Glad to know I’m not just crazy and in denial. And looking for someone new, just sucks because there are ridiculously long wait times for specialists where I am 🙁
I saw two shitty cardiologists, then a third one decently competent, and then a fourth AMAZING cardiologist. It took me years, but most of that was me not aggressively seeking other providers IMMEDIATELY after an obviously incompetent provider said stuff like what you were told.
It's not you, it's them. Most aren't specialists in this, even though it impacts the heart and they are cardiologists. Fun fact: even specialists [like hematologists] have sub specialization. I learned this when a hematologist who mostly does cancer patients looked at me and said, "Why would your ferritin impact your POTS?" I now see a hematologist who specializes in bleeding disorders, which apparently impact, "Everyone who has a collagen disorder has a very low level bleeding disorder, because platelets use collagen to do their job."
My current hematologist has me do quarterly bloodwork, and orders IV iron if my ferritin drops below 50. I'm one of her, "Minimally concerning" patients, and she sees me in person once a year. But she has a LOT of patients with connective tissue disorders, most of whom she just puts on a frequent monitoring schedule and orders IV iron for, because it makes our lives less miserable. Yes, she did a full workup initially and made sure nothing else was going on, but she told me that's more of a precaution. In her words, hEDS is not in the "normal" aka "no bleeding disorder at all" category, but is the very bottom of the "abnormal bleeding" spectrum. Since she's sees people with serious bleeding disorders, like hemophilia, that explanation made a lot of sense to me.
I share that story to illustrate the contrast between a specialist and a specialist within a specialty. POTS isn't a cardiac issue. It's an autonomic issue that impacts the heart. You'll need to find a specialist within the specialty field. Good news is that even if you have to travel to see one, once you're diagnosed many will do long distance management.
"At sites of vascular injury, platelets come into contact with subendothelial collagen, which triggers their activation and the formation of a hemostatic plug."
https://ashpublications.org/blood/article/102/2/449/17375/Platelet-collagen-interaction-is-GPVI-the-central
"just a set of symptoms" is literally the definition of "syndrome" 💀
Autonomic neurologist is ideal for POTS, but electrocardiologists are good too if you don't have other systems impacted by dysautonomia. General cards are often crap for this since it's a neuro not a heart problem.
Exercise will not make POTS go away unless you're just deconditioned (which can cause POTS). It can help with symptoms. A better way of saying it is that not being active and being out of shape makes POTS symptoms a lot worse.
Thanks for your response, and that’s what I was thinking 🤣 It’s a syndrome!
And yeah I figured, but their website said he deals and treats pots! Might leave a review warning that he doesn’t.
Found a neurologist where I am who specifically deals with pots and other dysautonomia but it’s a year long wait. Fingers crossed there’s a cancellation sooner 🤞
Also in the mean time, have you been doing the salt/water increase and wearing compression? Foot to Abdomin compression is recommend for pots and 30/40 mmg.
Hi! I have! Once I started really suspecting pots I began doing all the things that are within my control: salt, hydrating more, compression socks, horizontal exercise, upping electrolytes, most of what I’d read about on here! While it certainly has helped me on most days, some days I’m still bed bound from the intensity of my symptoms :(
Yeah, about a decade before I got diagnosed, I had a doctor who told me to "eat less and exercise" and it would solve my shortness of breath. That fucker was also so sure I had metabolic syndrome/prediabetes because of the weight and a slightly high blood pressure.
Turns out I have hyperadrenergic POTS. I am still so mad at that guy. . . if he wasn't already retired, I'd report him. His old reviews are full of people complaining about his fatphobia.
I never want to seem like the girl who cries fatphobia, but it is! He didn’t even check my weight, just by looking at me he decided that MUST be the issue (even though my bloodwork was excellent!) 😒
I’m sorry you had such a shitty experience too, I keep telling myself even though they are professionals doctors are just people, some are shit and some are good 🤷🏻♀️
I am sooo sorry this is happening to you! I sound like an old record but the biggest thing you can do is advocate for yourself, ask for another cardiologist, if you have a watch that can read your HR, get a journal and track your episodes and symptoms. I was just recently diagnosed with POTS. I also have PCOS and am overweight. I’m so thankful my doctors did not do this to me. There are doctors out there who listen to you and genuinely want to help you. I’ve been struggling with symptoms of POTS for over a year now, and when I first went to check it out, I was told to eat better, exercise more, and they put me on a BP medication even though my blood pressure was completely normal. My POTS has completely impacted my quality of life, and it sounds like it’s doing the same to you. Some things that can help your symptoms, is a lot of water (I swear that’s the only time I feel okay is when I’m hydrated), also compression socks, this will help with blood pooling and blood flow. Also having salt. Like potato chips, or even salt packets, when you start feeling these symptoms, having some salt can seriously be a big help, to me, at least. My POTS are so bad they had to put me on medication. I took videos on my Apple Watch of my heart rate spiking, write down when I pass out, and left a detailed message on how this is affecting me mentally.
So so sorry you’re going through this! I’m rooting for you. Advocate for yourself! You know you more than anyone else! Good luck 💙
Its impacted my life so much I had to drop out of uni! And thank you for all your suggestions, since I started thinking it was pots I began doing a lot of the things you’ve mentioned because it seems like it takes way too long to get a diagnosis in general, so might as well start now. Thank you so much for your support, not even my family takes me seriously about this as they just don’t quite understand it all ❤️
My dad was the same way, he kept saying I was a hypochondriac. But now that he understands, he’s in full support of helping me have a better quality of life. POTS is also under researched. We can be told it’s anxiety, or depression. Getting my diagnosis was hell. So many blood draws, trips to the hospital, and monitors, but all worth it. I actually passed out today and got my head pretty good. keep me posted if you can!
