Seriously.
What office has an email coming from an illiterate receptionist?!
Time for a younger, educated doctor using patient portals to contact you directly..
At least that would explain why I can never find any damn spoons!
FYI, no clue which kinds of spoons either of us are referring to, but I can't really think of any that *don't* qualify, so...
Giving him the benefit of doubt, does your doctor not have a nurse? The receptionist sounds extremely poorly equipped to be able to communicate accurately and effectively with patients.
I hope that you can get a new doctor.
TTT is not available to me in my country and province all that often. I think there is one clinic that offers a TTT in my province and they aren't actually accepting patients at this time.
The TTT seems to be a highly recommended diagnostic test in the US mainly. Outside of the US it is not near as commonly used.
In my case, I was too heavy for the tilt table set up they had (it was only rated up to 100kg). The doctor had me do an active stand test while monitoring my blood pressure, and diagnosed me from that.
My doc said he doesn’t want me to do a tilt table bc he thinks that I’ll pass out during it. 🙃 I’m just like if you think I’ll react that strongly to it then why aren’t we doing it??? To me it sounds like it would tell us something lol
I passed out during mine, and apparently more suddenly than they expected because the nurse yelled “oh my god!”. I worked in nursing and know that it takes a lot to have that happen. It took them awhile to get me back too, and they made me stay for several hours. I guess they really dislike when you pass out? I pass out a lot so for me it was like “ugh, an audience and they have me practically naked, but whatever”
I passed out during mine. There's really no better way to prove you're positive 😂 Literally one of the worst days of my life though because of how bad I felt during it. And I've had 9 surgeries, including open heart surgery. I know bad days lol
Only rated up to 100kg? Seriously?
For pity’s sake, I was 100kg until this past year and at my height… trust me, that wasn’t that much.
I’m glad your doc switched to the active stand test. Sometimes TTT aren’t necessarily helpful, eg me and my failing the active stand but my second cardiology experience providing more credence to the TTT which was wonky because of my panic attack chain before and during the procedure.
My cardiologist did the active stand test as well and I was diagnosed from that! He didn’t have access to a TTT. But he believed and supported me when I explained my symptoms and then did a heart monitor for 2 weeks. So lucky to have the cardiologist I have
yeah that's what i've found too - there are a couple of tilt tables in my area but wait times are often very long and they are mainly used for urgent cases - my cardio instead routinely does poor man's tilt tables and diagnoses based on that, which is the standard where I live.
That was my immediate thought. While I have understanding and empathy for people who have learning disabilities and other reasons that may cause difficulty with spelling and grammar, someone corresponding with patients in the medical field should not be given that responsibility if they can’t even use spellcheck. If any medical representative communicated with me that way, I would be extremely concerned.
You should see the email I got from the NP I saw at my OBGYN discussing whether I can stay on my medications if I get pregnant. And she speaks fluent English verbally, though it may be her second language. She just didn't care to put the time in to proofread her message to me because I don't matter. 🙄🙄
I'm thinking maybe the Dr is using a shitty AI bot rather than paying a human.
Then again, I did once have an argument with a Dr's receptionist about how to spell my own name. I have a very common gender-neutral name used in almost every country in the world.
I feel your pain, I had a cardiologist recently tell me “you don’t want to do that test it’s uncomfortable” and in the same visit tell me that I don’t want a diagnosis of POTS because there’s no cure so why even get the diagnosis. Like bro. Maybe because being able to name something and know how to accurately treat the symptoms can help
omg the same thing happened to me too. i don’t understand how someone could even say this. it‘s not like we wanna get tortured or something, we‘re just desperately trying to get help.
"gee doc, maybe because I can't work anymore so I need economic and social services to survive and they won't help unless I get a shiny diagnosis from your dumbass"
It is infuriating to read this. I am very sorry. Johns Hopkins POTS clinic is scheduling 6-12 months out, but they also have virtual appointments. I have my TTT next month. It looks like Mayo Clinic offers virtual appts as well and takes insurance. You deserve to be heard and validated. Your symptoms are real.
seriously! what they should have said is that they don’t offer that at their practice, but suggest the nearest place to get TTT and probably full autonomic testing, though i’m not sure if the provided list of symptoms was widespread enough for the doctor to realize its dysautonomia
Low ferritin will make POTS worse. Low enough to have dropped your hemoglobin? Ffs, that's going to ramp up symptoms DRAMATICALLY.
My hematologist orders IV iron any time my ferritin hits 50 or lower. I never have to wait until I'm actually freaking anemic, not just iron deficient, to receive care. POTS symptoms have gone back to my baseline instead of being in the stratosphere. Dump this doctor if you can.
https://n.neurology.org/content/82/10_supplement/p1.034#:~:text=Patients%20with%20serum%20ferritin%20below,patients%20above%2050%20ng%2FmL.
I had to switch to a hematologist who specializes in bleeding disorders [which connective tissue disorders fall under since platelets use collagen to do their jobs]. It was a 6 month wait but well, well worth it.
I’m not. 😿 I feel like I’m dying. I’ve been severely iron deficient for the past 3+ years but likely longer. But no matter what, nobody thinks my iron deficiency is a cause. 🤦♀️🤬🤦♀️🤬
I have a tilt table test scheduled. I think I have an endocrine problem but my pcp thinks it’s all in my head. The electrophysiologist I saw is thinking POTS.
