Wednesday, April 30, 2008

Taking insulin for Asian food

I celebrated my birthday over the weekend, and a few days later my husband and I celebrated our one-year anniversary. Both times we visited one of our favorite restaurants, both of which happened to be Asian: a Japanese sushi restaurant (my all-time favorite!) for my birthday, and a Chinese and Thai food restaurant for our anniversary.

Although Asian food is pretty much my favorite cuisine, it is also the most challenging to take insulin for. I treat my diabetes with something known as carb counting, which means that I determine my insulin dose according to what I am eating, rather than determining what I eat according to my insulin dose. My carb-to-insulin ratio is 15:1, meaning that I take one unit of insulin for every 15 grams of carbohydrates I eat.

When I'm eating something with a nutrition label, my insulin dose is pretty easy to determine. Foods without a label — produce, for example, and eating out — are a little more difficult. However, Asian is by far the most difficult to determine.

Sushi is probably the most challenging. Although you wouldn't think there would be many carbs in sushi, since most of it is raw fish, my blood sugars always run ridiculously high afterward — despite my best efforts to guestimate my insulin dose. I think there must be something more than just rice in the sticky rice.

Chinese food is difficult too, primarily because I have no idea what is in the sauces. Also, a nutritionist once told me that they soak the meat in something high carb (corn syrup?) in order to tenderize it. Whatever it is, Chinese food is usually difficult to guestimate an insulin dose for, too.

Usually, my guestimating for Asian food goes something like this: I calculate roughly twice the amount of insulin I would normally expect to take, and then add a couple more units for good measure. Sometimes that turns out to be dead on, but often my blood sugar readings are still in the upper 200s and lower 300s several hours after the meal.

Personally, I think that rather than meaning that I need to deny myself my favorite foods, I actually need more practice with them. I should probably eat sushi and Chinese food on a regular basis, until I get really good at guestimating my insulin doses for those meals!

Monday, April 21, 2008

Nighttime hypoglycemia and hypoglycemia unawareness

Both Friday and Saturday nights this weekend, I woke up crashing at about 3:30 or 4:00 am.

Nighttime hypoglycemia is an issue that many diabetics have to deal with, particularly any diabetic who takes insulin. The problem is that during the middle of the night, there is a period where hormone production stops. Since hormones make insulin less effective, a sudden lack of hormones makes insulin more effective. In a normal body, the pancreas simply produces less insulin, but of course a diabetic taking a 24-hour time-release shot of insulin doesn't have that option.

The end result is that there is a period overnight where diabetics on insulin can crash. To prevent that, I have to go to bed with my blood sugar a little on the high side (ideally about 150). That way, when it drops it won't go too low.

Both instances of nighttime hypoglycemia this weekend were probably caused by too much insulin before bed, or not enough of a snack. Both times, I woke up shaking and drenched in sweat. Hypoglycemic episodes are by far the worst part of being diabetic, in my opinion.

In this case, though, I'm actually kind of glad of it. I hadn't woken up crashing in a long time, and because of a few other indicators, I was worried that I had developed some hypoglycemia unawareness (which is where you don't get the symptoms of crashing, usually because it happens so often that your body stops taking notice).

Not waking up for nighttime hypoglycemia is potentially dangerous, so having woken up crashing twice recently is as much a relief as it is an inconvenience.

Wednesday, April 16, 2008

Why natural sugars are better for diabetics

I mentioned in my last blog post that I was reading a book by Michael Pollan, called In Defense of Food. Since it's a book about food, nutrition, and nutritionism, I found a lot of what it had to say applicable to my type 1 diabetes.

One thing I found particularly interesting was this quote, found on page 112 (emphasis added):

Sugar as it is ordinarily found in nature — in fruits and some vegetables — gives us a slow-release form of energy accompanied by minerals and all sorts of crucial micronutrients we can get nowhere else.

Nutritionists often advise diabetics to opt for naturally occurring sugars, such as fruit, for just this reason: Because of the fiber included in the fruit, the body absorbs the sugars much more slowly, which prevents the rapid peak of blood glucose caused by processed sugars.