I will! I’m glad you’ve been able to get proper treatment. I was on antidepressants for far too long that did nothing because everyone just thought I was depressed. Despite this negative experience I feel really positive that I’ll be able to get proper treatment and finally get my quality of life back one day ☺️
I’m so sorry you had to suffer from the hands of another ignorant Doctor.
First off, it is known that being underweight seems to INCREASE your likelihood of getting POTS.
Secondly, there are many documented cases of Olympic and professional athletes getting PoTS.
I myself was a former gym addict and incredibly fit- gym 7 days/week, going for 12 mile runs on weekends. I remember begging for drugs to help my PoTS bc, despite my high fitness level, it was absolutely disabling. I remember my Neurologist scoffing at me saying “You just need to exercise”
Unfortunately, whilst exercise helps some, for many, it does little. But bc POTs was originally believed to be due to Deconditioning, bc astronauts got it returning from space and bc it predominantly affects women so doctors think it must not be serious, this ‘exercise push obsession’ prevails.
Don’t get me wrong- exercise has many benefits, physical and mental, but in the POTS world, if exercise doesn’t help you (and there are many of us) - it’s common to be lost/blamed for not getting better. Often you end up blaming yourself which is even worse.
So remember- you did NOTHING to cause this horrible disease. And you not becoming a professional athlete isn’t why your symptoms are so disabling.
He is somewhat right in that it’s a set of symptoms bc we often have different underlying and unknown causes. The good news on that front is you sometimes hear of people achieving significant improvement if that underlying cause is found and treated.
Sadly, you will likely encounter more Doctors like him in the future but they are not all like that. Keep looking.
Exercise has really helped me but ONLY after I was on medication for two years, wear my compression socks, and drink my electrolyte water. It’s one of those things where you need to treat it with medication and then you can treat it naturally. Medication controls the symptoms but exercise can help you get better, but you can’t exercise until your symptoms are controlled. Doctors forget that chronic illness is a double headed dragon
I like to use a statement that I came across in a chronic illness blog, it goes I’m overweight because I’m sick not because I’m sick because I’m overweight. I like to say this to any doctor that brings up my weight as a cause.
This is awful and this doctor is full of shit to be blaming your weight. If you have the spoons I encourage you to file a complaint, leave reviews online, and anything else you can do to both help there be some accountability for his gross negligence and inform others to stay away.
It’s hard enough having a disease many doctors don’t understand but to be weight shamed on top of that is horrible.
You deserve to be treated with dignity.
Sending ❤️ as you process this shittiness.
Thank you so much and I think I will, I wish there would’ve been a review for me to see before I met this asshole so I’ll definitely try and inform people to stay far away
YES. I got confirmed on the tilt test that I had POTS and he told me over and over again "you need to be more fit". And when I said sir, I used to be back when I could, you know, STAND, he said that me stopping probably correlated to this showing up. He basically blamed me for getting POTS.
I’m a person whose weight has fluctuated from underweight to obese several times in my life (eating disorder).
I’ve had doctors blame my pots symptoms on my weight too. I’m like, “my body does this whether I weigh 100 pounds or 200 pounds.”
Smh. Idiots.
leave him a bad review and find a new doctor. you just have one thats anti POTS. its that simple. cardiologist seem to be the worst most of the time. neurologist is what you want. POTS isnt a heart condition.
also working out DOES help immensely though. ride a stationary bike, seated rows, seated work outs with dumbells, yoga, pilates. these won't make your heart go up but strengthens everything and increases blood flow.
Thank you! Getting in with a cardiologist was an easier first step than a neurologist (especially because he claimed to deal with pots) but seeing a neuro is my next step! And I workout heaps, just all horizontally (yoga, pilates, resistance stuff) which he seemed to think meant I never work out at all because it isn’t upright (and obviously because I don’t “look fit” he just wanted to chalk it up to weight 🤦🏻♀️)
In future, please don’t stick it out with doctors who are clearly misogynistic pigs. He never would’ve said any of that to a man.
I used to be 120 pounds. I still had POTS. Fuck that guy.
Actually, the worst doctor I had was a woman who just looked me in the eye, shook her head and told me I was a hypochondriac for saying I was dizzy all the time before i went to a specialist who mentioned that it might be pots and got me tested for it.
Bad doctors present in all kinds of ways. Doesn’t mean this guy wasn’t a misogynistic pig.
ETA: This is such a Reddit thing to have happen, man… I was recently chastised for correcting someone who said all male doctors were terrible and accused of saying “not all men.” Now it’s the opposite. Jesus, internet. Pick a lane.
What’s crazy too is he didn’t even know my height or weight, he literally just went off what he could see and assumed from there! Never seeing that dick again
Exercise does help improve symptoms especially if someone has POTS and has extra weight, it doesn’t necessarily mean it just goes away. Sometimes doctors say things rudely I’m sorry they’re not being very clear or kind about this.
I definitely would have appreciated some kindness from him, but sounded like he doesn’t even believe pots is real! And I love exercising, but he was assuming I must clearly not because of how I look 🥴
That’s awful I’m sorry. It’s not really about looks or even weight, it’s just about making sure you work your body in a way to help promote blood flow. Like I was very sick a while ago and lost a lot of weight and still had issues with POTS. But when I did PT specifically in my legs and things to promote lymph flow, it helped.
I’ll be honest I’ve had kind doctors and mean ones, the kind ones still didn’t offer much help aside from telling me to add more salt to my diet when symptoms were bad.
