Diabetes: What’s in a Name?

Two hundred years ago, a myriad of diseases were known by a single term: fever. We still use the word as a part of some disease names today – yellow fever, scarlet fever – but more often today the word “fever” is used to describe a symptom: body temperature above the narrow range that is normal for a human being. We have inoculations and other measures to prevent or cure many of the diseases once grouped as “fever,” and if those diseases had not been separated, this could never have happened.

Diabetes melltus, as defined today, is an elevation of blood sugar – more accurately, of blood glucose. Like body temperature, the human body needs a particular amount of sugar in the blood. Too much, and there are all kinds of long-term consequences to blood vessels and all that depend on them – kidneys, wound healing, eyes, the nervous system …. Too little and the brain, which more than any other organ requires glucose as a fuel, shuts down. (I’ve used this as a basis for esper shock in Homecoming and Tourist Trap.)

The body of a healthy person has a number of feedback mechanisms to keep both body temperature and blood glucose within the ranges necessary for life. Blood glucose feeds the cells of the body, but the use of blood glucose by the cells requires a hormone, insulin. If the blood glucose goes too high, the islets of Langerhans in the pancreas pump out more insulin. This allows the cells either to use the glucose for themselves, to store it short-term in muscles and liver, or to store it long-term as fat. If the blood glucose goes too low, glucose is released from the liver or used as fuel by the muscles which have stored it.

When these mechanisms go awry, the result is diabetes. But there are many ways they can go awry. You can treat a fever with aspirin, cold cloths, or ice, but to prevent or cure the fever, you need to know what is causing it. And there are many ways the regulation of blood sugar can go awry.

When I was first diagnosed with diabetes, 42 years ago, there were assumed to be two types of diabetes: juvenile and adult. On age, I fell in the crack. Juvenile diabetes required insulin, which must be injected into the body, and one simply does not get over this type of diabetes. Adult diabetes could often be treated with oral medications or even with diet. Since I did not respond to medication, I was assumed to have juvenile diabetes.

Today we have type 1 (defined as autoimmune destruction of the ability to produce insulin) type 2 (often considered due to overweight and lack of exercise, but there is evidence that fairly thin people can present with type 2) LADA, gestational diabetes (which may disappear immediately after the baby is born but may go on to develop into type 1 or type 2) and even a type that looks like type 1 but clears itself up. Not to mention the fact that the islets of Langerhans can be destroyed or damaged by things other than autoimmunity, such as chemicals or actual removal of or injury to the pancreas.

Why can’t we accept that diabetes is not in itself a disease, any more than fever is, but a symptom of a large number of diseases?

It is true that there are two major intermediate causes of diabetes, which may occur together or separately.

The more common cause, often associated with a modern sedentary lifestyle, is insulin resistance. There is plenty of insulin available, but the cells seem unable to use it to metabolize sugar. In fact, the body may overproduce insulin in an effort to make up for the insulin resistance, ultimately leading to the death of the insulin-producing cells and the need for insulin therapy. But this is an intermediate cause. The chances are that there are several underlying disease states that produce insulin resistance, some of which may be hereditary, dietary, lifestyle or chemicals. But we’re not likely to find them unless we quit lumping all insulin resistance as type 2 diabetes.

The rarer intermediate cause is an inability to produce insulin. If this inability is due to an autoimmune attack on the islets of Langerhans, the result is type 1 diabetes. That of course leaves the cases of insulin-dependent diabetes due to actual injury or destruction of the pancreas by other than autoimmunity, or the inability of the islets to produce insulin for reasons other than their destruction, out of the definition, though as far as treatment goes, they are type 1. Even the autoimmune destruction may have many triggers. Things as far apart as viruses and cows’ milk have been suggested.

Treatment is insulin – first obtained from beef and/or pork pancreases, but now biologically (bacterially) produced using the chemical structure of human insulin. Some insulins further modify this structure to give faster or slower action. Because insulin is a protein which would be destroyed by the digestive system, it must be given under the skin using a hypodermic, an insulin pen or an insulin pump. Without insulin, death can occur within days.

I’ll probably visit this subject again – it’s a favorite rant of mine. Meanwhile, the symptom of diabetes is increasing in frequency worldwide. Why? And which underlying diseases are actually increasing?