(This is also where the Atkins craze got the rather erroneous idea that total carbs - fiber = "actual" carbs. That formula is actually a rather over-simplified way of looking at it, and not quite accurate — the sugars are still there, they just take longer to hit your blood stream. Besides which, you can't duplicate the effect by throwing together processed sugars with a bunch of fiber, like many of the prepackaged Atkins foods do — the lack of processing in the fruit is a significant part of why your body takes longer to absorb the sugar!)

For type 2 diabetics, eating naturally occurring sugars such as fruit is important because it gives your body time to keep up with its insulin needs. For type 1 diabetics, like me, fruit has a slightly different, but rather interesting effect: The delayed absorption into the blood stream changes my insulin needs.

I've found that even though an average-sized apple should typically contain about 30 grams of carbohydrates, 2 units of Humalog will sometimes cause me to dip too low near the end of Humalog's 2- to 3-hour window (Humalog takes between 2 and 3 hours to run its course). I'm guessing that it's because the sugars hit my blood stream so gradually that the insulin ends up being too much.

On the other hand, foods that hit my blood stream more quickly, such as candy bars, sometimes take more insulin than the amount of carbs would indicate.

Although one of the beauties of carb counting is that I can eat whatever I want, whenever I want, it's also good to keep in mind that certain foods foster better overall glucose control.

Tuesday, April 15, 2008

Personal defibrillators?

In case you don't know, an automated external defibrillator (AED) is the thing they shock people with on TV ER shows to restart their heart. (While I'm not a big fan of how medical stuff is portrayed in movies and TV, it seems like the easiest way to explain a defibrillator to someone who doesn't recognize the name.)

Now I guess medical research is looking into the benefits of issuing one to every heart attack survivor. The idea is that someone who has already survived a heart attack might have a better chance of surviving a second one if there is a defibrillator at home.

Since heart disease is a problem among diabetics, I wanted to share the results of the study. Evidently having a defibrillator around isn't much better than having family members around who are trained in CPR. However, if your family doesn't want to learn CPR, or if they suck at it, a defibrillator could increase your chances of survival... if someone is around when you go into cardiac arrest.

This expert quote in the article made me laugh:

"The best way to survive a cardiac arrest is not to have it in the first place," says Arthur Kellermann, of the Emory School of Medicine in Atlanta.

Umm.... Duh. But he follows up with a good point:

"This is accomplished through diet, exercise, non-smoking and access to good medical care for conditions like high blood pressure prior to a heart attack."

In other word, take care of yourself, people!

I still believe that the best treatment for diabetics is to keep their diabetes under good control and live a healthy lifestyle, rather than relying on drugs. However, this study is a good reminder that some form of intervention is necessary in order to avoid a heart attack, because nothing can guarantee your survival once you go down that path!

Thursday, April 10, 2008

Low-fat diets, heart disease, and health

I'm reading a book right now called In Defense of Food. If you haven't heard of it yet, it is kind of the non-nutritionist nutrition book. Michael Pollan's argument is that for the most part, we don't need to dissect the components of food in order to eat a health diet — and that we definitely shouldn't be eating all of the processed food on the market, no matter what nutrients it contains.

One of the things he talks about is how there is some evidence that low-fat diets actually cause weight gain (pg 45). Since obesity is thought to be linked to heart attack, you have to wonder if advising diabetics to eat low-fat diets is really the best course of action.

The book also draws other interesting connections, such as that "many [people] date the current epidemic of obesity and diabetes to the late 1970s, when Americans began bingeing on carbohydrates, ostensibly as a way to avoid the evils of fat."

But by far the most interesting, in my opinion, is this:

Whether the low-fat campaigners should take the credit for [the lower number of heart attack fatalities] is doubtful, however... A ten-year study of heart disease mortality published in the New England Journal of Medicine in 1998 strongly suggests that most of the decline in deaths from heart disease is due not to changes in lifestyle, such as diet, but to improvements in medical care... For while during the period under analysis, heart attack deaths declined substantially, hospital admissions for heart attack did not.

Of course, I am not a scientist or a doctor, but I do know that I personally feel that eating primarily whole, unprocessed foods is far more important than eating low-fat, high-carb, or even than following the food pyramid. My own cholesterol was at its highest when I was eating a lot of processed foods, especially low-fat processed foods.