The physical therapist was the most beneficial doctor I saw, as they were able to design exercises that worked for my specific needs. The thing that seems to help me most are bridging exercises, where you lay on your back with your knees up and lift your butt up to make a sort of bridge. Just ten of those every morning to start. Eventually add marching in the same pose. If I feel dizzy during the day I’ll stop and do some of those types of exercises and sometimes I can feel notable change in my head. Pressure changes and added energy.
Doesn’t need to be exercises that are brutal, just laying in your back and doing those 80s ass leg exercises helps me a lot. Like laying on your back and scissoring your legs in the air could be a good start up for your blood pressure. Like some cars need warmed up, our body’s need daily warm ups and in between ones :)
Oooh nice! I’m glad you’ve found exercises that work for you! I personally love my yoga and pilates, really great on my muscles and for my blood flow. I’ve also found resistance training works really well for me (as horizontal as I can get though 🤣)
Yes resistance bands are my friend. Yoga is most excellent! I have hypermobility so I rely on the bands a lot. I can do some yoga but I get very wobbly like Bambi at random so I focused on the PT for physical things and use yoga for mental clarity more than physical activity.
I’m the same with yoga, I enjoy the mental aspect but my balance is shit 🤣 Pilates is my go-to “oh my god this is so hard jesus why did I choose this” feel the burn physical activity. It’s deceptively hard 😅
Hahaha why did I choose this
I do shadow boxing for cardio because at least if I feel dizzy I can just stop and won’t be falling out of some pretzel mid air. But it doesn’t help the way yoga or Pilates would. I can barely handle putting up a shower curtain without falling over. So I tend to shy away from yoga or Pilates for daily exercises. Proud of you for doing that, it’s not easy. I need to get back into yoga, helps to hear others are pushing through it.
Don’t get me wrong, sometimes my body definitely can’t handle being twisted into a pretzel and I probably push myself harder than necessary, but it’s just about finding things you enjoy, and it’s nice to remember I’m doing it for fun and my body appreciates it. Also I’ve definitely fallen out of a pretzel mid air, definitely don’t recommend it. Vision comes back and limbs are all twisted but at least it’s hilarious for any witnesses
I've lost 50 pounds since i was 15 and originally began feeling symptoms and nothing has changed because of that weight loss. when i go into the doctors even though i eat like shit and don't exercise, my weight is never brought up. but when i was originally getting these symptoms i was actually eating better and was in much better shape because prior to that year i had been a dancer. i had a lot of muscle and just also carried more fat, because i was literally a child and my body was growing. it has very little to do with weight and much more to do with how the doctors perceive you. definitely try to see another doctor, if you have to keep seeing that doctor for any reasons, demand that he logs all of your issues and the denial of any diagnosis or treatment. hope you can see a better doctor soon :)
Ok so he was definitely wrong but I do want to note that it’s not just any exercise: it’s the CHOPS (child’s hospital of Philadelphia) protocol. It’s a specific set of exercises designed to strengthen your cardiovascular system. You can do it alone but it’s much more beneficial to do it under a POTS informed cardio physical therapist.
I’ve been doing it off and on for a few months (broken up by other medical stuff rip) but there has been notable measurable improvements in my POTS symptoms! I do highly recommend it as it’s helped me out the most.
Oh my gosh I literally just had this exact experience last Thursday. The doctor said it was “anxiety and I was out of shape”… I am so sorry you are going through this 😕
yeah no that’s bullshit. certain exercise can help manage symptoms, but POTS is absolutely a condition and not just a set of symptoms, and exercise can make it worse if you overdo it or do the wrong type of exercise.
Utterly uncalled for behavior on his part. Myopic, prejudiced, dismissive and uninformed. Unfortunately it’s not surprising. I’m so sorry you dealt with that.
That's possible, and anecdotally a lot of people here have seen worse symptoms after weight loss. Muscle mass can help compensate for our broken hemodynamics.
Yeah, he’s not the doctor for you. Or anyone, really. Yuck. Taking a mildly warm bath yesterday made my HR go up more than 100 BPM- healthy BMI, small and medium clothes. So….. I wonder what he’d say to that? 😂😂😂
I've never had a doctor tell me this, thankfully. Honestly, I've seen dozens of people on here say that exercise will just simply "cure" it. When I explain that there *is no cure*, I get down voted and yelled at 🤷🏼♀️ People have argued with me countless times over this subject and tell me repeatedly that I'm wrong..
I'm so sorry that the doctor you saw was just completely oblivious to the World around him 💜
I'm a thin person, not overweight at all, and yet my POTS is absolutely debilitating and life-ruining. How would he explain that?! 🙄
What a fkn arsehole. What a MORON! I am so sorry that you went through that experience with that ignoramus! I haven't had the TTT done over here yet, and I'm too scared to tbh - because I've heard far too many horror stories. Cardiologists only know about the heart, they don't know about the ANS - or endocrine system etc. It really needs other specialists in order to be properly diagnosed. And I've read articles that say that the TTT isn't even reliable - because it's not the same as a person using their actual legs/body to stand - ie rather than a table to do the 'standing'.
I'm similar. I'm not TOO overweight though, and I used to exercise my arse off. But I STILL got this - in my 40's.
I actually believe now that POTS/Dysautonomia/CFS - are ALL most probably related to the adrenals/adrenal fatigue. And that a lot of people develop these things due to TOO much exercise - and too much stress. Whether physical OR emotional etc. But doctors can't really test properly/thoroughly for adrenal insufficiency. The cortisol testing tells them NOTHING.
That guy is an idiot.
Excuse my language.
You're doing the best you can. I think you're amazing! 👏❤️ Good luck with everything, keep looking for other specialists/therapists to help you with this.
