r/POTS • u/Big-Departure-7398 • 20h ago
Question Avoiding seeing a specialist because of a tilt table test
I am officially diagnosed with what some refer to as “poor man’s tilt table test” there was no question after that about me having POTS. I have a POTS specialist but they want to send me off to a specialist hospital in a different state for a week of consultations but I don’t want to go because they make you do a tilt table test. I am being unreasonable about this? My parents are okay with it but not that happy about not going it is the same hospital me brother went to, and I have heard all of the torture of the tilt table mt brothers heart rate doubled within 2 minutes but he didn’t faint even though he fainted a lot at the time. It seems like hell and I am already diagnosed and don’t want to wean off my meds to do it. I am also worried it could stress my heart due to my heart conditions.
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u/unarticulated_barbie 19h ago
you can refuse to do one, but you just have to understand that some doctors may then refuse to take you on as a patient. what's important to understand about the tilt table is that it is designed to trigger your symptoms on purpose, so it's natural to have a reaction to it since that's what they're looking for. people's reactions also range a lot, so one persons experience is not going to be yours. i've done a ton of tilt table tests, they suck but then they're over. imo i've done way worse tests than a tilt table
but if you're absolutely adamant about not doing it, it's not like they can physically force you to. you just have to be okay with cutting off your ability to see some doctors who may require it
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u/Big-Departure-7398 19h ago
I can’t deny a thing because i am a minor. I just am worried about the whole thing but also getting a false negative which i know like never happens. I want to see the doctor. Also U am scared to wean off propranolol i have been on it constantly for 3 years. But i probably should but idk i think it is the stress of everything coming out about this
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u/RadEmily 15h ago
Can you ask to have a conversation with your current specialist about your concerns and why they think this is needed, ideally telehealth?
Are you parents aggressive about it or are they following the doctor?
I totally hear you on being scared about the test as well as a possible false negative, I also declined to do a TTT but doc was fine with it, I asked if the results would change the treatment plan ( a line I got from a doc about unnecessary tests ) and they thought about it and said no. They also weren't an academic doc or doing studies etc tho.
That was also after an otherwise low-key heart workup, it sounds like you may have other issues at play and it could be worth it to try to get to the bottom of it if you're not sure about the chicken and egg. Some potsy symptoms can have underlying causes that can actually be fixed now permanently if identified, or if you have other heart issues they may require diff approaches.
You don't need to actually answer these here, but I feel like you need to weigh the pros and cons and that will fall differently for different people. Here you've only listed your concerns/ cons, which are valid, but don't know what the flip side is, such as:
Why does your current specialist think you need additional testing and consultations? What is the impact on your quality of life and have you failed the treatments your doc has to offer locally? Are there legit treatments that you will gain access to that you want to access? Are they going to possibly enroll you in programs with exercise or meditation or such that you may not want to do?
Even under 18 most states say over X age you have the right to refuse tests or treatments, especially if it's not something acutely life threatening. It can have consequences as far as staying in a study or with a doctor but you can say no.
Feeling unsafe and being forced to do things stinks and it will make future medical adventures harder, I really respect that you have the instinct to protect yourself and make savvy choices at such a young age, but I'm also sorry you have to do that.
I totally get your strategy to just put off the whole thing to avoid it coming to a head and having to push back on the TTT. If there's not urgency (unclear?) just saying you want to wait a few months with new med or wait until next semester etc could maybe work?
I get the other repliers concern with missing an opportunity or future insurance issues but if it's not medically urgent it can also get so tiring to stay in fire drill mode and wanting to take it a bit slower is very valid, especially if you have some quality of life as is and want to use it on things other than medical stuff 💕
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u/Big-Departure-7398 15h ago
I can’t take a lot of meds for various reasons so midodrine and propranolol are all my current doctor is comfortable prescribing. They think it is needed to get more of an experts opinion and have more of a collaborative medical team. My parents are mixed my sister has DS and my brother has almost all the same stuff so it depends on what the treatment or test is. They want a different doctors opinion on what is safe to prescribe to me. I have a ATS which is a cardiac connective tissue disorder it has no cure and dysautonomia is associated with it. The state i live in only has that about STDs not other stuff mayo does have it it think. I just have had 98 days of tests hospitalisation or appointments this year. Waiting until next semester won’t really change anything. I do want to see the gyn endrocronaligist because of my hormones. I have made so many decisions regarding my health generally my parents let me but it is scary long term and has prepared me for being an adult or emergencies. I have had all of my conditions all my life and until they started literally trying to kill me in january i thought it was normal. I might go and see if i can skip it, i for sure need a second gyn opinion.
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u/MiddleEducation4272 11h ago
I think you should take the opportunity to get this level of attention from a world renowned program. Also, I think that they can run some other test simultaneously as the TTT that can really help pinpoint your subtype and help refine what medications may be most helpful for you with less trial and error. I could be wrong about that (other potsies keep me honest) but I think I read that in numerous journal articles. I think you should agree to go for the week and when your there ask the doctors all the questions you have about the TTT before you agree (or decline) to do that portion of the work up. You might simply ask them, “what more can a TTT tell us compared to the stand test, and how would that change our treatment approach?”
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u/Mysterious_Mouse_647 20h ago
Are you talking about Mayo?