The Migraineur

January 31, 2008

Early Detection Double Standard

Every year, my doctor does a Pap smear and sends the results off to the lab.  If the results come back abnormal two years in a row, here’s what will happen:

  • I will go to a specialist for a colposcopy, in which my cervix will be carefully examined under magnification and vinegar (really) to detect any abnormal cells.  Abnormal cells will be biopsied, and it is quite likely that a tissue sample will be taken from inside the cervix.
  • Assuming that the results come back negative for cervical cancer, for the next several years, I will have semiannual Paps done by a specialist until no more abnormal cells are found.  Then I can go back to annual exams done by my primary doctor.

This is all done to make sure that abnormal cells, if present, are found, and to carefully monitor those abnormal cells so they can be excised if they show signs of becoming cancerous.  Early detection is widely thought to be the most important determining factor in successful cancer treatment.  And certain kinds of cancer screenings, such as Pap smears, mammograms, colonoscopies and prostate exams are routinely done on all patients over a certain age regardless of family history of cancer.

On the other hand, every year, I ask my doctor for a fasting glucose tolerance test, and she tells me that on my last routine blood workup my fasting blood glucose was normal and refuses to order the test.  (This year she offered to do another fasting BG, which I declined.  I know my FBGs are OK.)  She acts thus even though I have several risk factors for diabetes, including a family tree absolutely riddled with diabetes.

What happened to early detection?  Is my doctor guilty of malpractice?

Not really, at least not by any standard that would be acceptable in a court of law.  My doctor’s practice is part of a giant teaching hospital affiliated with one of the most prestigious medical schools in the country, and furthermore, this hospital is the home of one of the leading diabetes programs in the country.  And, according to my doctor, the hospital’s definition of diabetes is two consecutive FBGs above a certain number (which is, I think, 126 but may be higher.  I wish I’d written it down).  My FBGs are always well below 100, so no concern about diabetes is indicated.

My doctor is not being negligent; she’s following well-established diagnosis guidelines.

The thing is, I think she’s right and she’s wrong at the same time.  FBGs are a sufficient indicator of full-blown diabetes.  They are just lousy as an early detection standard.

The National Diabetes Information Clearinghouse indicates that the glucose tolerance test is more sensitive for diagnosing pre-diabetes than FBGs.  And the simple reason one would want to diagnose pre-diabetes, according to the same organization, is:

In pre-diabetes, blood glucose levels are higher than normal but not high enough to be characterized as diabetes. However, many people with pre-diabetes develop type 2 diabetes within 10 years. Pre-diabetes also increases the risk of heart disease and stroke. With modest weight loss and moderate physical activity, people with pre-diabetes can delay or prevent type 2 diabetes.  (Source:  National Diabetes Information Clearinghouse.)

It’s all about early detection, kiddos.  The Massachusetts General Hospital Diabetes Unit says, “High levels of glucose are toxic to beta cells, causing a progressive decline their function and cell death.  Consequently, many patients with type 2 diabetes eventually need insulin.”  You don’t have to be Aristotle to derive the syllogism here - those with pre-diabetes who do not receive a diagnosis can expect their beta cells to become poisoned by their high blood sugar levels, eventually leading to full-blown diabetes and possibly even dependence on insulin injections.  Why wouldn’t one of the premier diabetes centers in the country want to detect this early?

I have a lot of ideas about why, most of them sinister:

  • The GTT is more expensive than the FBG, and doctors, who are paid by insurance companies, have an incentive to save money.
  • Doctors don’t know that lifestyle changes can reverse pre-diabetes.
  • Doctors do know that lifestyle changes can reverse pre-diabetes, but, misinformed as to what those changes are, prescribe ineffective low-fat diets.  After years of seeing patients fail to reverse diabetes on low-fat diets, doctors give up on lifestyle changes.
  • Doctors not only know that lifestyle changes can reverse pre-diabetes, they even know that carbohydrate restriction is the way to go.  But doctors don’t believe that patients can make and stick to such “drastic” lifestyle changes as giving up bread.
  • The research hospitals that set the guidelines for diagnosis and treatment are funded in great part by pharmaceutical companies, and therefore have an incentive to recommend a course of action that results in a medication-dependent population.

