So things that can look like anemia can be other things! Case in point, my wife was misdiagnosed for months with Anemia. What she really has is several tick Bourne diseases. For 5 months her doctors kept giving her blood transfusions as he hemoglobin reading was around 4-5 and it should be 12-13 for a normal person. Can't tell u how many specialists and emg room visits. Finally found a female md that listened to her and gave the approval to do a comprehensive tick panel. Sure enough rocky mountain spotted fever, erlicheaosis, recurring Lyme fever and regular old Lyme. The blood they were giving her was basically like throwing gas on a fire. Almost was ready to make funeral arrangements. Let me say tick diseases are going bonkers and a lot of people don't know they have it. Plus a lot of doctors won't believe or authorize tests. Advocate for yourself or you might die! Not kidding !

A hemoglobin for 4-5 is anemia - the definition of anemia is low hemoglobin concentration. If your wife had hemoglobin that low, then she was correctly diagnosed with anemia.

It is a bit odd though the apparent coinfection with multiple tick borne illnesses from different species of ticks - A lyme and ehrlichiosis coinfection is not surprising, but rocky mountain spotted fever is a very different illness, often more acute in presentation with distinctive signs and symptoms - but coinfection with the other two would be quite rare.

Also, those specific tick illnesses listed are unlikely to cause that profound of an anemia by themselves, so there's probably some other pathology going on - the tick borne infection may only be a trigger.

Any relatively young person that is otherwise healthy (no near end state kidney disease) should definitely get referral to a hematologist for hemoglobin of 4-5 if it isn't something blindingly obvious like blood loss.

The difference is actually finding the root cause or just diagnosing what’s essentially a symptom as if it’s unexplained or isolated (idiopathic, I think is the term?).

My mother was diagnosed with anemia, and received many recommendations ranging from not drinking tea to getting a hysterectomy (which was done, in her mid 40s). It turned out she wasn’t absorbing iron due to Celiac disease. Treating the anemia as if it was an isolated condition wasn’t helpful at all since she needed to address the root cause, Celiac.

“Anemia” isn’t really a diagnosis.

Your mother had a microcytic anemia (a broad class based on lab results), of which there are several types including iron deficiency anemia.

Next, there are multiple causes of iron deficiency anemia of which celiac disease is one of them.

You would never diagnose a patient with “anemia” and stop there. Further work up for the etiology is mandatory and endoscopy is commonly performed.

There is no such thing in modern medicine as “just treating anemia” unless you know the cause and the only treatment is transfusions.

I would imagine that more details were available, but I’m recounting some thing that happened to someone else 30 years ago when I was a teenager. So I’m not really clear on the precise details. All I know is that they said she was low on iron and anemic, and the suggestions were to not drink tea and they gave her a hysterectomy. As noted, they failed to discern the actual cause at that time. She was diagnosed with celiac about 10 years later.

This is a good learning/discussion point: The post common cause of iron deficiency anemia in menstruating females is menorrhagia. Celiac disease is often an acquired disease in later adult hood.

This is not to comment or challenge directly your case but knowing the two above facts it is not uncommon (in fact I have personally seen this in practice) where your above outline is perfectly reasonable.

A woman may have multiple reasons or a sequence of reasons for IDA, developing celiac later in adulthood - it’s totally possible they had chronic blood loss anemia before that.

> You would never diagnose a patient with “anemia” and stop there.

I kind of doubt that. In my experience, the treatment for chronic heartburn is to throw meds at it to stop the symptoms. After an upper endoscopy, no attempt at root cause was ever made.

As much as you doubt that based on your anecdotal experience (addressed below), I’ve respectfully spent the past 9 years practicing medicine in 16 different hospitals across three countries and feel I am in a more appropriate position to comment on the medical standard of care.

I can say with absolute confidence at none of the places I’ve worked at would a doctor leave a patient with a diagnosis of anemia as this is malpractice. Are there physicians in some hospitals who practice negligently?

Sure, but there are also pilots who show up drunk to work and engineers who are negligent. That doesn’t mean the entire profession has a “problem”.

Anemia is not heartburn. Anemia can be life threatening.

As an analogy for the tech world. Anemia is a server crash. Heartburn is a warning in the server logs.

You may decide the warning is not worth fixing / may result in new bugs (aka complication).

When a server crashes step 1 is to get it back online (transfuse to a safe hemoglobin target).

Step 2 is find out why the server crashed (why is this patient anemic, which is a sign/symptom and not a diagnosis).

Just as a computer engineer would never say “I’m not sure why but let’s just keep restarting every time it crashes”, a doctor would not say “I’m not sure why you’re anemic” unless there was an extensive negative workup and the patient normalized therefore no longer requiring treatment.

There is no situation where a physician just keeps transfusing an anemic patient without figuring out why. This is not only expensive, but transfusions carry risks and with repeated transfusions some risks increase. This is not a medically accepted management plan anywhere and the hospital / blood bank would quickly intervene if a non-hematologist was serially transfusing a patient as this is outside their scope.

In your example:

Your negative endoscopy excluded H. pylori, gastric malignancy, peptic ulcer disease, and a hiatal hernia. Those are all of the easily treatable and life threatening conditions we should not miss.

Your next options for investigation would be a 24 hour pH study with consideration for fundoplication. This is a major surgery with risks and complications that are believed to be worse than PPI therapy.

Patients who fail PPI, are unable to be weaned, or have contraindications are the ideal candidates for such an invasive procedure. You don’t want to send every heartburn patient to fundoplication, we used to do that and made a lot of people worse.

I feel that patients are qualified to comment on medical standards of care, also.

I am sure that you’re a good doctor, but to answer your question, yes, there are many doctors who operate negligently, to some extent. I had a long experience at one of the major hospitals in the US following drastic weight loss and months of pain. A major hospital did various tests, and ended up telling me I had “health anxiety”. It turned out that I was actually developing LADA, a form of type 1 diabetes. Since I had already been diagnosed with celiac and was having primarily digestive symptoms, the tests they did focused on the digestive tract and they never investigated other causes. I had to finally go into diabetic ketoacidosis before anyone figured it out.

Unfortunately you are confusing “medical standard of care” with the “standards of medical care”.

“The most common legal definition of standard of care is how similarly qualified practitioners would have managed the patient’s care under the same or similar circumstances. This is not simply what the majority of practitioners would have done.”

Source: https://biotech.law.lsu.edu/map/StandardofCare.html

As you can see, patients are not qualified to comment on the medical standard of care and unfortunately how you “feel” isn’t a consideration in the decision as this is established in case law.

To your larger point, if you are dealing with a negligent doctor the place to address it is at a medical licensing board. With a single paragraph complaint they will gut a doctor for diagnosing anyone with “anemia”.

Instead of spreading partially misremembered stories online and spreading vitriol I suggest you use the many, free channels available for recourse if you feel your doctors actions constitute malpractice.