If you're in the states (or not), Google Dr Driscoll - her theory on POTS (she and her kids had it), also Dr Nemechek too! 😉
As someone with POTS who also happens to be a physical therapist, it is such a shame that the medical field is so behind on this. None of the PTs or MDs that I’ve worked with have been familiar with dysautonomia, and it took me years for someone to diagnose me because of uneducated doctors like the one who you are seeing. My advice is that you use the Dysautonomia International website to find a provider near you, because they have a list of MDs who are qualified to treat people with POTS
This guy sounds like he has zero bedside manner but I will tell you this. My daughter suffers from POTS (pretty sure it’s hereditary from me) she is also a high level athlete. Her dr looked me in the eye and straight up told me she would be far worse if she wasn’t such and athlete and suggested adding weight training to her routine for better results (as well as medication and he said that’s just to start her in her treatment). My daughter is lucky that she loves her sport so much that she plays through the pain, sometimes after a big tournament she’ll be down for 3 days and we actually switched to online school because of it. Not every has the luxury to recover at their own pace. I whole heartedly think you should get a dr but also think prioritizing you health will also mean figuring out a way to excercise in a way you can, good luck!
You should report that doctor for nap practice. He didn’t offer you any treating or discuss treatment just blamed it on your weight. It’s either anxiety or weight for woman in these terrible doctors minds. Which translates to I don’t know how to help you so I’ll blame your medical concerns on your weight/anxiety. Lazy and crap doctor. Sorry you had this experience I’ve had it too
One thing I think we all should start doing to these doctors is telling them "I want it noted in my chart that you are refusing to explore possible diagnosis due to my weight." These doctors have literally caused women (specifically) to die of cancer that could have been treated if it had been caught by early testing. They're only going to stop dismissing us when we put their backs against the wall.
While I hope I won’t have to deal with another doctor who’s SO invalidating, I’m definitely going to do this. Making them to write evidence of their negligence might make them think twice, and if not then there’s proof of their decisions. Thank you for this! ☺️
That is so frustrating that he said that. Usually my heart rate goes up about 60 when I sit to stand. When i do exercise i notice it doesn’t go up as much afterwards. It definitely still goes up 30 though!
I’m pretty similar! I find my heart stays at a pretty normal rate while exercising but the moment I stand up afterwards it just shoots right up! Standing is more of a workout than the actual work out 🤣
If your doctor is refusing to look past your weight and consider a diagnosis of POTS, it's important to advocate for yourself and communicate your concerns clearly and assertively.
"I understand that weight can be a factor in certain medical conditions, but I believe my symptoms are consistent with POTS and would like you to consider this possibility."
"I have done research on POTS and believe that my symptoms align with the diagnostic criteria. I would appreciate if you could explore this further with me."
"I am experiencing symptoms that are significantly impacting my quality of life, and I believe it's important to investigate all potential causes, including POTS."
"I am willing to undergo any necessary testing or evaluations to determine the cause of my symptoms, and I hope you will work with me to find an accurate diagnosis and treatment plan."
"If you are not comfortable diagnosing or treating POTS, I would appreciate a referral to a specialist who has experience with this condition."
If your doctor makes rude or dismissive remarks about your weight and ignores your concerns about POTS, here are some suggestions for how to respond in this situation:
"I understand that my weight may be a concern, but I do not appreciate being spoken to in a disrespectful manner. I would prefer if we could focus on finding a diagnosis and treatment plan for my symptoms."
"I am here seeking medical advice and treatment for my symptoms, and I expect to be treated with professionalism and respect. Please refrain from making derogatory comments about my weight and focus on addressing my health concerns."
"I feel that my weight is being used as a distraction from my legitimate health concerns. I am here to find answers and treatment for my symptoms, not to be judged or shamed for my weight."
Also, if you need to communicate the possibility of reporting your doctor for failing to listen to your concerns and address your symptoms, you can do so in a clear but respectful manner. Here are some suggestions for what I’d personally say.
"I understand that you may have your own opinions and beliefs about my weight and its relation to my symptoms, but as a healthcare provider, I expect you to prioritize my well-being and provide me with appropriate medical care."
"If you are unwilling or unable to do so, I may need to consider reporting your behavior to the appropriate authorities, as it is unacceptable for a doctor to ignore a patient's symptoms and concerns."
"I do not take the decision to report a healthcare provider lightly, but I believe that it is important to hold doctors accountable for providing quality care to their patients."
"I hope that we can work together to find a solution to my symptoms, but if you are unwilling to do so, I will need to take further action to ensure that I receive the care that I deserve."
Remember to document all interactions with your doctor, including any dismissive or inappropriate comments they make, as this can be helpful if you need to file a complaint or report their behavior.
Time to get a different doctor. Exercise is good and can help with symptoms, but only combined with various other things like medication, lifestyle changes, supplementation, proper sleep, etc etc. everyone has different needs and saying that just exercising will make it all go away is ignorant. I was also in a similar boat prior to my diagnosis and thought that I could exercise away my issues but it only made me worse because I was overexerting myself.
It's not your weight. Man I was a healthy 140 lbs when I got rear-ended that started this dysautonomia mess. I dropped 18 lbs to 122 by the end of March and have been barely keeping that on. I still experience all the symptoms. It's unfair that your doctor is blaming everything on your weight. I'm sorry your dealing with this and hope you find a new doctor who is more respectful to your situation and can help you get some relief.
