I get a lot of mail from people who read my "What They Don't Tell You About Diabetes" site. They have been to the doctor, but they have no idea what is going on with their health. Many of them, like me, are not overweight but have very high post-meal blood sugars, often into the mid 200 mg/dl range or higher. Some can't get any treatment at all, because their fasting bgs are near normal though after every meal they go way, way up.
Some are being put on drugs that aren't doing anything for their blood sugars and when that doesn't help, they're put on drugs that an educated doctor should know won't work for someone who has no response to the earlier drug. Some are being put on expensive new drugs that are not supposed to be given to people newly diagnosed and are not being given the cheap drugs with the long track record of safety that should be the first drug started. And others are put on 20 year old 70/30 insulin regimens which are giving them continual hypos but their doctors have never heard of basal/bolus insulin treatments!
What is the common thread here? It's pretty obvious: it's family doctors who don't consider diabetes a condition that requires the services of a specialist: Family doctors who have only a very rudimentary knowledge of diabetes. Family doctors who learned about diabetes 30 years ago in school and whose only education in diabetes care since then has been provided by the pretty ex-cheerleader drug company reps. And who, if the drugs they prescribe don't work, just shrug and send the patient away without answers--though with a hefty bill.
What these doctors do know seems to be mostly what are the latest, hottest, new drugs that have the highest profit margin for the drug companies. Not what those drug's real side effects are. Not which patients it is appropriate to prescribe these drugs for. And certainly not what much cheaper drug is much more likely to lower their blood sugar better.
And when it comes to the people who are not 300 lb Type 2s with a family history of Type 2, these doctors are more than clueless. I ran into this myself, when the doctor at Kaiser Northeast told me my 240 mg/dl blood sugars were "nothing to worry about" since my fasting bg was under 126 mg/dl. But that was 9 years ago. And yet, every day, I'm hearing from so many people who have clear cut signs of genetic diabetes or of early LADA (a slow form of autoimmune that strikes adults) and whose family doctors have never heard of either condition and have never suggested that they see a specialist.
This is scary.
These aren't people who are imagining they have something serious going on. One lady developed gestational diabetes several weeks into the pregnancy (as did I) not at the 5th month as is usual and is diabetic now, though not obese. Her doctor doesn't seem to know about MODY. Another is being told she is normal based on a 5.0% A1c but she had a very recent Glucose Tolerance Test with a blood sugar well 200 mg/dl 3 hours after the start of the test. Her doctor doesn't seem to know that anemia can make an A1c test result worthless. Someone else was diagnosed with a fasting bg over 300 and is not on medications, just self-treating with herbs.
I hear from thin people who have kids diagnosed as Type 1, parents diagnosed as Type 2, and whose doctors have never mentioned genetic diabetes to them when they show up with diabetic blood sugar. With that kind of family history, their child may not be a Type 1 at all, they might have one of the genetic forms of diabetes that can be treated with pills. But these family doctors don't know about genetic diabetes so they just tell them they're type 2 themselves, prescribe pills, and that's that. And then there are the people with the A1cs over 8% whose doctors tell them to watch their diet and give them no other treatment.
There's something wrong when a person like me, who isn't a doctor and doesn't particularly want to be a doctor, seems to know more about appropriate diabetes treatment--as defined by current practice standards set by the ADA, AACE and other professional organizations--than the family doctors who people rely on for treatment.
But if you wonder why the incidence of diabetic complications just keeps getting worse and worse, and why the typical American patient's A1c is worse now than it was 10 years ago (according to the NHANES study), well, there's your answer.
Family doctors who don't keep up with the details of diabetes treatment as provided by education sources OTHER than cute little drug company sales chippies really hurt a lot of people with diabetes!
May 11, 2007
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3 comments:
You have hit the nail right on the head (although I probably would have used the word uninformed instead of ignorant, just a minor quibble).
Your post completely describes what I have experienced. It was finding your website by fluke that tipped me off that I should have been more closely monitored after being diabetic while pregnant almost 9 years ago. One year ago., when I was 44 yo, I realized my PCP was missing or dismissing as "aging, get over it" all sorts of other obvious changes in my health (hypothyroid, pelvic prolapse, etc.) so I fired her, chose another PCP, fired her because she pushed antidepressants when what I needed was a higher dose of thryoid hormone. I now have a new PCP and am still getting to know him (he does has the most holistic view that I can find within my system and was recommended by all the nurses as the one they would send a family member to).