I appreciate these things can all sound similar and be confusing. Perhaps best to leave to the professionals dedicating 10+ years to learning the trade.

How would you have done your diagnostic workup differently than what was done - specifically?

What was the negligence what was the diagnostic smoking gun that was missed?

> I feel that patients are qualified to comment on medical standards of care, also.

Patients like doctors is a huge group that should not be generalized - but health and healthcare literacy is pretty bad so by and large, no, patients can comment on standards of care but they aren’t qualified to do so.

> If your wife had hemoglobin that low, then she was correctly diagnosed with anemia.

That seems like a somewhat myopic perspective.

Saying this patient was "correctly diagnosed with anemia" would be like diagnosing a cancer patient currently undergoing chemotherapy with male pattern baldness.

A more accurate and helpful diagnosis would probably be something like "Babesiosis"——anemia caused by ticks infected with a microbe that destroys red blood cells especially considering the multiple cofactors at play. Or whatever it was that specifically caused the anemia; the parent comment didn't say.

Dude, I'm just addressing this: "So things that can look like anemia can be other things! Case in point, my wife was misdiagnosed for months with Anemia."

Which is a bit of a confused statement.

> Saying this patient was "correctly diagnosed with anemia" would be like diagnosing a cancer patient currently undergoing chemotherapy with male pattern baldness.

No, that's a pretty shit analogy and completely wrong. First, because chemotherapy doesn't cause "male pattern baldness" - the mechanisms aren't the same. So that's just wrong - while someone with a hemoglobin of 4 has anemia, whatever the underlying cause may be - it isn't a look alike - it is.

Second, diagnosing Alopecia (secondary to chemotherapy) is a perfectly reasonable diagnosis. Because it is something that doctors do manage with specific things separately from the chemotherapy and other cancer treatment, eg wigs, scalp cooling.

People can have more than one relevant diagnosis that they are treated for and are interrelated. For instance, if someone has anemia that is due to something like a GI bleed, they have both a GI bleed and anemia. If their hemoglobin is less than 7 you will likely treat that anemia with a blood transfusion independent of what you're doing to manage the GI bleed. GI bleed, iron deficiency, malabsorption, microcytic anemia are all diagnoses - they may be all interrelated.

> A more accurate and helpful diagnosis would probably be something like "Babesiosis"--anemia caused by ticks

But babesiosis is not anemia. It often occurs with it, but the diagnostic criteria for babesiosis is blood smear or PCR. If someone has a smear positive for babesia then they have babesiosis regardless of their Hgb/Hct.

And notably they listed a bunch of tick borne illnesses listed, babesiosis was not among them.

Right idea generally but in that scenario it would be like making a diagnosis of alopecia which just means hair loss. In any case some diagnoses don’t have clear explanations or subdivisions for decades or centuries until explanatory medical science catches up with the descriptive diagnoses like anemia or alopecia.

I understand your family’s frustration but it’s hard for me to think that the only presentation (both by history and hematologically) was a Hgb of 4-5 and physicians just proceeded to transfused with no further questioning or consideration for the large number of diseases in the differential diagnosis. Did she have low platelets (thrombocytopenia)? Had she had a rash previously? Was she outdoors in areas where ehrlichiosis or rickettsia carrying tIcks are known to be endemic? I’m sorry but you provide minimal information and then dump on physicians. Yes, it’s possible that you dealt with dozens of careless physicians but what information did your wife provide to that one female physician, which triggered the battery of serologic tests, and that no other doctor could elicit in the flood of previous medical evaluations. It’s not as if your wife just shows up with vague malaise and fatigue but everything else is normal in her history and in the examination. She has a Hgb of 4-5. Was a hematologist called in? Was ID called in after she remembered that fever and rash she’d previously experienced, for example.

There are quite a few incompetent doctors, sadly, and they stick together and support each other. While I'm generally reluctant to bring up identity politics, it does appear that women and people of colour tend to experience this worse than others.

My mum had abdominal surgery, and one night following the surgery, she felt an extremely painful tear sensation in her lower abdomen and shortly afterwards noticed a big asymmetric lump in the intestinal area.

My partner is an ICU nurse and suspected a hernia so we took her to the local hospital and the doctor said it's just post-surgical swelling. It didn't go away, rather it got bigger, more painful and frequently gurgled, so we went to the GP. The GP said it's probably just because she's had kids 30 years ago (!?) and that my mum needs to get used to not looking attractive any more, and to lose weight.

What followed was months of doctors visits trying to get them to even accept there was even an issue. Bear in mind, this was a significant, painful gurgling lump, around the size of a tennis ball. Yet doctor after doctor said there was nothing wrong with her and she should consider therapy and antidepressants instead.

After a few more months, she began experiencing such bad pain that she couldn't walk, and finally a junior female doctor suggested she had a hernia. However, she got overruled by her senior and sent home with paracetamol. The junior doctor quietly told her to go to another hospital.

We managed to convince my mum this was ridiculous and brought her to London, where she got looked at by a hernia expert, who was very concerned about her treatment thus far and sent her for a CT and - obviously - found a large hernia. Due to the time it was left untreated, the repair was very challenging with many complications.

Back home again, while recovering, she was having the early warning signs of an infected surgical wound (hot swelling, pus, smell, chills etc.) and again the local hospital fobbed her off and said she's overreacting, didn't swab the wound or change the dressing and sent her home. That night, she called me incoherent and I called for an ambulance - turns out she had sepsis and nearly died.

I can promise you that we made sure everyone treating her had a full medical history at every point, but they still blatantly ignored what was right in front of them. There is actually a ton more to this too - the surgery in the first place which triggered all this was due to a medical error and wasn't necessary. It's been five years so far.

She's currently suing the local hospital and doctors.

I’m sorry to hear this and of the incredible suffering your mother and her loved ones have had to go through. I am quite aware that there is a significant number of physicians who are careless, apathetic, rushed, eager to get home after long working hours. Many are incompetent but I would venture to say that a larger number is plenty competent. It’s just gotten to a point in their career where they are “burnt out” for whatever reason and they are aiming for speed. It becomes another consumer transaction and as the patient load increases during the night, the clinician just tries to simplify things as much as possible, taking shortcuts, working under weighty incorrect initial diagnoses. Once you’re seen by that first doctor who makes what should be a tentative diagnosis, that opinion carries a great deal of psychological force. Of course this depends on the docs seniority.

In your mom’s specific case, it is inconceivable to me that any trained physician would see her post-surgical history and subsequent development of an abdominal mass and not think immediately of a hernia and possible strangulation as it grew. A first-year medical student can palpate the abdomen and readily tell there is herniation through the abdominal wall. Is it reducible or not? An abdominal CT scan should be reflexive. It’s even more maddening when more than one physician misses the obvious or at least the way it sounds to me given the information you’ve provided.

