"The Alienated Patient" - Julian Galt MD

Mij

Senior Member (Voting Rights)
Left Behind by Modern Medicine

Julian Galt, MD

"Modern medicine has produced a vast and growing class of patients with chronic, unexplained symptoms. They are everywhere. I encounter them daily in the ER, and they are easy to find on social media, where whole communities have formed to share grievances and trade theories. These patients are not malingerers. They are genuinely suffering. Yet, the structure of medicine today leaves them stranded, repeatedly told what they do not have while receiving little help in discovering what they do.

Their episodes are uncomfortable but not immediately dangerous. They dutifully see their primary care physician, who, reluctant to miss something catastrophic, refers them to the emergency department. There, a battery of tests is ordered: blood work, imaging, an electrocardiogram. The physician expects these studies to be negative, and they usually are. Occasionally, two or three values stray just beyond the arbitrary limits of “normal.” An albumin slightly elevated. A relative eosinophil count slightly low. These anomalies are clinically meaningless, yet they appear in the patient’s electronic record, flagged with red exclamation marks.

The doctor tells the patient that the results are “reassuring” and may even summarize them as “normal.” What the patient hears is something altogether different. They see flagged results on MyChart, but hear from the doctor that everything is fine. To them, this feels like dismissal or even dishonesty. They believe their symptoms are real and are unsettled by the presence of abnormalities on objective tests. When told there is no emergency, they interpret the message as “nothing is wrong with you.” They leave not reassured but alienated . . .

This cycle repeats. The patient returns to their primary care office, where liability concerns again often dictate referral to the emergency department. Once more, the ER performs its ritual exclusion of life-threatening pathology. Each time, the patient is told that no emergency exists. Each time, the patient hears that their suffering has no cause and deserves no explanation. Their visits multiply. Their frustration grows.

Over time, the patient’s medical record accumulates dozens of encounters. Emergency physicians opening the chart let out a sigh before they enter the room. They see a long trail of “negative workups,” innumerable phone calls, and the note that this individual is a “frequent flyer.” The patient’s symptoms remain unexplained, but now their chart contains a new label: “difficult patient . . ."
 
I've been called delightful too. And, apparently, when patients ask doctors about it, they always say it just means what it says. As a typical non-trusting patient, of the type mentioned in the linked article, I think this is BS.

...

One of my pet theories for many cases of undiagnosed health issues is the problem of hugely wide reference ranges for lots of different tests. For example, the last time I had my ferritin level checked the reference range was 30 - 332 micrograms/L.

This suggests to me that a doctor seeing such a reference range would tell me that a result of 30 or a result of 332 or anything in between are all "fine" or "normal" - and are effectively "the same". This, in my opinion, is absolute nonsense.

I've seen lots of results for ferritin from the USA where doctors tell (mostly female) patients that results of 4 or 6 (I can't remember the units of measurement) are "close enough" to the reference range and don't need treatment.

And a final comment that I've said before...

If A has disease X and good nutrient levels they will most likely feel better than B who also has disease X but low levels of nutrients, even if improving nutrients is not going to cure disease X.
 
I've seen lots of results for ferritin from the USA where doctors tell (mostly female) patients that results of 4 or 6 (I can't remember the units of measurement) are "close enough" to the reference range and don't need treatment.

I saw a new GP in 1996 who asked if I was vegetarian b/c my ferritin was at 5, I told her no, then she went on to tell me that a low number is only seen in vegetarians. I told her I eat liver cooked in cast iron skillets but she didn't believe me I guess. She told me to take iron, and when I saw her 6 weeks later, she said my ferritin should be higher and she'll start looking at 'other possibilities'. When I asked what other possibilities, she said, well I told you to take x2 tablets a day (which I did). It can take up to 9 months to increase ferritin up to 50. I saw her one more time after that and was fortunate to find another GP.

Two years ago my province changed the ref range for ferritin. Results less than 30 µg/L for adults (≥18 years of age) will be flagged as low, 51 – 100 µg/L indicate a possible iron deficiency.
 
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Modern medicine has produced a vast and growing class of patients with chronic, unexplained symptoms
Uh, fairly sure medicine has not "produced" any such thing. What an absolutely bizarre framing. And reading the rest that was quoted here, I mostly see someone who has a very small and narrow perspective on this, and has never been open to hearing from those experiencing it because he doesn't find it valuable, so nothing worth reading.

I can smell the doctorsplaining steaming from the screen.
 
Uh, fairly sure medicine has not "produced" any such thing. What an absolutely bizarre framing. And reading the rest that was quoted here, I mostly see someone who has a very small and narrow perspective on this, and has never been open to hearing from those experiencing it because he doesn't find it valuable, so nothing worth reading.

I can smell the doctorsplaining steaming from the screen.

I thought the author of that piece was being sympathetic to patients who'd been dismissed/disbelieved. I didn't think he thought the undiagnosed were all hypochondriacs or attention seekers.
 
