I'm getting a lot of questions about type 1 diabetes; I figured a blog post would be in order.
What is diabetes? What is the difference between the types?
The two types of diabetes mellitus are actually quite different, though both diseases relate to sugar and sugar metabolism. Type 1 diabetes mellitus, which I have, occurs when the immune system attacks the portion of the pancreas that produces insulin. Insulin is necessary for the body to metabolize sugar correctly. Type 2 diabetes mellitus occurs when the body doesn't respond correctly to insulin. Type 2 usually occurs in older, overweight individuals that have eaten a lot of sugar.
What's up with the mellitus at the end of diabetes mellitus?
There is another form of diabetes called diabetes insipidus, or DI. Mellitus means sweet, whereas insipidus means tasteless. The terms relate to the fact that urine from a person with diabetes mellitus, or DM, is sweet (due to the sugar flushed out of the body), whereas urine from a person with diabetes insipidus is tasteless, or tastes like whatever urine tastes like. My high school biology teacher once told me that to diagnosis whether problems were DM or DI, people drank the urine. Is it true? I have no idea.
The symptoms of DM and DI are similar, but the causes and treatments are very different. Diabetes, in general, usually refers to diabetes mellitus.
What does having type 1 diabetes entail?
Essentially I have to give myself insulin instead of relying on my pancreas to produce it for me. This means that before eating anything with carbohydrates I have to give myself insulin. Anything with sugar or starch is high in carbohydrates, so foods like potatoes, candy, and fruity drinks require giving myself more insulin than meat or low-sugar foods.
Do type 1s ever develop type 2 symptoms?
"Very rarely." is the response I've received from doctors.
Isn't type 1 called juvenile-onset diabetes?
Onset of type 1 can occur later than age 40, and thus the terms juvenile or juvenile-onset are no longer preferred. Type 1 is often called insulin-dependent diabetes mellitus or IDDM. I was 26 at onset, and I know another type 1 who was diagnosed when he was 29. Type 1 is actually "better" when it occurs later in life; when kids are growing it is difficult to find the correct amount of insulin to use.
You have to give yourself a shot before you eat almost anything? Does it hurt? How much insulin do you use?
I do have to give myself a shot before every meal. I also give myself a shot in the morning of long-acting insulin that stays in my system for about 24 hours. The shots hardly hurt at all, and I have very quickly gotten used to them. I have also gotten used to pricking my finger to check my blood sugar. Pricking my fingers was worse at first, but is no longer a problem.
Right now my pancreas is still producing some fraction of the insulin that would be expected. However, my body will continue to attack portions of my pancreas, and eventually it will produce only trace insulin. I'll have to inject more insulin at this point.
The amount of insulin I use depends on the amount of sugar in the food I eat. I have to match my insulin dose to the amount of sugar in the food I consume using a carbohydrate-to-insulin ratio. The ratio will change as my pancreas shuts down, but it should stay the same afterwards.
What are the symptoms of being type 1 diabetic?
The insulin shots are to keep my blood sugar at roughly the level of a normal person's blood sugar. There are no symptoms if my blood sugar stays in the normal range. Problems arise if my blood sugar is too high or too low.
If my blood sugar goes too low, I notice it immediately, and I have something that has a little bit of sugar in it. I'm trying to find something with sugar that I don't like --- giving myself a reward when I don't properly manage my blood sugar seems like a bad idea. When my blood sugar is too low, my head feels a bit weird and my muscles jerk instead of operating smoothly. If my blood sugar goes way too low, very bad things can happen, such as fainting. Having low blood sugar is dangerous short term.
If my blood sugar goes too high, then I usually have trouble focusing. If it stays too high, then I usually itch. The itching is a personal symptom, which many people do not have. If it stays too high for too long, I can develop more symptoms, from the mundane like increased acne and increased thirst to the severe symptoms of weight loss, muscle aches and very blurry vision. My body has acclimated to high blood sugar, so it is difficult for me right now to notice when my blood sugar is high.
If my blood sugar is too high long-term, there are many complications for my eyes, kidneys, heart and lungs.
How did you find out?
Over the past three months at work, I've had tremendous difficulty focusing. I've also noticed that I've had increased amounts of acne.