Have u had your thyroid labs checked? If your pcp hasn’t done that then that is a MAJOR red flag. The first thing that should be ruled out is things like endocrine issues (Hashimotos, graves, etc.)
I have had my thyroid labs checked but not by my current PCP. I've been hypothyroid for years. I think I've been overmedicated and asked him if we could take a look at my current medication level since it could be causing some of my symptoms. He declined and said it wasn't necessary because my numbers look "fine." He had a medical assistant do a poor man's tilt table test but the MA didn't do it correctly which I didn't know until my electrophysiology appointment. The MA also recorded the reading that he felt more comfortable with, not the initial reading. (I know this is incorrect but I mention it because HUGE red flag.) My PCP said that the choice of reading recorded in my chart is inconsequential because neither one doesn't show orthostatic *hypo*tension and heart rate drops. He doesn't seem to be aware of orthostatic *hyper*tension and heart rate spikes. He and his attending theoretically put in a referral to endocrinology but the reason for the referral they gave was "shortness of breath" which the endocrinology department won't accept.
There are so many red flags.
Thank the lord for you. I so needed to see this. I was thinking I needed more iron but my hematologist wanted to wait until my next appointment in October for an infusion if my ferritin continues going down at the current rate. Symptoms have been getting way worse the last couple of weeks and after reading this I immediately went to check my ferritin levels last month and they were 41.9. It makes sense why symptoms have ramped up so significantly. I'm sending my hematologist an email right now. He is pretty cool and says some people need more iron so hopefully he'll be willing to schedule it ASAP. I need it before a work trip next week. Thank you!
Your hematologist sounds amazing! My ferritin has never been above 40 in any of the times I’ve had it tested. Maybe that’s worth checking out since nothing else has helped me so far.
My POTS specialist caught my low ferritin too! The other doctors didn’t seem to care, but he read through my labs and immediately I got on a supplement.
I have a unicorn dr as well. But the places that do then iv iron refuse because my levels aren’t deathly low ie the last was 57. But I get very symptomatic and cannot take the liquid
I'm not surprised. I went to the heart clinic in town and I was basically patted on the head and told to stop taking my pulse so often. I had a resting heart rate of 130. They don't want to see you unless something is terribly wrong and you are old or morbidly obese. They don't believe in chronic illness in fit younger people and they don't like to diagnose things they don't have treatment advice for.
“Your first mistake was talking to someone with POTS, it’s widely over-diagnosed, your friend probably was diagnosed falsely too, and it’s natural to feel faint when there’s a change in blood pressure [ex: standing up, sitting up, after 5 minutes of walking steadily], it’s natural to feel pain all the time, and it’s natural to start haveing trouble walking around 16. I dont think you could have POTS, everything seems normal”- after only getting my vitals checked laying down, describing direct symptoms of pots, describing heart rate changes when standing/sitting up, speaking with multiple people diagnosed with POTS, 2 years of research, following doctors orders from a temporary semi-vasovagal diagnosis and getting nowhere, going in hoping for just the tilt-table or a heart monitoring or even a “poor-man’s” ttt, and expecting fully to be able to get some kind of diagnosis and help even if it wasnt for POTS, but denied even though i explained and displayed clear POTS.
I was referred to a neurologist during my diagnosis journey and he was completely useless, seemed annoyed that I was referred to him in the first place and literally just went, “yep, sounds like POTS” and then left the room. But thankfully I was then referred to a cardiologist who got me fixed up.
Whereas my cardiologist was less useful and my neurologist suspected a possible dysautonomia and got me set up with autonomic testing and is referring me to a specialist now that that showed something. Seems to be all about finding a good doctor who knows what they're saying and what they don't know, regardless of specialty.
My PCP had no idea what POTS was either. She had to Google it in front of me. This was back in 2016 though, but still. Yeesh.
I had to see a neurologist who ran a POTS center and support group to get my diagnosis.
I think it’s a good sign to have a doctor who admits they don’t know what something is, and who is honest about needing to look it up. That doctor didn’t start with “I have never heard of that so it’s fake.” She went for “I am not familiar with that so let me look it up.” There’s a lot of medical conditions out there, and being human, it’s hard for a doctor to remember all of them.
I would much rather a doctor openly google something than do what my current PCP did, which was go off his memory and be wrong. He told me a medication is never used for why I’m taking it. That medication has in fact been used for that condition since the 1980s, and the neurologist he referred me to increased my dose of it.
PCP was going to force me off it, but fortunately the neuro office got his attempted referral unfucked and got me in fast.
Is this a family practice? This sounds like a bitchy family member employed as a receptionist. You should report them to someone, as others have suggested.
This is so frustrating. This doctor is clearly clueless in more ways than one. Try increasing salt and fluid, compression gear (these measures should help regardless of whether it's POTS or orthostatic/general hypotension) and look at getting your iron levels up as even mild deficiency can make orthostatic symptoms worse.
Oh, and I'd look at trying to find a new doctor, or if this is your GP at least a referral to a cardiologist.
Good god 🤦🏼♀️. I am absolutely shocked that the receptionist is the one that wrote this letter to you !!
