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GPs not understanding what POTS is

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Has anyone else had this issue where when asking for a referral for POTS diagnostic testing the GP tests your blood pressure?? The two times I've asked for a referral to get tested for POTS they've taken my blood pressure and then say I can't have POTS. It's like they don't know what the T in POTS stands for and then when I try to explain they make me feel like an idiot. They then use my MH issues as a scapegoat. It's getting really annoying. But, hey, at least I have a cardiology referral I guess. Hopefully the cardiologist knows what POTS is.

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Sorry to hear about your experience with your GP. I have not had the same experience, but it's good you got a referral to a cardiologist. I have had 2 cardiologists and both knew POTS. The first never mentioned it, but ordered a tilt table test. I figured it out after that and asked him about it. So don't be afraid to speak up and ask for the tilt table test. A cardiologist should be a good place to start, and will rule out any other heart issues that could be going on. Best of luck!

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 The average doctor is used to treating common things like bronchitis, but many of them can't deal with stuff outside the box.  They also have egos and sometimes get intimidated when you bring up conditions and tests that they don't know about -- and most would not know about POTS.  A cardiologist might know more about how to treat the symptoms you are having, but even then not be familiar with dysautonomia.  Good luck with the cardiologist - if that doesn't work try a doctor on the DINET list.  It sometimes takes a while to find the right doctor.  And many of us wind up educating our doctors, but you can only do that with someone that's interested in learning and willing to work with you.

 

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My GP was and is equally unhelpful. Are you in the UK? I am actually a GP myself and only found out POTS existed the hard way when I developed it 3 and a half years ago. I don't think many GPs would know what it is, but there is no excuse for being unwilling to learn about it. If I had a patient with a disorder that I had not heard of, I would take the trouble to read up on it.  

I found NHS cardiologists in my area equally ignorant and arrogant. Initially my referral for a tilt test was denied - which I only found out about when I phoned after waiting months - because the cardiologist didn't think it was indicated. A previously healthy 34 year old woman who suddenly can't stand up and was passing out, wasn't considered worth investigating. Finally I got a tilt test after explaining to the technician on the phone that all I wanted was to have the chance to walk down the isle and get married standing up!

The cardiologists then still refused to see me as the tilt showed sinus rhythm and no postural drop. They clearly knew nothing about the diagnostic criteria of POTS. 

I have now found a private cardiologist to take on my care but it shouldn't be this way. 

I hope you get an interested and compassionate cardiologist, that is worth more than any amount of knowledge if they are willing to learn and work with you. If you are anywhere in England there is also an NHS autonomic specialist centre in London that your GP can refer you to. I am currently trying to get referred there but as I'm in Scotland the process is a lot harder due to funding. 

 

 

 

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Thanks guys. I guess I just get frustrated because my life is on hold and whilst I do have MH problems I hate that everything relating to heart stuff is blamed on that. 

47 minutes ago, bombsh3ll said:

My GP was and is equally unhelpful. Are you in the UK? I am actually a GP myself and only found out POTS existed the hard way when I developed it 3 and a half years ago. I don't think many GPs would know what it is, but there is no excuse for being unwilling to learn about it. If I had a patient with a disorder that I had not heard of, I would take the trouble to read up on it.  

I found NHS cardiologists in my area equally ignorant and arrogant. Initially my referral for a tilt test was denied - which I only found out about when I phoned after waiting months - because the cardiologist didn't think it was indicated. A previously healthy 34 year old woman who suddenly can't stand up and was passing out, wasn't considered worth investigating. Finally I got a tilt test after explaining to the technician on the phone that all I wanted was to have the chance to walk down the isle and get married standing up!

The cardiologists then still refused to see me as the tilt showed sinus rhythm and no postural drop. They clearly knew nothing about the diagnostic criteria of POTS. 

I have now found a private cardiologist to take on my care but it shouldn't be this way. 

I hope you get an interested and compassionate cardiologist, that is worth more than any amount of knowledge if they are willing to learn and work with you. If you are anywhere in England there is also an NHS autonomic specialist centre in London that your GP can refer you to. I am currently trying to get referred there but as I'm in Scotland the process is a lot harder due to funding. 

 

 

 

 

Yep! I have actually been referred to St. John and St. Elizabeth to Prof. Rodney Grahame because my EDS is getting hard to manage within rheumatology within the NHS (I basically keep getting passed around between hospitals/rheumies). Prof. Rodney Grahame did actually personally ring me up and said that when he's seen me if nothing has been done with regards to autonomic testing (and gastro/potential MCAS stuff) he would be more than willing to refer me on to the attached autonomic unit that is under the same hospital.  Currently though due to money issues (I'm unemployed on ESA and money is tight) my mum has said we should try harder to see what the NHS can offer me, at least until I have my PIP outcome. 