During winter vacation, I spent a week in Boston. My hands started to itch, and while I didn't think too much of it at the time I did see a doctor when I was home in Iowa a week later. I starting having the more severe symptoms, including increased thirst and blurry vision. I thought my vision was blurrier than normal, but I've also needed glasses for a while, so I didn't really notice it. Then my muscles starting being sore when I walked up the stairs. I searched for the symptoms using my search engine of choice and there it was: diabetes. I saw the doctor the next day. My blood pressure was normal, my heart rate was normal, and my blood sugar was 4x the value it was supposed to be. Based on my age, weight and blood sugar, it was an automatic type 1 diabetes diagnosis. I had also dropped 2.5 kilos (about 5 pounds) in the week between the two doctor appointments. The doctors said that the decreased exercise (I ride my bike / walk a lot in NL) combined with my root beer, birthday cake and chocolate diet caused a huge spike in my blood sugar.
How does exercise work?
Blood glucose levels drop automatically during exercise, so I am supposed to only give myself a half dose of insulin at meals before I work out. After I get my levels stabilized I think I am going to join a gym.
Can you still drink alcohol?
Yes, but alcohol is tricky. Most alcoholic drinks are just fermented sugar, and consuming small amounts of sugar over a long period of time does not match giving a single injection of insulin, which works well for a meal. Additionally, being intoxicated is much more dangerous now than before. I didn't consume alcohol in large quantities before, just a beer every now and then, but I think I am going to consume even less now.
This all kinda sucks.
That is not a question, but yes, it is unfortunate. However, it turns out that people can adapt very quickly to adverse circumstances. I can tell that I am going to be able to live a normal life sans some special things required for eating food and exercise.
How common is type 1 diabetes?
In northern European populations, the rate is almost 1%, or 1 in 100 people (see the study in the next question). In America the rate is probably closer to 1 in 200 or 250 people (see the Wikipedia article). I haven't found great information on the rest of the world.
Is the disease genetic?
There are some very interesting studies on this question, particularly a study on Finnish twins. When a twin of an identical pair had type 1 diabetes, there was roughly a 50% chance that the other twin would also have the disease. There are multiple genes involved, which make occurrence complicated to predict. The 23andMe page on type 1 diabetes is actually a really good resource on the genes and appropriate studies.
Type 2 is also somewhat genetic, but is much more influenced by the environment, especially diet and exercise.
If your pancreas isn't working does that mean you don't need it? Can I stab it?
Only a portion of my pancreas isn't working; I still need some of the other portions. No, you may not stab my pancreas.
Do you expect that anyone is going to develop a cure in your lifetime?
No. It wouldn't surprise me if someone came up with a vaccine, but I doubt there will be a cure. Drug companies aren't very interesting in curing things, they care more about treating symptoms, which is a better income stream.
What was treatment like before insulin?
Controlled starvation was the "treatment" before insulin. I use quotes because nothing was actually treated, symptoms existed, but people would live longer. The life expectancy after diagnosis without starvation was about six months; it could increase to a few years with controlled starvation.
After insulin was successfully extracted in 1921 (the extraction technique's inventors won the Nobel prize in 1923), treatment was an insulin injection before any meal. I would recommend reading the book Breakthrough, though make sure you read the book's afterword to understand that some of the non-scientific portions of the book are fictionalized.
What can I do?
The most important thing you can do is take care of yourself so that you are less likely to develop type 2 diabetes. Eating foods with less added sugar, eating lots of fruits/veggies, having a balanced diet, and getting enough exercise are very important.
If you like you can donate money to a foundation like the JDRF or ADA, but I think being supportive of scientific research and politicians who support research is more important.
Finally, just treat anyone who is diabetic just like a normal person with specific dietary restrictions. Try not to confuse type 1 with type 2; while both types share the label of diabetes mellitus, the two types can be very different. If a diabetic suggests eating at a different time or a different place please accept.
Oh, and be very careful about brunch. We the type 1 diabetics hate brunch. Well, mostly hate brunch. It is too much food of the wrong type at the wrong time.
This is all really interesting, where can I find more information?
I would suggest browsing the JDRF website first, then maybe the ADA website. There is always the Wikipedia.