As Pollan points out in his book In Defense of Food, nutritionism has been wrong before — and disastrously so, such as with the whole trans-fats debacle. This just reinforces my reasons for deciding to not take Lipitor anymore: If you can't trust scientists to report correctly on the connection between dietary fat and heart disease, how do I know they are correctly reporting the connection between type 1 diabetes and heart disease?

I feel In Defense of Food is an important to read, particularly for diabetics. Our "culture of fear" doesn't stop with terrorism — nutritionists and scientists seem determined to make us fear dietary fat every bit as much as an invasion. In Defense of Food provides another look at these issues... and why we shouldn't fear our food.

Tuesday, April 8, 2008

The importance of diabetes self-management

Before I move on, I want to say one last thing about my first endocrinologist.

I mentioned in my post about finding my old medical records that my first endocrinologist used to berate me for adjusting my own insulin dosage.

Here are his notes in my records:

1/7/2003:

Overall control is much more variable. I have asked Katharine not to very [sic] her Lantus dose. If she is having difficulty she is to let us know.

9/19/2003:

She has been adjusting her Lantus dose by herself. Her blood sugars have been very irregular since her last visit as a result...

A hemoglobin A1c is significantly improved, however, her blood sugars remain very erratic. I have asked Katharine to not change her Lantus dose. Her Lantus dose should remain relatively stable.

I'm missing the paperwork for the visit that would have fallen between these two, but I'm sure you get the idea. By the time I switched to the Barbara Davis Center, I had come to dread my appointments with my endocrinologist, because I knew I would be harassed and blamed for attempting to control my diabetes on my own.

The thing is, my erratic turned out not to be because I was trying to adjust my own Lantus dose, as my doctor claimed, but because he had failed to tell me Lantus expires 28 days after being opened. I was using the bottle until it was empty, which took about two months — so every other month, my sugars were off the charts.

It was his nutritionist who realized what was going on, and it was she who gave me the subtle encouragement I needed to switch doctors. She saw that I was not happy with my current endocrinologist, and gently suggested that a good doctor-patient personality match is important.

Thanks to that advice, I now have a doctor who is much more supportive of me and my diabetes. He has never criticized me for adjusting my own dosages, and although he has made suggestions in the past, it also seems like he usually agrees with the changes I make to my dosages.

The thing is that being able to adjust one's own insulin dosages is imperative for good control of type 1 diabetes. Despite my doctor's claim that my "Lantus dose should remain relatively stable," my insulin needs are in constant flux, and I need to be able to keep up with them if I want to avoid periods of persistent highs or lows.

For instance, during my menstrual period I almost always require about four units less Lantus, compared with the rest of the month, when I'm on the pill. Stressful periods (such as finals week when I was in school) almost always make my insulin needs go up, and periods when I am more active or eating less than usual almost always make my insulin needs go down.

If I didn't feel confident adjusting my own insulin dosages, I would suffer chronic high sugars or dangerous hypoglycemic episodes every time my metabolism adjusts up or down. This shows that in order to have the best possible control over your diabetes, you literally have to know your body better than your doctor — and be comfortable making executive decisions based on what, in your experience, works or doesn't work. Treating diabetes is a daily thing, not just something your doctor deals with every few months!

Saturday, April 5, 2008

My first endocrinologists and my cholesterol

I know I'm no longer going in the order of the list I made after finding my old medical records, but I'm on a roll here, just thinking of all my beefs with my first endocrinologist.

The issue of my cholesterol is a big one. I finally got off Lipitor last year, after nearly five years on the drug (with a little break here and there, when I wanted to see what my LDL would be without it).

My endocrinologist started harassing me about my cholesterol levels almost right away. He would have put me on Lipitor at my first appointment after being discharged from the hospital, had I not insisted that I wanted to try other methods first. I got off the Depo-Provera (birth control shot) and back onto the pill, because estrogen (which the shot blocks) tends to protect against LDL. I tried eating low-fat and no-fat food, and when my LDL only went up more, I finally acquiesced and allowed my endocrinologist to put me on Lipitor.