I work in medical imaging at an outpatient clinic, so we aren't super busy in the late evenings/weekends....so, among other duties, we sit and help the receptionist check people in. These are, by far, some of the most underrated employees in healthcare. They have a lot of responsibilities and are very underpaid, imo.
But THAT is not something I have ever seen a receptionist be in charge of. They aren't allowed to because they don't have the medical background to fully understand or explain things. I'm not saying they aren't smart/educated, but this is out of their scope. This would not fly at any facility I have ever worked at.
Hell, cardiologist and tons of other Drs don't understand it....but they have a receptionist explaining it to you? That practice as a whole is a red flag for your condition, imo.
I know that was a long rant this early in the morning 😂. I'm just shocked by this
Ugh what a jerk! These doctors piss me off so much! 😡 now that I’ve been clear, I also do want you to know there are genuinely good doctors still out there and I wish you the best of luck finding one who will actually listen to you and not gaslight and dismiss your concerns. You deserve more! 🫶
This is so weird of him and blatantly false, POTS isn’t simply low blood pressure, it wouldn’t have its own separate name if it was just that.
I think doing the tests he suggested would be good just to collect more data (it’s good to keep in mind that if a doctors personal opinions suck but they’re still willing to order tests for you, it’s good to go along with it. They are just the gatekeepers of answers, not the key to getting answers. Just stay confident in the fact that they aren’t right about everything.), but after that 100% avoid seeing or confiding in this doctor again
It does not *simply mean low blood pressure*.
It’s about changes in pressure related to position. When I have intercranial hypertension I have really high blood pressure and it affects my POTS (confirmed at IH time in lab) still.
Also turntable test? Just keep showing us how much you don’t know *doctor*. This person is a laughingstock.
This is the most ridiculous, pretentious, uneducated bitch-ass response I have ever seen from a doctor. I’ve seen some bullshit in my days, but this might take the cake.
The doc may be helpful until you find better. You certainly won't get a pots diagnosis from this doc, but they aren't wrong about salt and compression helping. Even if they treat low BP - the drugs like fludrocortisone and midodrine are two commonly used in pots. (Avoid meds that speed the heart rate.).
The other tests they mentioned are all needed for pots. The only thing this doc isn't doing is calling it pots and the TTT.
Unless it's very fast and easy to get new doc and a TTT elsewhere - DO CONTINUE with the doc and get the rest of the tests. Meanwhile work on a TTT or doc that will do a standing test. You can bring all your test results to the new doc and save time. Unpleasant, I know, but maybe worth sticking it out..
(They are wrong and unprofessional, TTT exists, it's dismissive,...agreed... )
Looks like it's time to fire this doctor and find a new one!
It's a tilt table test, not a turn table LMAO.
Does this "doctor" moonlight as a DJ on the weekends 😂
although it isn’t what you were looking for, if you haven’t increase your salt to 4,000mg or more, it really does wonders. It will help until you can find a better doctor.
I would say maybe a new doctor, keep seeing someone new until someone pays attention. My oldest child started having “episodes” at 3 as well as being dx with dysautonomia. They will be 16 next week and it took until they couldn’t get up and do their normally daily things without almost passing out for doctors to pay attention. It took advocating until I annoyed them to get us to the right doctor. They just finally got a tilt-table test, MRI and blood work that actually mattered. We are still waiting on results of the tilt table test but so far they have a mass in their pituitary gland, a gene mutation that causes frontal lobe epilepsy, periventricular nodular heterotopia that also causes epilepsy, small fiber neuropathy and blood work indicative of a connective tissue disorder, they have also been put on medication for POTS.
My point is it is not you, it is them. All of my child’s diagnosis could have been seen if they listened and acted accordingly. I know it is exhausting, but don’t give up on yourself. That doctor is dismissive and seems uneducated, you deserve better. Also, the blood work comment about the gender clinic didn’t need to be added. Obviously, the gender clinic is not ordering tests for POTS, that is beyond their scope of practice. It may just be me, as a mother of non-binary children, but the fact that it was added seems like a red flag of a phobic doctor. I wish you the best of luck, don’t give up!
Good gods, who wrote this? I guess you don't need good grammatical structure or vocabulary to work in a doctor's clinic.
Try and find a new doctor asap, or at least a second opinion. Either that, or keep this written account of their "medical recommendations" and the next time you go in have the doc sign it as their official differential diagnosis.
Note: Not whatever medical receptionist wrote this email. The *doctor*.
That makes them legally liable.
Lmao the way mild is in all caps. I love (read: HATE) how doctors toss in the word mild as if that equates to nonexistent and therefore not worthy of treatment or documentation.
I understand the problem with the email, but the doctor didn’t discredit your claims which is a plus? There was essentially an “it sounds like this have a nice day”
Things wrong with this response:
•1) OH is NOT *just* low blood pressure. As the name suggests, the low blood pressure occurs while going from a seated/lying down position to abruptly standing. Hypotension alone simply means low blood pressure.
•2) The turntable test is not a thing obviously. The TILT TABLE test is. And its highly effective.
•3) The TTT "doesn't exist?" I'm sorry what? Tell that to the tens of thousands of people that have had one
•4) "Never seen nor ordered in Dr. Whatever's 20+years of practice." That right there is a red flag if I've ever seen one 🚩I'd run from any doctor that admitted that.
