Bedridden for 11 years, he discovered a surgery for his adrenal condition • Hacker News Board

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#81

Post by azinman2 » Sat, Jul 27, 2019, 6:00 PM UTC

vladus2000 wrote: post #69

I went through an annoyance with my vision. I ended up having two separate conditions (well a total of 5 things were wrong with my eyes, but two acive major ones and two that will eventually cause more surgery later but aren't a big deal yet and one that was minor), but because the first one seemed like it was causing the problems, it took me almost a year to find and get real treatment for my issues so I could be ab…

If it’s rare then most doctors probably ignored it for that very reason. The intern, not “knowing better,” likely thought about it as they recently learned about it.

Why distrust doctors when it was a doctor (in training) that discovered it, and it took other doctors to treat it?

Uncommon things are a blind spot for most medicine, just like they are in other fields as well. For example, in CS rarely do we ever expect a compiler or OS or libc bug, but they do happen.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#82

Post by azinman2 » Sat, Jul 27, 2019, 6:03 PM UTC

DataWorker wrote: post #48

IAmGraydon wrote: post #41

Earlier quoted context omitted.

Personal anecdote, but I’ve been tested for elevated adrenaline on 2 occasions just from complaining of facial flushing. Sometimes this will even be tested in a yearly physical. Surely, over a decade of interacting with doctors would have led him to this common test.

Where do they do yearly physicals? You must not have hmo coverage.

Where don’t they in the developed world? I’m confused by your comment.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#83

Post by DangitBobby » Sat, Jul 27, 2019, 6:16 PM UTC

joshgel wrote: post #59

> Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline. This is incorrect. norADRENALINE is a more specific version of ADRENALINE made in different part…

From a patient perspective, it's pretty believable. They don't know what's wrong after the typical battery of tests, so it's incurable or you're making it up.

I've also had an experience where I basically told the doctor

>I am tired all the time, I sleep 12-16 hours a day and still wake up feeling completely unrested, and it seriously affects my ability to do my school work and live my life

and his response was (to paraphrase)

>you just need exercise, fatty

For context, I was in my late teens at this point, and a few pounds overweight by the medical definition.

Long story short, after many expensive visits with psychiatrists, we learn that anti-depressants didn't help because I wasn't depressed.

I finally did a sleep study, and it was sleep apnea. A sleep disorder.

This sounds ridiculous, right? As an outsider looking in, it's so obvious. But this actually happened to me, and I am sure it happens to thousands of patients all of the time.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#84

Post by DangitBobby » Sat, Jul 27, 2019, 6:25 PM UTC

Mc_Big_G wrote: post #55

Doctors were baffled. Treatments didn't help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself. This applies to almost any health problem you might encounter in the US. It's rare to find a doctor who actually cares and even more rare to find one that will dig deep to help you. One of the greatest lies ever told is that you can trust your doctor and that there isn't more…

I hate to say it, but I think that having someone in a clinical setting that serves as a patient rep (like a doctor lawyer) that the doctor is actually interested in listening to could be helpful. The biggest issue is patients don't know what's important to say, and doctors don't have the time or patience to probe the patient for enough details.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#85

Post by TheOtherHobbes » Sat, Jul 27, 2019, 6:33 PM UTC

Foober223 wrote: post #62

fiblye wrote: post #61

Earlier quoted context omitted.

I’ve got a relevant experience to back this up. I had a urinary tract infection that I felt progress up to my bladder and eventually into one kidney and then the next. I would’ve liked to visit a doctor immediately, but with American medical costs being what they are and hospitals advising me to hold out a few more days until a doctor in my insurance network was available, I’d hoped that small stinging pain down ther…

Some doctors are idiots. No different than people in any other profession.

Some doctors are idiots. Some doctors are only in it for the money. Only a small proportion of the people who qualify have any genuine deep-seated urge to help fix human suffering.

When doctors get it wrong, people die. Anyone who genuinely does care about human suffering is going to find that difficult.

But a lot of patients are idiots too. For every educated more-or-less self-aware middle class professional a doctor sees, there are tens of patients who are old, confused, angry, hostile, lonely, unable to look after their own welfare in more or less obvious ways, or just plain dumb - and barely able to understand what their problem is, never mind explain it.