Physician burnout is a real alarming phenomenon with emergency room doctors having one of the highest rates. This was already an issue pre-COVID-19. I can’t help but worry about how worse it may get.

From my reading of that story what was interesting was that shit hit the fan with a post-op infection after the hernia repair. A reducible hernia isn't an automatic indication for surgery these days - and post-op risks outweighing benefits is one of the reasons why. It's also weird why the "time left untreated" would have any bearing on the repair and risk of complications - people go through life with uncomplicated hernias for years - if they're complicated they declare themselves pretty rapidly. There are many other reasons I can think of that would increase risk though. When I hear a story like this it is very hard for me to believe the entire pertinent medical history is being conveyed.

I concur. I often work as a radiologist in the ED setting, while this is anecdotal I can’t imagine that anyone with history of recent hernia repair, purulent discharge, and chills would not get a CT scan at an academic centre in the US (OP stated residents were present.

I can only speak to the centre I’ve worked/rotated at but this seems inconceivable based on the requisitions I get in my career. We do a lot more for a lot less.

The only point I would disagree on is that “time left untreated” can increase complication rate. If this a partially strangulated hernia and there was a microperforation (quite common and often missed) or bacterial translocation in the hernia sac mesh would almost certainly get infected. Even if not strangulated/perforated at time of surgery, if there are dense adhesions from recurrent/intermittent obstructions that may also increase operative complexity and a lysis of adhesions may contaminate the field. That said you could also just not use mesh.

In my experience US EDs tend to be very liberal with testing. At times it seems excessive. I have heard complaints from technicians who say they feel like sometimes the doctors just tick every box on their tablet. I think this might have to do with malpractice insurance. Perhaps, and I say this as a proponent single payer, the NHS prefers cost savings to risk reduction.

Remember that in the chronology, the infection occurs after the second surgery, the hernia repair. The mass develops after the first surgery. I agree with you otherwise. Internal Medicine here.

Yes exactly, perhaps I was unclear.

In my description, it is conceivable that due to chronicity the field was contaminated at the time of second OR and/or a lysis of adhesions resulted in a contaminated field.

If the surgeon implanted mesh in a contaminated field this would be seeded and inevitably get infected.

This is not uncommon and why surgeons often don’t implant mesh in complex LOA or possibly dirty fields.

I’m not saying this is what happened, but delayed diagnosis of a complicated hernia can increase the risk of complications from repair.

It's not clear to me exactly why the wound got infected, as currently all the parties involved are blaming each other.

The surgeon who performed the mesh repair did clearly state it was a possibility, but the hernia wasn't suitable for non-mesh repair, which would have been his preference.

There was no indication of infection or contamination at the time of the hernia repair, and the surgeon who performed the mesh believes the infection was most likely caused by poor aftercare, which was handled by the local hospital due to covid travel difficulties. Of course, he could just be saying that to cover his ass.

This isn’t necessarily covering his ass.

Mesh infection is a known risk, by your description you were appropriately consented for this.

It will be impossible to definitively identify the source of infection (I.e. was there an inadvertent enterotomy intraoperatively? Was it an inguinal hernia repair which is a relatively “dirty” region close to genitalia and a common location for surgical site infection? Did your mom develop a bacteremia for another reason and seed the implant?).

At the end of the day none of this really matters though because you were appropriately consented.

The only apparent angle for malpractice here would be if a reasonable and competent surgeon would disagree with the use of mesh and would have done a primary or two-stage repair (I.e. reduce the hernia under laparoscopy +/- small bowel resection. Bring the patient back several months later to repair the abdominal wall defect.)

If you saw a physician specializing in hernia care, I would assume that they follow best practices and this type of case was not amenable to the options I described.

If this is the case, it is incredibly unfortunate what happened to your mother. However, bad things happen and this is why we consent for complications (especially ones as devastating as mesh infection).

I wish everything I did worked and I never had complications but the only way to have no complications is to never see patients.

We aren't particularly bothered by the mesh infection. Complications happen.

We are bothered by the hospital not diagnosing the hernia despite it being painfully obvious there was a hernia, which led to complications, and then ignoring the signs of infection until it got to the point where it nearly killed her.

I greatly appreciate this response. We’ve come full circle.

When seen by a competent physician who appropriately consents patients understand complications.

Your issue is that your mother was misdiagnosed (at least by what was communicated on this thread) and by your description I agree.

I addressed this in further detail to one of your comments above, but for any readers I would like to also clarify this here.

Your original comment stated:

“There are quite a few incompetent doctors, sadly, and they stick together and support each other. While I'm generally reluctant to bring up identity politics, it does appear that women and people of colour tend to experience this worse than others”

You later clarified:

“Essentially my mum lives on an island nation where there is only a singular local hospital with a fairly poor reputation.”

I explained above why isolated locations such as this island with a singular hospital don’t attract recently trained/high quality physicians which is also obvious. Consequently the percentage of poor/incompetent physicians will be much higher. There are also fewer physicians for phyisican-physician consults and a singular hospital such as yours probably doesn’t have morbidity and mortality rounds and a QA program.

Therefore your experience, in an island nation with one hospital, is not representative of the modern healthcare experience and the physicians there are likely not on par with metropolitan centres.

With that said, you also choose to live in an island nation (irrespective of the reason this is a choice). That comes with the known disadvantage of poor access to quality healthcare just like every other white collar profession.

It is important to not generalize such an atypical practice setting to the general population as this is a heavily biased view.

Well, the history is not clear. All we know is that post-first surgery, an abdominal mass develops which becomes painful over time. I assume the “hernia expert”, which is just another name for a general surgeon, followed a simple algorithm: Protruding painful abdominal mass -> Hernia? Incarcerated? With possible increasing risk of vascular compromise to bowels > CT Scan. Go from there. Period.

To be fair and in defense of OP, I’m not sure why you are putting quotes around hernia expert.

I’m not sure what setting you practice in, I am personally in a ~1500 bed academic health sciences center.

At my institution, we have 3 general surgeons who are hernia experts (literally on their letter head). This is to say that their non ACS practice is heavily on hernia repair and they get the referrals for all complex hernia repairs from other general surgeons in the catchment area.

If you’re in a smaller setting you may not have a similar degree of sub-specialization amongst your general surgeons but hernia experts are definitely a real thing.

I appreciate your overall point and frustration, but I think you’re being a bit too dismissive here.

That’s a fair criticism. I apologize if I came across as dismissive but it was not towards the OP. My adding quotes around hernia expert was more to show my indignation that any number of other physicians according to the OP failed to make a correct diagnosis thus requiring the “expert” to step in. My comment was poorly worded and difficult to decipher my intention with it.

I also come from a large academic based health center.

The reason for the "expert" is rather complicated.

Essentially my mum lives on an island nation where there is only a singular local hospital with a fairly poor reputation.

