Is any cardiologist better than nothing?

[Sarah Tee]

I am struggling to wait out the final 3.5 months to my appt with a dysautonomia specialist (cardiologist), but I feel my health is deteriorating and I need help now.

I suggested to my doctor (GP/PCP) that I should see a cardiologist locally to provide some support while I wait for my specialist's appt. For example, there is a cardiologist who visits to see patients once a month at the GP surgery.

The GP said that a cardiologist who is not a specialist in POTS/chronic OI would not be able to help me.

I disagree.

Wouldn't any cardiologist be familiar with volume depletion, OI symptoms, etc.? Even if they only know about them in an acute setting, surely they know more than a non-cardiologist.

The GP also said that no-one in the region would know anything about POTS/OI, but I found out that there is a cardiology practice in the nearby large town that has a tilt table and diagnoses fainting and dizziness disorders. Although POTS isn't mentioned, it seems like the cardiologists there would know about it.

https://www.cvcvictoria.com.au/service/tilt-table-testing-ttt

Should I keep pushing?

I am starting to feel like the attitude is "Ignore chronic conditions and let people get worse until they end up in hospital and then maybe someone else can do something".

In three months, maybe I won't be able to get out of bed, or maybe I'll catch a nasty bug because I'm so run down.

[toomanyproblems]

In answer to your title question I would say no, any cardiologist isn't better than nothing. At least not in my experience. Even the head of a very large cardiology department here did not know what POTS was. It was less than helpful. I've been to several non pots understanding cardiologists and it was a waste of time or worse. Even interpretation of tilt table results can be faulty if they don't have a basic understanding. I have not had a tilt table test but I've seen many people report (shown scans of results and reports not just their word) obvious POTS changes from tilt tables where the dr said the person didn't have POTS. And I'm talking what should be clear, defined, scientifically accepted diagnoses. POTS is complicated but some results shouldn't be.

Personally, having been to a million specialists for various problems, I would find the most knowledgeable person for the suspected problem and wait it out the best you can. 

[KiminOrlando]

I agree. The answer is no. My first cardiologist put me on a tilt table. I fainted. He told me to eat more salt, drink more water and exercise. This was considered diagnosed and treated. It didn't help at all. My chart had this resolved. So did my insurance company. Unfortunately, my body did not agree. It took 20 more years of struggling to break out of it. I advise to wait for someone who really knows what to do.

[cmep37]

I think it depends on the attitude of the cardiologist you see. The first one I saw didn't know anything about POTS, he told me POTS was psychosomatic - that I didn't want to work and that I was making myself ill so I didn't have to - all this from speaking to me for 5 minutes!!  I've also had nasty experiences in A&E from doctors who don't understand POTS and think it is just anxiety.  Having said that I have seen a great gastroenterologist who didn't really know much about POTS or hEDS but who was prepared to learn.  You have to be prepared for bad attitudes and be strong enough to deal with them.   

 

[sitcedar]

No, I say they do a much as they can but there are things they really do not know of, but they handle things as professionally as possible.

[yogini]

8 hours ago, Sarah Tee said:

I am struggling to wait out the final 3.5 months to my appt with a dysautonomia specialist (cardiologist), but I feel my health is deteriorating and I need help now.

I suggested to my doctor (GP/PCP) that I should see a cardiologist locally to provide some support while I wait for my specialist's appt. For example, there is a cardiologist who visits to see patients once a month at the GP surgery.

The GP said that a cardiologist who is not a specialist in POTS/chronic OI would not be able to help me.

I disagree.

Wouldn't any cardiologist be familiar with volume depletion, OI symptoms, etc.? Even if they only know about them in an acute setting, surely they know more than a non-cardiologist.

The GP also said that no-one in the region would know anything about POTS/OI, but I found out that there is a cardiology practice in the nearby large town that has a tilt table and diagnoses fainting and dizziness disorders. Although POTS isn't mentioned, it seems like the cardiologists there would know about it.

https://www.cvcvictoria.com.au/service/tilt-table-testing-ttt

Should I keep pushing?

I am starting to feel like the attitude is "Ignore chronic conditions and let people get worse until they end up in hospital and then maybe someone else can do something".

