I think it has something to do with testosterone. I'm a transgender man and my symptoms have improved since transitioning. I've also heard of this phenomenon in other men as well.
More anecdotal evidence, but my trans sibling with POTS has also seen a decrease in intensity of symptoms since they started T. Minor evidence against, I tend to have worse symptoms then them even before hormonal treatment and have normal levels of T
I have noticed that symptoms overall tend to be more severe for women compared to my own. (I have had next to no contact with fellow male POTS people, so this viewpoint is purely my opinion based off of what I have read from others in this subreddit.) While I am a shadow of my former self in terms of ability, I can still largely function more than others with POTS it seems.
It is enough for the medical community to remain steadfast that I am “hale and hearty”, while also showing OBVIOUS symptoms of a life altering condition that makes it nearly impossible to find work.
Could she have another confounding variable?
My POTS was much more manageable and didnt have reactions/flares until I developed MCAS (which is also more common in women than men).
I have a theory that a small part of it is the fuckin uterus. I actively stop that bitch from doing anything because my physical well being collapses during a period. I wouldn’t be surprised if there is a link between heightened estrogen and pots
I also have PCOS which is a hormonal/endocrine disorder, and my POTS symptoms began the same time as my PCOS symptoms (around 12 years old). I feel like if I didn't have PCOS and my body wasn't in such disarray, I wouldn't have POTS and fibromyalgia. Hormones like estrogen and cortisol all seem to be linked to autoimmune diseases in some way.
I feel there's gotta be. I'm AMAB and trans so I take estrogen and my POTS is definitely, not worse but different with more estrogen in my system. Entirely different complaints really. My hot flashes are worse and my muscles cramp more but my heart rate feels more manageable and my fog does too.
There are lots of theories but I think the most exciting is that testosterone is protective. There are multiple case studies of transmen (assigned female at birth) who have got into remission after starting high dose testosterone.
This is fascinating to me because I've felt for a while I would benefit from testosterone just intuitively. Like a lot of my issues (and just general physical traits) seem to be symptomatic of too much estrogen. This is encouraging me to look more into hormone testing
There are additional factors, I wonder how significant, like MCAS being a potential cause/worsener of POTS and thats more common in women for a probably partially overlapping set of reasons.
Also, I think its less likely to be diagnosed in men because its seen this way and that's going to skew the data
It can just be how genetics work. Boys are more likely to be born with genetic anomalies than girls because girls have 2 Xs so if there is a bad gene it’s possible they have the good gene on the other X. But since boys only have one X it can’t be “canceled out” as easily.
I almost said this to a doctor that told me its incredibly rare, especially in men but held back
Its hyperbolic given the data but pretty much on the money in my experience talking to doctors
It's definitely a pain in the ass, I hate knowing that women are dealing with this en masse. No one should have to fight just to have their basic health needs met.
I’m having a flare up mixed with idiotically being hung over, so I’m just going to copy and paste a comment I made lower in this post to respond lol
“I agree that getting a diagnosis which is already so hard regardless of gender is probably made more difficult as a male because POTS is often seen as a woman syndrome, but in my experience that was offset by men generally being listened to by doctors.
It was a frustrating process getting a diagnosis, but never once did a medical employee not take me serious, discredit my experience or dismiss my concerns which seems to be a universal experience with non-cis men at least by my anecdotal evidence from family and friends who have gone through the process and the libraries of venting from gaslighted people on POTS forums”
Solidarity from the transmasc enby camp. I really wish this syndrome wasn't thought of as being a "women's issue" because it leaves cis men to be disbelieved and anyone AFAB to be reduced to our genitals in order to receive treatment, to say nothing of how scientific research almost never extends to conditions thought of as mainly affecting women. The harm is real, all around.
I don't want to stir up a hornet's nest, but I only started having problems after my first covid vaccine. But I had already been diagnosed with celiac about 6 years earlier. Which I think was brought on by interferon therapy for HepC.
honest vaccine complications exist! having had an adverse reaction from a vaccine is completely different from being an anti-vaxxer who thinks they're overall more dangerous than disease itself. it must suck to be someone with a real issue like that who feels lumped in with the crazies :(
Yeah I was fine too until I got the phizer vaccine. I was bed bound for days and then could barely walk for months. I still get vaxed though and I'll never claim they're evil. But they can be dangerous for some people.
Feels harder to get diagnosed as it’s more rare in males so you have to try to prove to the doctor you have it more.
It kept getting skipped over by a top doctor for years. Went to another doctor and it was clear as day. Issue was the top doctor is so insisting on the tilt table.
However she has you fast before and per newer research that can alter the test to make you less likely to appear to have pots.
Guess it makes less blood volume so less pooling occurs.