In order to get it looked at, we had to find a hospital in the UK, as that's where the private insurance covered treatment. The local hospital refused to even write a referral for further diagnosis as they considered it unnecessary as it "definitely isn't a hernia", so we had to find a surgeon that takes self-referrals. That rules out the normal NHS routes, even if attending privately.

So ultimately we found a team that specialise in treating hernias, who agreed to have my mum in after they saw a photo of her abdomen.

I think one thing to understand here is that a local hospital with a poor reputation isn't going to have the same standards as a large academic health centre. The reputation is such that good clinicians will avoid the local hospital, as they don't want to be seen to be associated with it.

Unfortunately, when you live there, you don't really have the same luxury.

You’re absolutely correct.

I like to think I’m a good physician. At the very least I’m a highly trained subspecialty physician.

I could never work in a small community hospital with poor standards because it drives me insane to work with apathetic clinicians (100% a real thing). Additionally, given how much I trained I need to practice in a centre that can provide complexity (largely academic centres or major metropolitan non-academic sites)

This unfortunately does result in the bottom of the barrel staffing the “crappy local hospital”, but someone has to do it.

It’s unrealistic to expect high quality physicians to work on a small island nation. By choosing to live on a remote island you honestly have to accept that you’re not getting the same access to healthcare as someone in a larger city.

I’m not sure of any way to improve that.

Edit: I wanted to add that with the additional information cameronh90 has provided, in my professional opinion I can absolutely believe that his mother may have been misdiagnosed in such a practice setting.

Not uncommonly (forgive me for using this favourite word of doctors), I see egregious medical errors referred to my centre from very remote locations.

The issue in this story is not that the medical profession is apathetic, careless, negligent.

This is rather a good example of the issues in delivering quality care in remote locations. We can’t force people to move to islands and presumably an undesirable location for someone to migrate to so you end up with a higher percentage of incompetent physicians who can’t find jobs in better locations.

Most often the only times these types of practices get a recently trained physician are if the individual originally comes from there and wants to go back, a rare occurrence in my experience.

Just to add, while it is an island nation, it's not remote. It's also quite wealthy, but with a relatively small and elderly population.

While I'm not a doctor, I'd imagine that if I was a good doctor, I'd rather work somewhere that I'm likely to get exposure to interesting cases, or hospital known for producing quality research, or a teaching hospital, or at least want to live somewhere that I could go to conferences and otherwise work with other smart people. Indeed, I moved to London for similar reasons in my career.

The way the local hospital tries to maintain some level of competence is by flying doctors over for a day or two a week, but even with that it's an uphill battle trying to attract anyone in the prime of their career. It's more of a place you go for an easy retirement, earning relatively good money but for boring work in poor facilities. Even then, the money isn't comparable to what a late stage career doctor could get working privately in Harley Street for example. We do know a few doctors (and nurses) working over there, and even if they start out enthusiastic, the system ultimately grinds them down until they're apathetic. Some leave, some just give into it.

I appreciate that you obviously can't have excellent doctors everywhere, but at the same time, I bet most individuals' interactions with healthcare are those local community hospitals and pre-retirement GPs with little enthusiasm for the job. I suppose that in healthcare, reaching the best physicians is usually a bad sign regarding your prognosis (or a very good sign regarding your bank balance).

I can’t speak for the UK but 70+ percent of the US population lives in urban areas with over half living in the 48 largest regions. Therefore your conclusion that most individuals experience similar interactions with a “poor reputation singular island hospital” is factually incorrect.

Community hospitals can have very complex care and top talent, but not in cities with a singular hospital and island population.

Irrespective of geographic proximity, by your description this location appears to be a medical desert/medically remote. Most doctors, especially modern ones, don’t like practicing in places without a lot of other physicians for backup/support and somewhat easy access to subspecialists for referrals. Fortunately most hospitals and practice settings provide this (i.e. rural Wisconsin was UW-Madison for backup which is generally not that difficult for patient transport and is an excellent medical centre).

The issue here is not just local community hospital providing poor care. You’re taking about a very isolated practice that no one wants to work in, this is an outlier.

According to the surgeon who ultimately repaired the hernia, it was not an uncomplicated hernia. He said it was incarcerated and that there was an adhesion.

Ultimately, it could well have been the case that treating the hernia was not recommended, and that could have been discussed. But simply denying that there was even a hernia and refusing to perform any further investigation is clearly a failure.

After seeing a relative go through hell for years of mistreatment and misidentification of Ehlers-Danlos syndrome that had not been identified earlier in life and went to specialists for a number of years with a ream of information, I just really have less faith in proper identification of anything that falls out of normal.

I think you’re hitting the nail in the coffin.

As physicians were trained on the common and the deadly. We’re not that great at rare non-immediately life threatening conditions due to the nature of the discipline.

We’re trained that when you hear hooves, think horses not zebras. This does unfortunately mean that patients with zebras are often misdiagnosed for a while, but that’s because our approach isn’t intended to catch every zebra (which would be impossible).

The other element is to avoid unnecessary harm. Often the tests for zebras are nonspecific and overlap with other conditions (I.e. to be considered after exclusion of other aetiologies).

A late diagnosis of EDS fits in the zebra categories and probably wouldn’t have been picked up until you saw a rheumatologist or vascular specialist at a centre which deals with these.

The deficit of knowledge is bilateral. Sure clinicians don't know about patient risk factors, but people get things like rashes very commonly from a wide array of sources. Either way, the parent post was saying that people should inform and advocate for themselves. This is entirely consistent with your message.

I agree with your greater sentiment that people place unreal expectations on their doctors. The point is that doctors are fallible and not omniscient. This is just reality, patients need to be their own advocate.

Blame is beside the point.

> Plus a lot of doctors won't believe or authorize tests. Advocate for yourself or you might die! Not kidding !

Experienced this myself. So mant doctors behave like JavaScript developer and I am another webpage

At least in Eastern Europe thats because they dont really have the time needed to help the patient.

Its a business and you have 10m to do all paper work, check patient and prescript something.

Its horrible. Doesnt help that private doctors are super expensive, dont care about you and dont believe you.

Health became just another accommodity only super rich can pay for.

The best approach remains to know the right people who can tell you about which doctors are good. Or as the kids call it,"networking". E.g. my dentist (an exceptionally good and professional woman) is someone I know because she's friends with the wife of a colleague of a girl I went to high school with. I hope that the new health platforms that are springing up will lead to knowledge of which doctors are worth their pay being easier to access and spread.

Small adjustment here... anemia is not a disease, it merely describes the state of having reduced hemoglobin concentration in the blood. It doesn't make sense to say things can 'look' like anemia. It has myriad causes. It is never benign, and should always be investigated thoroughly.

Hey, I noticed that you explicitly mentioned that you found a female md that was the one to ultimately make the correct diagnosis. Do you feel that the previous md's (males?) were unwilling to consider they should conduct a tick panel due to bias? I ask because my partner has had comparable resistance for a very different ailment and I'm interested in possible systemic errors occurring.