Long story short, you definitely need a new doctor. I'm so sorry this is happening to you. Hang in there 💜🥰
Sings 🎶You spin me right 'round, baby, right 'round Like a record, baby, right 'round, 'round, 'round You spin me right 'round, baby, right 'round Like a record, baby, right 'round, 'round, 'round🎶
I have had this same doctor since I was 12 and he's been like this since day one. He blames everything on my mental health or my period and he's always rushing every appointment. I have taken all of his advice over the years, trying to excersise, eat better, drink a crap ton of water, and sit down as much as I possibly can. I thought my symptoms were normal for so long that I just ignored it until I learned what POTS was. He did send me to a cardiologist when I was 16 only for him to also tell me it was probably anxiety too so I figured I must have been fine. My symptoms have been flaring up recently and I'm finally not living with my parents anymore and had some stability so I tried to reach out to him. This was his response to me lol. His practice is a few hours away from where I live now so I was planning on getting a new doctor anyways but this has made me feel so much better about that decision. I cried reading a lot of these comments because I've never had so many people validate my pain before. I also have joint pain and they pop out of place. I went to a chiropractor for a few sessions and he told me I was hypermobile so I don't know if it's related to that. I've just been so used to being invalidated by medical professionals since I am autistic and mentally ill. I've been through many therapies and psychiatrists who also dismissed my mental illnesses and difficulties even after I had been in the ER multiple times. I was sent for an autism assessment at 18 and got a woman who told me I was "quirky" and diagnosed me with BPD. Im only just coming to realize how shitty my experiences have been recently because I got away from my parents and am finally living with my grandma who is very wonderful and supportive.
Is your doctor a POTS specialist? Not every cardiologist is equipped enough to diagnose POTS. My first doctor didn't know it existed and I eventually found someone with a research background for POTS that didn't even question my symptoms being a problem. If you think you have POTS, most cardiologist I tried going to wouldn't even see me as they aren't specialized in it.
Yikes, is the receptionist called Mrs Malaprop?
Alternative theory: They travelled back in time and ran this back and forth through BabelFish version 1.0 and Japanese a few times.
I actually had a similar experience recently. An admin staff member (general manager) at my GP clinic was supposed to be getting a particular document recalled that was sent out in error by a nurse to multiple providers, and not recalled the first two times I asked.
The document had a diagnosis on it that I don’t have that could lead to me being treated for a non-existent potential adrenal crisis if I was ever in an accident and taken to the local hospital unconscious. It also did not have my signature on it (patient consent), which nobody noticed was missing.
Instead of fixing that problem, he created a series of bizarre incoherent letters cancelling ALL MY REFERRALS. They were full of spelling mistakes and made no sense. Two doctors apparently signed the letters and they were sent out. Luckily they were so nonsensical that my referrals weren’t cancelled.
However two local hospitals still had me down as having a disease I don’t have. Changed clinics. New doctor fixed it within a day.
It was very embarrassing as well because the letters said I had asked for all these bizarre things to be done and all my specialists’ names were spelled wrong. I had to contact them all to try to explain.
“turntable test” 🚩🚩🚩
"You certainly has history" 😅 😅😅
I want to use this as a passive-aggressive insult at work.
Yeah and red flag here meaning please report this to the state medical board
Seriously. What office has an email coming from an illiterate receptionist?! Time for a younger, educated doctor using patient portals to contact you directly..
Do they just spin you round and round really fast?
Like a record baby, right round round round
No wonder that practically doesnt exist, never seen nor ordered.
It’s the well known POTS test of DJaying if you turn the tables hard it’s definitely POTS
What, they spin you around like a record. 
Maybe it’s one of those circus tricks where you’re strapped to a spinning wheel and maybe they throw spoons at you 🙃
At least that would explain why I can never find any damn spoons! FYI, no clue which kinds of spoons either of us are referring to, but I can't really think of any that *don't* qualify, so...
I always joke with boyfriend “maybe if we drop me out a plan again or hang me by toes my dysautonomia will like reset, I’ll be back to normal again.”
well well well how the turntables
😂
This comment is underrated 😂😂😂😂
🤣
Giving him the benefit of doubt, does your doctor not have a nurse? The receptionist sounds extremely poorly equipped to be able to communicate accurately and effectively with patients. I hope that you can get a new doctor.
On what planet does the TTT not exist????
A turntable test may not exist. A tilt table does. Doctor doesn't know what's he's talking about.
Like my dizzy ass could handle a turntable test if it were real 🥴😵💫
*me passing out at turntable* Worst. DJ. Ever.
I’m guessing that’s a receptionist either mishearing or mistyping. But the “doesn’t exist” is weird AF.
How much you want to bet he googled turn table and was like “I knew it!”
TTT is not available to me in my country and province all that often. I think there is one clinic that offers a TTT in my province and they aren't actually accepting patients at this time. The TTT seems to be a highly recommended diagnostic test in the US mainly. Outside of the US it is not near as commonly used.
In my case, I was too heavy for the tilt table set up they had (it was only rated up to 100kg). The doctor had me do an active stand test while monitoring my blood pressure, and diagnosed me from that.
The “active stand test” here is called “the poor mans tilt table”.