Really sorry to hear that it was so difficult for you to get the TTT though, I'm beginning to wonder if it'll be difficult for me too. I have an echo scheduled for the 20th and on the same day will be getting a 24hr holter monitor. No mention at all of a TTT, but perhaps my actual cardiology appointment on the 29th they will listen to my logic and also explain anything weird they've found for the other two investigations (outside of the abnormality that was already picked up on the ECG I had in A&E the other week). 

Normally my GP is willing to work with me, especially with regards to EDS stuff, but for some reason he was just different in that apointment. Perhaps he had a difficult day?

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I would not be so focused on getting a TTT or on dysautonomia.   Tell the doctor your symptoms and let them take the lead, at least at first.  If you have tachycardia, a cardiologist who doesn't know about POTS might still know to give you a beta blocker, for example.  

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I was eventually diagnosed with POTS by Professor Julia Newton in Newcastle, by a stand test, not a tilt table. This is really simple to do and took under 15 minutes. Ask your cardiologist to do this if they can't or won't arrange a TTT. 

I would however always be clear with your doctors what you want to get from an appointment and explain why. We are not mind readers and this makes things easier for us too as what we assume a patient wants isn't necessarily accurate. Of course, sometimes what a patient wants is inappropriate, unsafe or outwith NHS resources but at least then we can have that discussion. 

Remember not all medical professionals will be familiar with POTS, even cardiologists, but if you make a good case, and even better present some well sourced written material such as the POTS for medics handout from POTS UK website, they will have a harder time fobbing you off or heading down the wrong track. 

Symptoms of POTS can sound vague and attributable to many different illnesses including anxiety. If you go in and list a bunch of seemingly disparate symptoms eg if you have headaches, GI or sweating problems as well for example, hoping they will think dysautonomia, there is less chance they will, and more chance of being dismissed or ending up with an erroneous psychological diagnosis. Prof Newton said to me that as POTS mainly affects women of menstruating age, due to unconscious gender bias more patients go undiagnosed and are labelled neurotic, hypochondriac, psychosomatizers etc. than in illnesses that affect more men. 

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 Having successfully worked with several doctors who don't know about POTS I personally would not start off by saying "I think I have POTS and need a TTT", even if that is what you want.  Most of us don't go to the doctor and say "I have bronchitis and need XYZ antibiotic".  We tell them we are coughing, have a fever, sore throat. We might mention that a family member has bronchitis and then the doctor figures it out.   You have to convince them, not tell them, in my opinion. The goal is not to get any test but to build a relationship with the right doctor(s) to figure out a treatment plan.  It sometimes takes time.

6 hours ago, bombsh3ll said:

I was eventually diagnosed with POTS by Professor Julia Newton in Newcastle, by a stand test, not a tilt table. This is really simple to do and took under 15 minutes. Ask your cardiologist to do this if they can't or won't arrange a TTT. 

I would however always be clear with your doctors what you want to get from an appointment and explain why. We are not mind readers and this makes things easier for us too as what we assume a patient wants isn't necessarily accurate. Of course, sometimes what a patient wants is inappropriate, unsafe or outwith NHS resources but at least then we can have that discussion. 

Remember not all medical professionals will be familiar with POTS, even cardiologists, but if you make a good case, and even better present some well sourced written material such as the POTS for medics handout from POTS UK website, they will have a harder time fobbing you off or heading down the wrong track. 

Symptoms of POTS can sound vague and attributable to many different illnesses including anxiety. If you go in and list a bunch of seemingly disparate symptoms eg if you have headaches, GI or sweating problems as well for example, hoping they will think dysautonomia, there is less chance they will, and more chance of being dismissed or ending up with an erroneous psychological diagnosis. Prof Newton said to me that as POTS mainly affects women of menstruating age, due to unconscious gender bias more patients go undiagnosed and are labelled neurotic, hypochondriac, psychosomatizers etc. than in illnesses that affect more men. 

 

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I wouldn't even be certain the cardiologist you see will know about PoTS. The first one I saw didn't seem to know about it but he did order a TTT anyway and the one who interpreted my TTT results (after the test) has just sent me a letter saying I don't have PoTS even though my pulse started racing as soon as the table was raised and I know from doing my own tests that it raised more than 30BPM :( 

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