In three months, maybe I won't be able to get out of bed, or maybe I'll catch a nasty bug because I'm so run down.

Doctors can be hit or miss.  Awareness is improving, but I don't believe most cardiologists know how to treat POTS.  Getting to the wrong doctor can actually set you back.  If there is another doctor in your area on the Dinet list with a shorter wait, that might be worth a try.  3.5 months seems like an eternity but it is not unusual to wait that long to see a POTS specialist.  You can also keep calling for cancellations.  I am not a doctor, but most people do not get that much worse over a short period of time (unless something external happens like a car accident).  

[Pistol]

I agree with what everyone else has been saying: a cardiologist not trained or educated in POTS care may make things worse simply by dismissing your symptoms ( due to blissful ignorance ). I myself saw 5 cardiologists with different levels of (mis)understanding of POTS - the best one said if I had POTS he wouldn't know how to help me, the worst one called me hysterical ( I have HPOTS and apparently he could not make heads or tails out of my TTT ). So - no, a cardiologist may know less about dysautonomia than a good PCP ( that was and is the case with my own PCP ). 

[Delta]

17 hours ago, cmep37 said:

I think it depends on the attitude of the cardiologist you see.

@Sarah Tee @cmep37

Talk about attitude! When I was still making the rounds being referred to different doctors while they were trying to figure out what was wrong with me, I saw this one cardiologist, young guy, who had a really flip attitude about POTS. I first met him when he stopped by my room the morning after the hospital had kept me overnight, and he had recognized my name and was, like, I see you have an appointment with me next week, so I thought I'd stop  by and see what's going on with you. I thought that was very cool; very proactive.  But then when I saw him a few days later at the actual appointment, he started talking about POTS and he was, like, making fun of it, saying it was a "junk diagnosis" (yes, he did) and making fun of doctors telling people to eat more salt. Yeow.  A few weeks later I was diagnosed with POTS by a neuro, whom I now see for POTS. 

So honestly, I think if you see a cardio who doesn't know much about POTS/dys but is *open to learning about it and to working with you on your treatment*, you are probably in good hands but, along the lines of what @Pistol commented, a good primary or other doc can be just as good if they know what they're doing and take you and your condition seriously (and don't have a sucky attitude)!

@Sarah Tee I hope you are able to get to a physician who can help you find answers and relief soon!!

[POTSie78]

I agree that the wrong dr can set you back.  My cardiologist diagnosed me with POTS which he thinks is related to my spina bifida. The neurologist I was seeing said I couldn't have that because you only get that from being diabetic and refuses to look at my spine..ugh!  So I set up an appointment with a POTS specialist at the Mayo clinic.  I have a 2 month wait to see him and it's been really hard because I've been really symptomatic.  I cant imagine waiting 3.5 months!  I've begged my PCP and cardiologist to do something to get me back to work but besides propanolol,  increased fluids/electrolytes and compression socks they would admit me to the hospital for fluids. I've had a lifetime of unexplained health issues but I am holding on to the hope that we are close to some kind of solution.  I know this site has helped me realize there are better days ahead and that I'm not alone.  

[cmep37]

Honestly in the grand scheme of things 3.5 months isn't too bad - on the NHS in the UK I have been waiting 5 YEARS to see a particular specialist for hEDS!

[CallieAndToby]

Yea I'd say no too. My local cardiologist was supposed to know about dysautonomia and her lack of knowledge and treatment and neglect made me drastically sicker. She never did any testing except poor man's tilt table test and made a POTS diagnosis (wrong diagnosis) then threw me on a bunch of random vasoconstrictors which was the opposite of what I needed. She always pushed gatorade and stockings and I told her every time, "I have severe interstitial cystitis I cannot drink gatorade all day long, half a bottle will flare me for weeks." She refused to do saline iv's even though all the other doctors were doing them and it would've saved my life; I got referred to another cardio and she called me up and said once I was established with her I couldn't see anybody else (massive ego). I am deteriorating too, I have seizures and fainting all the time plus being bed bound and unable to sleep and I've been waiting on Vanderbilt for 10 months. So it's a waiting game but 3.5 months isn't long, can your GP do some things in the mean time, he should be able to order local saline iv's at an infusion center in the mean time? We have an infusion center here that my PCP can just order for me. I have a neurologist and he knows zilch about dysautonomia and won't do anything to help, this is so hard for all of us. I kept telling her that IVIG helped a lot and had no clue that there was potential testing for that for dysautonomia. I'm exasperated and exhausted and very weary. 