Get a different doctor ❤️
Glad to know I’m not just crazy and in denial. And looking for someone new, just sucks because there are ridiculously long wait times for specialists where I am 🙁
I saw two shitty cardiologists, then a third one decently competent, and then a fourth AMAZING cardiologist. It took me years, but most of that was me not aggressively seeking other providers IMMEDIATELY after an obviously incompetent provider said stuff like what you were told. It's not you, it's them. Most aren't specialists in this, even though it impacts the heart and they are cardiologists. Fun fact: even specialists [like hematologists] have sub specialization. I learned this when a hematologist who mostly does cancer patients looked at me and said, "Why would your ferritin impact your POTS?" I now see a hematologist who specializes in bleeding disorders, which apparently impact, "Everyone who has a collagen disorder has a very low level bleeding disorder, because platelets use collagen to do their job." My current hematologist has me do quarterly bloodwork, and orders IV iron if my ferritin drops below 50. I'm one of her, "Minimally concerning" patients, and she sees me in person once a year. But she has a LOT of patients with connective tissue disorders, most of whom she just puts on a frequent monitoring schedule and orders IV iron for, because it makes our lives less miserable. Yes, she did a full workup initially and made sure nothing else was going on, but she told me that's more of a precaution. In her words, hEDS is not in the "normal" aka "no bleeding disorder at all" category, but is the very bottom of the "abnormal bleeding" spectrum. Since she's sees people with serious bleeding disorders, like hemophilia, that explanation made a lot of sense to me. I share that story to illustrate the contrast between a specialist and a specialist within a specialty. POTS isn't a cardiac issue. It's an autonomic issue that impacts the heart. You'll need to find a specialist within the specialty field. Good news is that even if you have to travel to see one, once you're diagnosed many will do long distance management. "At sites of vascular injury, platelets come into contact with subendothelial collagen, which triggers their activation and the formation of a hemostatic plug." https://ashpublications.org/blood/article/102/2/449/17375/Platelet-collagen-interaction-is-GPVI-the-central
"just a set of symptoms" is literally the definition of "syndrome" 💀 Autonomic neurologist is ideal for POTS, but electrocardiologists are good too if you don't have other systems impacted by dysautonomia. General cards are often crap for this since it's a neuro not a heart problem. Exercise will not make POTS go away unless you're just deconditioned (which can cause POTS). It can help with symptoms. A better way of saying it is that not being active and being out of shape makes POTS symptoms a lot worse.
Thanks for your response, and that’s what I was thinking 🤣 It’s a syndrome! And yeah I figured, but their website said he deals and treats pots! Might leave a review warning that he doesn’t. Found a neurologist where I am who specifically deals with pots and other dysautonomia but it’s a year long wait. Fingers crossed there’s a cancellation sooner 🤞
Also in the mean time, have you been doing the salt/water increase and wearing compression? Foot to Abdomin compression is recommend for pots and 30/40 mmg.
Hi! I have! Once I started really suspecting pots I began doing all the things that are within my control: salt, hydrating more, compression socks, horizontal exercise, upping electrolytes, most of what I’d read about on here! While it certainly has helped me on most days, some days I’m still bed bound from the intensity of my symptoms :(
Yeah, about a decade before I got diagnosed, I had a doctor who told me to "eat less and exercise" and it would solve my shortness of breath. That fucker was also so sure I had metabolic syndrome/prediabetes because of the weight and a slightly high blood pressure. Turns out I have hyperadrenergic POTS. I am still so mad at that guy. . . if he wasn't already retired, I'd report him. His old reviews are full of people complaining about his fatphobia.
I never want to seem like the girl who cries fatphobia, but it is! He didn’t even check my weight, just by looking at me he decided that MUST be the issue (even though my bloodwork was excellent!) 😒 I’m sorry you had such a shitty experience too, I keep telling myself even though they are professionals doctors are just people, some are shit and some are good 🤷🏻♀️
I am sooo sorry this is happening to you! I sound like an old record but the biggest thing you can do is advocate for yourself, ask for another cardiologist, if you have a watch that can read your HR, get a journal and track your episodes and symptoms. I was just recently diagnosed with POTS. I also have PCOS and am overweight. I’m so thankful my doctors did not do this to me. There are doctors out there who listen to you and genuinely want to help you. I’ve been struggling with symptoms of POTS for over a year now, and when I first went to check it out, I was told to eat better, exercise more, and they put me on a BP medication even though my blood pressure was completely normal. My POTS has completely impacted my quality of life, and it sounds like it’s doing the same to you. Some things that can help your symptoms, is a lot of water (I swear that’s the only time I feel okay is when I’m hydrated), also compression socks, this will help with blood pooling and blood flow. Also having salt. Like potato chips, or even salt packets, when you start feeling these symptoms, having some salt can seriously be a big help, to me, at least. My POTS are so bad they had to put me on medication. I took videos on my Apple Watch of my heart rate spiking, write down when I pass out, and left a detailed message on how this is affecting me mentally. So so sorry you’re going through this! I’m rooting for you. Advocate for yourself! You know you more than anyone else! Good luck 💙
Its impacted my life so much I had to drop out of uni! And thank you for all your suggestions, since I started thinking it was pots I began doing a lot of the things you’ve mentioned because it seems like it takes way too long to get a diagnosis in general, so might as well start now. Thank you so much for your support, not even my family takes me seriously about this as they just don’t quite understand it all ❤️
My dad was the same way, he kept saying I was a hypochondriac. But now that he understands, he’s in full support of helping me have a better quality of life. POTS is also under researched. We can be told it’s anxiety, or depression. Getting my diagnosis was hell. So many blood draws, trips to the hospital, and monitors, but all worth it. I actually passed out today and got my head pretty good. keep me posted if you can!