Since Dec. 1 I have been using a BG meter and testing with various foods and *know* that I have a glucose problem. But otherwise I have been following a low carb diet for about 3 years, so my weight and labs look great to a doc (BG & A1C are high end of normal, HDL is great, TRI are very low, only LDL is high). At my annual exam in March I expressed my BG concerns and told him about the metering. I'm sure he thought I was a hypochondriac, but eventually humored me and ordered the 3hrGTT. Then I pushed for an insulin test, too (that's what I really needed anyway because I can't test that myself). Well, he was shocked at the results (very abnormal) and referred me to a endo (which is good because I definitely don't think he has the expertise to treat me for this).
I've only had one appt with the endo, and as he is head of the bariatric medicine clinic and I am within 5 pounds of my ideal weight and have never been more than about 20 pounds overweight, I don't know yet if he has the right experience for my situation. My weight not an issue, I'm already fairly well-controlled with LC diet, but apparently even my high insulin levels were too low for the high BG levels during the GTT (insulin insufficiency), so he said that indicates beta cell loss. Later I re-read your MODY page and that looks likely, but he hasn't mentioned that yet (he said it was puzzling, I didn't fit "the profile" and he wouldn't have suspected it before the GTT, either). That first appt was over too fast for me to get my thoughts and questions together and actually interview *him* for the job.
I can't get anyone in my family to get themselves checked further, yet I think they show the same tendencies. My mother, an OB nurse, says she's never heard of "normal" BG levels as low as I quote. My mother and one sister are all terrified of CVD because of their high cholesterol. Even though they are more mindful of their carbs than in the past, they can't get over the "low fat" mindset. Their doctors say they are fine and just need to control their cholesterol. Clearly, their doctors are the ones you reference in your post! Any my family has *always* eaten as much whole grains as refined (as have I until LC). I'm sure they view me as Chicken Little running around yelling about glucose levels rising. I try to be a voice of reason, but of course, not everyone wants to hear not all is well and change is needed. And I suppose it is a scary thought indeed to realize that your trusted PCP is in the dark about such important health issues.
Echoing a commenter on your earlier post about whole grains, you provide a wealth of information for people who care to be informed and involved in their health. Having such up-to-date, credible, and well-referenced all in one spot saved me so much time and effort while I was hunting for information. I am extremely grateful for your generosity in sharing your experiences and expertise. I can't even imagine how many people are healthier for it. If you have a favorite charity, I wish you would post it. I'd be happy to make a donation in your name in appreciation.
Cheers,
Anna
Anna,
Thanks for the very kind words about my sites.
MODY diabetes is something very few doctors know about at all, and that includes some endocrinologists. And those who have heard of it, still think of it as a very rare syndrome only occurring in people whose parents have been diagnosed with severe diabetes, which genetic studies have shown is not the case.
I also suspect that there are quite a few other genetic causes of diabetes that aren't officially MODY but which cause an insulin sensitive insulin deficiency form of diabetes in thin people, which gets missed because it only affects the post-meal blood sugars until middle age or late middle age, where the natural weight gain of middle age makes it look like obesity-related type 2 when it isn't.
If doctors put people on insulin early, it would be quickly evident that there were these non-insulin resistant people around. But since they save insulin for people with fasting blood sugars in the 200s, they don't.
You also seem to describe me. I am in my late 20's. 4 pregnancies all with insulin dependent GD--diagnosed the first time with blood sugars in the 200's and diagnosed as early as my 6th week of pregnancy during my 3rd pregnancy. I am thin--never weighed more than 125lbs when not pregnant.
Every 6 months I have fasting blood test and an A1C at my request. The A1C ranges from 5.5-5.7% and the fasting blood sugar has been 99-138. My doctors tell me I am fine and don't want to pursue this. When I purchase test strips and test at home after regular meals I am always over 140-200.
Something is going on and I refuse to believe I should just sit around and wait for me to happen.
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