7 ms·

So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?

jokowueu 7y ago
No it's not, adrenal fatigue is when you cant produce enough hormones primarily cortisol What he has is "bilateral adrenal medullary hyperplasia. In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline."
- amelius 7y ago
  But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
  - robbiep 7y ago
    I imagine we have received the crib notes of this story. He was able to improve his condition by being on a permenant norad infusion, which is something we only do in hospitals to critically ill patients who are having a hard time keeping their blood pressure in any normal range. Generally, norad is a shorter acting version of adrenaline that acts on a slightly different hierarchy of the same receptors. If it was as simple as ‘too much’ adrenaline, I suspect some benefit effect would have been seen by beta blockers. Maybe there is, maybe that’s one of the 9 medications he takes every day. Worth noting also that a condition that dumps way too much adrenaline into the body, phaeochromocytoma, is often an incidental finding; so this obviously presents differently despite having (simplistically, from the article) the same type of mechanism. We don’t have all the information we need to make inferences from this particular article
  - techdragon 7y ago
    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 due to skipping something they didn’t think of. This is why I always tell people who are unsatisfied with the handling of their medical problems to get a second opinion, a third opinion, as many opinions as it takes. If your doctor says they don’t know why something hurts... ask another one. At some point you should press for referring to a specialist... even if it’s a damn psychiatric specialist because they think it’s in your head... when they check you’re not crazy, that’s one less excuse they have for ignoring your problems. That’s what this person did here. Eventually the only opinions left were the ones they had to dig up on their own. Sometimes this path even involves researching new (or old/forgotten/misunderstood) but at the end of the day this is how hard it is to understand how the body actually works. It’s one of the reasons I’m so thankful for my reasonably good health. There’s a nearly infinite number of ways the body can be broken or damaged, the fact is we only understand a small part of the most common things that go wrong and can fix an even smaller number of the things we do understand. Edit to pre-empt criticism of affordability of this approach: I live in Australia where we have public healthcare so everyone can see a doctor (or twelve) without being driven into bankruptcy.
    - khuey 7y ago
      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.
      - amelius 7y ago
        I suppose you rule out false positives by determining whether the combination of measurements could explain the symptoms.
tomhoward 7y ago
In some cases this could be a diagnosable and treatable cause of the kind of illness that often gets described as "adrenal fatigue". I have some experience with this topic, having spent at least 13 years in that category of people who is ill in a way that mainstream medicine can't really diagnose or treat - and in a way that has parallels with the symptoms described in this article (though not nearly as severe or debilitating). The idea of "adrenal fatigue" and "adrenal insufficiency" has come up a lot in the self-directed research I've done, but only among complementary/alternative practitioners like naturopaths and chiropractors. It's not really a medical way of thinking about things - i.e., "your adrenal glands must be tired because you've been too busy/stressed". It's not something you can test for or address with medical treatment - which is why people who go down that path end up undertaking 'holistic' treatment approaches like diet, supplements, exercise, emotion-based therapies, etc, with varying degrees of success. But there are plenty of people I've come across, particularly in communities of people who diagnosed with, or presumed as having "Chronic Fatigue Syndrome", who suffer without any improvement for many years despite trying every conceivable remedy, whose condition may well be explained by what is described in this article, or by something comparably obscure, relating to the adrenals or other parts of the autonomic nervous system.
- rubyfan 7y ago
  I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most of my Saturday and Sundays. Struggling during the week, just enough energy to get myself to work and back to crash at night. Eventually dropping exercise altogether. Along the way I started feeling weak, shaky and would have almost tremors in my body. I had read about adrenal stress at the time and suspected it might be an issue. It’s hard to tell what’s related but I eventually developed prostatitis, a few rounds of cipro and no help. Then almost a year later some pretty severe digestive issues developed and they thought I had Crohn’s disease, then hospitalized due to reaction to medicine. Then kidney stones, gallstones, gallbladder removed. The last few years have been hard but so many people have it worse. After the gallbladder removal I’ve finally starting to feel meaningfully better, digestive significantly better and prostatitis issues resolved. I don’t work out like I used to, I’ve had times that I try to get into a running regime but eventually I start to feel sick and pain around my kidneys. I’m able to do extended hours of yard work and be outside for long hours. I’m lucky that my health appears to be coming back. I have no idea the ultimate root cause of all this but I’m counting my blessings. When I read about stories like this, it’s inspiring and relatable. When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues. It’s disheartening and easy to lose faith in the medical system.
0xcde4c3db 7y ago
No. Adrenal fatigue is little more than alt-med jargon for what the average HNer would call burnout. The invocation of adrenal dysfunction is, to put it politely, poetic license.
- elliekelly 7y ago
  That’s a bit harsh. While I agree that adrenal fatigue and other catch-all diagnoses used by “alternative medicine” aren’t based in science I do think we need to have an open mind and consider the possibility that people are dealing with an actual medical issue that we simply haven’t isolated/identified yet. To casually dismiss a person’s symptoms as all in their head is just as dangerous as trying to treat their symptoms with alt-med hocus pocus.
  - 0xcde4c3db 7y ago
    I agree completely. There is absolutely a real need here, but alternative medicine is exploiting it instead of addressing it.