To be fair, Jenny at Blood Sugar 101 (formerly called What They Don’t Tell You About Diabetes) offers a somewhat more benign explanation:

  • Decades ago, when diabetes treatment was less sophisticated, a diabetes diagnosis was not only a death sentence, it would prevent a patient from getting insurance or even a job.  Since it was thought that nothing could be done to reverse elevated blood sugars, early diagnosis was worthless and could cause financial problems for a patient.  It was deemed a kindness to delay diagnosis as long as possible.  (See Jenny’s article here for lots of fascinating information.)

The drug and insurance company problems seem tough to solve without a gigantic social upheaval.  But surely our doctors can do better!  Doctors do push back on ordering expensive tests, and patient advocacy organizations do lobby Congress to make insurers pay for certain kinds of tests.  It would be the rare insurance company that fails to pay for routine Paps, mammograms, colonoscopies, etc., even though some of these tests are rather pricey, much pricier than a GTT.  And surely doctors can shed the fatalist attitude - sure, many patients would rather jab themselves with insulin than give up their donuts, but that does not mean that every patient would.  I myself grew up watching my mother inject herself with insulin first once a day, then up to four times a day, and even though she became very callous (pun intended) about it, and even though I can submit quite stoically to needles in a doctor’s office, I am too chicken to inject myself.  Anything I can do to avoid that necessity, I will do.  I am surely not the only patient out there who would rather give up bread than poke a needle into my thighs several times a day!

Why don’t doctors give us choices?

It’s all in the presentation.  A doctor can say, “There’s nothing I can do for you but give you a drug,” because he assumes that the patient wants a quick fix.  Or a doctor can say, “I can give you a drug, or you can give up your favorite foods; your choice.”  Or a doctor can say, “I can give you a drug, but if I do that you are going to need more and more medication as time goes on; you will experience side effects that might be bothersome or even dangerous, and it will cost you a lot of money; or you can follow a diet that requires you to give up some foods you might currently enjoy a lot, but it offers you a lot of other delicious, nutritious foods; the diet will keep your condition in check for a long time without side effects, and it may cost you a bit more than what you spend on food now, but it’s cheaper than drugs.”

One more thing - when I was corresponding with my HR department about the company’s support of the American Diabetes Association, he mentioned that he’d personally talked with a number of employees who had been astounded by their diabetes diagnosis, since they’d had no indications whatsoever they were on that path.  Astounded!  Didn’t these folks have the right to know where they were heading, and the right to make a choice on how to proceed based on scientifically sound information?

And finally, if you’re not sick of this topic, please check out this post on Jenny’s Diabetes Update blog.  (Yes, this is the same Jenny who brought you Blood Sugar 101.)  Read the post comments, too.)

8 Comments »

  1. It’s possible to “pass” a glucose tolerance test even if you routinely have postprandial blood sugars that are high enough to do serious damage over time.

    A few years ago I wasn’t feeling well, and asked my doctor to check my fasting blood sugar. It was 99, which was normal, she said. Nevertheless, I still suspected diabetes, and wasn’t inclined to be reassured by one isolated measurement of fasting glucose. I decided to do my own home-brew glucose tolerance test.

    I bought a glucose meter and test strips at a drugstore, and a bag of dextrose (glucose) at a health food store. After an overnight fast I dissolved 75 grams of glucose in water, checked my blood sugar, and quickly drank all of the glucose solution. I took blood sugar readings every 15 minutes for the first two hours, then half-hourly for another two hours, at which point I had to quit because my hands were shaking so badly from hypoglycemia that I could no longer insert the strips in the meter.

    And the result was normal! My blood sugar at two hours was 115, well under the 140-200 range that supposedly defines impaired glucose tolerance. Yep, that may be all you get with a screening glucose tolerance test — two measurements, one at baseline and one at two hours. If I’d had that sort of test at a lab, I would never have known that my blood sugar peaked at just under 200 at the 30-minute mark, then plunged well below baseline at 2.5 hours. I might have gone on for years with undetected postprandial hyperglycemia.

    A “normal” glucose tolerance test can be worse than none at all. Anyone who suspects blood sugar problems should get a meter and test the effects of the foods they habitually eat. If the results are not truly normal (never higher than about 125 after a carb-rich meal, and back to baseline [but not below] by about 90 minutes), take action.

    Comment by Jen — January 31, 2008 @ 10:24 pm

  2. Jen - that’s scary. I have also heard stories of people whose tests were not done right, including people whose doctors had specifically ordered insulin levels checked, but the lab “forgot” to do them. But checking insulin levels is important because it helps gauge how well the pancreas works.