Yes, male doctors often don't listen to women. Speaking from both personal experience and the experience of almost every other woman I know.

Medicine is a horribly antiquated and biased field. It's one of the few fields that need to be automated.

I’m sure that can happen, but please don’t just to that conclusion just because of sex differences. I’m a man and I’ve had plenty of male doctors not listen to me as well, along with one or two very dismissive female doctors.

It’s a profession that attracts know-it-alls along with those that actually want to help but are overworked.

Very true, but when there's literally 100s of years of women's legitimate medical complaints being dismissed (sometimes with fatal consequences), it is surely not too much of leap to speculate that this is part of the reason.

It is very rude to deny that areoform and Coolerbythelake have read their situations correctly.

Perhaps female doctor are more likely to listen better (to men or women).

Sexism is a well recognised problem in medicine - a little googling shows a lot of research into the problem. Here is one article referencing some research with how women are treated for heart attacks: https://www.salon.com/2018/12/14/new-research-reveals-how-se...

I wonder if that type of bias could be some result of the way medical schools structure the courses training our doctors, or if medicine is just a universal enough human need that it exposes bias inherent in all areas of our society.

Physician bias that women and people of colour are “tougher” is real. We are educated about it and are improving but as with bias against these classes of individuals everywhere else in life, we have come a long way but we are not perfect.

Most current medical schools (at least reputable ones) provides extensive training on this matter.

Different regions of the country have worse biases as well.

Err it’s more that tick-borne diseases cause anemia.

There are lots of things that cause anemia! And someone with unexplained anemia deserves a complete work up (especially with hemoglobin levels in the 4-5 range), including for tick-borne illnesses, especially if they have been in an endemic area. But lots of other things worth checking too, many more dangerous than tick-borne illnesses.

> Plus a lot of doctors won't believe or authorize tests.

In the UK there is a silent but serious case of people dying from cancers because GP's are refusing to refer anyone to the hospital for checks. The whole situation is deteriorating. It's not just cancers either, it's other types of conditions and even diseases these borderline incompetent GP's are either missing or simple refusing to listen to the patients. You can google any type of combinations of phrases, eg replace cancer with X condition and you'll get countless examples of that too.

For example: https://www.google.com/search?q=people+dying+from+cancer+gp+...

People are literally dying because some GP's just don't give a shit.

Yeah I just learned this from a video. https://youtu.be/HOK3NS2bD3M

Iron deficiency can be your body fighting off a disease, and adding iron is the wrong thing to do.

I also learned excessive iron is worse than low iron, your body can regulate the intake but not expend iron.

Iron is complex.

It took years for me to be diagnosed with thalassemia when my GP found some of my blood results suspicious. Got treated for anaemia a few times before, and was refused for blood donations as well without being able to explain what was wrong. My blood tests said "anaemia", but my life experience said "all seems ok to me...?" - luckily I have a mild form, I just need to watch my diet a bit.

My dad also found out through my diagnosis why he kept getting those same signs in his tests... :) Eastern European medical system at its finest.

You have good points, but how was transfusing blood to increase her hemoglobin levels like "throwing gas on a fire"? Maybe it didn't help, but it surely didn't hurt? And, isn't it sort of a good thing to raise hemoglobin levels, in any case?

>Advocate for yourself or you might die! Not kidding !

Paid healthcare? As a europopulator i can choose to pay for my healthcare. Rest assured, that when i do pay, i insist on certain things. Like doing the tests i insist on...

"Plus a lot of doctors won't believe or authorize tests."

Surely, the money talks in a situation like this? I can pay for any test i like and no (socialist, here) doc would ever say no, nor would they actually give a crap.

Unfortunately not in the USA. I assume lot of it comes down to the doctor's discretion because if the insurance company finds that the doctor is performing excessive treatment/tests, they will deny coverage, renegotiate rates with the provider, or even refuse to cover the provider outright.

I've been trying to get certain blood screenings through 3 doctors, and they were all more than happy to repeat the same basic blood panel 3 times, since it is incontrovertible, even though it would have cost less overall to get the specific blood screen I asked for.

And if I want to pay "out of pocket" it is impossible because the tests often require a doctor's prescription, and even if not, the non-insurance rate for the tests are 2-10x what providers negotiate with insurance companies.

There is not, to my knowledge, any prohibition against you going to a doctor who only sees "fee for service" patients, to get your lab work done. That is, a physician who accepts no insurance whatsoever. These are not rare in the U.S. Get your test from such a doctor, send it back to your own physician/healthcare provider as a nudge.

For much of my 30s, 40s, and 50s I was strictly a fee for service patient in Southern California. This, of course, is no solution for someone with significant health problems. I've been blessed with good health, undeservedly so. I had cataract surgery on my left eye in 2011 for $2600 cash, up front, at the area's biggest hospital. No further charges materialized. I had no regular primary care physician at the time. To me, $2600 for a surgery, the result of which was so magically wonderful that I burst into happy laughter in the ophthalmologist's office when he removed the eye bandage, was worth far more than the $2600.

Don't overlook businesses like Everlywell or Private Labs MD that enable one to get tests performed outside your own network. I've used such a service to "nudge" my health care provider (with whom I am generally satisfied) to investigate some subject further. Admittedly, this is not much help for exotic tests.

If, like me, you are lucky enough to live reasonably near our southern border, labs in Mexico don't even require a doctor's order to perform tests. There may be exceptions to this -- I don't want to imply that I know more than I do.

I don't want to "wave away" the very real problems that exist for those who cannot afford any service outside their network, nor do I mean to ignore the very real problem of arrogant medical professionals who ignore a patient who tells them, "Listen, Doc, I've had this same test three times in the last three months." I only mean to suggest that sometimes, when it is possible, it helps to work around a stubborn physician, rather than attempting to bend said physician to your view.

If only it were that simple!!

Because of digital record keeping and insurance laws, even if I go to a independent, fee-based doctor, the results of his test can mean that in 10 years, insurance can refuse to cover certain treatments.

It's really an inescapable web, that even my doctor is aware of and seems paralyzed to authorize a test for me because of not only the implications for my finances, but also her practice.

Essentially, it's my opinion that US doctors are afraid of arbitrarily losing a chunk of their customers or having to negotiate with lawyers.

Sounds like the insurance company is the customer, then.

If insurance doesn't approve the test, it won't be paid for. Insurance also means US prices for tests are elevated to 10x what they "should" cost because providers expect insurance to knock the price back down to a reasonable cost. As a result, ordering a bunch of unapproved tests leads to huge out of pocket costs for patients so only the wealthiest will ever be willing to push for them.

Ironically, that same population also is the most likely to have insurance that will cover the tests in the first place. So it goes.