[Sarah Tee]

Thanks everyone for your thoughts.

I should have made it clearer:

An appt with a local cardiologist would not in any way affect my visit to the specialist in August, and I would not have to follow anything the local one said or prescribed. I would not even have to tell the specialist that I had consulted another cardiologist.

So when I asked "is any cardiologist better than nothing", I meant for the next three months.

Brain fog.

I have no medical support at all with the OI right now. The two doctors (GPs/PCPs) who knew my situation have gone, and the new doctor knows nothing about me or OI. Last week I told him I was feeling worse every day and that I desperately needed help. He said he would get back to me but hasn't.

I am on the waiting list for several doctors recommended to me, but none are taking new patients at the moment.

[Pistol]

@Sarah Tee - I did understand that when I responded to your question. However - I have found that a cardiologist that does not understand POTS probably will only recommend the following: beta blocker, salt and fluid increase and compression. That is all that is officially recommended for your symptoms, unfortunately. As soon as these treatments prove to be ineffective they throw up their hands in defeat. I say "they" as in "all of them" because I mean uninformed docs. That is why it is so important to see docs that are educated and experienced in dysautonomia. Most likely finding a cardiologist that knows how to treat your symptoms will take about as long to see as your specialist appointment. 

Having said that - the decision to see a cardiologist is entirely up to you. You might be lucky and find one that is willing to go beyond! In addition to my autonomic specialist ( who is a cardiologist but is in another state ) I also have a local cardiologist, and he is awesome. I was his first POTS patient but he has been open to learning about POTS. When I am in a flare or have unexpected symptoms that need adjustment of my meds he helps out, always. I am so happy to have him since he calls me at home when I need him and I can see him short notice when it would take a month or so to get in with my specialist ( and an 8 hour drive!!!! ). 

I understand how desperate you are to find a way to get back to "normal". The clinic you mention that treats dizziness and fainting may or may not be able to diagnose and treat POTS. Often they only look for VVS or arrhythmia related syncope. Have you had a TTT before? Having the results of a TTT would definitely be valuable for the specialist to have, so it might be helpful to get referred to them for a TTT. 

Either way - in order to get over the next 3 months without deteriorating further it is important that you continue to stay active. Many of us end up bedridden for a while and if it gets to that point exercises that can be done in bed are very important, especially the ones that use abs and strengthen leg muscles. Orthostatic exercises also are very important: getting out of bed every hour, and this exercise: stand leaning against a wall, both legs a foot apart. With you back firmly against the wall slide down until you sit on your heels, hold this position for a few secs and slide back up. Repeat this a few times, several times a day. This helps to prevent becoming bedridden completely, so it's best to do this while you still are able to be upright!!!!!!!

I hope you will find a knowledgeable doctor, and that you will be able to stay upright while waiting for the appointment!!! Please let us know how things go and if you see a cardiologist. Hang in there!!!!!!

[Sarah Tee]

Thanks @Pistol. I've been through all the interventions you can do on your own (except bed raising which isn't logistically possible ATM). That's why I feel like I need more help. Even moral support would be good.

I really miss my old doctor (who retired). She wasn't perfect but she knew me and always took the time to talk over my concerns.

I mentioned POTS to the current (now rejected) doctor because it tends to get recognition – I seem to have chronic OI with abdominal pooling after meals.

Anyway, I'm seeing a different GP (PCP) next week. Apparently he worked for many years in America so I am hopeful he knows about dysautonomia etc.

I feel like a cardiologist could test my blood volume, maybe prescribe temporary or one-off IV fluids (to see if it helps), or even try me on a low dose of florinef. Anything that might improve things slightly while I wait for the expert.

Thanks for your kind words. I will try to persevere.