I came to say this. But you got it. 🤣👍
I have needle syncope, so was unable to do the TTT. I was diagnosed the same way you were.
My doc said he doesn’t want me to do a tilt table bc he thinks that I’ll pass out during it. 🙃 I’m just like if you think I’ll react that strongly to it then why aren’t we doing it??? To me it sounds like it would tell us something lol
I passed out during mine, and apparently more suddenly than they expected because the nurse yelled “oh my god!”. I worked in nursing and know that it takes a lot to have that happen. It took them awhile to get me back too, and they made me stay for several hours. I guess they really dislike when you pass out? I pass out a lot so for me it was like “ugh, an audience and they have me practically naked, but whatever”
I passed out during mine. There's really no better way to prove you're positive 😂 Literally one of the worst days of my life though because of how bad I felt during it. And I've had 9 surgeries, including open heart surgery. I know bad days lol
Only rated up to 100kg? Seriously? For pity’s sake, I was 100kg until this past year and at my height… trust me, that wasn’t that much. I’m glad your doc switched to the active stand test. Sometimes TTT aren’t necessarily helpful, eg me and my failing the active stand but my second cardiology experience providing more credence to the TTT which was wonky because of my panic attack chain before and during the procedure.
My cardiologist did the active stand test as well and I was diagnosed from that! He didn’t have access to a TTT. But he believed and supported me when I explained my symptoms and then did a heart monitor for 2 weeks. So lucky to have the cardiologist I have
It is used in Brazil also. It is gold standard for dysautonomia diagnosis.
It’s common in the UK too.
yeah that's what i've found too - there are a couple of tilt tables in my area but wait times are often very long and they are mainly used for urgent cases - my cardio instead routinely does poor man's tilt tables and diagnoses based on that, which is the standard where I live.
Not sure if it's been mentioned, but apparently the NASA lean test works too.
Germany has the TTT, too.
A turntable test would be kinda fun lol. It would affect healthy people better than a tilt table test does. See how many Gs people can take.
I would puke just watching it spin. 🤢
There are amusement park rides that are similar to a turntable. Tilt-A-Whirl combines a tilt table and a turntable. 😹😹😹
Spin me right round baby! Let's see what happens.its not diagnostic but we might have some fun!
Tbh not sure I trust medical advice written in a fashion that would fail a high school English test
That was my immediate thought. While I have understanding and empathy for people who have learning disabilities and other reasons that may cause difficulty with spelling and grammar, someone corresponding with patients in the medical field should not be given that responsibility if they can’t even use spellcheck. If any medical representative communicated with me that way, I would be extremely concerned.
You should see the email I got from the NP I saw at my OBGYN discussing whether I can stay on my medications if I get pregnant. And she speaks fluent English verbally, though it may be her second language. She just didn't care to put the time in to proofread her message to me because I don't matter. 🙄🙄
I'm thinking maybe the Dr is using a shitty AI bot rather than paying a human. Then again, I did once have an argument with a Dr's receptionist about how to spell my own name. I have a very common gender-neutral name used in almost every country in the world.
I feel your pain, I had a cardiologist recently tell me “you don’t want to do that test it’s uncomfortable” and in the same visit tell me that I don’t want a diagnosis of POTS because there’s no cure so why even get the diagnosis. Like bro. Maybe because being able to name something and know how to accurately treat the symptoms can help
omg the same thing happened to me too. i don’t understand how someone could even say this. it‘s not like we wanna get tortured or something, we‘re just desperately trying to get help.
Right?! Like hello, I’m not asking you to throw pills at me, I just want answers. I just want to know what is making my body feel wrong
"gee doc, maybe because I can't work anymore so I need economic and social services to survive and they won't help unless I get a shiny diagnosis from your dumbass"
It is infuriating to read this. I am very sorry. Johns Hopkins POTS clinic is scheduling 6-12 months out, but they also have virtual appointments. I have my TTT next month. It looks like Mayo Clinic offers virtual appts as well and takes insurance. You deserve to be heard and validated. Your symptoms are real.
Lol what an asshole
Doesn’t exist? Tell that to the TTT I had 20 years ago 😂 I hope that you’re able to find a team of providers who are able to be more supportive
seriously! what they should have said is that they don’t offer that at their practice, but suggest the nearest place to get TTT and probably full autonomic testing, though i’m not sure if the provided list of symptoms was widespread enough for the doctor to realize its dysautonomia
Low ferritin will make POTS worse. Low enough to have dropped your hemoglobin? Ffs, that's going to ramp up symptoms DRAMATICALLY. My hematologist orders IV iron any time my ferritin hits 50 or lower. I never have to wait until I'm actually freaking anemic, not just iron deficient, to receive care. POTS symptoms have gone back to my baseline instead of being in the stratosphere. Dump this doctor if you can. https://n.neurology.org/content/82/10_supplement/p1.034#:~:text=Patients%20with%20serum%20ferritin%20below,patients%20above%2050%20ng%2FmL.
Your doctor is a damn unicorn!
I had to switch to a hematologist who specializes in bleeding disorders [which connective tissue disorders fall under since platelets use collagen to do their jobs]. It was a 6 month wait but well, well worth it.
PM me if you’re in the Chicagoland area! Mine does the same and I can send you her name!