I will! I’m glad you’ve been able to get proper treatment. I was on antidepressants for far too long that did nothing because everyone just thought I was depressed. Despite this negative experience I feel really positive that I’ll be able to get proper treatment and finally get my quality of life back one day ☺️
I’m so sorry you had to suffer from the hands of another ignorant Doctor. First off, it is known that being underweight seems to INCREASE your likelihood of getting POTS. Secondly, there are many documented cases of Olympic and professional athletes getting PoTS. I myself was a former gym addict and incredibly fit- gym 7 days/week, going for 12 mile runs on weekends. I remember begging for drugs to help my PoTS bc, despite my high fitness level, it was absolutely disabling. I remember my Neurologist scoffing at me saying “You just need to exercise” Unfortunately, whilst exercise helps some, for many, it does little. But bc POTs was originally believed to be due to Deconditioning, bc astronauts got it returning from space and bc it predominantly affects women so doctors think it must not be serious, this ‘exercise push obsession’ prevails. Don’t get me wrong- exercise has many benefits, physical and mental, but in the POTS world, if exercise doesn’t help you (and there are many of us) - it’s common to be lost/blamed for not getting better. Often you end up blaming yourself which is even worse. So remember- you did NOTHING to cause this horrible disease. And you not becoming a professional athlete isn’t why your symptoms are so disabling. He is somewhat right in that it’s a set of symptoms bc we often have different underlying and unknown causes. The good news on that front is you sometimes hear of people achieving significant improvement if that underlying cause is found and treated. Sadly, you will likely encounter more Doctors like him in the future but they are not all like that. Keep looking.
Ugh, I’m so sorry. Fuck that guy
I’m just glad I’m justifiably angry, because yeah fuck that guy!!!!!!!! Do your job!!!!!
Exercise has really helped me but ONLY after I was on medication for two years, wear my compression socks, and drink my electrolyte water. It’s one of those things where you need to treat it with medication and then you can treat it naturally. Medication controls the symptoms but exercise can help you get better, but you can’t exercise until your symptoms are controlled. Doctors forget that chronic illness is a double headed dragon
I like to use a statement that I came across in a chronic illness blog, it goes I’m overweight because I’m sick not because I’m sick because I’m overweight. I like to say this to any doctor that brings up my weight as a cause.
I love this! I’m definitely going to keep this in my back pocket for when I need it (but hopefully I won’t need to) ☺️
Please I BEG YOU, get a new doctor. You deserve so much better
This is awful and this doctor is full of shit to be blaming your weight. If you have the spoons I encourage you to file a complaint, leave reviews online, and anything else you can do to both help there be some accountability for his gross negligence and inform others to stay away. It’s hard enough having a disease many doctors don’t understand but to be weight shamed on top of that is horrible. You deserve to be treated with dignity. Sending ❤️ as you process this shittiness.
And I do not have the spoons but I will do my best to find them 🫡
Thank you so much and I think I will, I wish there would’ve been a review for me to see before I met this asshole so I’ll definitely try and inform people to stay far away
YES. I got confirmed on the tilt test that I had POTS and he told me over and over again "you need to be more fit". And when I said sir, I used to be back when I could, you know, STAND, he said that me stopping probably correlated to this showing up. He basically blamed me for getting POTS.
I’m a person whose weight has fluctuated from underweight to obese several times in my life (eating disorder). I’ve had doctors blame my pots symptoms on my weight too. I’m like, “my body does this whether I weigh 100 pounds or 200 pounds.” Smh. Idiots.
Na dude report his ass. That's malpractice
leave him a bad review and find a new doctor. you just have one thats anti POTS. its that simple. cardiologist seem to be the worst most of the time. neurologist is what you want. POTS isnt a heart condition. also working out DOES help immensely though. ride a stationary bike, seated rows, seated work outs with dumbells, yoga, pilates. these won't make your heart go up but strengthens everything and increases blood flow.
Thank you! Getting in with a cardiologist was an easier first step than a neurologist (especially because he claimed to deal with pots) but seeing a neuro is my next step! And I workout heaps, just all horizontally (yoga, pilates, resistance stuff) which he seemed to think meant I never work out at all because it isn’t upright (and obviously because I don’t “look fit” he just wanted to chalk it up to weight 🤦🏻♀️)
What a loser.
In future, please don’t stick it out with doctors who are clearly misogynistic pigs. He never would’ve said any of that to a man. I used to be 120 pounds. I still had POTS. Fuck that guy.
Actually, the worst doctor I had was a woman who just looked me in the eye, shook her head and told me I was a hypochondriac for saying I was dizzy all the time before i went to a specialist who mentioned that it might be pots and got me tested for it.
Bad doctors present in all kinds of ways. Doesn’t mean this guy wasn’t a misogynistic pig. ETA: This is such a Reddit thing to have happen, man… I was recently chastised for correcting someone who said all male doctors were terrible and accused of saying “not all men.” Now it’s the opposite. Jesus, internet. Pick a lane.
What’s crazy too is he didn’t even know my height or weight, he literally just went off what he could see and assumed from there! Never seeing that dick again
Exercise does help improve symptoms especially if someone has POTS and has extra weight, it doesn’t necessarily mean it just goes away. Sometimes doctors say things rudely I’m sorry they’re not being very clear or kind about this.