Complications of Diabetes

It’s nice to have at least one side effect of diabetes that isn’t a burden.

I refer to the loss of hair, and hence of the annoyance of shaving, on the legs, arms, hands, feet and underarms.

Not that I bothered to shave most of the time anyway, and it’s only a symptom of a much more serious diabetic problem — lack of blood flow to the extremities. In fact, it is probably related to my diabetic retinopathy and some autonomic neuropathy. Like my heart rate not speeding up when I exercise.

So what are the possible complications?

The American Diabetes Association has a daunting list, but the main ones are:

Eye complications. I’m very aware of those!

Diabetes is considered a risk factor equal to having had a previous heart attack for cardiovascular problems.

Kidney disease.

Stroke – again, I’m personally acquainted with that.

Foot problems – a lot of diabetics wind up with amputations.

Gastroparesis – highly variable delay in stomach emptying, which makes it very hard to treat low blood sugar.

So what can you do about it?

Don’t get diabetes is the obvious answer, but what if it’s too late for that?

Try to keep your blood sugar as close to normal as possible. That means checking your blood sugar frequently – probably a minimum of 4 times a day. I average more like 12 myself, even with a continuous monitor. It also means adjusting your insulin to the amount of food you eat. Carbohydrate counting is most accurate, but even then you have to figure out how much insulin you need to offset a given number of grams of carbohydrate. I went for years with a doctor telling me how much insulin to take and adjusting my food to match. He was prescribing too much insulin, and I gained weight.

Exercise helps, too. I have a stationary bicycle and a rowing machine set up in front of the television, and whenever I’m watching and not actually low, I’m exercising.

At least it’s possible to do something about tracking your blood sugar today. When I was diagnosed, 42 years ago, I got an occasional lab test – like every two or three years. And one shot a day of medium-acting insulin. Today we have not only blood glucose meters – all right, they do involve pricking your finger – but insulin pumps and continuous glucose monitors. They’re not perfect by any means, but things have come a long way in 42 years.

Now if the hair loss would just extend to my chin ….

Breast Cancer (Part 2)

As I mentioned last week, my primary concern was that my treatment for breast cancer had as little impact as possible on my diabetic control while having maximum effect on the cancer. I was well aware that chemotherapy would involve stress, and any kind of stress affects blood sugar. So when the oncologist gave me a choice of two types of chemotherapy drugs, I chose the milder but slower regime, 5-FU plus Methotrexate.

It was a mild regime in the sense of minimal side effects, but I had to get an infusion weekly for close to 5 months. And even with this regime I was warned that there was a good chance of nausea, losing my hair or anemia.

Luckily, I could get the infusions in Fairbanks, within driving distance of my home, and between the cancer center and VanTran I had a good chance of getting a ride if I got too sick to drive.

Remember I said that the diabetes actually helped me deal with the breast cancer diagnosis? It wasn’t all psychological. One of the things I have learned in my years of trying to keep my blood sugar under control is that I have to have regular exercise. I’m not much good at walking any more, but I have an exercise bike, a rowing machine and a treadmill all set up facing my television. About the only time I watch TV or a DVD without exercising at the same time is when my blood sugar is dangerously low.

I kept that up throughout the chemotherapy, with at least an hour a day of aerobic exercise. (I have an adult tricycle, too, but I didn’t ride that much the summer I was getting chemo.)

I honestly think that continuing to exercise throughout chemotherapy and radiation treatment had a lot to do with how few side effects I had. It may be that I was simply lucky, that I would have had few side effects from the chemo regardless. I can’t help but believe that some of my generally good health throughout the chemo was due to the fact that I continued regular exercise.

Having the rather large needles inserted into my hand was painful and annoying, especially as they always used the hand on the unoperated side, but I never had to have a shunt. Even my hair, while thinning, stayed on my head. I had to get blood tests before every session, and my white and red cell counts did get low enough I had to get some shots to build my blood back up, but I never really felt sick. I lost some weight I could well afford to lose, though unfortunately it didn’t stay off.

Most of the summer and early fall of 2008 I was driving to the cancer center every week for chemo. I did stretch the space between appointments once, to attend a family reunion. I’m glad I did, as it was my last chance to see two of my aunts, both then in their 90’s, who passed on a few months later.