    Thanks for stopping by and sharing your story!

    If you’re still reading, can I ask a question? What are you doing about your hyperglycemia? Did you see a doctor? Did you change your diet? I’m still ambivalent about whether I should do the test, whether I should share the results with my doctor, and whether I should keep nagging at her to order the GTT …

    Comment by psipsina — February 1, 2008 @ 8:44 pm

  3. My doctor appeared to take seriously the results of my DIY glucose tolerance test. She suggested weight loss, of course, and offered me a prescription for metformin (which I declined.)

    Taking it for granted that expert recommendations were based on solid and settled science, I resolved to lose weight and control my blood sugar with the universally acclaimed low-fat, low-calorie diet. I stuck with it for a couple of months even as my sugars worsened, figuring that all those experts couldn’t possibly be wrong. Eventually I abandoned that faulty premise and switched to a paleo/low-carb way of eating, which quickly lowered my fasting glucose and eliminated the excessive post-meal peaks. I did lose a significant amount of weight, but found that that oft-recommended panacea had little or no effect on my fasting sugars and glucose tolerance.

    Should you follow my dreadful example and self-administer a GTT? Good heavens, no, because you’re taking Inderal and you might experience a dangerous episode of hypoglycemia — a fact I heartily wish I had remembered earlier.

    As to whether you should have the test at all, even with medical supervision, I’d ask what you hope to learn from it that would be to your benefit. Experimentation with a glucose meter and actual foods may yield more useful information. Insulin levels might be interesting, but would knowing them lead you to change anything?

    Comment by Jen — February 3, 2008 @ 1:00 am

  4. Thanks, Jen - much food for thought. I bought a glucometer months ago with the intention of doing a GTT, but I haven’t been able to bring myself to do it. I keep asking myself that very question - would I change anything if, as I suspect, I had an early spike followed by a nasty hypoglycemic episode? In reality, I limit the amount of glucose I put into my body already; a bad test result would be uncomfortable and possibly dangerous and would only confirm me in my current course. So I’m leaning against it. Maybe I’ll just keep testing my BG randomly, as I do now (about once a week I do either a fasting or a postprandial or usually both), and adjust my carb consumption further downward or eliminate specific foods if my BGs start to creep up.

    I love your comment about weight loss! I don’t think weight loss causes blood sugar normalization - I think blood sugar normalization causes weight loss!

    Comment by psipsina — February 3, 2008 @ 1:39 pm

  5. May I jump in here? I agree with Jen, self-testing your post meal glucose levels will be the most useful DIY information for you, since a lab or a DIY GTT may be more trouble than it is worth in your situation. And Jen is right, depending on how out of whack a glucose metabolism is, GTT results are not always cut-and-dried (btw, GTTs are done in 2, 3, 4, & 5 hour versions and docs don’t always order the right length for the most useful result).

    I’m one of those people who administered a self 3hr GTT with a glucometer and went to my doc with my concerns (to be fair, it was my first annual exam with him but I had an 11 yr history with that same network that he could easily see my past history). I had a history of gestational diabetes 9 years before (my only pregnancy) so I was statistically at high risk, but other than a warning to watch my weight and yearly FBG, nothing else was done to monitor it (my SIL in Norway had GDM and she gets a yearly GTT). He was sure I was wrong (my labs looked so good to him - high normal range for FBG high normal, 5.5% A1c, 22 BMI, etc.) but that is because I basically already treat it myself with a low carb diet (but even with low carbs everything is in high normal, not low or mid-range whichis suspicious to me). But I insisted and persisted, so he humored me with a 3 hrGTT and insulin levels, later apologizing when he reported the results to me (I already knew the approx BG results because I simultaneously self-tested during the GTT - with greater frequency and more accurate time intervals than the lab, too).

    One downside of doing it all yourself is that you have to pay out of pocket for your test strips. I did that for about 6 months, and used a lot of strips to get a good idea of what was happening - later cutting down when it became more predictable. When I finally saw an endo, I asked for an Rx for the strips to bring my cost down.

    But I had to carefully weigh whether bringing this to my doc’s attention was worth the potential downfall compared to monitoring this by DIY - now my health record has enough abnormal BG stuff on it that if I ever need to get an individual health insurance policy, I might be uninsurable. I mulled this over for a while and finally decided that I would risk that because I didn’t want to DIY it completely and miss something, like ongoing beta cell deterioration. And who knows what will happen with health insurance in the future anyway. My prior gestational diabetes might already be enough to make me uninsurable.

