Comment by sheepolog
1 day ago
It's been super eye-opening to me as an adult how frequent misdiagnoses are. I understand it's good for a doctor to sound confident, but "confidently wrong" is imo much worse than "cautiously wrong". We really need better imaging/diagnostic tools that cut down on human bias; hoping for a star trek tricorder someday.
> It's been super eye-opening to me as an adult how frequent misdiagnoses are.
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
"This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem."
In your example of MCAS, the solutions seems simple, do a blood test first, before really involving the specialist?
It’s a little more difficult because the blood test is supposed to be performed during a flare up, so it can be negative in an MCAS case if given at the wrong time.
Primary care doctors don’t want to gate the diagnosis so they’ll send the referral over and hope that the specialist will do the work of filtering out the likely and unlikely cases.
The everything-is-MCAS people on the internet use the fact that it can be negative at times in MCAS patients as a wedge to justify ignoring negative test results. In practice it’s not that hard to give someone a standing order for the test and have them get the blood draw when their symptoms flare.
As someone who is currently going through the diagnostic process for MCAS with a specialist:
A negative Tryptase blood test doesn't mean you don't have it, it could just be that you're not having an active flare-up at the time. So they also prescribe high doses of H1 and H2 blockers and then you report whether symptoms have improved across 2 or more organ systems after a few weeks.
I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.
Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also charge the doctors to use this screening process.
> and also charge the doctors to use this screening process.
Why would a doctor pay another service to order labs for them?
Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but likes the money. If someone opens a specialty clinic for an internet-popular disorder, they have a perpetual line of patients who will gladly pay for a doctor to tell them what they want to hear.
1 reply →
> Not to be a capitalist about it, but given the US health care system
Whats that supposed to mean? Most countries have private healthcare too. Sometimes it is as popular as public i.e. Australia 45% is private vs 55% in US.
2 replies →
[dead]
Yeah, I've had to fight to get medication that the doc insisted "doesn't work" - had to cite actual studies that showed blatant results showing effectiveness. The way society has this widespread "appeal to authority" built in around doctors drives me crazy, because they are treated as if they are the ultimate authority on health/medical, but are often woefully under-educated about specific subtle details that can end up being critical to the management/prognosis of a health issue.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
The part that doctors see that individuals don't is the flood of people who are chronically freaking out over nothing.
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
Right. For every example of a doctor missing a diagnosis, there 100 examples of that doctor correctly telling people that they are likely suffering from a temporary condition that will work itself out or not be resolved by any further testing or medicine.
All the more reason to have better diagnostic tools (not to mention faster imaging)! All humans are fallible; I hope one day diagnosis is the easiest part of a doctor's job.
You’re assuming a diagnostic test can be designed for 100% accuracy and this is not possible as disease states are spectrums not discrete categories.
“Normal ranges” in lab values are just confidence intervals of population means which by definition that some normal people will have abnormal values and some patients with a disease will have normal values.
The same is true for imaging. For example we use size criteria a lot. There is nothing different about 4.1 cm adrenal nodules and 3.9 cm nodules to explain why the former gets surgery and the latter gets called benign other than pre-test probability and acceptable false positive and false negative rates, whether this is measured by a human or AI.
3 replies →
[dead]
You do have to worry/wonder how many people are in psych hospitals, jail, or 6ft under when something like this might be the reason.