No it's not, adrenal fatigue is when you cant produce enough hormones primarily cortisol What he has is "bilateral adrenal medullary hyperplasia. In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline."

amelius 7y ago
But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
- robbiep 7y ago
  I imagine we have received the crib notes of this story. He was able to improve his condition by being on a permenant norad infusion, which is something we only do in hospitals to critically ill patients who are having a hard time keeping their blood pressure in any normal range. Generally, norad is a shorter acting version of adrenaline that acts on a slightly different hierarchy of the same receptors. If it was as simple as ‘too much’ adrenaline, I suspect some benefit effect would have been seen by beta blockers. Maybe there is, maybe that’s one of the 9 medications he takes every day. Worth noting also that a condition that dumps way too much adrenaline into the body, phaeochromocytoma, is often an incidental finding; so this obviously presents differently despite having (simplistically, from the article) the same type of mechanism. We don’t have all the information we need to make inferences from this particular article
- techdragon 7y ago
  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 due to skipping something they didn’t think of. This is why I always tell people who are unsatisfied with the handling of their medical problems to get a second opinion, a third opinion, as many opinions as it takes. If your doctor says they don’t know why something hurts... ask another one. At some point you should press for referring to a specialist... even if it’s a damn psychiatric specialist because they think it’s in your head... when they check you’re not crazy, that’s one less excuse they have for ignoring your problems. That’s what this person did here. Eventually the only opinions left were the ones they had to dig up on their own. Sometimes this path even involves researching new (or old/forgotten/misunderstood) but at the end of the day this is how hard it is to understand how the body actually works. It’s one of the reasons I’m so thankful for my reasonably good health. There’s a nearly infinite number of ways the body can be broken or damaged, the fact is we only understand a small part of the most common things that go wrong and can fix an even smaller number of the things we do understand. Edit to pre-empt criticism of affordability of this approach: I live in Australia where we have public healthcare so everyone can see a doctor (or twelve) without being driven into bankruptcy.
  - khuey 7y ago
    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.
    - amelius 7y ago
      I suppose you rule out false positives by determining whether the combination of measurements could explain the symptoms.

tomhoward 7y ago

In some cases this could be a diagnosable and treatable cause of the kind of illness that often gets described as "adrenal fatigue". I have some experience with this topic, having spent at least 13 years in that category of people who is ill in a way that mainstream medicine can't really diagnose or treat - and in a way that has parallels with the symptoms described in this article (though not nearly as severe or debilitating). The idea of "adrenal fatigue" and "adrenal insufficiency" has come up a lot in the self-directed research I've done, but only among complementary/alternative practitioners like naturopaths and chiropractors. It's not really a medical way of thinking about things - i.e., "your adrenal glands must be tired because you've been too busy/stressed". It's not something you can test for or address with medical treatment - which is why people who go down that path end up undertaking 'holistic' treatment approaches like diet, supplements, exercise, emotion-based therapies, etc, with varying degrees of success. But there are plenty of people I've come across, particularly in communities of people who diagnosed with, or presumed as having "Chronic Fatigue Syndrome", who suffer without any improvement for many years despite trying every conceivable remedy, whose condition may well be explained by what is described in this article, or by something comparably obscure, relating to the adrenals or other parts of the autonomic nervous system.

rubyfan 7y ago
I’m curious what sort of stresses are thought to cause adrenal issues. Can they be environmental/situational vs. chronic hereditary? About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most of my Saturday and Sundays. Struggling during the week, just enough energy to get myself to work and back to crash at night. Eventually dropping exercise altogether. Along the way I started feeling weak, shaky and would have almost tremors in my body. I had read about adrenal stress at the time and suspected it might be an issue. It’s hard to tell what’s related but I eventually developed prostatitis, a few rounds of cipro and no help. Then almost a year later some pretty severe digestive issues developed and they thought I had Crohn’s disease, then hospitalized due to reaction to medicine. Then kidney stones, gallstones, gallbladder removed. The last few years have been hard but so many people have it worse. After the gallbladder removal I’ve finally starting to feel meaningfully better, digestive significantly better and prostatitis issues resolved. I don’t work out like I used to, I’ve had times that I try to get into a running regime but eventually I start to feel sick and pain around my kidneys. I’m able to do extended hours of yard work and be outside for long hours. I’m lucky that my health appears to be coming back. I have no idea the ultimate root cause of all this but I’m counting my blessings. When I read about stories like this, it’s inspiring and relatable. When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues. It’s disheartening and easy to lose faith in the medical system.

0xcde4c3db 7y ago

No. Adrenal fatigue is little more than alt-med jargon for what the average HNer would call burnout. The invocation of adrenal dysfunction is, to put it politely, poetic license.

elliekelly 7y ago
That’s a bit harsh. While I agree that adrenal fatigue and other catch-all diagnoses used by “alternative medicine” aren’t based in science I do think we need to have an open mind and consider the possibility that people are dealing with an actual medical issue that we simply haven’t isolated/identified yet. To casually dismiss a person’s symptoms as all in their head is just as dangerous as trying to treat their symptoms with alt-med hocus pocus.
- 0xcde4c3db 7y ago
  I agree completely. There is absolutely a real need here, but alternative medicine is exploiting it instead of addressing it.