    Since I already knew my BG regulation was out of whack, I really wanted to know what was happening with my insulin, which I can’t self-monitor. The lab was supposed to do insulin simultaneously with the BG, and I even asked at every half hour blood draw. But they didn’t. The llab only reported fasting (normal) and at 3 hours (elevated higher than normal). And the endo I saw later said that even though elevated, my insulin should have been higher at 3 hours for the amount the BG went up initially, so that indicated some inadequacy in insulin production to him.

    I do think knowing insulin levels is useful, though. At least determining a baseline can indicated if there is deterioration of insulin production over time. Also, it is possible to achieve normal or nearly normal BG levels, but the beta cells might be cranking out excessive insulin, especially if carb intake is high. But if even moderate amounts of carbs stimulate excessive insulin, that is good to know, too. Hyperinsulinemia is not a good thing to have long term.

    So I’ve seen two endos and they both say “continue doing what you are doing” (they aren’t really interested in the details of my low carb ways) because I can achieve mostly normal BG ranges this way. That’s fine, because I want to avoid medications as long as possible and one of the hazards of involving a doc is he/she might want to treat something in a way I *don’t* want to do. But I was really surprised that neither endo I have seen had interest in pursuing *why* my glucose metabolism is impaired (though they both are surprised, because my weight is pretty much ok - I guess they still only associate anything non-Type 1 as typically due to obesity). There may be insurance issues that hinder further investigation. It clearly is all about glucose numbers to them. Good BG numbers are their goal, not knowing why. No investigation or assessement to see if there is any damage already (I’m now quite sure I had high blood sugar for several years before I had gestational diabetes due to some symptoms and constant minor health problems that went away or lessened on low carb. Next eye exam I’ll mention it to that doc to make sure. I’m just told to come back to the endo in 6 months. I guess they’ll look for deterioration over time, ha ha (not really funny though, huh?).

    I’m sure one factor hindering *truly* early detection is that insurance doesn’t want to find out about it early. Our insurance seems to change on average about every three years, sometimes even yearly, because my husband’s employer gets a better bid from another company and switches to save money. So why would any insurance company have an incentive to spend a lot of money now to detect the potential for diabetes early, provide regular monitoring with a doctor, visits with a diabetes educator/dietician and glucose test strips, when the payoff (not developing diabetes or delayed/less advanced development) is perhaps decades later and another insurance company is responsible for coverage then?

    Comment by Anna — February 4, 2008 @ 1:42 pm

  6. Fasting levels are useless for diagnosing diabetes unless your levels are high. With my history of gestational diabetes, I asked my doc to check my glucose levels every year for many years. She only tested my fasting level and it was always under 100.

    After having sinus surgery, I gained a lot of weight very quickly (without overeating) and couldn’t recover my strength and health. I finally tested myself after eating and found my BGL was hitting almost 300! Yet my fasting level was still under 100. That’s when I insisted on an OGTT to document my findings.

    Since following the ADA’s “diabetic diet” is what led me straight to diabetes, I switched to low carb and lost 50 lbs the first year. I now weigh around 120 lbs and my last A1c was 4.9 from sticking to a low carb lifestyle for the past 5 years.

    Comment by DAR — February 9, 2008 @ 2:52 am

  7. As I said in another post, I strongly encourage you to test. If you are a diabetic, and you know it, you will do an even better job taking care of yourself than you are now.

    If you have concerns about your current meds making you go low, just cut them out for a few days before the test (assuming that they don’t require tapers, etc.).

    I’ve done this test maybe four times over the years. It’s well worth doing.

    Comment by itsme — February 9, 2008 @ 3:25 am

  8. I have seen a study (on pubmed, I think) indicating that a FBG >= 95 was when a OGTT was most likely to give a statistically correct result. I hope I am I am expressing that thought clearly. (jetlag.)

    That said, I agree there is an enormous amount to be learned from testing on your own, For example, my father has been losing weight and improving his A1c via CHO restriction. But w/o testing, he would never have given up small 2/3 c servings of mushrooms (Bernstein Diabetes Diet) because they are a low cho food. But when he eats them, the meter rises too far, according to the very helpful info pages at http://www.bloodsugar101.com.

    Comment by PSW — February 24, 2008 @ 10:25 pm

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