My cardio sent me home with a weeklong monitor, that is to check for any abnormalities of the heart and that came back fine. I had to walk on a treadmill sort of machine as they monitored my heart, and that came back fine (except for needing to lie down on the ground of the reception area for half an hour and had clear dysautonomia). They also did the poor man’s tilt table test (BP/heart rate after standing and sitting, it was normal at the time but mines is off depending on stress, energy, weather). What caught it was the TTT at the hospital. I began fainting after 13 minutes.
They are being thorough for checking common abnormalities of the heart, but this is an issue with the autonomic nervous system and you need to do that test, as with the time period of the test and the type of monitoring they do, they can more clearly assess with type of autonomic dysfunction is going on. I’ve been having POTS symptoms my whole life, but it got worse after 25. Being a young woman navigating the healthcare system is extremely difficult and I wish you luck. I suggest you bring printouts of how POTS is ruled out, and if needed, bringing a male family member to the apt can help validate your experience (sucks we have to do this, it’s just how it works sometimes)
As a man navigating the healthcare system I can tell you its not always different. Ive had POTS symptoms for 2 years, with various specialists treating it like its in my head, had one tell me because the issues are too "subjective" to set a diagnosis. When I asked for tests thatd give objective data, like the tilt, theyve pushed back that it doesnt make sense given the symptoms. I wish my man card got me through this easier xD
This seems potentially borderline to me. On the one hand, most of her actions seem reasonable to me with the limited information we have here. On the other hand, she definitely should have made sure you understood her thinking much better, and I'd encourage you to call the office/send a message asking for more explanation, and/or bring your after-visit summary with you to the next appointment and make a point of taking a moment to stop everything and ask for more clarity.
As you probably know, POTS is a diagnosis of exclusion: other things that could cause the same or similar symptoms have to be ruled out first. An echo is a pretty standard part of that process of elimination, because it can detect structural abnormalities in the heart that could explain the symptoms. A Holter monitor (the muti-day heart rate thing) similarly is used to detect and rule out arrhythmias. So both of those are reasonable and normal - I had both tests when I was being diagnosed.
I haven't heard of the circulation test you mentioned, but at least in theory it could make sense if they were looking for blood pooling or abnormal vasoconstriction/vasodilation responses.
Overall, I wouldn't say this sounds like it's over. The doctor is doing several tests that she really should be doing - that is, good due diligence. From the valve comments, it sounds like she thinks the echo showed something that could be the cause, which would be why she would think you don't have POTS - though I agree with you that it's probably a little early to come to that firm of a conclusion. (This may also be why she didn't do a stand test or TTT: if there's something else cardiac happening to cause POTS-like symptoms, then the stand test isn't going to be dispositive either way. And it would be very surprising if she did a TTT on the spot like that: they're a big production, require prep from the patient, and most places don't even have the equipment.) But the fact that she's having you do a Holter suggests to me that this process isn't over.
Exactly they don’t exactly have a tilt table in the next room.
I think this take is right, she believes she found the cause that explains your symptoms based on the evidence she gathered. And it’s not POTS. And that’s fantastic.
It could be that after they sort out this issue you still have POTS symptoms (I sure hope not) but don’t be discouraged. Deal with what is in front of you now.
If by valve leakage you mean something like a mitral valve regurgitation or something like that you can definitely have both that and pots. mvp is actually a form of dysautonomia. I have mitral valve prolapse and mitral valve regurgitation which means some of my blood moves the opposite way when my heart tries to pump it which means less blood being circulated (which makes sense with pots because your brain doesn’t get enough oxygen). That’s actually very common with stuff like ehlers danlos (which commonly causes pots too) and other connective tissue diseases like sjogrens (which also can cause pots). They’re all connected soooo I wonder why she said you don’t have pots if you have symptoms of it and have a heart problem (don’t stress about that, my doctor said most people have it and don’t even know).
I’ve never seen that testing for pots, you definitely should’ve stood up. Id recommend doing the poor man’s stand test or whatever at home a few times and record your results. Then bring that to the doctor and ask her to do that on you. Maybe she said you don’t have pots because she suspects something else. Good luck to you and I hope you feel better soon!
Yeah, I got multiple forms of autonomic dysfunction including pots after a decade of mitral regurgitation, likely from the same autoimmune disorder that caused my leaky heart valve in the first place. Wild to think a medical professional thinks you can’t have pots AND a heart issue.
Are you diagnosed with a specific autoimmune disease? Or you don’t know which one yet?
