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Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors

Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore the most likely to have openings. What worked for us was finding a primary care doctor who was recommended by others, even if the wait for a new patient appointment was measured in months or years. From there, the PCP was used as a pivot point to get to specialists who knew what they were doing and as a contact point for basic medication management. Letting PCPs try to manage complex conditions is a mistake, IMO. I should mention that this failure mode isn't unique to American medicine. The same dynamic plays out in many countries and indeed in many industries beyond medicine. Getting into the experts who know what they're doing is hard because they're in the highest demand. Getting into below-average providers of any profession is always easy because they're not buried under referrals and people knocking on their door.

treeman79 4y ago
Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.
- PragmaticPulp 4y ago
  They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results. Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe. Be careful out there.
  - aksss 4y ago
    This is my experience. They can be good emotional support resources but often develop an orthodoxy unsupported by science and enforced through shaming/berating (e.g. people with lupus shouldn’t drink orange juice or supplement with vitamin C, and similar nonsense). My advice is read all you can to thoroughly understand what’s happening to you - The Lupus Book by Dr. Wallace, The Lupus Encyclopedia by Dr. Thomas are two great compendiums and candidates for Kindle. Then find support resources that look at the condition as something that can be and should be managed, eschewing the mesmerizing appeal of self-pity and one-upsmanship with symptoms. The fact is that managing lupus puts a higher priority than normies have on diet, fitness, sleep, mental and physical stress management, and UV exposure. Ordering your own blood work - understanding the tests that are valuable and how to diagnose results is also a good practice for taking charge of your condition - i.e. what are the early warning signs that my kidneys may be “silently” failing; what are my baseline CBC numbers, specifically white blood cells, and can I provide those to a GP/PCP on the fly; etc. Social media, I found, doesn’t really advance what is mostly a solo journey to preserve function through daily mental and physical discipline. However, another thing I’ve come to appreciate is that most (healthy) people don’t enjoy listening to stories about medical problems, and if you just need to tell your story and get some brief positivity and empathy, online groups can fill that need.
  - treeman79 4y ago
    Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety. Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions. People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay
    - H_Pylori 4y ago
    - deleted 4y ago
      [deleted]
  - 4y ago
- JTbane 4y ago
  Sounds like a great place for hypochondriacs to hang out.
  - treeman79 4y ago
    This is a very hateful stance.
    - aksss 4y ago
      Being critical is not being hateful. The fact is that a lot of online support groups get a weird mix of people - people who actually have the clinical diagnosis, people who feel they may be on the road to a diagnosis, people that want to imagine they would get the diagnosis, people who can't get the diagnosis but figure the system is aligned against them for whatever reason, friends/relatives of people with the diagnosis, etc. I always find it weird that some people "want" to have a chronic medical condition or be perceived as one who does - and I've met them. Hypochondriacs show up, that's a fact, Jack.
  - cameronh90 4y ago
    You're not wrong, but why are they exhibiting hypochondria? These sorts of disorders are complex and multifaceted. Yes, many people on these subreddits are hypochondriacs, by definition, but you can find them coalescing there, buying placebos, going to chiropractors, functional medicine doctors, naturopaths and reading sketchy journals because they've been told they're fine by doctors. However, it's blatantly obvious they are not fine, because if they were fine, they wouldn't be experiencing those symptoms. They may not be ill in the way they think they are, but they are not well. Doctors are too ready to write off patients as worried well, but sometimes it turns out those symptoms are due to a real physical issue, and it can take years of fighting the system to find a solution. We're increasingly seeing that autoimmune, neurological, gastrointestinal, hormonal and other types of issues can cause issues across the whole body as well as directly triggering psychological disorders. Often these disorders are not even known to GPs who haven't kept up to date since leaving medical school. A patient with no history of mental health issues presents with sudden health anxiety and panic disorder out of nowhere, is it a primary mental health disorder or is there another underlying issue (psychological or physical) that's brought it on? You can't know unless you take their complaint seriously and properly investigate, but doctors are under time pressure and keen to just write it off as anxiety disorder and stick the patient on the antidepressant treadmill. Other times, it is purely psychological or somatic, but so what? Mind and body health are intimately tied together. When one starts to deteriorate, the other often follows. Take some Zoloft and go for a walk may be a quick and convenient answer, it may even work a lot of the time, but evidently there are many, many people who find it unhelpful. Rather than looking at alternatives, some doctors will just try and say the same things over and over until the patient gives up. Then we wonder why people give up on modern, science-based healthcare and get roped into less scientific disciplines. Modern medicine is one of the greatest achievements of human civilization, but many doctors seem to have forgotten that you're treating the patient, not the disease.
actually_a_dog 4y ago
I have to say that this is exactly why I like having Kaiser as my health insurance. Because Kaiser is also my healthcare provider, if I need to see a specialist, all it takes is a referral from my PCP or any specialist I'm currently seeing, and it's done. And, they practice evidence-based medicine to the extent that's possible, which means that treatment decisions tend to be pretty reasonable. My PCP refers out whenever there's anything outside her expertise. I know it sounds like a massive conflict of interest to have one's physician working for one's insurance company, but, somehow, it really seems to work and work well, bypassing those failure modes you mentioned entirely. I've gotten in to see specialists within a matter of a couple of weeks whenever I've needed it.
- sprucely 4y ago
  I wish I had your experience with Kaiser. I've hit that conflict of interest multiple times. Most recently, after going through triage and waiting six weeks for an appointment, and after half way through it with [specialist], I learn that they're actually not the specialist I thought I was getting and just performing triage. This person lacked even basic knowledge on the topic, and none of the classes or groups she can find actually address the issue in question. When our time is almost up she finally decides to lookup a specialist. There's only one available with only one date available in another couple months. But she's only looking in one geographical region because she doesn't have access to data for the other region that can also serve us. If I book this appointment, she informs me I won't be able to find another specialist in the other region because a patient can be assigned to only one specialist. So it seems data actually is integrated across Kaiser's "regions", but only so far as to support their bottom line.
  - dekhn 4y ago
    Kaiser doesn't have a "bottom line" to support. North and South Kaiser are two completely different orgs, but they both use the same EHR technology and can move records between them with no real friction.
    - sprucely 4y ago
rendaw 4y ago
How do you get doctor recommendations? How do you know that the recommender was able to properly evaluate the care they received (especially in the presence of not yet solved issues like back pain, and non-issues like "sometimes my nose gets stuffed up" which goes away regardless of what the doctor does)?
josu 4y ago
Heuristics That Almost Always Work (...) The Doctor She is a primary care doctor. Every day, patients come to her and says “My back hurts” or “My stomach feels weird”. She inspects, palpates, percusses and auscultates various body parts, does some tests, and says “It’s nothing, take two aspirin and call me in a week if it doesn’t improve”. It always improves; no one ever calls her. Eventually, she gets sloppy. She inspects but does not palpate. She does not do the tests. She just says “It’s nothing, it’ll get better on its own”. And she is always right. She will do this for her entire career. If she is very lucky, nothing bad will happen. More likely, two or three of her patients will have cancer or something else terrible, and she will miss it. But those people will die, and everyone else will remember that she was such a nice doctor, such a caring doctor. Always so reassuring, never poked and prodded them with needles like everyone else. Her heuristic is right 99.9% of the time, but she provides literally no value. There is no point to her existence. She could be profitably replaced with a rock saying “IT’S NOTHING, TAKE TWO ASPIRIN AND WAIT FOR IT TO GO AWAY”. (...) https://astralcodexten.substack.com/p/heuristics-that-almost-always-work?s=r https://astralcodexten.substack.com/p/heuristics-that-almost...

