July 18, 2007

Type 1 perceptions of Type 2s -- Type 2s Have it Easy?

An anonymous person posted a comment on the previous entry, explaining that one reason Type 1s have the feelings they do about Type 2s is the perception that they have a much easier time with control and could, if they wanted, control their blood sugars with diet and exercise, but that instead they merely rely on pills which don't work.

This really intrigued me, because the perception of a lot of educated Type 2s is that Type 1s have the advantage in that they get treated by specialists, where most Type 2s are treated by family doctors, and are given a drug that works--insulin, while Type 2s get nasty oral pills that don't.

Type 1s get educated about the impact of carbohydrate on blood sugar. If you are a Type 1 it may come as a shock to you that most Type 2s are NEVER told that carbohydrates raise blood sugar. In fact, quite a few are under the impression that FAT is what raises blood sugar, because the only nutritional message their doctors gave them was that it was important to eat a very low fat diet!

This isn't hearsay. I've heard it from the mouths of otherwise educated Type 2s.

I certainly found I got MUCH better treatment once my family doctor realized I wasn't a Type 2. Until then, he handed my diabetes "education" to a Nurse Ratched who taught me to roll the vial of Lantus (showing she didn't understand that it wasn't NPH), who prescribed a 1 inch needle and turned out not to know that shorter needles were available, and who would have, if I hadn't stopped her, injected me with what turned out to be 3 times the dose of Lantus that was right for me at 2PM when I had a long drive home ahead of me!

Nurse Ratched also did not recognize the symptoms of hypo when I called in with them--waking at 3AM sweating and with pounding pulse--and ended up referring me to a cardiologist for what she was sure was a heart condition!

THAT is the kind of treatment Type 2s get. And my family doctor, I have to say, is considered the be the best in our region and I have found him to be very good at treating every other condition I've shown up with, except diabetes.

The other thing that Type 1s may not understand about Type 2s, is that because of the way Type 2 is diagnosed, many Type 2s--especially women, fasting blood sugar stays near normal long after their post meal blood sugars are in the mid 200s. So they don't get diagnosed until they've had diabetes for a decade.

That is why fully half of Type 2s start treatment with significant neuropathy, and many at diagnosis also have protein in the urine, early retinal changes, and most significantly, 50-80% of their beta cells dead from years of exposure to very high blood sugars. When that many beta cells are gone, the problem is no longer insulin resistance--which can be modified by exercise in many people. It is insulin deficiency, which cannot be reversed by diet or exercise.

But there's more. Another thing Type 1s need to understand about Type 2s is that most of their doctors don't give them any sense of urgency about their care. As a Type 1, you have heard all your life about the bad things that will happen to you if you don't keep your blood sugar under control. You see the doctor every couple months and you are exhorted to get better control.

What a shock, then, to learn that the typical Type 2, treated by a family doctor, may be seen once a year, and is likely to get a pat on the head about their "good control" when they have an A1c of 8%. And no further treatment at all!

In fact, a recent medical journal report found that most family doctors won't even put a Type 2 patient on an oral diabetes drug until they have had an A1c of 8% for over a year.

Family doctors often believe that insulin is bad for Type 2s, so they are rarely put on any kind of insulin until their A1c have been way over 10% for a few years. Then they are only given Lantus, which doesn't affect their post-meal blood sugars. Because family doctors are nervous about prescribing meal time insulin and don't have the time to work out dosing with their patients, the typical Type 2 "on insulin" (Lantus or NPH) tests their blood sugar once or twice a week--fasting--and still has an A1c well over 7%. Type 2s rarely, if ever, are sent to Diabetes Educators to learn how to use insulin.

I know one woman who has had Type 2 diabetes for 12 years who is on Lantus who has never been instructed to test her blood sugar after eating and has, in fact, never done so. As long as her fasting blood sugar is around 125, her doctor tells her she is "fine." She likes being fine, so she is very resistant to any suggestion that maybe it would be a good idea to see what that whole wheat bread and pasta with the sugary low fat sauce is doing to her blood sugar.

The most recent NHANES survey, a huge U.S. government funded epidemiological survey which looks at the health of the population every so often, found that the average Type 2 in the U.S. has an A1c of 10% which is far higher than the average was a decade ago.