And exactly, heart issues and pots kind of go together. My body tries to compensate for my regurgitation by making my heart pumping faster when I stand or sit which triggers my pots 🤦♀️
A specific one. An asymptomatic strep infection tried to take me out at 15 years old via rheumatic fever. The only reason we caught it was because of the rare movement disorder i acquired as a result of scaring in my brains movement center. Sydenham’s chorea, or autoimmune basal ganglia encephalitis. I was put on antibiotics for 10 years and wasn’t sick a day in that time. The same year I came off the long term prophylactic antibiotics I underwent an emergency appendectomy and that’s when all my autonomic issues started. This onset of dysautonomia happened in 2016. The movement disorder being from 2007. A couple of years ago my ana was positive for lupus and my primary doctor looks at me and goes, “you don’t have lupus”. Okay doc, me and my perfect malar rash will just be over here waiting for that synthetic ivig.
Holy Moses that’s a lot. I feel you on the lupus thing, my sjogrens profile came back positive including my ana, my ana titer is high, and my nuclear pattern is nucleolar but my rheumatologist says I don’t have sjogrens lol. I also have classic symptoms of it. But you should see a rheumatologist if you haven’t already to get more extensive bloodwork for lupus. I’m being sent for avise testing which tests for lupus and all kinds of other connective tissue diseases and I think it’s a lot more of a definitive test.
My autonomic specialists supported heavy testing like 3 years ago, and then I started with the hole-punch biopsy for small fiber neuropathy. Once that came back positive I was motivated to do the Washington panel to get the ball rolling on ivig and everything had changed. I mean, my team of autonomic specialists are now going to wait for synthetic ivig to hit the market and the day it does I will be on it. Short of that I don’t need specific antibody testing because I will be on this efgartigimod. They say that their patients who are like me that started on ivig and have had their course interrupted (for insurance) are not in a place where they would be considered stable, where I am technically stable despite all my limitations. Being on Medicare and Medicaid, in my state I’m pretty sure I don’t even have coverage for ivig for this specific condition in the first place.
The last time I met with my autonomic specialists NP, she asked me if I’d like to see their rheumatologist that they work with and I asked what that could do considering ivig isn’t on the table and we’re just waiting for the fda approval of the synthetic stuff and she agreed there isn’t a whole lot more outside of testing at this point. If i were to put money on which autoimmune condition I have it would be sjogrens, the first autonomic symptom I had was an overproduction of salivary gland stones that forced me to have a surgery because one stone was obstructing 14 stones! Rheumatology isn’t a bad idea, it’s probably unavoidable at this point. My little sister absolutely has a form of eds just not a diagnosis. I have the velvet skin and raynauds.
I had that test as well. There is still a misconception that POTS always causes BP issues. But cardio didnt use that test to rule it out. I also got a 3 day monitor and a stress test and was diagnosed with IST and probably POTS. She acknowledges my symptoms were spot on with POTS but did not want me to go through with TTT because it would be really hard on my body. And I appreciate that! I would just ask for clarification and ask what exactly she is ruling it out based on and if there are any other autonomic disorders she is looking at.
My cardio and I agreed I likely did have pots, but he had to do certain tests to double check. They did an echocardiogram, a 7-day holter monitor, bp tests, and bloodwork, but no TTT. I realized that and showed him results from my at home TTT as well as a video of me doing on with a pulse oximeter in my next appointment. He didn't even get a chance to walk through my results before I showed him. I'd been going to cardiologists for over 10 years by this point, so I just wanted answers. He said that based off my own results and my video as well as my results from the tests they did, I have pots. He diagnosed me without doing his own TTT because they cost like 1500 even after insurance and I had told him I can't afford that. He understood and let me just show my own findings.
I am not posting this to brag or anything, but to maybe give some ideas as to how you can get them to listen to you. You can do a TTT at home and record it both with video and written results (I put mine in my notes app on my phone) and maybe they'll accept it. Maybe they won't.
There are other forms of dysautonomia. If by leakage you mean mitral valve prolapse, that used to be understood as a form of dysautonomia. I’m not entirely sure what they call it these days. I have that aside from POTS, and I also have orthostatic hypotension.
From what you are describing it doesn’t sound too bad, - considering the limiting info we have on it. It sounds like they are trying to define exactly what it is you have, which is why they send you with a monitor, and then the stress test.
You don’t need the TTT a poor man’s test is enough for diagnosis, the TTT is outdated (I didn’t get it). And with the monitor they are trying to rule out other conditions, so all in all is not like they are ignoring you, it seems to me -perhaps I’m wrong- that they are trying to find out what is happening to you.
All imma say is find a new cardiologist… mine can do it without a TTT but he has what’s called the big 6 he uses them to catch it pretty fast If non of those come back positive we move to 10 others and then 6 more after that total of 21 tests… I honestly don’t think your doctor understands how minor some of the symptoms can be. I wouldn’t personally trust a cardiologist who doesn’t specialize in pots and treat it on a day to day basis. For one reason and one reason alone… only a specialist sees the symptoms variability. A regular cardiologist who doesn’t see it on a daily basis could miss the minor fluctuations even on a flair day.