I’ll talk next week about the radiation therapy.

Note—the Sunday blog would normally be about the genetics of the white splash gene in horses, but February 19 is Writing in the Dark, a writers’ conference held annually here in Fairbanks. Instead of the normal horse genetics, I’ll be blogging on the conference next Sunday. I’ll also encourage attendees to put samples of their writing at the conference up as comments. Our leader and inspiration will be Peggy Shumaker, our state writer laureate, and I’m really looking forward to it.

Breast Cancer (Part 1)

Fairbanks Cancer Center

A breast cancer diagnosis is a downer—no question about that! I think the doctor who had to give me the news that my biopsy was positive was expecting—well—hysteria? Horror at mutilation? Panic at the C-word?

I’ve lived with diabetes for more than 40 years. Of course I was unhappy at the diagnosis, but the prospect of losing a breast worried me far less than the prospect of losing my vision or legs, and I’d lived with both for years. As for fear of cancer, I was already aware that breast cancer, caught early, is one of the most treatable of cancers. And mine was caught early.

Yes, I was worried—I am still worried—about the possibility of recurrence, of metastasis. (I have a mammogram and a follow-up visit with the oncologist a week from now.) But the lump in my breast was caught early, in a regular visit to my doctor’s office. (As a diabetic on an insulin pump, Medicare requires that I see my doctor every three months.) After my doctor found the lump I had what would have been my annual mammogram a couple of months early. The mammogram led to a biopsy, which was positive. Surgery was indicated. (Not that I didn’t wish Roi’s Healing ability was real.)

Because my cancer had been caught early, I had a choice of mastectomy (removal of the affected breast) or lumpectomy followed by radiation therapy. Being lopsided didn’t bother me, but the possibility of surgery affecting the diabetes did. I chose right through to go for the options that might take longer, but would have minimal impact on the diabetes. For surgery, that meant a lumpectomy followed by radiation therapy.

I expected to be miserable after the surgery, but compared to a knee replacement a couple of years earlier it was a breeze. I don’t think I even used the pain prescriptions after the first day or two. I did have a drain, and that was the major annoyance connected with the surgery. I needed to raise my basal insulin for a few days, but aside from that my insulin pump kept my diabetes under control very nicely.

I think my main problem came from the fact that I had two oncologists, one for the radiation therapy and the other for chemotherapy, and they weren’t communicating very well. There was some question as to whether or not I needed chemotherapy, the genetic makeup of my tumor, and which should go first. They finally got it sorted out that chemotherapy should come first.

One thing I should say at this point. Fairbanks Memorial Hospital added a cancer center not too long before I was diagnosed. Before that, I would have needed to go to Anchorage, 350 miles of mountain roads away, for either chemotherapy or radiation therapy. As it was, my therapy was within driving distance of my home.

I’ll get into the post-operative therapy next week. For now, I’ll just say that the diagnosis really woke me up to my own mortality. It was the final push that determined me to go ahead with assisted self-publication for Homecoming. Maybe if I had really kept at it I could have found an agent or a publisher. Certainly the book has garnered some fine reviews and is currently a finalist in one contest. But the cancer diagnosis was the final push.

A few breast cancer links:
Breast Cancer Organization
National Institute of Health
Susan G. Koman Foundation
National Cancer Institute
National Breast Cancer Foundation
Breast Cancer Detection Center of Alaska
Fairbanks Cancer center

Diabetes and Blood Sugar

Blood glucose.

It’s something I have to worry about, as does every diabetic. Too much glucose in the blood, and the circulatory system is affected. This in turn can lead to problems with eyes, kidneys, feet, and the entire nervous system, not to mention cardiovascular problems. Diabetes is one of the leading causes of blindness, kidney failure, foot and leg amputations, heart attacks, stroke—in short, high blood sugar can kill you. Not rapidly, but the long tem effects of uncontrolled high blood sugar (hyperglycemia) are all too often lethal.

If your body starts breaking down fats and proteins for energy, which can happen if insulin levels in your blood drop too low, death can come in a few days, from ketoacidosis.