treeman79 4y ago

Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.

PragmaticPulp 4y ago
They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results. Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe. Be careful out there.
- aksss 4y ago
  This is my experience. They can be good emotional support resources but often develop an orthodoxy unsupported by science and enforced through shaming/berating (e.g. people with lupus shouldn’t drink orange juice or supplement with vitamin C, and similar nonsense). My advice is read all you can to thoroughly understand what’s happening to you - The Lupus Book by Dr. Wallace, The Lupus Encyclopedia by Dr. Thomas are two great compendiums and candidates for Kindle. Then find support resources that look at the condition as something that can be and should be managed, eschewing the mesmerizing appeal of self-pity and one-upsmanship with symptoms. The fact is that managing lupus puts a higher priority than normies have on diet, fitness, sleep, mental and physical stress management, and UV exposure. Ordering your own blood work - understanding the tests that are valuable and how to diagnose results is also a good practice for taking charge of your condition - i.e. what are the early warning signs that my kidneys may be “silently” failing; what are my baseline CBC numbers, specifically white blood cells, and can I provide those to a GP/PCP on the fly; etc. Social media, I found, doesn’t really advance what is mostly a solo journey to preserve function through daily mental and physical discipline. However, another thing I’ve come to appreciate is that most (healthy) people don’t enjoy listening to stories about medical problems, and if you just need to tell your story and get some brief positivity and empathy, online groups can fill that need.
- treeman79 4y ago
  Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety. Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions. People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay
  - H_Pylori 4y ago
  - deleted 4y ago
    [deleted]
- 4y ago
JTbane 4y ago
Sounds like a great place for hypochondriacs to hang out.
- treeman79 4y ago
  This is a very hateful stance.
  - aksss 4y ago
    Being critical is not being hateful. The fact is that a lot of online support groups get a weird mix of people - people who actually have the clinical diagnosis, people who feel they may be on the road to a diagnosis, people that want to imagine they would get the diagnosis, people who can't get the diagnosis but figure the system is aligned against them for whatever reason, friends/relatives of people with the diagnosis, etc. I always find it weird that some people "want" to have a chronic medical condition or be perceived as one who does - and I've met them. Hypochondriacs show up, that's a fact, Jack.
- cameronh90 4y ago
  You're not wrong, but why are they exhibiting hypochondria? These sorts of disorders are complex and multifaceted. Yes, many people on these subreddits are hypochondriacs, by definition, but you can find them coalescing there, buying placebos, going to chiropractors, functional medicine doctors, naturopaths and reading sketchy journals because they've been told they're fine by doctors. However, it's blatantly obvious they are not fine, because if they were fine, they wouldn't be experiencing those symptoms. They may not be ill in the way they think they are, but they are not well. Doctors are too ready to write off patients as worried well, but sometimes it turns out those symptoms are due to a real physical issue, and it can take years of fighting the system to find a solution. We're increasingly seeing that autoimmune, neurological, gastrointestinal, hormonal and other types of issues can cause issues across the whole body as well as directly triggering psychological disorders. Often these disorders are not even known to GPs who haven't kept up to date since leaving medical school. A patient with no history of mental health issues presents with sudden health anxiety and panic disorder out of nowhere, is it a primary mental health disorder or is there another underlying issue (psychological or physical) that's brought it on? You can't know unless you take their complaint seriously and properly investigate, but doctors are under time pressure and keen to just write it off as anxiety disorder and stick the patient on the antidepressant treadmill. Other times, it is purely psychological or somatic, but so what? Mind and body health are intimately tied together. When one starts to deteriorate, the other often follows. Take some Zoloft and go for a walk may be a quick and convenient answer, it may even work a lot of the time, but evidently there are many, many people who find it unhelpful. Rather than looking at alternatives, some doctors will just try and say the same things over and over until the patient gives up. Then we wonder why people give up on modern, science-based healthcare and get roped into less scientific disciplines. Modern medicine is one of the greatest achievements of human civilization, but many doctors seem to have forgotten that you're treating the patient, not the disease.