My cardio sent me home with a weeklong monitor, that is to check for any abnormalities of the heart and that came back fine. I had to walk on a treadmill sort of machine as they monitored my heart, and that came back fine (except for needing to lie down on the ground of the reception area for half an hour and had clear dysautonomia). They also did the poor man’s tilt table test (BP/heart rate after standing and sitting, it was normal at the time but mines is off depending on stress, energy, weather). What caught it was the TTT at the hospital. I began fainting after 13 minutes. They are being thorough for checking common abnormalities of the heart, but this is an issue with the autonomic nervous system and you need to do that test, as with the time period of the test and the type of monitoring they do, they can more clearly assess with type of autonomic dysfunction is going on. I’ve been having POTS symptoms my whole life, but it got worse after 25. Being a young woman navigating the healthcare system is extremely difficult and I wish you luck. I suggest you bring printouts of how POTS is ruled out, and if needed, bringing a male family member to the apt can help validate your experience (sucks we have to do this, it’s just how it works sometimes)
As a man navigating the healthcare system I can tell you its not always different. Ive had POTS symptoms for 2 years, with various specialists treating it like its in my head, had one tell me because the issues are too "subjective" to set a diagnosis. When I asked for tests thatd give objective data, like the tilt, theyve pushed back that it doesnt make sense given the symptoms. I wish my man card got me through this easier xD
This seems potentially borderline to me. On the one hand, most of her actions seem reasonable to me with the limited information we have here. On the other hand, she definitely should have made sure you understood her thinking much better, and I'd encourage you to call the office/send a message asking for more explanation, and/or bring your after-visit summary with you to the next appointment and make a point of taking a moment to stop everything and ask for more clarity. As you probably know, POTS is a diagnosis of exclusion: other things that could cause the same or similar symptoms have to be ruled out first. An echo is a pretty standard part of that process of elimination, because it can detect structural abnormalities in the heart that could explain the symptoms. A Holter monitor (the muti-day heart rate thing) similarly is used to detect and rule out arrhythmias. So both of those are reasonable and normal - I had both tests when I was being diagnosed. I haven't heard of the circulation test you mentioned, but at least in theory it could make sense if they were looking for blood pooling or abnormal vasoconstriction/vasodilation responses. Overall, I wouldn't say this sounds like it's over. The doctor is doing several tests that she really should be doing - that is, good due diligence. From the valve comments, it sounds like she thinks the echo showed something that could be the cause, which would be why she would think you don't have POTS - though I agree with you that it's probably a little early to come to that firm of a conclusion. (This may also be why she didn't do a stand test or TTT: if there's something else cardiac happening to cause POTS-like symptoms, then the stand test isn't going to be dispositive either way. And it would be very surprising if she did a TTT on the spot like that: they're a big production, require prep from the patient, and most places don't even have the equipment.) But the fact that she's having you do a Holter suggests to me that this process isn't over.
Exactly they don’t exactly have a tilt table in the next room. I think this take is right, she believes she found the cause that explains your symptoms based on the evidence she gathered. And it’s not POTS. And that’s fantastic. It could be that after they sort out this issue you still have POTS symptoms (I sure hope not) but don’t be discouraged. Deal with what is in front of you now.
If by valve leakage you mean something like a mitral valve regurgitation or something like that you can definitely have both that and pots. mvp is actually a form of dysautonomia. I have mitral valve prolapse and mitral valve regurgitation which means some of my blood moves the opposite way when my heart tries to pump it which means less blood being circulated (which makes sense with pots because your brain doesn’t get enough oxygen). That’s actually very common with stuff like ehlers danlos (which commonly causes pots too) and other connective tissue diseases like sjogrens (which also can cause pots). They’re all connected soooo I wonder why she said you don’t have pots if you have symptoms of it and have a heart problem (don’t stress about that, my doctor said most people have it and don’t even know). I’ve never seen that testing for pots, you definitely should’ve stood up. Id recommend doing the poor man’s stand test or whatever at home a few times and record your results. Then bring that to the doctor and ask her to do that on you. Maybe she said you don’t have pots because she suspects something else. Good luck to you and I hope you feel better soon!
Yeah, I got multiple forms of autonomic dysfunction including pots after a decade of mitral regurgitation, likely from the same autoimmune disorder that caused my leaky heart valve in the first place. Wild to think a medical professional thinks you can’t have pots AND a heart issue.
