5 ms·

The core issue is that the system is just not good at catching outliers, and the only conceivable way to do so would be incredibly wasteful and expensive. For

The core issue is that the system is just not good at catching outliers, and the only conceivable way to do so would be incredibly wasteful and expensive. For every case of "It took 8 doctors over the course of 3 years to get a diagnosis" there are 5000 cases of "It took 1 doctor on one visit to get a diagnosis"

belmarca 2y ago
And "outliers" aren't necessarily exotic. Idiopathic disease isn't rare and difficult to diagnose.
- Gibbon1 2y ago
  The problem is the fat tail of rare conditions is really wide because their are thousands of them. Say there are 500 rare conditions with a rate of 2 per 100k per year. That means one out of 100 patients will develop one of those 500 in a given year.
tivert 2y ago
> The core issue is that the system is just not good at catching outliers, and the only conceivable way to do so would be incredibly wasteful and expensive. But in this case, I don't think it would be "incredibly wasteful and expensive." The case study stated, "On her ED visits, she was discharged with the diagnosis of alcohol intoxication, despite her reports of no alcohol intake, corroborated by her family." She didn't need some expensive diagnostic test for a diagnosis, she needed a doctor to pay attention to what she and her family were saying.
- shermantanktop 2y ago
  And to disregard their previous experience with high-functioning alcoholics who deny everything when they mess up. I’d bet there’s a lot more hidden day-drinkers out there than patients like this. As someone with a relatively obscure condition, I’ve gotten used to being the pachinko ball that falls straight down the diagnostic chart to the wrong conclusion. But I understand the numbers are against me.
  - encoderer 2y ago
    Yes. High functioning alcoholics are not checking themselves into the emergency room 9 times over a year.
  - monkeyfun 2y ago
    Should doctors never trust their patients? What's the threshold for where doctors should begin to believe their patients' claims, as opposed to simply assuming they're merely some drug addict seeking another hit or someone lazy seeking time off work? I'm someone who's specifically had GI doctors ignore what I say so intensely as for this conversation to have seriously taken place: Me: "The [medication] might have worked, I feel slightly better, but it was way too strong. I had nearly all the major side effects that the instructions said to contact you if I get them. Is there any smaller dose, or could I try out something else?" GI Specialist: "Ok, so would you like me to increase the dose? I can prescribe [double]." Edit: meant to conclude that I think it's not just excessive distrust, and that it'd be absurd and cruel to just always distrust patients completely -- that doctors definitely seem to ignore patients heavily, especially if they're in any way abnormal.
    - s1artibartfast 2y ago
      Doctors are human. how did the rest of conversation go? did you explain that they misunderstood what you said? Also, Did you consider just taking half the dose?
      - hooverd 2y ago
        They can't be human too and make oopsie whoopsies with no repercussions while demanding unlimited deference from society.
        s1artibartfast 2y ago
        What is this "unlimited deference" you speak of? I dont think doctors should be elevated to some super-human status. They are human. Many of them do a tricky and socially useful job, but there is nothing magic about it or them.
- DoreenMichele 2y ago