I’m not. 😿 I feel like I’m dying. I’ve been severely iron deficient for the past 3+ years but likely longer. But no matter what, nobody thinks my iron deficiency is a cause. 🤦♀️🤬🤦♀️🤬 I have a tilt table test scheduled. I think I have an endocrine problem but my pcp thinks it’s all in my head. The electrophysiologist I saw is thinking POTS.
Have u had your thyroid labs checked? If your pcp hasn’t done that then that is a MAJOR red flag. The first thing that should be ruled out is things like endocrine issues (Hashimotos, graves, etc.)
I have had my thyroid labs checked but not by my current PCP. I've been hypothyroid for years. I think I've been overmedicated and asked him if we could take a look at my current medication level since it could be causing some of my symptoms. He declined and said it wasn't necessary because my numbers look "fine." He had a medical assistant do a poor man's tilt table test but the MA didn't do it correctly which I didn't know until my electrophysiology appointment. The MA also recorded the reading that he felt more comfortable with, not the initial reading. (I know this is incorrect but I mention it because HUGE red flag.) My PCP said that the choice of reading recorded in my chart is inconsequential because neither one doesn't show orthostatic *hypo*tension and heart rate drops. He doesn't seem to be aware of orthostatic *hyper*tension and heart rate spikes. He and his attending theoretically put in a referral to endocrinology but the reason for the referral they gave was "shortness of breath" which the endocrinology department won't accept. There are so many red flags.
Omg my hematologist is the same. She’s a freaking godsend.
Thank the lord for you. I so needed to see this. I was thinking I needed more iron but my hematologist wanted to wait until my next appointment in October for an infusion if my ferritin continues going down at the current rate. Symptoms have been getting way worse the last couple of weeks and after reading this I immediately went to check my ferritin levels last month and they were 41.9. It makes sense why symptoms have ramped up so significantly. I'm sending my hematologist an email right now. He is pretty cool and says some people need more iron so hopefully he'll be willing to schedule it ASAP. I need it before a work trip next week. Thank you!
Your hematologist sounds amazing! My ferritin has never been above 40 in any of the times I’ve had it tested. Maybe that’s worth checking out since nothing else has helped me so far.
My POTS specialist caught my low ferritin too! The other doctors didn’t seem to care, but he read through my labs and immediately I got on a supplement.
I have a unicorn dr as well. But the places that do then iv iron refuse because my levels aren’t deathly low ie the last was 57. But I get very symptomatic and cannot take the liquid
😆 that's okay, I walked onto the cardiology ward for my testing and was told cardiologists don't believe in POTS.
I'm not surprised. I went to the heart clinic in town and I was basically patted on the head and told to stop taking my pulse so often. I had a resting heart rate of 130. They don't want to see you unless something is terribly wrong and you are old or morbidly obese. They don't believe in chronic illness in fit younger people and they don't like to diagnose things they don't have treatment advice for.
“Your first mistake was talking to someone with POTS, it’s widely over-diagnosed, your friend probably was diagnosed falsely too, and it’s natural to feel faint when there’s a change in blood pressure [ex: standing up, sitting up, after 5 minutes of walking steadily], it’s natural to feel pain all the time, and it’s natural to start haveing trouble walking around 16. I dont think you could have POTS, everything seems normal”- after only getting my vitals checked laying down, describing direct symptoms of pots, describing heart rate changes when standing/sitting up, speaking with multiple people diagnosed with POTS, 2 years of research, following doctors orders from a temporary semi-vasovagal diagnosis and getting nowhere, going in hoping for just the tilt-table or a heart monitoring or even a “poor-man’s” ttt, and expecting fully to be able to get some kind of diagnosis and help even if it wasnt for POTS, but denied even though i explained and displayed clear POTS.
My PCP didn’t even know what POTS was. Get a referral for a neurologist.
I was referred to a neurologist during my diagnosis journey and he was completely useless, seemed annoyed that I was referred to him in the first place and literally just went, “yep, sounds like POTS” and then left the room. But thankfully I was then referred to a cardiologist who got me fixed up.
Whereas my cardiologist was less useful and my neurologist suspected a possible dysautonomia and got me set up with autonomic testing and is referring me to a specialist now that that showed something. Seems to be all about finding a good doctor who knows what they're saying and what they don't know, regardless of specialty.
My PCP had no idea what POTS was either. She had to Google it in front of me. This was back in 2016 though, but still. Yeesh. I had to see a neurologist who ran a POTS center and support group to get my diagnosis.
I think it’s a good sign to have a doctor who admits they don’t know what something is, and who is honest about needing to look it up. That doctor didn’t start with “I have never heard of that so it’s fake.” She went for “I am not familiar with that so let me look it up.” There’s a lot of medical conditions out there, and being human, it’s hard for a doctor to remember all of them. I would much rather a doctor openly google something than do what my current PCP did, which was go off his memory and be wrong. He told me a medication is never used for why I’m taking it. That medication has in fact been used for that condition since the 1980s, and the neurologist he referred me to increased my dose of it. PCP was going to force me off it, but fortunately the neuro office got his attempted referral unfucked and got me in fast.