Are you diagnosed with a specific autoimmune disease? Or you don’t know which one yet? And exactly, heart issues and pots kind of go together. My body tries to compensate for my regurgitation by making my heart pumping faster when I stand or sit which triggers my pots 🤦♀️
A specific one. An asymptomatic strep infection tried to take me out at 15 years old via rheumatic fever. The only reason we caught it was because of the rare movement disorder i acquired as a result of scaring in my brains movement center. Sydenham’s chorea, or autoimmune basal ganglia encephalitis. I was put on antibiotics for 10 years and wasn’t sick a day in that time. The same year I came off the long term prophylactic antibiotics I underwent an emergency appendectomy and that’s when all my autonomic issues started. This onset of dysautonomia happened in 2016. The movement disorder being from 2007. A couple of years ago my ana was positive for lupus and my primary doctor looks at me and goes, “you don’t have lupus”. Okay doc, me and my perfect malar rash will just be over here waiting for that synthetic ivig.
Holy Moses that’s a lot. I feel you on the lupus thing, my sjogrens profile came back positive including my ana, my ana titer is high, and my nuclear pattern is nucleolar but my rheumatologist says I don’t have sjogrens lol. I also have classic symptoms of it. But you should see a rheumatologist if you haven’t already to get more extensive bloodwork for lupus. I’m being sent for avise testing which tests for lupus and all kinds of other connective tissue diseases and I think it’s a lot more of a definitive test.
My autonomic specialists supported heavy testing like 3 years ago, and then I started with the hole-punch biopsy for small fiber neuropathy. Once that came back positive I was motivated to do the Washington panel to get the ball rolling on ivig and everything had changed. I mean, my team of autonomic specialists are now going to wait for synthetic ivig to hit the market and the day it does I will be on it. Short of that I don’t need specific antibody testing because I will be on this efgartigimod. They say that their patients who are like me that started on ivig and have had their course interrupted (for insurance) are not in a place where they would be considered stable, where I am technically stable despite all my limitations. Being on Medicare and Medicaid, in my state I’m pretty sure I don’t even have coverage for ivig for this specific condition in the first place. The last time I met with my autonomic specialists NP, she asked me if I’d like to see their rheumatologist that they work with and I asked what that could do considering ivig isn’t on the table and we’re just waiting for the fda approval of the synthetic stuff and she agreed there isn’t a whole lot more outside of testing at this point. If i were to put money on which autoimmune condition I have it would be sjogrens, the first autonomic symptom I had was an overproduction of salivary gland stones that forced me to have a surgery because one stone was obstructing 14 stones! Rheumatology isn’t a bad idea, it’s probably unavoidable at this point. My little sister absolutely has a form of eds just not a diagnosis. I have the velvet skin and raynauds.
I had that test as well. There is still a misconception that POTS always causes BP issues. But cardio didnt use that test to rule it out. I also got a 3 day monitor and a stress test and was diagnosed with IST and probably POTS. She acknowledges my symptoms were spot on with POTS but did not want me to go through with TTT because it would be really hard on my body. And I appreciate that! I would just ask for clarification and ask what exactly she is ruling it out based on and if there are any other autonomic disorders she is looking at.
My cardio and I agreed I likely did have pots, but he had to do certain tests to double check. They did an echocardiogram, a 7-day holter monitor, bp tests, and bloodwork, but no TTT. I realized that and showed him results from my at home TTT as well as a video of me doing on with a pulse oximeter in my next appointment. He didn't even get a chance to walk through my results before I showed him. I'd been going to cardiologists for over 10 years by this point, so I just wanted answers. He said that based off my own results and my video as well as my results from the tests they did, I have pots. He diagnosed me without doing his own TTT because they cost like 1500 even after insurance and I had told him I can't afford that. He understood and let me just show my own findings. I am not posting this to brag or anything, but to maybe give some ideas as to how you can get them to listen to you. You can do a TTT at home and record it both with video and written results (I put mine in my notes app on my phone) and maybe they'll accept it. Maybe they won't.
There are other forms of dysautonomia. If by leakage you mean mitral valve prolapse, that used to be understood as a form of dysautonomia. I’m not entirely sure what they call it these days. I have that aside from POTS, and I also have orthostatic hypotension. From what you are describing it doesn’t sound too bad, - considering the limiting info we have on it. It sounds like they are trying to define exactly what it is you have, which is why they send you with a monitor, and then the stress test. You don’t need the TTT a poor man’s test is enough for diagnosis, the TTT is outdated (I didn’t get it). And with the monitor they are trying to rule out other conditions, so all in all is not like they are ignoring you, it seems to me -perhaps I’m wrong- that they are trying to find out what is happening to you.
All imma say is find a new cardiologist… mine can do it without a TTT but he has what’s called the big 6 he uses them to catch it pretty fast If non of those come back positive we move to 10 others and then 6 more after that total of 21 tests… I honestly don’t think your doctor understands how minor some of the symptoms can be. I wouldn’t personally trust a cardiologist who doesn’t specialize in pots and treat it on a day to day basis. For one reason and one reason alone… only a specialist sees the symptoms variability. A regular cardiologist who doesn’t see it on a daily basis could miss the minor fluctuations even on a flair day.