16 grams more than advertised, he'll end up at 180, and if it's 16.4 grams less, he'll fall to a disastrously low 20!

What does this mean in practice? It means that eating a meal with 82 grams of carbs is like playing Russian Roulette (and the advice we got from our nutritionist was wrong). But if we dropped the carbs to just 30 (say, with just chicken strips and no fries), a 20% variation is only 6 grams, and if he starts with a blood-sugar level of 100, the variation is only 30 points each way, from a low of 70 to a high of 130. This is within the target range.

So the only way of actually achieving blood-sugar targets is by cutting carbs from the diet. You eat fewer carbs. With every carb you cut, the margin of error goes down and control goes up. Simple, huh? Sometimes I think that the problem with doctors is that they aren't engineers.

Except that some doctors are engineers. I've been reading a wonderful book on blood-sugar control, Dr. Bernstein's Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars, which is by Richard Bernstein, an engineer who became the first diabetic to take blood-sugar measurements multiple times per day, using the then-new blood-sugar meters, which were considered to be laboratory equipment, not home-use devices. The insight he gained from this, and his engineering background in control theory and general problem-solving, allowed him to come up with a treatment plan that really works, reversing his diabetic complications. He entered medical school at the age of 45 so he could become a doctor and share his results directly with patients. His book is very practical and thorough, with both step-by-step procedures and a clear description of the underlying theory. A must-read for anyone with diabetes, or who helps care for someone who has.

 A slimmer volume on much the same topic is Blood Sugar 101: What They Don't Tell You About Diabetes. I recommend that you buy both.

Insulin and equipment. On the other hand, I have nothing but praise for the insulin and equipment the hospital handed out. These days they have what are called "insulin pens," which have an insulin cartridge and replace the old syringes and bottles of insulin. One advantage of insulin pens is that they just don't look like syringes, so if we give Karl an injection in a restaurant, anyone around us with a needle phobia doesn't even recognize what we're doing! The other advantage is that the whole process is simpler when you don't have to mess around with a separate syringe and bottle. 

Karl uses two kinds of insulin: Lantus, which is very long-lasting and provides what's called "basal insulin," the kind your body needs 24/7, and Novolog, a fast-acting insulin that deals with mealtime carbohydrates. 

 Lantus is, in theory, a 24-hour insulin, but if you read the instructions they admit that it's only 14 hours for some people. We started out by giving it to Karl only at bedtime, but his afternoon and evening blood-sugar levels weren't so good, so we now split the dose between breakfast and bedtime, which is a common practice. He gets a total of 7 units of Lantus per day. 

Most people use Novolog in insulin pens that have a one-unit resolution, but the Novopen Junior lets you inject at half-unit increments, which is twice as good! It's marketed mostly for kids, for some reason. I don't know why anyone would use anything else, though. Karl is getting 8-10 units of Novolog per day. 

The needles have gotten almost unbelievably tiny and short, making them safer and pretty much painless. The blood glucose meters are pretty spiffy, too. We're using the Bayer Contour USB model, which lets you download the last zillion or so readings to your computer and look at the trends. The software that comes with the meter is clunky and you will spend some time swearing at it, but it gets the job done. 

 Measuring Pancreatic function. We went out of our way to get a C-Peptide test for Karl after he'd been out of the hospital for a while. This test measures remaining pancreatic function, and Karl's results came back with a surprisingly high reading, showing that his pancreas is still doing quite a bit for him. Long may it last! None of our doctors mentioned this test, but no one minded performing it upon request. 

All my life, I've discovered that, no matter what the industry, industry-standard practices are a strange mixture of brilliance and blindness. The hospital did a wonderful job with Karl, for which we're grateful, and I'm glad that Karen and I are used to doing our own research, because we don't think their advice for home care was of the same high quality. Doctor's advice is a good starting point, but I don't think it's a good idea to stop there.

Originally posted on Robert's other blog at www.plamondon.com