(As a side note, I now believe that my higher LDL was a result of eating more processed foods. I now eat more whole fat — whole milk, cheese, etc. — than I used to, yet my LDL is lower. I attribute this partially to the grapefruit juice I'm drinking every day, and partially to the fact that I eat very little processed food anymore.)

Anyway, my endocrinologist started me on Lipitor in January 2003, after my LDL reached the oh-so-scary high of 138. While on Lipitor, my cholesterol was ridiculously low, often running 70 or lower — and I believe I was on the lowest possible dose (10 mg).

A year later, my doctor decided to put me on another cholesterol-reducing medicine, Niaspan. His report reads:

LPa is elevated which places her [at]risk for early coronary disease. I will begin Niapsan 500 mg once daily with supper. This will decrease LPa it [?] levels. She is to take an adult aspirin at the beginning of supper and the Niaspan at the end of supper.

This was the most explanation I ever got — no phone call, and certainly no say in the matter. Back then I was a good little sheep — I mean patient — though, so I got the Niaspan and aspirin and took them without question.

Later that night, I freaked out when I started feeling heat and painful pricking in my ears. Slowly the waves of heating and painful tingling swept through my body. It was one of the most unpleasant and inexplicably painful things I have ever experienced, and not knowing what was causing it was very frightening.

Since the sensation had happened mere hours after I took my first dose of Niaspan, I figured that might be the cause, and started searching the Internet for more information on Niaspan. Thank goodness for the Internet! I was able to verify that the sensation, called "flushing" (a severe understatement), was a side effect of the Niaspan.

I was livid. My doctor hadn't told me anything about Niaspan and its possible side effects. In retrospect, I shouldn't have even taken it without questioning him — and doing my own research — first. Unfortunately, it was another year before I came to my senses and decided to find an endocrinologist with more respect and consideration for his patients — and it wasn't until late 2005 that I finally took charge and told my new doctor that I wanted to stop taking Niaspan.

The Niaspan site offers some information about flushing. Notice how it downplays this side effect. In my experience, flushing was highly painful, rather than just a redness, and it did not lessen after several weeks. The entire time I was on Niaspan, I had to be careful not to drink coffee or sports drinks in the evening, because hot drinks or B vitamins could both trigger a significantly more painful episode. It was a horrible experience, and in my opinion all the stuff about keeping the benefits in mind is BS, because there are better ways to raise HDL and lower "bad" cholesterol than with drugs!

Friday, April 4, 2008

My first endocrinologist and a misdiagnosis of Hashimoto's disease

One of the things I mentioned in my last post, about my first endocrinologist, was a misdiagnosis of Hashimoto's disease.

In retrospect, my doctor seemed way too eager to diagnose me with this disease. Coupled with his eagerness in prescribing medications to me left and right, whether I really needed them or not, it makes me wonder if he got a kickback from the drug companies.

In any case, this is what his report says about my visit and labs from June 2002, literally only a week after my discharge from the hospital:

Hypothyroidism, Chronic Lymphocytic Thyroiditis. TFTs were repeated due to her previous slightly abnormal thyroid functions tests with TSH in the high normal range at 3.91. Laboratories indicate that Katharine has Hashimoto's disease with high antibody levels and is likely to rapidly become hypothyroid. I will send Katharine out a prescription to begin Synthroid 50 mcg daily and follow her thyroid functions regularly to appropriately titrate her thyroid hormone dose. We will further discuss her thyroid disease at her next visit.

My endocrinologist actually called me at work to tell me I had Hashimoto's disease and would become hypothyroid. He said he would be sending out a prescription for me, but he never did. His report on my next visit stated:

Chronic Lymphocytic Thyroiditis. Thyroid functions remain int he normal range indicating that she does not need thyroid hormone replacement yet.

After that it was never mentioned in his reports again, and he never again tested for the antibodies that supposedly indicated I would become hypothyroid. This follow-up statement was the closest I ever got to an admission that he had misdiagnosed me with Hashimoto's disease.