Patients do not want the disease but many do want the specific diagnosis, because they have become convinced online that this is their diagnosis. In many cases the diagnosis is not accurate".
Too many clinicians look at anything online as bad. Some of it is. Some is good and even valuable.

Relative to many of the diagnoses arrived at online not being accurate, same can be said about clinical diagnoses made by doctors. This truism is amplified when inadequate diagnostics are in play - which in our world is commonplace.

Clinicians need to get over themselves, especially when they venture into contested disease waters.
 
"The main issue is that if patients don’t actually have these diseases, the workup is concluded prematurely. They obviously have some explanation for their symptoms, it’s not good to stop at the wrong one and investigate no further.

That’s aside from the risks of wrong treatment or other tests that wouldn’t be indicated if the patient didn’t have this history, for example CT angiograms exposing the patient to ionizing radiation, which we wouldn’t do if the patient didn’t have any risk factors, but you label them as having a collagen disorder and now it appears that they do.

In short I think it’s important to correctly diagnose people."
 
"The main issue is that if patients don’t actually have these diseases, the workup is concluded prematurely. They obviously have some explanation for their symptoms, it’s not good to stop at the wrong one and investigate no further"

This strikes me as over-the-top optimistic as to what actually happens in most cases that involve diseases such as ours. We are the proverbial hot potato; no one wants shit to do with us. And even if they sincerely look, their diagnostic protocols usually fall short and fail us.

The main issue is NOT if patients don't actually have some disease. The main issue is we frequently can't say definitively one way or the other. We are left in limbo. We'd be better served by a Magic 8 ball.

We are forever being kicked to the curb and the refrain from these losers is "what if they don't have what some say they might." This is medical sleight of hand.

But they are concerned for us. Oh, the poor dears. The dilemmas they are forced to deal with.
 
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The main issue is NOT if patients don't actually have some disease. The main issue is we frequently can't say definitively one way or the other.

I disagree. In these cases we can say quite simply that these people do not have these diseases. That is what is being discussed. Whether this is 'the main issue' is irrelevant.

It is interesting to see this now being discussed openly on social media. And those making the point are clearly expressing compassion for patients caught up in the misinformation.
 
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I disagree. In these cases we can say quite simply that these people do not have these diseases. That is what is being discussed. Whether this is 'the main issue' is irrelevant.
Please allow me to make a small but important distinction: In some of these cases we can quite simply state that these people do not have these diseases. In many others that cannot be claimed.

And if you are on the receiving end of crap diagnostics, and a lack of meaningful treatments because of those appallingly poor dx protocols, this is a main issue and it is painfully relevant.
 
Please allow me to make a small but important distinction: In some of these cases we can quite simply state that these people do not have these diseases. In many others that cannot be claimed.

Sorry, but no, for hEDS and MCAS the diagnoses are meaningless so nobody can usefully be said to have them. For the other diagnoses the great majority of people given the diagnosis do not have it as far as I can see, even if the situation is more nuanced.

I quite agree that the problem is medical incompetence and bullshit but if people seek out medical bullshitters, as they do, then you cannot blame people like Gaffny for pointing it out.
 
The medical-legal climate of MD practice in the USA is such that an "abundance of caution" (too much medical care and testing) can be the result. Or more likely, not taking the time to get a careful history and jumping to the wrong conclusions.

Why are the primary care physicians sending folks to the ER first instead of doing lab work, and then on to specialists if warranted. This doc sounds like he is sleep deprived enough not to make a cogent argument. He must have caught what he thinks is the patients' illness: that of being a chronic complainer.

Folks don't get sent to the ER unless it is for an urgent reason.

I don't know why the doctor carps on about slightly above the upper limit of normal lab values. Haven't patients heard or been told that a few points above or below (except for a few tests) are meaningless?
 
I quite agree that the problem is medical incompetence and bullshit but if people seek out medical bullshitters, as they do, then you cannot blame people like Gaffny for pointing it out.
Sorry, this seems garbled, but it's late for me. Regardless, you hopefully appreciate that those most likely to be seeking medical shortcuts and bullshit explanations are medical professionals? Patients are looking for real sustained solutions.

or hEDS and MCAS the diagnoses are meaningless so nobody can usefully be said to have them.
Not sure about heds, I don't study it, but I know at least one highly regarded US ME/CFS expert that would dispute your MCAS claim. However, I've no horse in that race. But wasn't it Galt who brought both POTS and tbds into the conversation? To declare "...the great majority of people given the diagnosis do not have it..." seems a little misinformed given even the CDC admits their estimates of Lyme incidence alone in the US has been exponentially low (20,000 vs 500,000 cases annually).

This needs to be about patients, not the egos of clinicians and researchers who do, in fact, have horses in the race.
 
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For the other diagnoses the great majority of people given the diagnosis do not have it as far as I can see, even if the situation is more nuanced.
I have a high regard for you, but we both know what you're saying here. You have no clue, nor should you. So you shouldn't be trying to discredit their diagnosis.
 
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