POTS. Tale of Two Patients

Disclaimer: This post is not medical advice.

I know I discuss medical misogyny a lot, that is because it affects every aspect of my life and medical care. Today I would like to share two true stories of POTS patients and the difference in how they are treated. I will be using my story and the story of a middle aged white man . These are considered anecdotes but the difference is mind blowing. We will call this man "Bob" in the story but that is not his real name.

Bob's story: Bob developed POTS after a Covid infection. He was considered healthy with no pre existing long term illnesses before hand.

It only took Bob 6 months to be diagnosed with POTS via Nasa lean and tilt table tests. Bob has also gotten a plethora of other tests.

Most of the tests Bob had were negative, some inconclusive. His doctors never used the fact that a test was negative to "prove' his symptoms were "in his head" or psychosomatic. In fact negative tests just meant he got more tests. He was never shamed for negative or inconclusive results.

He also did not need to specifically request these tests. They were offered to him by his doctors. A lot of these tests were for co morbid conditions, mostly auto immune that a high percentage fo POTS
patients also have.

He is ANA negative and his inflammatory markers are not consistently high and in most cases "normal". Yet he was tested for dozens of conditions, a couple of which were positive .

He only had one doctor at the beginning suggest he was having panic attacks. However that doctor ordered additional testing and referred him to specialists.

POTS is a type of dysautonomia. Often patients with dysautonomia have difficulty regulating body temperature whether or not they are upright. POTS symptoms still persist even when we lay down, it's just our heart rates are not as bad.

Recently tis man was offered Fezolinetant which is a new non-hormonal medication approved for treating hot flashes in menopausal women. He posted about being offered this medication and his social media blew up with women commenting basically the same comment:

"I am going through menopause and my doctor never mentioned this or any other treatments. I am told to just suck it up-it's a part of life". There were dozens , likely hundreds of similar comments from women who have the condition the drug is approved for yet these women were never even offered the drug. Interesting.

Menopause is something that happens to 51% of the population yet most doctors have no clue on how to treat it. Imagine a medical condition that happened to almost all men that doctors didn't know how to treat and also insurance companies often reject what little treatments they would get (ie custom hormone therapy). Doctors would basically just tell the men to "suck it up". This would never happen to men , particularly white men (other races of men do face discrimination and medical biases)as a group. This may happen to individual men but it is not systemic).

A man has low testosterone he immediately is offered treatments catered to his levels. Women with sex hormone issues are often just given brith control pills/injections which are not custom (and many cannot tolerate) as a "fix all".

Side note: Maybe this drug can potentially help all patients regardless of sex or menopause status that have dysautonomia...?

Every step of his chronic illness journey he was taken seriously .Even when his PCP suspected he had a mental health/panic attack issues he was still referred out and tested for other things.

This is NOT my experience of the experience of women I know with POTS and related conditions. Not even close. In less than two years he has received more diagnostic tests than I have in my 34+ years of illness since childhood.

Compare his experience with mine. I have had POTS for decades. it took 30 years for a diagnosis. This is after hundreds of fainting episodes and multiple injuries from fainting.I was the first one to diagnose myself (at home nasa lean test positive), brought the info to the only ME specialist in my state that treats adults (retired) and he confirmed the diagnosis. it took 3 years for cardiologist who specializes in POTS to also confirm yes I have POTS. Bob just went to one doctor who lead him to his diagnosis.

Bob has also tested positive for Sjogrens an auto immune disease. I have had the same symptoms he's had and they refuse testing. Bob also had ach anti body tests (common positives in POTS patients) that were inconclusive. Doctors refuse my request for these tests despite me have many symptoms of MG-the most common being my jaw and leg muscles run out of energy like all the time. I am also in 24/7 sever pain that is not treated.

Bob was offered mestinon even though he did not have a positive test for MG. Mestinon is a common medication used off label in POTS patients (regardless of auto anti body tests )often without these tests even being run).

Doctors refuse these tests for me and refuse to let me try this medication. Multiple doctors. In fact I am often mocked with "pff, you don't have MG. MG is a serious illness". No one has ever tested me for it so they don't even know if that's true. Regardless this medication is often used in POTS patients.

Side note: POTS is a lot more comoo in women. About 70-80% opf POTS patients are women yet is takes years/ decades for us to be diagnosed. Men are diagnosed much faster despite it being far more rare in men than women. This is constant with female dominant diseases, men are diagnosed years earlier than women on average.

I also find it weird that Bob's doctors know what POTS is and take it seriously. I constantly have to educate my doctors and "prove" I have POTS but standing up/sitting up while they measure HR/BO and see the very obvious mottling and cyanosis (not all POTS patients have this). Bob does not need to do this performance. Which by the way for me often leads to near/ syncope-drs do not care.

My inflammatory markers have been elevated for decades. This has never lead to any additional tests or suggestions of tests. I am ANA negative (only tested once in 34 years) and that was used by multiple doctors as "proof" I do not have a real autoimmune/physical illness (I have several of those illnesses BTW). Not everyone with autoimmune diseases tests positive for ANA. ANA also varies. You could be negative in one test and positive in follow up tests etc. It is not the holy grail of autoimmune biomarkers.

I did a sweat test a 15-20 years ago that indicated SFN and possible polyneuropathy. No further testing was done. SFN is very common n POTS patients. Stats are usually at or around 50% (same with fibromyalgia and ME very high prevalence in these cohorts).

To this day I am still told my symptoms , particularly my vitals are "anxiety". I do not suffer from anxiety. I have confirmed diagnosis of POTS specifically neuro and hyper-adernergic POTS (likely hypovolemic too). I have diagnosed orthostatic hypertension. Still I am mocked for being anxious every fucking time they take my vitals.

DR assistants take my vitals an average of 3 times (just at intake) every time to because they do not believe the numbers. I mean literally every doctor's office every time. My vitals are strange, I'll give them that. I must have a super power where I can control these machines with my mind.

The only difference in my symptoms and Bob's is that I have more physical muscle and joint pain and suffer from PEM/PENE.. Otherwise we have the same symptoms. Bob has never had to request a test, do research on symptoms etc. He just gets the tests.

I have excellent insurance so that is not the reason I am denied. I am denied because I am female just like the billions of women around the world who are also denied the same medical care that men get.

He is a man so he is believed and he gets tested and treated. I am a woman and every time it's a fucking battle. Every medication I'm on is due to my research . Reminder I am severely ill and 90%+ bed and home bound. I suffer with cognitive symptoms. I should not have to be my own doctor and spend my time researching treatments. Cognitive energy expenditure causes harm to ME patients often resulting in weeks/months long crashes and can result is permanent baseline worsening. I have no choice. Without this research I would have no treatments.

I am more severely ill than this man. I have been sick for decades, he's been sick less than 2 years.He is on the mild-moderate spectrum. He is still able to work a physically demanding job full time (though that may be changing soon as he does seem to be getting worse as time goes on).

Women deserve the same resect and medical care that men get. Medical misogyny kills because women are dismissed and not believed until it's too late.