You actually can negotiate pretty easily with most hospitals / doctors. After getting the bill just say you can't pay and offer a fraction of the cost. Many times they will say yes (alternative for them is selling the debt for cents on the dollar anyways)

Source: have done this 2-3 times in the past when I was poor / used to not have self insurance.

On the other hand I have to travel 30 mins cus the 5 doctors in my town no longer bulk bill and I can't afford the cost to go see them.

The fact your ok with having to pay for a better standard of healthcare rather than just having a society which provides the best healthcare for all. Is legit cooked.

Not everyone can pay. Health should not be gated behind a paywall. Life is not a microtransaction game.

Lyme disease is spreading northward, areas that would have never thought about it 20 years ago need to exercise caution when hiking on uncleared paths (or when diagnosing patients), but the awareness isn't that huge right now.

How can we identify them! Also how to be safe?

Is Bourne disease when you can't remember your past and start being chased by secret services' killers?

> Let me say tick diseases are going bonkers and a lot of people don't know they have it. Plus a lot of doctors won't believe or authorize tests.

The existence of Chronic Lyme disease is very controversial and diagnosing it can get doctors in trouble (depending on the jurisdiction.) Whether or not Chronic Lyme disease is real (I don't know), I think the general consensus of CLD diagnoses being quackery might bias doctors against diagnosing any sort of tick related disorders, particularly chronic ones.

The general medical consensus is that "chronic Lyme disease" doesn't exist and that symptoms attributed it often have to do with chronic fatigue syndrome or infection-triggered fibromyalgia.

Doctors often don’t believe in fibromyalgia…

Doctors generally believe in fibromyalgia. What's more controversial is whether it's a disease, disorder, symptom or syndrome.

A patient experiencing fibromyalgia is very obviously unwell, but in many (not all!) cases it's comorbid with depression and treatment with antidepressants and therapy helps with both the depression and fibromyalgia.

As of right now, it's not especially clear what things like fibro and CFS are, and whether they might be mental disorders in some cases, but they're definitely real.

I had some illness for much of 20 years. Doctors were uncertain about what it was. They eventually called it Lyme disease because they weren't sure what else to call it. But I was stuck taking antibiotics for 20 years. I tried several times to quit the antibiotics, but I always got badly sick when I did. I eventually managed to achieve a complete cure, by fasting with only water for 2 weeks. I describe this whole saga in detail here:

http://www.smashcompany.com/philosophy/how-i-recovered-from-...

That is super interesting, thanks for sharing! Sometimes, less is more.

Iron is also needed in the electron transport chain as a component of cytochrome C oxidase. If fewer iron molecules are being prioritized for creating this enzyme, then less oxygen will be reduced at a time. The rest of the Krebs cycle can be in an optimal state but the cycle can only go as fast as the electron transport chain will allow it. I imagine that given a deficiency, the human body will prioritize iron formation in the blood over creating new cytochrome C oxidase since transporting oxygen to cells is more important than running the Krebs cycle at full speed.

I have no idea if this is really what's going on, and it's interesting that this is not mentioned in the linked articles. The reduction of oxygen is really the final step for oxygen before it becomes a part of metabolic water, and throwing off the timing of binding oxygen atoms with protons will slow everything down.

Your hypothesis is plausible, but as you have said, whether it is true or not depends on the order in which the availability of iron for each of its many functions in the body becomes affected when iron is scarce.

Cytochrome C oxidase needs not only iron, but also copper. So any symptoms caused by an iron deficiency to it, presumably a decrease in the capacity for aerobic effort, should also appear in the case of a copper deficiency.

>> Your hypothesis is plausible, but as you have said, whether it is true or not depends on the order in which the availability of iron for each of its many functions in the body becomes affected when iron is scarce.

I just assume that every logical/plausible concept is at play and evolution does its best to balance everything. Rarely is anything absolute.

I've noticed the same. I'm a woman so bleed often, I'd feel the fatigue but my blood work didn't show anemia, so my primary care physician didn't feel the need to prescribe it yet. I decided to take supplements on my own and monitor the ferritin levels to make sure I don't over-do it.

Note, if you aren't bleeding regularly, it's very unlikely you need it, and iron might be harmful. Make sure to test your ferritin levels before and regularly as you do it.

How do you monitor ferritin levels ? Blood test ? I couldn't find any auto-test where I live

Frequent monitoring of iron/ferritin levels while on oral iron supplementation is likely not necessary -- barring a genetic disease, you're extremely unlikely to get iron toxicity or overload at instructed oral doses. Periodic monitoring is more to assess a positive response - since if your levels are not going up on supplementation it warrants further investigation.

Oral iron is now recommended given only every other day to avoid GI side effects and there is evidence that the response is just as good to more frequent.

I think this is true, with the caveat that men don't have periods like women do, so taking iron supplements every day for say 5 years might cumulatively add up for them.

But otherwise normal/daily supplements for a few months probably won't be negative and indeed, might even be beneficial for certain subpopulations, like athletes.

The otherwise healthy man with no iron deficiency has no reason to take daily iron supplements for 5 years and therefore no need to monitor iron levels. If they are iron deficient there is some sort of blood loss or underabsorption going on and if and until that is corrected an oral iron supplement is unlikely to cause toxicity. If it is corrected, then iron replacement should only take a few months.

While I agreed, I do want mention that hereditary hemochromatosis affects roughly 1 in 300 people. So of the people reading this thread likely someone will have it.

That’s good news. Oral iron gives me an upset stomach unless I have lots of recent carbs.

Iron gummies are a thing, and helpful to a family member. Multi-vitamin gummies too, which might have enough iron to keep levels up depending on the condition.

Try Ferrochel! Normal ferrous sulfate absolutely destroys my stomach and gives me tarry shits but I can take Ferrochel on an empty stomach without any side effects.

My partner takes Megafood's "Blood Builder" iron supplement which seems to work well and avoids the GI symptoms.

Disolving tablets and consuming in liquid form is an alternative.

This frustrates me. Right in this very thread are many accounts of people saying that doctors won’t listen to you and will do only the minimal amount of work possible to get you out of their office, and that you should do your own research. Then like 3 comments down are posts like yours, sarcastically putting down people sharing results of that same research.

So which one is it?

Perhaps we are reading different comments, but the parent doesn't read as sarcasm to me. Something else to be aware of is that the people responding here as doctors do not make up even a small fraction of a percentage of the practising doctors, so although there is lots of interesting information being shared, using that as a way of refuting people's complaints is not exactly useful.

From blood tests, yes

Are you in France? https://www.cerascreen.fr would be an option. I've only used the UK site but assume it will be the same.

And...? Did it help?

Too high isn’t good either; the solution is downright medieval.

https://www.mayoclinic.org/diseases-conditions/hemochromatos...

https://www.webmd.com/men/features/too-much-iron-in-your-blo...

So don’t go gulping down the supplements all willy-nilly, either.

> Treatment includes regularly removing blood from your body.