The reason appears to be that with the heavy promotion of new oral drugs by drug companies, doctors were delaying putting patients on insulin for many more years than they used to. Instead of prescribing insulin to their Type 2s with A1cs as high as 13%, they just keep prescribing oral drugs and the patients' blood sugars keep going up.

So the Type 2s you meet who seem so oblivious may simply be responding to their doctors telling them they are "Fine" when they aren't. The chances are that their doctors tell them that insulin is bad for type 2s and that oral drugs will regenerate their beta cells (which they won't) and that they need to eat a lot of pasta, bananas, and oatmeal to stay healthy.

They may have gone to the gym for a few months and seen no decline in their blood sugars or weight, and concluded that exercise doesn't work--which, if you live on the nutritionist recommended "diet" of bananas, oatmeal and pasta, without any injected insulin to balance them, is quite likely.

In short, none of us has it easy!


Anonymous said...

Thank you for that post. I get so tired of hearing things like that. We all have this disease and its hard enough to deal with everything that goes along with it without adding misconceptions about which type has it easier or that one type had no control over getting the disease and the people that have type 2 did it to themselves. The bottom line is we all have it and have to deal with it as best we can.

in search of balance said...

Type 1 and type 2 diabetes are different diseases, with different causes and outcomes. One of them always requires vigilant monitoring on a 24 hour basis to survive, and one of them can require that, but does not always. Blame and anger at either type makes no sense at all to me. Comparison also serves little good, as there is no quantifying measure of suffering. Diabetes sucks across the board, plain and simple.

Emily said...

Although no one would envy what you had to go through to get a proper diagnosis and the care you needed, I find your personal experience as “being” more than one type of diabetic very interesting. Such insight is a precious thing. I have type 1, but I have received varying degrees of care from doctors, so I can commiserate with the large body of Type 2 diabetics who have received improper care.

So I guess the question for type 1’s is: why are we so angry? The fact is that we do get a lot of misconceptions thrown in our face and it is easy to see the existence of Type 2 diabetics as the source of these misconceptions. But as your blog post points out, many of the comments we get angry about is not correct information about Type 2 diabetes that is improperly applied to us, but flat out misinformation. You put it quite rightly in your last line “none of us has it easy”, and the last paragraph of your last post is an appropriate call to action.

Bad Decision Maker said...

Thanks for writing this. I think there are a lot of issues going on with judgments between type 1's and type 2's, and also judgments that our broader society makes about diabetics and different kinds of diabetics.

That said, it seems like a big part of the problem might be inadequate health care in general - negligent doctors, uneducated doctors, nurses, and patients, influence of pharmaceutical companies etc.

For example: my father is a primary care doctor that treats a lot of type 2's. I think he's a good well-educated doctor in general, but his ideas about diabetes aren't what they should be - for ANY diabetic, including his type 1 daughter. I have type 1, and he seems to think that low-fat high carb diets, lots of white bread (once he served me potatoes, white bread, and peas for dinner) and post-meal blood sugars in the 200s are just fine for me.

I think this affects type 1s as well as type 2s, though as you point at type 1s are often taken more seriously. I wonder however, if a part of this might have to do with the demographics of the epidemics: unlike type 1, poorer people, and people of color are more likely to get type 2 than their wealthier or whiter peers, and are also more likely to lack adequate health insurance and access to care. And even when people get access to care, racism can negatively affect the care that people get.

I also think it's important to note that on average type 1's are at higher risk for kidney disease and eye disease than type 2's - I don't know if it's having diabetes for longer or the way it takes a toll on the body. This of course doesn't mean type 2's don't deserve much better care and awareness then they are getting.

As other people have said, blame and anger and being each other's enemies instead of allies is really unhelpful. I realize this, but in all honesty I do sometimes feel jealous, frustrated, or angry reading posts by type 2s on diabetes listserves. Some freak out about one blood sugar over 140, or complain about having to test once or twice a day. That's hard for me to hear when I test 10-12 times a day and despite my best efforts my averages are usually over 150. It's not that I think those type 2's don't deserve to express concern and want to be at their healthiest, that is just my honest reaction sometimes.

Melissa said...

Excellent posts Jenny!! (I think I messed up commenting on the last post! oops!)