  Women get dismissed a lot by doctors. (This is common enough knowledge I'm not going to provide citations in spite of being a woman posting on an overwhelmingly male forum. If you downvote this without doing a quick google: There's your problem.) When I was a homemaker and having serious health issues, I sometimes wore a suit to see a medical professional to try to get them to take me more seriously. I used to bitch to friends that I felt like pinning a list of my academic achievements to my lapel. "Oh, it's a homemaker. Must be stupid! Couldn't possibly have been a good student in school! Smart women all have serious careers." Yeah, sure. That's reality./s
  - wing-_-nuts 2y ago
    If 200 people presented with alcohol intoxication and no history of use, 199 would be secret alcoholics sneaking booze, and maybe 1 would be someone with this condition. The previous case I read about, they forced the poor guy to inpatient for weeks to rule out alcohol use. It's not just 'doctors don't believe women' it's 'doctors don't believe (probable) addicts'.
    - roxya 2y ago
      Yeah, as a man nobody would believe me either. I was in hospital with acute pancreatitis and they found at the same time I had a fatty liver. Both are often explained by heavy alcohol intake. The truth is I hardly drank at all (I had perhaps had a single bottle of beer in the whole previous 12 months) but nobody would believe me. I ended up being told to never drink alcohol again.
      - rvnx 2y ago
        Did you find a solution eventually ?
        roxya 2y ago
        Not really. Since then I've been unable to eat bananas due to a severe bloated feeling (even a tiny bite causes it), and I found a Japanese research paper about a banana allergy inducing acute pancreatitis. But I don't know for sure if it's linked. I've continued to drink alcohol in moderation for another 15 years+ without issue.
- s1artibartfast 2y ago
  And that is the tradeoff. 99.999% of the time the person is lying, confused, or crazy. I doubt it was lack of attention, but lack of trust instead.
  - op00to 2y ago
    You get much further with crazy people by not directly challenging them.
unsupp0rted 2y ago
I'd like to watch a hidden camera reality show in which people try to convince doctors to take their conditions seriously. Meet Amanda- will she be able to convince Doctor #3 that she's not a secret alcoholic?
colechristensen 2y ago
I don't really think it's about catching outliers. With doctors it's about catching anything that isn't obvious. If you've broken a bone or have a tumor or one of the standard tests comes back out of range, their job is easy. If you haven't they're completely useless and will prescribe either an SSRI or a stimulant. Very many people have very many conditions that aren't trivial to diagnose and just get ignored. It's not because they can't, it's because they're not interested and resources aren't organized enough to be able to give the appropriate amount of attention to a person.
bigbacaloa 2y ago
[dead]
zdp7 2y ago
The thing is it wouldn't have been expensive to test. In the article they describe the testing they did after they treated her for auto-brewery syndrome. The gave her an oral administration of glucose and then observed her alcohol levels. It would lead me to believe a pretty easy means to diagnose auto-brewery would be to check BAC, give them glucose and then retest BAC. If it goes down they at the very least aren't currently suffering from auto-brewery. If it goes up, that would be a pretty strong indicator they are suffering from it. Have an orderly or nurse observe to verify no alcohol was consumed if you want.