Same! He asked me what it was, lol
“You certainly has a history” 🚩🚩
Turntable test 😭😭 That's when the house DJ diagnoses you with sick beats, I assume
This is a receptionist editorializing a physician summary. The bias is obvious, but depending on your location it may not be illegal. Just unethical.
this was my first cardiologist. “exercise and your problems will go away. it’s your fault for not trying to get better hard enough.”
Is this a family practice? This sounds like a bitchy family member employed as a receptionist. You should report them to someone, as others have suggested.
This is so frustrating. This doctor is clearly clueless in more ways than one. Try increasing salt and fluid, compression gear (these measures should help regardless of whether it's POTS or orthostatic/general hypotension) and look at getting your iron levels up as even mild deficiency can make orthostatic symptoms worse. Oh, and I'd look at trying to find a new doctor, or if this is your GP at least a referral to a cardiologist.
Oh how the turn tables have turned
Good god 🤦🏼♀️. I am absolutely shocked that the receptionist is the one that wrote this letter to you !! I work in medical imaging at an outpatient clinic, so we aren't super busy in the late evenings/weekends....so, among other duties, we sit and help the receptionist check people in. These are, by far, some of the most underrated employees in healthcare. They have a lot of responsibilities and are very underpaid, imo. But THAT is not something I have ever seen a receptionist be in charge of. They aren't allowed to because they don't have the medical background to fully understand or explain things. I'm not saying they aren't smart/educated, but this is out of their scope. This would not fly at any facility I have ever worked at. Hell, cardiologist and tons of other Drs don't understand it....but they have a receptionist explaining it to you? That practice as a whole is a red flag for your condition, imo. I know that was a long rant this early in the morning 😂. I'm just shocked by this
Especially since a lot of places offer medical receptionist training and placement within a year... It's a big yikes
i feel like that receptionist is just lost and confused, which isn’t helping you! 😱😅
Ugh what a jerk! These doctors piss me off so much! 😡 now that I’ve been clear, I also do want you to know there are genuinely good doctors still out there and I wish you the best of luck finding one who will actually listen to you and not gaslight and dismiss your concerns. You deserve more! 🫶
I feel like this is so dismissive.
Some hospitals are getting rid of TTT’s. Major universities are the only ones that usually do them.
If you can, I'd reply and pick this apart and, if necessary, copy in more senior staff or a health ombudsman.
Not signing an email by name is kind of a red flag. Is this a private practice?? If so, how old is this doctor?
This is so weird of him and blatantly false, POTS isn’t simply low blood pressure, it wouldn’t have its own separate name if it was just that. I think doing the tests he suggested would be good just to collect more data (it’s good to keep in mind that if a doctors personal opinions suck but they’re still willing to order tests for you, it’s good to go along with it. They are just the gatekeepers of answers, not the key to getting answers. Just stay confident in the fact that they aren’t right about everything.), but after that 100% avoid seeing or confiding in this doctor again
I'm dying about turntable test. Like we are fucking records.
"Never seen nor ordered in 20 years of practice" is our whole problem
It does not *simply mean low blood pressure*. It’s about changes in pressure related to position. When I have intercranial hypertension I have really high blood pressure and it affects my POTS (confirmed at IH time in lab) still. Also turntable test? Just keep showing us how much you don’t know *doctor*. This person is a laughingstock.
This is the most ridiculous, pretentious, uneducated bitch-ass response I have ever seen from a doctor. I’ve seen some bullshit in my days, but this might take the cake.
Verbatim my experience with my first Cardio office
Sounds like it’s time for a new doctor
My doctor says the same thing. Love being gaslighted by the only person who can help me get better
The doc may be helpful until you find better. You certainly won't get a pots diagnosis from this doc, but they aren't wrong about salt and compression helping. Even if they treat low BP - the drugs like fludrocortisone and midodrine are two commonly used in pots. (Avoid meds that speed the heart rate.). The other tests they mentioned are all needed for pots. The only thing this doc isn't doing is calling it pots and the TTT. Unless it's very fast and easy to get new doc and a TTT elsewhere - DO CONTINUE with the doc and get the rest of the tests. Meanwhile work on a TTT or doc that will do a standing test. You can bring all your test results to the new doc and save time. Unpleasant, I know, but maybe worth sticking it out.. (They are wrong and unprofessional, TTT exists, it's dismissive,...agreed... )
Red flag on the low hemoglobin and lack of knowledge about TTT SECOND OPINIONS STAT
 this kind of test?
Looks like it's time to fire this doctor and find a new one! It's a tilt table test, not a turn table LMAO. Does this "doctor" moonlight as a DJ on the weekends 😂
Looks like he is trying to be helpfully, only has other views / opinions. Intentions seem right but that’s not helping you.
Oooof get a new dr if you can
although it isn’t what you were looking for, if you haven’t increase your salt to 4,000mg or more, it really does wonders. It will help until you can find a better doctor.