Just regularly donate, no problem.

If you're diagnosed with hemochromatosis, you may not be permitted to donate; it seems to depend on your local blood banks. There's some amount of concern that because the donation is theraputic for the donor, they may not be forthcoming about other factors that should disqualify them, if present.

Of course, if it hasn't been diagnosed and you're a regular donor, that's a happy accident.

That kinda makes sense. If you allowed them to donate even with disqualifying factors (but flushed it down the drain), it would fix the incentives. May not give enough additional blood to be worth the bother?

Donating apparently also removes microplastics from your body...

Are they just freefloating in blood? Capillaries are tiny and I thought micro plastics were closer to 1mm than 1micron, despite the name. Capillaries are 8-10microns.

They can get smaller than that: https://en.wikipedia.org/wiki/Microplastics#Nanoplastics

I'm curious if the donated blood is processed in a way that removes those microplastics.

Probably not, but if you're in need of a blood transfusion you have more immediate concerns.

Any references for that? What about just drinking a lot of water so you have to pee more often?

I think op might have been referring to this assuming PFAS and microplastics are all disposed off https://www.independent.co.uk/independentpremium/world/blood...

Yes exactly :)

If there are any synthetic textiles in your home, it's probably a lost cause; plastic dust everywhere. Every time you eat, drink or breath, you'll be taking more in.

If donating prior to high ferritin and onset of symptoms, that might be enough, but to handle the former, one needs much more frequent blood donations to push the level of stored iron level down than what donations allow. (at least in Sweden, where you can donate twice a year, but the initial treatment is biweekly iirc).

yup!

I'd hardly call a regular trip to give blood "medieval".

They're not giving out leeches.

Medical leeches are a thing.

https://www.uhhospitals.org/Healthy-at-UH/articles/2020/03/h...

right; those are for cleanly healing scars.

“your humours are imbalanced and you should be bled, you’ll feel better” is not far off from “your iron level is too high”, though…

> “your humours are imbalanced and you should be bled, you’ll feel better” is not far off from “your iron level is too high”, though…

The difference is that now we have both empirical evidence that it works, when it works, what the side effects are, and generally why it works. As opposed to cargo culting, poor cost/benefit analysis, and inaccurate understanding of what's actually happening.

we have a much better model now, i agree.

>> those are for cleanly healing scars.

My go-to for that is Iodine.

I use those silicone scar strips. Wound healing technology is nearly magical these days.

the normal use is reduction of venous congestion at an incision site after a major surgery, which i hope you’re not doing regularly enough to have a go-to!

Think of it as helping tissue to find the correct shape and structure. Some claim this includes curing some cancers (skin cancer in particular). It is needed in some pathways to apoptosis.

Medical leeches are used to encourage blood flow, particularly after reconstructive surgeries; the benefit is not from the leech sucking your blood, but from the bleeding that continues after the leach is removed. (Their saliva has anticoagulant and anti-inflammatory properties.)

Was twitter really the right place for this? Very informational piece, I liked it. But having to read it in 12 sections was awkward. Disclaimer, I already dislike twitter.

It forces the writers to make every sentence count. No space for fluff, people would just stop reading the chain. It results in a much more condensed style than e.g. blog content.

I like that each tweet/paragraph can have its own commentary. Provided it isn’t anything political or bait-ey, the discussion following each tweet can be insightful, and are more contained and targeted than those usually found at the end of a blog post.

It’s important to remember that it’s just a different medium - you’ll find blogs, Reddit and Facebook posts, memes and infographics on this topic.

Except I stopped at the first sentence when I realized there wasn't a link to any actual readable content.

I'm not the biggest fan of twitter but this is a practicing internal medicine doc that is conveying information primarily aimed at other doctors in training or practice - this is information that is for the most part readily available, nothing groundbreaking here, there are podcasts on the topic, videos and other paid for sources of information. The novelty is the medium - and if there are some that benefit from it and the like the format I don't see the harm.

For a lot of people it's both the most effective way to communicate atomic components of a stream of thought, and to reach an audience. Very few other platforms offer the same opportunity.

What I don’t get is why it’s good to communicate “components of a stream of thought” as opposed to, you know, a complete thought.

Probably for the same reason bible is separated into verses. Easier to find more profound meaning in a small atomic bit of a though taken out of context.

I'm suddenly tempted to tweet the entire Bible.

Somebody already did.

Which version?

There is more than one version of Twitter?

replace twitter with nitter: https://nitter.it/tony_breu/status/1543311124560592898

since I don't use twitter, I've set up a userscript to do it for me

I use Privacy Redirect to redirect Twitter to some Nitter instance and Instagram to some Bibliogram instance. I don't know if there are other people that do the same here, but I do that on those two websites because they are really intrusive and really heavy to visit from a web browser.

fixed: https://threadreaderapp.com/thread/1543311124560592898.html

Not sure why people are defending this. It’s not like separating a page into paragraphs. This is so jarring it’s distracting.

On the other hand, I’m not sure I would have sat through an entire blog post on the same issue. The tweet format is a highlight reel, especially for subjects I don’t even know I’m interested in yet (this wouldn’t go looking for long form content).

There’s bots to unroll threads. Eg tag @threadreaderapp and type unroll. Or just tag @UnrollThread.

I don’t have the same problem with long threat tweets, and in many cases prefer them over blogs as they’re forced to include only the most salient points.

Supplement anecdote: I really like Floradix because it doesn’t make me puke like the over-the-counter Ferrous Sulfate tablets always do: https://www.floradixusa.com/products/floradix-iron-herbs-liq...

Supplemental supplement anecdote: I also really like Floradix for its gentler GI effects. I was anaemic (from a long term health condition) and well, now I'm not. Daily seems fine, too.

I also use an app to check my haemoglobin levels. It is weird that an app can do this, but I've calibrated it against less frequent in-hospital blood tests and it checks out. See: https://sanguina.com/anemocheck-mobile/

Another anecdote: I am using ferrous bisglycinate instead of ferrous gluconate (Floradix) - it is even easier to take and absorbs well. I find it ridiculous that doctors still prescribe ferrous sulfate when these exist.

This was a surprise to me when I had a panel of blood tests and my ferritin was very low, but haemoglobin was normal A few weeks on iron supplements did lead to a notable improvement day-to-day and reduced fatigue. I always find it surprising how much difference this sort of thing can make.

Do you know the root cause? I have exactly the same problem for last two years, and I took Iron supplements for 6 months, still same situation. I do have a autoimmune disease, just wondering if it can cause things like this.

Starting working towards that with my GP but we don’t really know yet, no.

Do you buy it over the counter?

At least here (BC, Canada) you have to talk to a pharmacist to get it, but there is no prescription required. You should also have your levels checked semi-regularly if you're taking supplements to ensure that your levels aren't getting too high.

Fascinating.