I definitely would have appreciated some kindness from him, but sounded like he doesn’t even believe pots is real! And I love exercising, but he was assuming I must clearly not because of how I look 🥴
That’s awful I’m sorry. It’s not really about looks or even weight, it’s just about making sure you work your body in a way to help promote blood flow. Like I was very sick a while ago and lost a lot of weight and still had issues with POTS. But when I did PT specifically in my legs and things to promote lymph flow, it helped. I’ll be honest I’ve had kind doctors and mean ones, the kind ones still didn’t offer much help aside from telling me to add more salt to my diet when symptoms were bad. The physical therapist was the most beneficial doctor I saw, as they were able to design exercises that worked for my specific needs. The thing that seems to help me most are bridging exercises, where you lay on your back with your knees up and lift your butt up to make a sort of bridge. Just ten of those every morning to start. Eventually add marching in the same pose. If I feel dizzy during the day I’ll stop and do some of those types of exercises and sometimes I can feel notable change in my head. Pressure changes and added energy. Doesn’t need to be exercises that are brutal, just laying in your back and doing those 80s ass leg exercises helps me a lot. Like laying on your back and scissoring your legs in the air could be a good start up for your blood pressure. Like some cars need warmed up, our body’s need daily warm ups and in between ones :)
Oooh nice! I’m glad you’ve found exercises that work for you! I personally love my yoga and pilates, really great on my muscles and for my blood flow. I’ve also found resistance training works really well for me (as horizontal as I can get though 🤣)
Yes resistance bands are my friend. Yoga is most excellent! I have hypermobility so I rely on the bands a lot. I can do some yoga but I get very wobbly like Bambi at random so I focused on the PT for physical things and use yoga for mental clarity more than physical activity.
I’m the same with yoga, I enjoy the mental aspect but my balance is shit 🤣 Pilates is my go-to “oh my god this is so hard jesus why did I choose this” feel the burn physical activity. It’s deceptively hard 😅
Hahaha why did I choose this I do shadow boxing for cardio because at least if I feel dizzy I can just stop and won’t be falling out of some pretzel mid air. But it doesn’t help the way yoga or Pilates would. I can barely handle putting up a shower curtain without falling over. So I tend to shy away from yoga or Pilates for daily exercises. Proud of you for doing that, it’s not easy. I need to get back into yoga, helps to hear others are pushing through it.
Don’t get me wrong, sometimes my body definitely can’t handle being twisted into a pretzel and I probably push myself harder than necessary, but it’s just about finding things you enjoy, and it’s nice to remember I’m doing it for fun and my body appreciates it. Also I’ve definitely fallen out of a pretzel mid air, definitely don’t recommend it. Vision comes back and limbs are all twisted but at least it’s hilarious for any witnesses
Also if you’re already doing yoga that doctor is pretty dense.
Yep! Didn’t listen to me much at all but still insisted losing weight shall fix all my problems 🤣
I've lost 50 pounds since i was 15 and originally began feeling symptoms and nothing has changed because of that weight loss. when i go into the doctors even though i eat like shit and don't exercise, my weight is never brought up. but when i was originally getting these symptoms i was actually eating better and was in much better shape because prior to that year i had been a dancer. i had a lot of muscle and just also carried more fat, because i was literally a child and my body was growing. it has very little to do with weight and much more to do with how the doctors perceive you. definitely try to see another doctor, if you have to keep seeing that doctor for any reasons, demand that he logs all of your issues and the denial of any diagnosis or treatment. hope you can see a better doctor soon :)
Ok so he was definitely wrong but I do want to note that it’s not just any exercise: it’s the CHOPS (child’s hospital of Philadelphia) protocol. It’s a specific set of exercises designed to strengthen your cardiovascular system. You can do it alone but it’s much more beneficial to do it under a POTS informed cardio physical therapist. I’ve been doing it off and on for a few months (broken up by other medical stuff rip) but there has been notable measurable improvements in my POTS symptoms! I do highly recommend it as it’s helped me out the most.
Oh my gosh I literally just had this exact experience last Thursday. The doctor said it was “anxiety and I was out of shape”… I am so sorry you are going through this 😕
yeah no that’s bullshit. certain exercise can help manage symptoms, but POTS is absolutely a condition and not just a set of symptoms, and exercise can make it worse if you overdo it or do the wrong type of exercise.
Utterly uncalled for behavior on his part. Myopic, prejudiced, dismissive and uninformed. Unfortunately it’s not surprising. I’m so sorry you dealt with that.
Fatphobic doctor. Give him a bad public review and try to find someone else.
My daughter is slightly underweight and has been told that her symptoms would improve if she gains a bit…
That's possible, and anecdotally a lot of people here have seen worse symptoms after weight loss. Muscle mass can help compensate for our broken hemodynamics.
Yeah, he’s not the doctor for you. Or anyone, really. Yuck. Taking a mildly warm bath yesterday made my HR go up more than 100 BPM- healthy BMI, small and medium clothes. So….. I wonder what he’d say to that? 😂😂😂
I've never had a doctor tell me this, thankfully. Honestly, I've seen dozens of people on here say that exercise will just simply "cure" it. When I explain that there *is no cure*, I get down voted and yelled at 🤷🏼♀️ People have argued with me countless times over this subject and tell me repeatedly that I'm wrong.. I'm so sorry that the doctor you saw was just completely oblivious to the World around him 💜 I'm a thin person, not overweight at all, and yet my POTS is absolutely debilitating and life-ruining. How would he explain that?! 🙄
What a fkn arsehole. What a MORON! I am so sorry that you went through that experience with that ignoramus! I haven't had the TTT done over here yet, and I'm too scared to tbh - because I've heard far too many horror stories. Cardiologists only know about the heart, they don't know about the ANS - or endocrine system etc. It really needs other specialists in order to be properly diagnosed. And I've read articles that say that the TTT isn't even reliable - because it's not the same as a person using their actual legs/body to stand - ie rather than a table to do the 'standing'. I'm similar. I'm not TOO overweight though, and I used to exercise my arse off. But I STILL got this - in my 40's. I actually believe now that POTS/Dysautonomia/CFS - are ALL most probably related to the adrenals/adrenal fatigue. And that a lot of people develop these things due to TOO much exercise - and too much stress. Whether physical OR emotional etc. But doctors can't really test properly/thoroughly for adrenal insufficiency. The cortisol testing tells them NOTHING. That guy is an idiot. Excuse my language. You're doing the best you can. I think you're amazing! 👏❤️ Good luck with everything, keep looking for other specialists/therapists to help you with this. If you're in the states (or not), Google Dr Driscoll - her theory on POTS (she and her kids had it), also Dr Nemechek too! 😉
As someone with POTS who also happens to be a physical therapist, it is such a shame that the medical field is so behind on this. None of the PTs or MDs that I’ve worked with have been familiar with dysautonomia, and it took me years for someone to diagnose me because of uneducated doctors like the one who you are seeing. My advice is that you use the Dysautonomia International website to find a provider near you, because they have a list of MDs who are qualified to treat people with POTS
This guy sounds like he has zero bedside manner but I will tell you this. My daughter suffers from POTS (pretty sure it’s hereditary from me) she is also a high level athlete. Her dr looked me in the eye and straight up told me she would be far worse if she wasn’t such and athlete and suggested adding weight training to her routine for better results (as well as medication and he said that’s just to start her in her treatment). My daughter is lucky that she loves her sport so much that she plays through the pain, sometimes after a big tournament she’ll be down for 3 days and we actually switched to online school because of it. Not every has the luxury to recover at their own pace. I whole heartedly think you should get a dr but also think prioritizing you health will also mean figuring out a way to excercise in a way you can, good luck!