Low blood sugar can be just as much of a problem, and can kill you much faster. Your brain runs on glucose, so low blood sugar (hypoglycemia) affects the brain. It can kill you much faster than high blood sugar. Generally you can feel it coming on, but this awareness tends to fade with time—a condition called hypoglycemia unawareness.

A lot of people with diabetes wind up in emergency rooms because they simply pass out from low blood sugar, without warning. Some never wake up.

If you don’t have diabetes, you don’t have to think about this. When your blood sugar rises, your pancreas pumps out a hormone called insulin, which helps the cells of your body to use glucose, either for energy or in storage as fat. When it falls, your liver releases stored glucose to the blood. As a result, your blood sugar fluctuates only slightly, and you don’t really have to think about it.

For those of us with type 1 diabetes, the pancreas no longer manufactures insulin. For some of us, the liver no longer dumps glucose into our system when needed, either. Since we have to inject insulin (or have a pump deliver it) too much insulin, too little food, too much exercise or some unknown effect can make our blood sugar plummet. The treatment is sugar. Straight glucose is fastest, but any carbohydrate will do.

In Homecoming, the R’il’nai and R’il’noids have a similar problem. Esper work means using the brain—hard—and the brain runs on glucose. The liver can only dump a limited amount of sugar into the blood, and then it runs out of stored glucose. Too much esper work without readily available carbohydrates can cause low blood sugar, which they call “esper shock.”

When Roi is leaning to use his esper talents, one of the first things he has to learn is that he must eat while he is using those abilities, whether or not he feels hungry. How he feels in esper shock is based very much on my own experience and that of others with diabetes.

When I was first diagnosed, I had a number of symptoms—sweating, shaking, lips tingling. Others may get very aggressive, fight someone who is trying to get them to eat, or just not act like themselves. Still others quietly pass out. Right now, my most reliable symptom is a kind of flare in my visual field that blurs my vision, along with a feeling of weakness. I’d still have some real problems without a blood glucose meter (which requires a blood sample) and a continuous glucose monitor. I still wonder at how I got through the first years, before meters, let alone continuous monitors, were available

Now if they’d just make the alarm on the CGM loud enough to wake me up at night ….

Cataract Surgery Complications

Sometimes I wish Roi and his Healing ability were real, rather than a creation of my mind. Still, ordinary doctors can do quite a lot.

This week, it was complications of cataract surgery. I had the lens replaced in my left eye over a year ago, with stunning results. A few days after the surgery, distant vision in my left eye was back very close to 20/20, though I still needed glasses to read. I’m getting to the point where my arms just aren’t long enough, but my overall vision was wonderful.

Then, so slowly that I was hardly aware of it, my vision began to fog up again.

I found it harder and harder to read. First, words on paper. I had to use a magnifying glass to read the phone book, but then ordinary type in books became more and more difficult. The computer screen was still readable, but more and more often I was having to zoom the text and set things I was writing to half again normal size. When I started having problems reading my insulin pump and glucose meter, I spoke to my eye doctor.

I’ve had problems with diabetic retinopathy for almost twenty years. The treatment for that is what is called pan-retinal coagulation. The outer part of the retina is killed with pinpoint burns from a laser. Effectively, the periphery of the retina—which gives peripheral vision and low-light vision—is sacrificed to save the inner part, which gives sharp focus and color vision. I’ve had lots of experience with that kind of laser treatment. It’s somewhat painful and vision afterward is blurry and pink-tinged for a while. (The laser is green.)

What I had now was posterior capsule opacity. The eye doctor explained that the laser was less intense than what I was used to, though from my point of view the procedure was much the same—eye dilated, a lens inserted in my eye, and several minutes of holding my head motionless against a frame while I fixed the gaze of my other eye on a small target light.

I could hear the clicks as the doctor used the laser to cut a small hole in the thickened capsule, but I could not feel it. After I was released from the chair, my vision was blurry and pink-tinged, as I expected. What I did not expect was that by the time I got home, about an hour later, I was able to see much better than I could only that morning.

Today, forty hours after surgery, my vision is bright and clear, and if I understand correctly what the surgery did, it should stay that way. Yes, the Healing ability of a few of my characters would be nice—but medicine today can do some wonderful things—if you can afford it.