belmarca 2y ago

And "outliers" aren't necessarily exotic. Idiopathic disease isn't rare and difficult to diagnose.

Gibbon1 2y ago
The problem is the fat tail of rare conditions is really wide because their are thousands of them. Say there are 500 rare conditions with a rate of 2 per 100k per year. That means one out of 100 patients will develop one of those 500 in a given year.

tivert 2y ago

> The core issue is that the system is just not good at catching outliers, and the only conceivable way to do so would be incredibly wasteful and expensive. But in this case, I don't think it would be "incredibly wasteful and expensive." The case study stated, "On her ED visits, she was discharged with the diagnosis of alcohol intoxication, despite her reports of no alcohol intake, corroborated by her family." She didn't need some expensive diagnostic test for a diagnosis, she needed a doctor to pay attention to what she and her family were saying.

shermantanktop 2y ago
And to disregard their previous experience with high-functioning alcoholics who deny everything when they mess up. I’d bet there’s a lot more hidden day-drinkers out there than patients like this. As someone with a relatively obscure condition, I’ve gotten used to being the pachinko ball that falls straight down the diagnostic chart to the wrong conclusion. But I understand the numbers are against me.
- encoderer 2y ago
  Yes. High functioning alcoholics are not checking themselves into the emergency room 9 times over a year.
- monkeyfun 2y ago
  Should doctors never trust their patients? What's the threshold for where doctors should begin to believe their patients' claims, as opposed to simply assuming they're merely some drug addict seeking another hit or someone lazy seeking time off work? I'm someone who's specifically had GI doctors ignore what I say so intensely as for this conversation to have seriously taken place: Me: "The [medication] might have worked, I feel slightly better, but it was way too strong. I had nearly all the major side effects that the instructions said to contact you if I get them. Is there any smaller dose, or could I try out something else?" GI Specialist: "Ok, so would you like me to increase the dose? I can prescribe [double]." Edit: meant to conclude that I think it's not just excessive distrust, and that it'd be absurd and cruel to just always distrust patients completely -- that doctors definitely seem to ignore patients heavily, especially if they're in any way abnormal.
  - s1artibartfast 2y ago
    Doctors are human. how did the rest of conversation go? did you explain that they misunderstood what you said? Also, Did you consider just taking half the dose?
    - hooverd 2y ago
      They can't be human too and make oopsie whoopsies with no repercussions while demanding unlimited deference from society.
      - s1artibartfast 2y ago
        What is this "unlimited deference" you speak of? I dont think doctors should be elevated to some super-human status. They are human. Many of them do a tricky and socially useful job, but there is nothing magic about it or them.
DoreenMichele 2y ago
Women get dismissed a lot by doctors. (This is common enough knowledge I'm not going to provide citations in spite of being a woman posting on an overwhelmingly male forum. If you downvote this without doing a quick google: There's your problem.) When I was a homemaker and having serious health issues, I sometimes wore a suit to see a medical professional to try to get them to take me more seriously. I used to bitch to friends that I felt like pinning a list of my academic achievements to my lapel. "Oh, it's a homemaker. Must be stupid! Couldn't possibly have been a good student in school! Smart women all have serious careers." Yeah, sure. That's reality./s
- wing-_-nuts 2y ago
  If 200 people presented with alcohol intoxication and no history of use, 199 would be secret alcoholics sneaking booze, and maybe 1 would be someone with this condition. The previous case I read about, they forced the poor guy to inpatient for weeks to rule out alcohol use. It's not just 'doctors don't believe women' it's 'doctors don't believe (probable) addicts'.
  - roxya 2y ago
    Yeah, as a man nobody would believe me either. I was in hospital with acute pancreatitis and they found at the same time I had a fatty liver. Both are often explained by heavy alcohol intake. The truth is I hardly drank at all (I had perhaps had a single bottle of beer in the whole previous 12 months) but nobody would believe me. I ended up being told to never drink alcohol again.
    - rvnx 2y ago
      Did you find a solution eventually ?
      - roxya 2y ago
        Not really. Since then I've been unable to eat bananas due to a severe bloated feeling (even a tiny bite causes it), and I found a Japanese research paper about a banana allergy inducing acute pancreatitis. But I don't know for sure if it's linked. I've continued to drink alcohol in moderation for another 15 years+ without issue.
s1artibartfast 2y ago
And that is the tradeoff. 99.999% of the time the person is lying, confused, or crazy. I doubt it was lack of attention, but lack of trust instead.
- op00to 2y ago
  You get much further with crazy people by not directly challenging them.

unsupp0rted 2y ago

I'd like to watch a hidden camera reality show in which people try to convince doctors to take their conditions seriously. Meet Amanda- will she be able to convince Doctor #3 that she's not a secret alcoholic?

colechristensen 2y ago

I don't really think it's about catching outliers. With doctors it's about catching anything that isn't obvious. If you've broken a bone or have a tumor or one of the standard tests comes back out of range, their job is easy. If you haven't they're completely useless and will prescribe either an SSRI or a stimulant. Very many people have very many conditions that aren't trivial to diagnose and just get ignored. It's not because they can't, it's because they're not interested and resources aren't organized enough to be able to give the appropriate amount of attention to a person.

bigbacaloa 2y ago

[dead]

zdp7 2y ago

The thing is it wouldn't have been expensive to test. In the article they describe the testing they did after they treated her for auto-brewery syndrome. The gave her an oral administration of glucose and then observed her alcohol levels. It would lead me to believe a pretty easy means to diagnose auto-brewery would be to check BAC, give them glucose and then retest BAC. If it goes down they at the very least aren't currently suffering from auto-brewery. If it goes up, that would be a pretty strong indicator they are suffering from it. Have an orderly or nurse observe to verify no alcohol was consumed if you want.