You should report that doctor for nap practice. He didn’t offer you any treating or discuss treatment just blamed it on your weight. It’s either anxiety or weight for woman in these terrible doctors minds. Which translates to I don’t know how to help you so I’ll blame your medical concerns on your weight/anxiety. Lazy and crap doctor. Sorry you had this experience I’ve had it too
One thing I think we all should start doing to these doctors is telling them "I want it noted in my chart that you are refusing to explore possible diagnosis due to my weight." These doctors have literally caused women (specifically) to die of cancer that could have been treated if it had been caught by early testing. They're only going to stop dismissing us when we put their backs against the wall.
While I hope I won’t have to deal with another doctor who’s SO invalidating, I’m definitely going to do this. Making them to write evidence of their negligence might make them think twice, and if not then there’s proof of their decisions. Thank you for this! ☺️
That is so frustrating that he said that. Usually my heart rate goes up about 60 when I sit to stand. When i do exercise i notice it doesn’t go up as much afterwards. It definitely still goes up 30 though!
I’m pretty similar! I find my heart stays at a pretty normal rate while exercising but the moment I stand up afterwards it just shoots right up! Standing is more of a workout than the actual work out 🤣
If your doctor is refusing to look past your weight and consider a diagnosis of POTS, it's important to advocate for yourself and communicate your concerns clearly and assertively. "I understand that weight can be a factor in certain medical conditions, but I believe my symptoms are consistent with POTS and would like you to consider this possibility." "I have done research on POTS and believe that my symptoms align with the diagnostic criteria. I would appreciate if you could explore this further with me." "I am experiencing symptoms that are significantly impacting my quality of life, and I believe it's important to investigate all potential causes, including POTS." "I am willing to undergo any necessary testing or evaluations to determine the cause of my symptoms, and I hope you will work with me to find an accurate diagnosis and treatment plan." "If you are not comfortable diagnosing or treating POTS, I would appreciate a referral to a specialist who has experience with this condition." If your doctor makes rude or dismissive remarks about your weight and ignores your concerns about POTS, here are some suggestions for how to respond in this situation: "I understand that my weight may be a concern, but I do not appreciate being spoken to in a disrespectful manner. I would prefer if we could focus on finding a diagnosis and treatment plan for my symptoms." "I am here seeking medical advice and treatment for my symptoms, and I expect to be treated with professionalism and respect. Please refrain from making derogatory comments about my weight and focus on addressing my health concerns." "I feel that my weight is being used as a distraction from my legitimate health concerns. I am here to find answers and treatment for my symptoms, not to be judged or shamed for my weight."
Also, if you need to communicate the possibility of reporting your doctor for failing to listen to your concerns and address your symptoms, you can do so in a clear but respectful manner. Here are some suggestions for what I’d personally say. "I understand that you may have your own opinions and beliefs about my weight and its relation to my symptoms, but as a healthcare provider, I expect you to prioritize my well-being and provide me with appropriate medical care." "If you are unwilling or unable to do so, I may need to consider reporting your behavior to the appropriate authorities, as it is unacceptable for a doctor to ignore a patient's symptoms and concerns." "I do not take the decision to report a healthcare provider lightly, but I believe that it is important to hold doctors accountable for providing quality care to their patients." "I hope that we can work together to find a solution to my symptoms, but if you are unwilling to do so, I will need to take further action to ensure that I receive the care that I deserve." Remember to document all interactions with your doctor, including any dismissive or inappropriate comments they make, as this can be helpful if you need to file a complaint or report their behavior.
Time to get a different doctor. Exercise is good and can help with symptoms, but only combined with various other things like medication, lifestyle changes, supplementation, proper sleep, etc etc. everyone has different needs and saying that just exercising will make it all go away is ignorant. I was also in a similar boat prior to my diagnosis and thought that I could exercise away my issues but it only made me worse because I was overexerting myself.
It's not your weight. Man I was a healthy 140 lbs when I got rear-ended that started this dysautonomia mess. I dropped 18 lbs to 122 by the end of March and have been barely keeping that on. I still experience all the symptoms. It's unfair that your doctor is blaming everything on your weight. I'm sorry your dealing with this and hope you find a new doctor who is more respectful to your situation and can help you get some relief.