Esper Shock (Homecoming Glossary)

ESPER SHOCK: Intensive use of esper talents can run blood sugar down to dangerously low levels. The resulting hypoglycemia is called esper shock. Any source of rapidly absorbed sugar will counter it, but honey is widely used. For lasting treatment, the carbohydrate is normally followed with protein. Virtually identical to insulin shock, with similar symptoms and treatment.

Insulin Pumps

Every cell in your body needs sugar as fuel, but it can’t use that sugar without a hormone called insulin. In a healthy person, an organ called the pancreas pumps out just enough insulin. Sugar in the bloodstream is used by the cells for energy or stored in the liver or as fat. People with Type 1 diabetes, however, cannot make their own insulin. People with Type 2 diabetes may eventually lose the ability to make insulin as well.

It doesn’t do any good to take insulin by mouth; insulin is a protein and the digestive system just breaks it down and uses the amino acids as building blocks. If you can’t make insulin, it has to be delivered to the blood stream. As a practical matter, the insulin is injected into the fat layer just under the skin, and from there diffuses into the blood stream. It has to reach the blood stream at just the right rate—too little insulin in the blood and blood sugar will skyrocket (very bad for you long-term), too much and the blood sugar can go so low that the brain shuts down. (I used this in Homecoming—the esper shock that afflicts those capable of talents like teleportation is simply low blood sugar.)

Unfortunately the rate of diffusion has nothing to do with the body’s need for insulin, either to pull down the blood sugar after eating, or to keep the cells of the heart and brain operating. There are artificial insulins available which diffuse faster or slower, and it is possible to take a very slow diffusing insulin to keep the basal metabolism (the heart, lungs, digestion, brain) going and shots of fast-diffusing insulin at mealtimes to deal with the sudden surge of sugar that digestion puts into the blood. But your metabolism varies with time of day, exercise, stress, hormones and other things, most of which are not well understood and often beyond your control.

Enter the insulin pump. Lots of people think that an insulin pump means your diabetes is really bad. Others think it’s just a convenience to keep from having to take shots, or that it does all the work for you. (It doesn’t.) None of these ideas really explains the advantages of an insulin pump.

It is true that changing the place where the pump injects insulin under your skin every three days is a lot less painful than taking five or six shots a day. And there is no question that it is easier to push a few buttons before eating at a restaurant than finding a rest room where you can load a hypodermic and expose your belly for a shot. But an insulin pump can do more than that—if you are willing to work at it.

First, the dosage with today’s pumps is much more exact than is possible with a conventional shot. With a hypodermic or an insulin pen, you can at best get the dosage to the nearest half unit. That may sound precise, but for some people half a unit of insulin is the difference between normal blood sugar and insulin shock, and a whole unit can drop blood sugar from normal to zero. Luckily even fast-acting insulin does not get into the blood as fast as glucose taken by mouth, so it is generally possible to correct for these rough dosages, but why not take the right dose to start with? Almost all of today’s pumps allow you to select the dose to within a tenth of a unit, and at least two pumps now allow even more exact dosages.

Second the basal insulin, the stuff that is dripped slowly and continuously into your system to balance your basal metabolism, can be adjusted to vary by time of day. This is not important for everyone, but some people need as much as twice the amount of insulin per hour at waking as they do when falling asleep. With long-acting insulin, this means a choice of insulin shock overnight or high blood sugar in the morning. With a properly adjusted pump, the rate of infusion of basal insulin can be adjusted in hourly or even half hourly increments.

The downsides? Insulin pumps do continue to deliver basal insulin even if your blood sugar is too low. The FDA has been worried about this. There is a pump available in Europe which when combined with a continuous glucose monitor will shut down if the wearer does not respond to a low blood glucose alarm. As far as I am concerned this is a fail-safe that increases the safety of insulin pumps, but the FDA still has not approved this feature for the USA market.

Another downside is that you have to learn to use the pump, and adjust its features to suit your own body. You will probably need to test your blood sugar more frequently, up to fifteen times a day. Some people are freaked out by the idea of being continuously connected to a machine, even one smaller than a deck of cards. And if you don’t have a waterproof model swimming and even bathing can cause problems.

Is it worth it? Yes, especially for those who are insulin sensitive or for those whose need for insulin varies quite a lot over the course of a day. But you do have to be prepared for a lot of work to get it working as it can.