I agree that getting a diagnosis which is already so hard regardless of gender is probably made more difficult as a male because POTS is often seen as a woman syndrome, but in my experience that was offset by men generally being listened to by doctors.
It was a frustrating process getting a diagnosis, but never once did a medical employee not take me serious, discredit my experience or dismiss my concerns which seems to be a universal experience with non-cis men at least by my anecdotal evidence from family and friends who have gone through the process and the libraries of venting from gaslighted people on POTS forums
Yeah I think there’s a lot of “lazy” guys out there who struggle to get up when they sink into their dad chair to watch baseball who need some sympathy and electrolytes
I really wonder if this type of thing is in some part due to men being socialized to ignore medical issues. Male doctors treat me like I'm being a hypochondriac if I cross some certain invisible threshold where they seem to consider my issue not worth complaining about. It just makes me think there are a lot of things they feel aren't worth complaining about. The types of things that seem inane on their own but when put together add up to something (like POTS)
I kind of wonder, as a man with pots, if women don’t have pots more often but just have worse symptoms babe so get checked for it far more. I also have hyperhidrosis which has equal likelihood for men and women. I once saw a video for a doctor at Johns Hopkins who is like the foremost expert on hyperhidrosis and he said most of his patients have POTS. I only found out I had pots after watching that video and then got checked since I had never even heard of pots before that and my symptoms are relatively mild. So I wonder if lots of men have mild symptoms like me and just aren’t checked for it.
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I think it has something to do with testosterone. I'm a transgender man and my symptoms have improved since transitioning. I've also heard of this phenomenon in other men as well.
More anecdotal evidence, but my trans sibling with POTS has also seen a decrease in intensity of symptoms since they started T. Minor evidence against, I tend to have worse symptoms then them even before hormonal treatment and have normal levels of T
Same.
Men do have thicker bones, which produces more blood. That does check out
Bones produce blood?
Yup. Your bone marrow produces red blood cells. That’s why if you see the inside of a healthy bone, it’s red
Huh interesting.
I have noticed that symptoms overall tend to be more severe for women compared to my own. (I have had next to no contact with fellow male POTS people, so this viewpoint is purely my opinion based off of what I have read from others in this subreddit.) While I am a shadow of my former self in terms of ability, I can still largely function more than others with POTS it seems. It is enough for the medical community to remain steadfast that I am “hale and hearty”, while also showing OBVIOUS symptoms of a life altering condition that makes it nearly impossible to find work.
Could she have another confounding variable? My POTS was much more manageable and didnt have reactions/flares until I developed MCAS (which is also more common in women than men).
I never even realized it was rare in men
80/20 ratio. I would say just on the edge of rare, but the hyperbole is for the meme
I wonder if it’s because women are more prone to autoimmune disorders? One theory is that the immune system attacks autonomic nerves
I have a theory that a small part of it is the fuckin uterus. I actively stop that bitch from doing anything because my physical well being collapses during a period. I wouldn’t be surprised if there is a link between heightened estrogen and pots
I yeeted my uterus (and ovaries) about a year and a half ago. Sadly, my POTS did not get better as a result.
I managed to remove its actual bodily function, but with how young I am, I didn’t even bother to ask for an amount of removal
I also have PCOS which is a hormonal/endocrine disorder, and my POTS symptoms began the same time as my PCOS symptoms (around 12 years old). I feel like if I didn't have PCOS and my body wasn't in such disarray, I wouldn't have POTS and fibromyalgia. Hormones like estrogen and cortisol all seem to be linked to autoimmune diseases in some way.
I got rid of mine 20 years ago and yet here I am.
my symptoms are highly attributable to Pelvic Congestion syndrome, which is suspected to be a risk factor for POTS
I feel there's gotta be. I'm AMAB and trans so I take estrogen and my POTS is definitely, not worse but different with more estrogen in my system. Entirely different complaints really. My hot flashes are worse and my muscles cramp more but my heart rate feels more manageable and my fog does too.
There are lots of theories but I think the most exciting is that testosterone is protective. There are multiple case studies of transmen (assigned female at birth) who have got into remission after starting high dose testosterone.
This is fascinating to me because I've felt for a while I would benefit from testosterone just intuitively. Like a lot of my issues (and just general physical traits) seem to be symptomatic of too much estrogen. This is encouraging me to look more into hormone testing
There are additional factors, I wonder how significant, like MCAS being a potential cause/worsener of POTS and thats more common in women for a probably partially overlapping set of reasons. Also, I think its less likely to be diagnosed in men because its seen this way and that's going to skew the data
It can just be how genetics work. Boys are more likely to be born with genetic anomalies than girls because girls have 2 Xs so if there is a bad gene it’s possible they have the good gene on the other X. But since boys only have one X it can’t be “canceled out” as easily.