I can remember a technician or a doctor mentioning to me in the hospital that my thyroid levels were a little elevated, but that they thought they would probably normalize now that my sugars would be under better control. My entire system was out of whack when I was in the hospital — just about nothing was in the correct range.

The hospital was right and my endocrinologist was wrong: My thyroid levels have never strayed out of the normal range, and it has been almost six years since my endocrinologist told me I had Hashimoto's disease. When I consider how close I came to taking yet another drug that I didn't need, it makes me shudder. Who knows how long it would have taken me to figure it out and get off of it?

Thursday, April 3, 2008

My first endocrinologist and my diabetes

In the last handful or so of posts, I told the story of my diagnosis and hospitalization. I discussed how ignorance and confusion about diabetes seems to prevail even through the medical industry.

Unfortunately, I didn't experience anything much better from my first endocrinologist.

In the beginning, I though he was great. I credited him with nailing the correct dose of insulin (though after reading my discharge paperwork, the general practitioners had actually pretty much gotten it themselves; all he did was adjust it by a unit).

Within two years, I was totally disillusioned with him. My sugars were out of control, my A1c was the highest it had been since my diagnosis, and he didn't have any clear answers for me.

In fact, my endocrinologist often blamed me for my lack of control. I began to dread my appointments. He was diagnosing and recommending stuff left and right, really bizarre stuff — for instance, he suggested I was type 1 and type 2 and prescribed medication for treating type 2 diabetes, which his dietician thankfully recommended I not take. He also suggested I get on the South Beach diet, which is often used to help type 2 diabetics control their sugars.

Keep in mind that this is someone who is supposed to specialize in conditions like mine.

In the end, the problem turned out to be something extraordinarily simple: My endocrinologist had neglected to tell me that Lantus, my once-a-day insulin, expired 28 days after you opened the bottle. I was using a bottle until it ran out, which took about 2 months. Therefore, every other month my sugars were inexplicably (it seemed) out of control.

This was not the first time I had had a problem with my endocrinologist not properly briefing me on a drug before prescribing it to me. That, coupled with the fact that he never noticed the pattern and figured out what could be causing it (I kept careful records of my sugars, my dosages, etc.), finally pushed me to seek out another doctor.

I switched to the Barbara Davis Center, which is among the top juvenile diabetes clinics in the United States, and it proved to be the best thing for me: I have been happier and in better control of my diabetes ever since. However, before we go there, I have other stories about my first endocrinologist, such as a hasty and incorrect diagnosis of Hashimoto's disease, and the issues surrounding my cholesterol.

Wednesday, April 2, 2008

How diabetes affected my vision

I've been talking lately about finding my old medical records. There's something pretty important that happened to me that the records don't show, so I'll talk about that now.

When I talked about the symptoms of diabetes that I was experiencing before I was diagnosed, I mentioned my blurry vision. This happens when the sugars accumulate in the fluids in the eye. If you think about it, it's kind of like trying to peer through the glaze on a doughnut — ha ha!

It's a pretty well known phenomenon that when someone is diagnosed and their blood glucose is brought down, their vision suddenly improves. What happened to me, though, no one had an answer for. Eventually I came up with my own theory, but I have never been able to confirm it with a doctor.

I have had poor vision since about sixth grade. It's so bad that I can't even read a book or the computer screen without my glasses, without bringing it to within inches of my face. On the third day of my hospitalization, I suddenly realized I was having a hard time seeing through my glasses. I took them off, and was perfectly astonished when I realized I could see better without them!

In fact, my vision was so good that I stopped wearing my glasses entirely. During my follow-up with the family doctor after being released from the hospital, my vision tested at 20/25 — pretty much a miraculous improvement.

At the time, we thought that perhaps I had been developing diabetes for years, and that's why my vision had always been so bad. After several weeks, though, my near-perfect vision started to decline. Eventually, it bottomed out almost right back where it had been.

Why would my vision "fix" itself, and then go right back to being bad? None of my doctors had any answers.

Here is what I finally decided had happened: My sugars had been rising steadily for probably eight months to a year before I was diagnosed (as I remember having an unusual problem with cottonmouth as much as eight months prior to my diagnosis). This entire time, I had been staring through sugar-clouded fluid in my eyes.

