For the past few weeks, for some reason, my email box has been full of letters from people who are desperately hoping that they have diabetes. They don't. In fact, most of them have blood sugar numbers you and I would kill for. When I explain this, they come back saying, "But my mother had diabetes" or "But when I ate an entire chocolate cake my blood sugar rose a whole 30 points. And my fasting blood sugar the next day was 98. That can't be normal!"
Before you dismiss these people as garden variety hypochondriacs, let me explain what's going on.
All these people do have something wrong with them--usually something quite painful or very disturbing. They've been to doctor after doctor who have given them the usual ten minutes of bored attention and then sent them off with a shake of the head or an order for lab tests that come back, almost invariably, with normal values, usually because they are ordering only the standardized tests that turn up the most common medical problems.
So these people email me because they are desperate. They're in pain. Their symtoms are making it hard to go about their daily lives. They've been trolling the internet, scanning for anything that mentions these symptoms, looking for relief, and invariably they end up reading about diabetes because diabetes causes such a wide variety of symptoms. Tiredness, painful feet, stomach pain, ulcers, blurred vision, kidney pain. You name it, someone with diabetes will develop it and post about it somewhere.
So that is why when these people who need help read that doctors do a very poor job of diagnosing diabetes a light goes off in their minds and suddenly they're filled with hope. Maybe that is what is wrong with them, diabetes, and if it is, then there's hope, because once they have a diagnosis they can treat it.
So they email me and I send them off to test their blood sugar, and almost always, when they respond, I have to deliver the news that their blood sugars are completely normal. Whatever is wrong with them, it isn't an obscure, difficult-to-diagnose case of diabetes. Their fasting sugars are under 100 mg/dl. Their sugars don't go over 120 mg/dl after meals. Diabetes is not likely to be causing their symptoms.
You'd be amazed how many people find this upsetting news. They write back to me begging me to consider this or that extra fact. Maybe it isn't diabetes but pre-diabetes. Maybe they hadn't eaten enough carbs when they tested their sugars to be sure. They went low on their glucose tolerance test, isn't that a sign of something?
When I tell them, no, it isn't. They can get testy. I get tempted to tell them to go away because there are dozens of people with diabetes who also need help, and they are taking up my time, but I don't. Because I've been in their shoes--trying to get help for some devastating symptom that doctors wouldn't take seriously and checking out anything that sounds like it might help. I know what a poor job most doctors do diagnosing anything that isn't one of the 85 common conditions they studied in med school.
But there isn't much I can do for them, and I also tell them that whatever is wrong with them, they should rejoice that they don't have diabetes. Because as most you reading this know, even after they diagnose it, most doctors do a lousy job of treating diabetes.
But taking in all these people's miserable experience with doctors who won't diagnose painful conditions, and adding in my own experience with the same, I have to wonder: Why is it that the most sophisticated artificial intelligence systems in the world are devoted almost exclusively to delivering spam that is tailored to your tastes, instead of helping you find out what's wrong with you so you can fix it?
Don't all answer at once. I know it isn't quite that simple.
But if you are one of the masses of people with uncommon, painful, worrying conditions, don't give up. Keep reading and researching. Eventually you may come up with something that should point you in a good direction, and even if you can't go back to your doctor--or a new one, preferably young, recently trained, still enthusiastic, and hungry for new patients, and demand the tests you need to sort out what is going on with your body.
8 comments:
IBM's Watson (of Jeopardy-winning fame) is being repurposed as a medical diagnostic tool, and I imagine it'll do it very well (if given good input.)
I suspect the main reason that Google and other database-interfacing experts haven't offered serious tools is fear of legal liability in the case of mis-diagnosis.
Sadly, the "It's someone's fault and I'm gonna sue!" paradigm that's prevalent in the US and, increasingly, the rest of the world stifles many interesting and valuable innovations.
Some of these searchers have food intolerances and the most likely one is gluten. Celiac is missed more often than not and non-celiac gluten sensitivity is just now getting on the average doc's radar.
The average time to diagnosis for celiac is down to "only" 7 years from 11. The internet has definitely contributed to this, in a messy and inefficient way.
I can understand why a person is disappointed when they don't have the disease they suspect. Eight years ago I was desperately seeking a reason for my very painful and rapidly progressing peripheral neuropathy. The docs told me I did not have diabetes. I found some papers linking gluten to neuropathy. When I was waiting for results of gluten antibody tests I was so fearful that the tests would be negative and I would be out of options to ever heal. As it turned out, my antibodies(Enterolab) were positive and removing gluten made a huge difference in my neuropathy symptoms.