actually_a_dog 4y ago

I have to say that this is exactly why I like having Kaiser as my health insurance. Because Kaiser is also my healthcare provider, if I need to see a specialist, all it takes is a referral from my PCP or any specialist I'm currently seeing, and it's done. And, they practice evidence-based medicine to the extent that's possible, which means that treatment decisions tend to be pretty reasonable. My PCP refers out whenever there's anything outside her expertise. I know it sounds like a massive conflict of interest to have one's physician working for one's insurance company, but, somehow, it really seems to work and work well, bypassing those failure modes you mentioned entirely. I've gotten in to see specialists within a matter of a couple of weeks whenever I've needed it.

sprucely 4y ago
I wish I had your experience with Kaiser. I've hit that conflict of interest multiple times. Most recently, after going through triage and waiting six weeks for an appointment, and after half way through it with [specialist], I learn that they're actually not the specialist I thought I was getting and just performing triage. This person lacked even basic knowledge on the topic, and none of the classes or groups she can find actually address the issue in question. When our time is almost up she finally decides to lookup a specialist. There's only one available with only one date available in another couple months. But she's only looking in one geographical region because she doesn't have access to data for the other region that can also serve us. If I book this appointment, she informs me I won't be able to find another specialist in the other region because a patient can be assigned to only one specialist. So it seems data actually is integrated across Kaiser's "regions", but only so far as to support their bottom line.
- dekhn 4y ago
  Kaiser doesn't have a "bottom line" to support. North and South Kaiser are two completely different orgs, but they both use the same EHR technology and can move records between them with no real friction.
  - sprucely 4y ago

rendaw 4y ago

How do you get doctor recommendations? How do you know that the recommender was able to properly evaluate the care they received (especially in the presence of not yet solved issues like back pain, and non-issues like "sometimes my nose gets stuffed up" which goes away regardless of what the doctor does)?

josu 4y ago

Heuristics That Almost Always Work (...) The Doctor She is a primary care doctor. Every day, patients come to her and says “My back hurts” or “My stomach feels weird”. She inspects, palpates, percusses and auscultates various body parts, does some tests, and says “It’s nothing, take two aspirin and call me in a week if it doesn’t improve”. It always improves; no one ever calls her. Eventually, she gets sloppy. She inspects but does not palpate. She does not do the tests. She just says “It’s nothing, it’ll get better on its own”. And she is always right. She will do this for her entire career. If she is very lucky, nothing bad will happen. More likely, two or three of her patients will have cancer or something else terrible, and she will miss it. But those people will die, and everyone else will remember that she was such a nice doctor, such a caring doctor. Always so reassuring, never poked and prodded them with needles like everyone else. Her heuristic is right 99.9% of the time, but she provides literally no value. There is no point to her existence. She could be profitably replaced with a rock saying “IT’S NOTHING, TAKE TWO ASPIRIN AND WAIT FOR IT TO GO AWAY”. (...) https://astralcodexten.substack.com/p/heuristics-that-almost-always-work?s=r https://astralcodexten.substack.com/p/heuristics-that-almost...