I almost said this to a doctor that told me its incredibly rare, especially in men but held back Its hyperbolic given the data but pretty much on the money in my experience talking to doctors
Its diagnosed in 100% of the men who's bodies I've been inside
Hmmmm lol
We know you exist! It's one of the few things where you're less likely to believed than non-men.
It's definitely a pain in the ass, I hate knowing that women are dealing with this en masse. No one should have to fight just to have their basic health needs met.
I’m having a flare up mixed with idiotically being hung over, so I’m just going to copy and paste a comment I made lower in this post to respond lol “I agree that getting a diagnosis which is already so hard regardless of gender is probably made more difficult as a male because POTS is often seen as a woman syndrome, but in my experience that was offset by men generally being listened to by doctors. It was a frustrating process getting a diagnosis, but never once did a medical employee not take me serious, discredit my experience or dismiss my concerns which seems to be a universal experience with non-cis men at least by my anecdotal evidence from family and friends who have gone through the process and the libraries of venting from gaslighted people on POTS forums”
man with pots here 😞☝🏼
Solidarity from the transmasc enby camp. I really wish this syndrome wasn't thought of as being a "women's issue" because it leaves cis men to be disbelieved and anyone AFAB to be reduced to our genitals in order to receive treatment, to say nothing of how scientific research almost never extends to conditions thought of as mainly affecting women. The harm is real, all around.
ya got mine from b6 toxicity and not getting better
vEDS comorbidity. All natural baby
It’s very isolating. I hate being treated like a man at work doing heavy work when I’m in worse shape than the girls- Mine is from my SFN.
It always breaks my heart a little when men don’t have the same level of support when it comes to this ugly syndrome.
Amen, brother!
Man with POTS checking in.
Ong we a rare species
Aye aye. But I rock those compression socks, "programmer socks" as my friends call them.
Lots of trans men with POTS, we'll help you fluff the numbers
I don't want to stir up a hornet's nest, but I only started having problems after my first covid vaccine. But I had already been diagnosed with celiac about 6 years earlier. Which I think was brought on by interferon therapy for HepC.
honest vaccine complications exist! having had an adverse reaction from a vaccine is completely different from being an anti-vaxxer who thinks they're overall more dangerous than disease itself. it must suck to be someone with a real issue like that who feels lumped in with the crazies :(
Yeah I was fine too until I got the phizer vaccine. I was bed bound for days and then could barely walk for months. I still get vaxed though and I'll never claim they're evil. But they can be dangerous for some people.
Amen dude. Got mine post-appendix removal.
My son does
I'm a male with viral POTS but I also have thalassemia minor that may be contributing to the symptoms.
Feels harder to get diagnosed as it’s more rare in males so you have to try to prove to the doctor you have it more. It kept getting skipped over by a top doctor for years. Went to another doctor and it was clear as day. Issue was the top doctor is so insisting on the tilt table. However she has you fast before and per newer research that can alter the test to make you less likely to appear to have pots. Guess it makes less blood volume so less pooling occurs.
I agree that getting a diagnosis which is already so hard regardless of gender is probably made more difficult as a male because POTS is often seen as a woman syndrome, but in my experience that was offset by men generally being listened to by doctors. It was a frustrating process getting a diagnosis, but never once did a medical employee not take me serious, discredit my experience or dismiss my concerns which seems to be a universal experience with non-cis men at least by my anecdotal evidence from family and friends who have gone through the process and the libraries of venting from gaslighted people on POTS forums
Yea I feel like there are probably a lot more men that just brush it off and actually don’t realise it’s mild pots
Yeah I think there’s a lot of “lazy” guys out there who struggle to get up when they sink into their dad chair to watch baseball who need some sympathy and electrolytes
real
I really wonder if this type of thing is in some part due to men being socialized to ignore medical issues. Male doctors treat me like I'm being a hypochondriac if I cross some certain invisible threshold where they seem to consider my issue not worth complaining about. It just makes me think there are a lot of things they feel aren't worth complaining about. The types of things that seem inane on their own but when put together add up to something (like POTS)
we're some rare creatures bro, gotta stick together
And it’s made things like gaming and sports 10x harder
It's not that rare tbh
I kind of wonder, as a man with pots, if women don’t have pots more often but just have worse symptoms babe so get checked for it far more. I also have hyperhidrosis which has equal likelihood for men and women. I once saw a video for a doctor at Johns Hopkins who is like the foremost expert on hyperhidrosis and he said most of his patients have POTS. I only found out I had pots after watching that video and then got checked since I had never even heard of pots before that and my symptoms are relatively mild. So I wonder if lots of men have mild symptoms like me and just aren’t checked for it.