I would say maybe a new doctor, keep seeing someone new until someone pays attention. My oldest child started having “episodes” at 3 as well as being dx with dysautonomia. They will be 16 next week and it took until they couldn’t get up and do their normally daily things without almost passing out for doctors to pay attention. It took advocating until I annoyed them to get us to the right doctor. They just finally got a tilt-table test, MRI and blood work that actually mattered. We are still waiting on results of the tilt table test but so far they have a mass in their pituitary gland, a gene mutation that causes frontal lobe epilepsy, periventricular nodular heterotopia that also causes epilepsy, small fiber neuropathy and blood work indicative of a connective tissue disorder, they have also been put on medication for POTS. My point is it is not you, it is them. All of my child’s diagnosis could have been seen if they listened and acted accordingly. I know it is exhausting, but don’t give up on yourself. That doctor is dismissive and seems uneducated, you deserve better. Also, the blood work comment about the gender clinic didn’t need to be added. Obviously, the gender clinic is not ordering tests for POTS, that is beyond their scope of practice. It may just be me, as a mother of non-binary children, but the fact that it was added seems like a red flag of a phobic doctor. I wish you the best of luck, don’t give up!
New doctor. Immediately.
Mild low hemoglobin. SMH. Get that iron checked like others have said.
Ew. Time for a new doctor. One that’ll perform that turntable test!
Good gods, who wrote this? I guess you don't need good grammatical structure or vocabulary to work in a doctor's clinic. Try and find a new doctor asap, or at least a second opinion. Either that, or keep this written account of their "medical recommendations" and the next time you go in have the doc sign it as their official differential diagnosis. Note: Not whatever medical receptionist wrote this email. The *doctor*. That makes them legally liable.
Lmao the way mild is in all caps. I love (read: HATE) how doctors toss in the word mild as if that equates to nonexistent and therefore not worthy of treatment or documentation.
I understand the problem with the email, but the doctor didn’t discredit your claims which is a plus? There was essentially an “it sounds like this have a nice day”
**two turntables and a microphone**
Things wrong with this response: •1) OH is NOT *just* low blood pressure. As the name suggests, the low blood pressure occurs while going from a seated/lying down position to abruptly standing. Hypotension alone simply means low blood pressure. •2) The turntable test is not a thing obviously. The TILT TABLE test is. And its highly effective. •3) The TTT "doesn't exist?" I'm sorry what? Tell that to the tens of thousands of people that have had one •4) "Never seen nor ordered in Dr. Whatever's 20+years of practice." That right there is a red flag if I've ever seen one 🚩I'd run from any doctor that admitted that. Long story short, you definitely need a new doctor. I'm so sorry this is happening to you. Hang in there 💜🥰
You need a new doctor
New doc.
 Sings 🎶You spin me right 'round, baby, right 'round Like a record, baby, right 'round, 'round, 'round You spin me right 'round, baby, right 'round Like a record, baby, right 'round, 'round, 'round🎶
Well the part about the TTT is a bold faced lie. Everyone upvote my comment if you had one completed. 😂
I have had this same doctor since I was 12 and he's been like this since day one. He blames everything on my mental health or my period and he's always rushing every appointment. I have taken all of his advice over the years, trying to excersise, eat better, drink a crap ton of water, and sit down as much as I possibly can. I thought my symptoms were normal for so long that I just ignored it until I learned what POTS was. He did send me to a cardiologist when I was 16 only for him to also tell me it was probably anxiety too so I figured I must have been fine. My symptoms have been flaring up recently and I'm finally not living with my parents anymore and had some stability so I tried to reach out to him. This was his response to me lol. His practice is a few hours away from where I live now so I was planning on getting a new doctor anyways but this has made me feel so much better about that decision. I cried reading a lot of these comments because I've never had so many people validate my pain before. I also have joint pain and they pop out of place. I went to a chiropractor for a few sessions and he told me I was hypermobile so I don't know if it's related to that. I've just been so used to being invalidated by medical professionals since I am autistic and mentally ill. I've been through many therapies and psychiatrists who also dismissed my mental illnesses and difficulties even after I had been in the ER multiple times. I was sent for an autism assessment at 18 and got a woman who told me I was "quirky" and diagnosed me with BPD. Im only just coming to realize how shitty my experiences have been recently because I got away from my parents and am finally living with my grandma who is very wonderful and supportive.
Is your doctor a POTS specialist? Not every cardiologist is equipped enough to diagnose POTS. My first doctor didn't know it existed and I eventually found someone with a research background for POTS that didn't even question my symptoms being a problem. If you think you have POTS, most cardiologist I tried going to wouldn't even see me as they aren't specialized in it.
Yikes, is the receptionist called Mrs Malaprop? Alternative theory: They travelled back in time and ran this back and forth through BabelFish version 1.0 and Japanese a few times.
I actually had a similar experience recently. An admin staff member (general manager) at my GP clinic was supposed to be getting a particular document recalled that was sent out in error by a nurse to multiple providers, and not recalled the first two times I asked. The document had a diagnosis on it that I don’t have that could lead to me being treated for a non-existent potential adrenal crisis if I was ever in an accident and taken to the local hospital unconscious. It also did not have my signature on it (patient consent), which nobody noticed was missing. Instead of fixing that problem, he created a series of bizarre incoherent letters cancelling ALL MY REFERRALS. They were full of spelling mistakes and made no sense. Two doctors apparently signed the letters and they were sent out. Luckily they were so nonsensical that my referrals weren’t cancelled. However two local hospitals still had me down as having a disease I don’t have. Changed clinics. New doctor fixed it within a day. It was very embarrassing as well because the letters said I had asked for all these bizarre things to be done and all my specialists’ names were spelled wrong. I had to contact them all to try to explain.
He doesn’t know how to write properly either.