So it's not an easy profession - not because doctors have to be unusually competent to do it, but because they deal with all kinds of people with all kinds of problems in all kinds of situations, and it's normal for many of those people to be very bad at being able to explain why they're there.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#86

Post by salex89 » Sat, Jul 27, 2019, 6:40 PM UTC

Wow... Just wow. My girlfriend is a internal medicine specialist student and she was blown away. As she read she basically went through a ll possible explanations that the other doctors had. However she actually knew about this condition, it is extremely rare but not unheard of. Possibly because of cases like this she learned about them, but she said she would never connect that to something looking so neural, it is expected for it to induce cardiological issues.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#87

Post by busyant » Sat, Jul 27, 2019, 6:53 PM UTC

barkingcat wrote: post #31

IAmGraydon wrote: post #26

I don’t understand why it took so long for him to get this diagnosis. Elevated adrenaline levels are easily tested for in a simple catecholamine blood test. That test is among the basic panel done when one sees an endocrinologist. It may not have pinpointed his adrenal medulla as the problem, but it should have pointed them in that general direction very early on.

Because doctors in the western medicine tradition don't always accept a patient's symptoms at face value. The person in the story got referred to psychiatry because medicine didn't believe him. Similarily, many legit medical disorders are discounted as not real symptoms by western medicine until decades later, for example, lyme disease, which is caused by a real organism with a real transmission pathway (ticks), with…

Why are you using the word "western" here?

Are non-"western" healthcare practitioners exempt from biases and prejudicial opinions?

I think it's fair to say that, like all humans, healthcare practitioners may have prejudicial opinions on healthcare matters that can lead to erroneous diagnoses. The western ones don't have a monopoly on this behavior.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#88

Post by salex89 » Sat, Jul 27, 2019, 6:55 PM UTC

nullwasamistake wrote: post #68

This guy seems crazy. There's a million things they can give you for energy so you don't lay in bed all day. Also, the hell is he choosing to lay in bed over sitting in a nice comfy chair? The only reason bedridden people are in beds is to make it easy to roll them over and hook them up to machines. This guy didn't need either. It doesn't take a decade to discover adrenal gland issues, I think this guy is a basket ca…

Are you sure you read that properly? Maybe it is not clear from the text, but basically adrenal gland malfunction which result in hyperproduction of adrenaline literally burn you up.

Hormone disbalance in general can mess you up seriously. I have a female friend which had all sorts of health issues. Bringing hormone levels under control (not hormones themselves but the causes) helped her become a new person and liven up. She might even consider having kids now. She is still under all sorts of therapies, but it is not trivial to relate causes and effects, her case not being even remotely mistic. Imagine when the direct cause is a rarely problematic hormone, provoked by an even more obscure issue.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#89

Post by uberduber » Sat, Jul 27, 2019, 7:34 PM UTC

TheOtherHobbes wrote: post #85

Foober223 wrote: post #62

Earlier quoted context omitted.

Some doctors are idiots. No different than people in any other profession.

Some doctors are idiots. Some doctors are only in it for the money. Only a small proportion of the people who qualify have any genuine deep-seated urge to help fix human suffering. When doctors get it wrong, people die. Anyone who genuinely does care about human suffering is going to find that difficult. But a lot of patients are idiots too. For every educated more-or-less self-aware middle class professional a docto…

This. Essentially doctors go through 12+ years to work retail. Many people get an education just so they don't have to work with retail customers.

Also, it has gotten worse. Before the ACA there used to be a barrier where to see a doctor you essentially either had a job or money which would weed out a lot of the nuts.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#90

Post by amelius » Sat, Jul 27, 2019, 7:37 PM UTC

khuey wrote: post #35

techdragon wrote: post #29

Earlier quoted context omitted.

Simple... why would the endocrinologist check for that? Much of modern medicine is “I see A with B, so I test for C, maybe D and E. Once your out of stuff you can think to test for modern medicine doesn’t start throwing tests at the wall to see what sticks... it shrugs its shoulders and gives up. Now sometimes this is good (hypochondria + psychosomatic problems) but sometimes this is bad... failure to get a diagnosis…

The problem with "just throwing tests at the wall" is that every test has a false positive rate. For rare diseases like this (~30 documented cases ever!) even tiny false positive rates will lead to significant over-diagnosis.

I suppose you rule out false positives by determining whether the combination of measurements could explain the symptoms.