After a few years gluten free I took another look at the OGTT I had when the doctor told me I did not have diabetes. The 2 hour spike was 202. Thanks to your advice, I bought a glucometer and found I could easily spike my BG over 200. The doc based his "no diabetes" diagnosis on my normal fasting level. I did not want diabetes. I was happy with gluten sensitivity. Sometimes there is more than one problem that needs to be addressed.
I agree with you Jenny, "keep reading and researching". Great advice.
I would say we can blame the internet for these self-diagnoses, much to the disappointment of people writing to you seeking an easy answer they'd like to call something, and diabetes seems like a good one to them. The reasons are complex, and doctors who are overburdened to spend more than 15 minutes with a patient (because they're paid by the total number of patients they treat) is partially at fault, as is inadequate treatment for the symptoms these people have. The only advice you really can share with them is to tell them to keep reading and researching, but I would add: DEMAND SUFFICIENT TIME WITH YOUR DOCTORS TO GET THE CARE YOU DESERVE AND THE ANSWERS YOU'RE ENTITLED TO.
Unfortunately, many people don't have the education or mental capacity to understand research at the level it takes to be able to figure things out on their own. That's why we pay doctors huge amounts to do that for us.
And once you get outside of a big city, finding a new doctor can be impossible. I live in a rural region where many doctors have closed their practices to new patients and others are retiring.
Another huge problem is that many insurance plans limit access to specialists so you can only see one if the family practitioner gatekeeper recommends you. If he's getting paid more the less specialists he recommends, which many are, it can be impossible to see the kind of doctor who can diagnose an uncommon condition.
We really need a system where medical care is managed like any other technical discipline rather than as a priesthood trained along medieval lines that creates artificial scarcity by limiting the number of people it allows into the priesthood to keep the salaries high.
In Florida, it can take several months to get in to see a psychiatrist no matter if you are severely depressed. There are several family doctors you can go to in our small town, but I don't trust them. Except for an older doctor who is semi-retired they don't really use their brains to diagnose. They just do standard tests and standard procedures. Too bad if it doesn't help you. They pretty much appear to be in it for the money with wellness being a possible, but unnecessary outcome. They have their favored money making tests to do. General practitioners used to either diagnose and treat whatever problem you had or if it was beyond their knowledge they would refer you to a specialist. Now they seem to offer certain treatments for some conditions, but if that doesn't cover it, they ignore it or tell you to go to the emergency room at a hospital.
I think we would get better diagnoses from some kind of computer program than from most doctors nowadays, since most doctors don't use their brains for diagnosis anyway.
I sure can understand being desperate for a diagnosis, because at least then an illness could hopefully be treated. I have felt that way.
Information from the Bloodsugar101 site and other health blogs and sites have helped me get better. This site has helped me figure out how to handle the diabetes and other sites have helped me begin to figure out some other health problems. Having access to information on the Internet allows me to have hope, and hope is a very important thing.
Eight years to be diagnosed with Lupus, despite a strongly positive ANA and plenty of symptoms. Thirty three years to get the right diabetes diagnosis (T1 not T2), with an antibody test I had to fight for. You can find the odd good doctor in Australia, willing to play detective, but generally we're going the way of the USA in the way described. In the last place I lived, doctors appointments were every 15 minutes. Now that I live in an area with more people, they're every 10 minutes - just enough time for the doctor to take your blood pressure (mine has always been normal), half listen to what you're saying, and write a script. Shocking! Last time I asked him for a Fructosamine test because I'd made some changes in my pump settings, which I explained. I walked out with a request for an A1C, which had been done prior to the changes I'd made, so I'd totally wasted my allotted 10 minutes. It's not even worth looking for a new family doctor - I hear it's much the same around these parts.
Sooz,
How frustrating! Does the squeaky wheel get the grease in that situation? If you call and say, "There was some mistake, the doctor wrote a script for the A1c when we'd discussed the fructosamine test, can you fix this" will someone get on it?
If not, then you must write a nice fancy looking letter, so that a paper trail is started. That is often like waving the garlic at the vampire. No one in the office wants to get in trouble if there's a paper trail involved.
But yes. It shouldn't have to be like this--but it is.
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