Near-sightedness is caused by one's eyeballs having the wrong shape. I think the strain on my eyes during this period was so great that they actually changed shape in order to try to compensate. When my blood sugar was normalized, suddenly they were the correct shape for near-perfect vision. But without the perpetual strain forcing them to keep that shape, they slowly relaxed into their old, near-sighted shape.

Of course, I don't know for sure that this is how it happened, but it's the closest thing to an explanation than I've ever gotten from any doctor.

Tuesday, April 1, 2008

My hospitalization: Surrounded by ineptitude

When I was diagnosed as diabetic, I was sent to the emergency room. I spent the next four nights in the hospital, largely due to the fact that the doctors didn't seem to know what they were doing.

You might thing I'm exaggerating, but I'm not. I went into the hospital with a blood sugar of 515. They got it down to about 80 that first night, but then for the next few days couldn't get it under 250.

I mentioned that I recently found my old medical records. This is what the hospital's discharge summary says:

The patient's course in the hospital was relatively benign, although we had a hard time getting her blood sugars consistently under control for the first few days.

The main cause of this seemed to be a lack of communication. About a half an hour before a meal, someone was always sent to check my blood glucose. Then someone else would bring insulin and give me a shot. And after that, a third person would bring me a meal and put it in front of me. (Sometimes the meal actually came before the shot.) It didn't seem to occur to anyone that if they gave me insulin to correct a high glucose reading, it wouldn't do them any good if they then fed me right away — unless of course they also gave me insulin to counteract the meal.

The report confirms what I've always suspected: They were also way too conservative about how much insulin they gave me.

Lantus was started at 10 units in the morning with a sliding scale of Regular Insulin and through the course of her stay with us, she was switched to Lantus 18 units and Humalog q.a.c. and q.h.s. at 7 units.

(I looked the abbreviations up; q.a.c. stands for the Latin for "before every meal", and q.h.s. means every night.)

Even more interesting, though, is the "Discharge Medications" and "Discharge Instructions" sections:

The patient was discharged with Lantus insulin and Humalog insulin; Lantus 18 units q.p.m. and Humalog 7 units q.a.c. and q.p.m. along with the Lantus, although in separate syringes... The patient is to continue with her diabetic diet.

(I think q.p.m. means, or should have been, q.h.s.)

According to the discharge summary, they put me on a traditional 3-injections-per-day insulin regimen and a restrictive diet, which is so NOT what happened. I was discharged with instructions for carb-counting, which is where you determine your shot according to how many grams of carbohydrates you are eating. My ratio was one unit for every 15 grams of carbs.

So even my discharge report shows the lack of communication that plagued my entire hospital visit.

My hospitalization: MORE misinformation about diabetes

When I was checked into the emergency room with a diagnosis of new onset diabetes, I knew very little about diabetes. I was completely dependent on the hospital staff to educate me.

Which, as it turned out, was a complete mistake.

Here are the various misconceptions that were communicated to me by nurses, dieticians, and doctors:

* That they couldn't tell whether I was type 1 or type 2 diabetic until they completed my blood tests. I never found out about the mysterious blood test that would have determined which type of diabetes I had. However, from what I know now they should have been able to make an educated guess. Not only was I young and skinny, but my family also had a history of autoimmune diseases: My mom has hyperthyroid, or Graves' disease.

* That I would need to eat fewer carbohydrates, and more proteins and fats. This is the OLD way of treating type 1 diabetes. Since heart attack is a major concern among diabetics, the opposite is actually true. Plus, modern insulin allows diabetics to determine their doses by the amount of carbohydrates they are eating, closely mimicking the behavior of the pancreas.

* That I could reuse syringes and lancets numerous times. This misconception is actually kind of dangerous. Modern diabetic supplies have such tiny needles that the tips bend the first time they puncture the skin. After multiple uses, they start causing damage, and injections or finger-pricks become more painful.

I am always frustrated by how little the general public knows about diabetes, but it appalls me that medical staff were this misinformed — not to mention that they were trying to teach me this misinformation! In my next post, I'll also talk about how their misunderstandings of diabetes actually resulted in a lack of appropriate care for me.