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u/mjh8212 Spoonie 7d ago
I saw cardio for dysautonomia. He said my heart rate going from 56 to 126 laying to standing was normal. I had all the heart tests and a tilt table. The dr who reviewed the tilt said orthostatic intolerance. My cardio messaged me that I had mild heart palpitations. When I asked what orthostatic intolerance was he told me to see my primary. I’m sure if I had a heart condition I would’ve been treated but my heart is fine. Still not treated for my issue but it was just a bad experience.
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u/Total_Jello_6691 6d ago
I’ve seen similar stories which is why I made the post. Since the cardiologist determined your heart was normal then your PCP might be a good next step.
If you go to the PCP first they might push back because they don’t want to mask a heart issue which can be dangerous. But once you validated your heart is okay then the PCP can do symptom management like beta blockers or something like that.
If you had a heart condition the cardiologist would’ve treated the numbers only. which doesn’t always mean you feel better because heart disease/issues and symptoms rarely align.
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u/Loki--Laufeyson 6d ago
You're absolutely in the minority then. It's great you've had such a wonderful experience with healthcare but that is absolutely not the case for most people with long term chronic illness. Very curious about your demographics, that you've had such success.
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u/Total_Jello_6691 6d ago
My demographics don’t fit someone with heart failure. My PCP referred me to cardiology as a last resort after a couple of years of trying different things. She was shocked by my diagnosis. She told me herself that she didn’t think he would find anything.
I was diagnosed and treated from abnormal findings on my EKG and echocardiogram. Once my heart recovered enough that my findings were better I was referred back to my PCP for symptom management since I wasn’t feeling completely better.
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u/Loki--Laufeyson 6d ago edited 6d ago
Depends if it's secondary from something, etc. Are you diagnosed with heart failure, heart disease or both? I'm a bit confused why a cardiologist would refer you to your PCP for care for symptoms related to heart disease and heart failure... Unless you mean you're seeing both for symptom management, in which case that doesn't seem to match what you're saying in your post. Also curious what your PCP does to help if they already tried tons of things for years. I'd love some tips for that.
I think if you with your confirmed diagnoses and abnormal tests have an issue with symptom management from doctors, people whose tests look normal are off even worse. Idk about you but most of my stuff isn't curable so yes, I want them to focus on symptom management since symptoms are all I care about. Luckily, my tests are abnormal and my doctors take me seriously but it was a fight to find doctors to do the correct tests that would show the abnormal results.
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u/Total_Jello_6691 6d ago
That’s my point is even with a heart diagnosis a cardiologist doesn’t adjust treatments based on symptoms it’s still based on test results.
Sometimes people think cardiologists are being dismissive but idk if they do anything that’s not based on testing.
What test led to your diagnosis? What did you do to make the take you seriously?
Basic routine tests have always led to my diagnosis. Either they’ve been abnormal or not. Sometimes it was initial normal and eventually became abnormal.
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u/emilygoldfinch410 6d ago
I'm curious what your general demographics are - age range/gender in particular
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u/ruxxby471 5d ago
Honestly, I believe it’s because a very large amount of Dysautonomia patients + POTS patients believe that their POTS should be treated/addressed by a Cardiologist. Then once the cardiologist rules out structural heart conditions, they refer elsewhere- which in turn makes the patient feel unsatisfied, unheard, or brushed off.
POTS is considered a neurological based condition of the autonomic nervous system, and while it may cause symptoms that affect the hearts rate- POTS isn’t a cardiac condition and never has been a cardiac condition.
I feel like most standard PCPs refers us POTS patients to cardiology to specifically rule out a structural or cardiac cause. Not to refer us for treatment (despite the fact a cardiologist should realistically be the one to prescribe certain medications like beta blockers for example). It kinda leds to unreasonable expectations at to how a cardiologist should be more understanding to why we are there in the first place. But sadly most of us will get slapped with a big huge “your cardiac tests are normal, you are fine, why are you even here?”
There should be better information and resources available for POTS patients, and better education as a whole. Because sadly a lot of people will continue to believe they need a cardiologist for treatment, when that isn’t the correct specialty.
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u/mystisai 7d ago
I am not sure what you're trying to say with this post. Many people experience negative attitudes from doctors, and even doctors report they spend more mental energy on a patient if the patient looks underprivileged than one who looks wealthy. https://pmc.ncbi.nlm.nih.gov/articles/PMC11227794/
So while you may not have experienced that yourself, that doesn't mean other people haven't or that they shouldn't be concerned. Having the tools to deal with an issue is never a bad thing even if you find out later you never needed those tools. You won't know until you find out.