You can have an iron deficiency, even if your hemoglobin levels are normal, because iron does more than just carry oxygen in red blood cells: It's a cofactor for many enzymes.

I'm curious if there's a third variable at play here; something preventing the iron from being accessible (since our bodies normally break down ferritin to access the iron), especially when hemoglobin levels are otherwise normal.

I suspect there might be.

I didn't see Restless Leg Syndrome mentioned, but it's pretty heavily tied to iron deficiency. Both my kids were acting tired during the day and showing symptoms at night. Can't feel rested if you're moving all night long. Iron allowed them to actually sleep.

https://www.hopkinsmedicine.org/neurology_neurosurgery/cente....

I eat ice, which people often say is due to iron deficiency, but so far no test has suggested iron deficiency. I did have folate anemia, but fixing that didn't cure my desire to eat ice.

Iron deficiency can also cause restless leg syndrome even without anemia, it's sometimes overlooked. Better to take iron than something that messes with your dopamine receptors.

Also recent research has shown evidence that taking iron every other day is better than taking it daily. https://pubmed.ncbi.nlm.nih.gov/31413088/

for a long time, until I started eating meat I had low ferratin. Iron supplements didn’t help and even some weird ferratin supplements didn’t seem to work.

But iron is not ferratin (it’s some kind of stored iron) and I’m not sure if it really had any affect. I was low ferratin but could I have been not low on iron?

Either way iron deficiency is common in vegetarians and vegans, but there are plenty who are just fine. They get iron from tofu and spinach which is different from the iron from meat and maybe affects their levels differently, but it seems to work out.

Ferritin is the protein that stores iron in cells in almost every organism from bacteria to humans - but its exact structure and mechanism do differ. As a blood test, endogenous ferritin level gives an indirect measure of iron stores. Ferritin <25-30 ng/mL is consistent with iron deficiency anemia - levels higher than this are more difficult to interpret - they don't rule it out.

Whether or not consuming plant ferritin (when you buy "ferritin" supplements that is what you're getting - usually a pea plant) is an effective iron supplementation is another question entirely. And as far as I know there is no great evidence that it is non-inferior to typical oral iron products (salts and saccharide compounds). The ideal treatment for iron deficiency anemia is typically IV iron (or blood transfusion if the anemia is profound enough to warrant it - but IV iron replacement is one of those things coming back into fashion finally after many years of being feared for reasons with poor evidence.

*ferritin

This is the first I'm hearing of polycythemia vera having anything to do with iron deficiency, but considering the overlap of symptoms (and the fact that the former involves making way too many blood cells) it makes a lot of sense.

Is there any decent way to supplement iron? I’ve never seen any pills in regular stores.

As I mentioned elsewhere, you can get supplements but at least in BC you need to speak to a pharmacist to get them, though no prescription is required.

Depends on your jurisdiction, I guess. In the US they are widely available OTC any drugstore, discount store, or supermarket.

https://www.cvs.com/shop/vitamins/minerals/iron

Aside from blood loss and Polycythemia Vera, what else can cause serum ferritin levels to decrease over time without anemia?

I wonder what role underrecognized parasitic infections play here. My specialist once told me that parasites scavenge iron.

Could this cause dizziness standing up?

Check this out [1]

[1] https://my.clevelandclinic.org/health/diseases/9385-low-bloo...

That's B12 deficiency.

Orthostatic hypotension, Postural Orthostatic Tachycardia Syndrome, and other related issues are not always (and usually not) B12 deficiency. These issues are downstream of a number of causes.

I take b12 but maybe I’m still not getting enough?

How much are you taking? 5000~10000mcg per day may not be too much, also there are no side effects or overdose risks.

I think you should do a blood test and ensure you're at least over 500 pg/ml.

It's certainly worth checking B12 levels properly. It's quite hard to be B12 deficient and a common reason to be so is due to being unable to absorb it properly in the digestive system (I think this is quite common with celiac disease, for example). That's why injections are a common approach. I went with sublingual administration instead and it worked very well.

For individuals with certain auto-immune diseases (like rheumatoid arthritis), the medication they're on can also interfere with b12 absorption - such as methotrexate. This is a possible consequence of what you mention regarding absorption digestively. Injections are a solution but are not always accessible in every country - in the UK they are extremely hesitant to permit b12 injections, for whatever reason.

If you're willing to pay for yourself, you can look at e.g. Get A Drip. Or marry a nurse who can do it for you. ;)

I had folate anemia and the injection sorted me right out. Supplements didn't help particularly, perhaps because the root cause is poor absorption from EDS.

It’s a b complex pill. It says 15 mcg. Maybe way too low?

The fact that you're taking that B complex pill tells me someone has also spotted B12 deficiency on you, so my hunch was correct?

Anyway, 15mcg is way too low. You need at least 5000mcg daily. I would buy one of these: https://www.amazon.com/NOW-Methyl-B-12-000-Lozenges/dp/B00BH...

Taking a blood test now and after ingesting all the pills will be better to make sure it is doing something.

I'm unfamiliar with Ray Peat.

Is there a reason Ray Peat advice should be treated differently than say, Mehmet Oz advice? Or Linus Pauling advice?

I couldn't seem to find much of anything published by him that was peer-reviewed.

Annoying huge Twitter threads.

Just. Write. An. Effin. Blog. Post.

Long form reading on Twitter is very cumbersome

MD here. This particular Twitter account maintained by Dr. Tony Breu is an outstanding repository of clinical information with a large physician following. His clinical threads which he has helpfully grouped (MedTweetorials) for easier access are a miscellany of medical information with even some surprises for old timers like me. The information he includes in his threads includes some interesting links specific to the particular tweet in the the sequence. He conveys the information in a way doctors can appreciate and learn from but also accessible to non physicians. He also runs a podcast. I mean, criticize Twitter threads if you must, but you’re missing how useful this format is in a platform such as Twitter. Throughout the COVID-19 pandemic, some of the most insightful and current information has been delivered this way by top virologists, epidemiologist, and many frontline clinicians learning and sharing the best diagnostic and treatment options known as of the time of the Tweet. I believe in many cases, this rapid real time sharing led to saving lives.

What's stopping someone writing a blog and then sharing it via Twitter?

Not a thing but this is the setting: I’m a physician who follows many other physicians on Twitter. I’m already there with the Twitter client in my phone. I see this great threat. I read it right there and share it with other colleagues who have already become accustomed to exchanging important clinical information this way: quick and easy. I previously explained how the information shared this way during the past couple of years may have saved lives. Extra steps directing me to a blog are just a waste particularly as many fellow physicians jumped (during the worst COVID periods) from one intubated patient to another. Tony Breu is a Hospitalist after all. He is caring for the sickest patients compared to an outpatient office.

How do I one-click retweet my favorite two lines of a blog post and get all my friends to do the same?! /s

You're laughing, but there are popular plugins for doing exactly that.