 

P.S. I do leg and other strength exercises every evening, plus stair climbing (two-storey house). As I can no longer get out during the day for aerobic exercise, this is my sole exercise really. My legs are starting to look gymnast like!

[Sarah Tee]

@CallieAndToby22, thanks for the suggestion about the GP/PCP ordering IV fluids. I am seeing a new GP on Tuesday who has worked in America and I am hoping he will be more switched on. I will see if he is open to the idea. If it helps, having it even once a week would be worthwhile.

I have contemplated faking dehydration because I really want to know if IV fluids help, even if I can't take them long term. But honesty is the best policy ... so I will persevere going through the channels.

Sorry you had so many unhelpful experiences.

[Sarah Tee]

Thanks, @Delta. Sorry you had some bad experiences. It sounds like you have a good person to rely on in your neurologist.

You are right, any supportive medical person would be good. Thus far the best person has been my endocrinologist. She is fantastic and she is the one who referred me to the dysautonomia specialist. I kept hoping that I would have an endocrine cause so that she could treat me, but nothing showed up.

Am seeing new GP/PCP on Tuesday, so fingers crossed that he understands or at least sends me to a cardio.

[Sarah Tee]

On 5/7/2021 at 1:14 AM, cmep37 said:

Honestly in the grand scheme of things 3.5 months isn't too bad - on the NHS in the UK I have been waiting 5 YEARS to see a particular specialist for hEDS!

That is terrible that you have to wait so long. Do you get any help/support from anyone medical in the meantime?

My total wait is six months, which I thought was great back in Feb when they told me, as I think he is the only specialist listed for Australia right now on the list here.

But I've been banging on about OI for two years, and I've been asking about the problem for ten years, so in one way it will be a decade-long wait.

The problem is that my overall health is going downhill rapidly, even since February. I just feel like I need help now, more than I ever have before.

[p8d]

My dysautonomia cardiologist left the state and while there is a nurse practitioner who worked with him with dysautonomia patients I am notoriously difficult to treat (supine hypertension/orthostatic hypotension/hyperadregenic POTS/autoimmune disease all of which the cardiologist was familiar with). I sought out a regular electrophysiologist. He told me that I was better off sticking with the NP that understands dysautonomia than seeing him. At least he was honest. 

[CallieAndToby]

2 hours ago, Sarah Tee said:

Thanks, @Delta. Sorry you had some bad experiences. It sounds like you have a good person to rely on in your neurologist.

You are right, any supportive medical person would be good. Thus far the best person has been my endocrinologist. She is fantastic and she is the one who referred me to the dysautonomia specialist. I kept hoping that I would have an endocrine cause so that she could treat me, but nothing showed up.

Am seeing new GP/PCP on Tuesday, so fingers crossed that he understands or at least sends me to a cardio.

I would definitely pursue it. In my city they will only do it once a month for POTS patients which I don't think is helpful enough but I guess it's better than nothing. 

[Sarah Tee]

Thanks again to everyone who has commented.

I have some positive news. I saw the new GP today and he was very helpful. He is going to sort out some help for me and even mentioned organising a case conference with my endo, the cardio who visits the practice, and the specialist I am waiting for (!).

He said he didn't know a lot about chronic OI or dysautonomia, but he would do some research and make sure I had support.

I felt much better and wandered out in a bit of a daze because he had been so helpful.

[POTSie78]

1 hour ago, Sarah Tee said:

Thanks again to everyone who has commented.

I have some positive news. I saw the new GP today and he was very helpful. He is going to sort out some help for me and even mentioned organising a case conference with my endo, the cardio who visits the practice, and the specialist I am waiting for (!).

He said he didn't know a lot about chronic OI or dysautonomia, but he would do some research and make sure I had support.

I felt much better and wandered out in a bit of a daze because he had been so helpful.

Yay! That's great news! 

[Pistol]

@Sarah Tee - sounds like you hit the jackpot! NOTHING beats a good PCP who's in your corner!!!!!

[Sarah Tee]

I wish I had a happy update.

The GP/PCP who talked big about helping me has not, as yet, provided any help, beyond ordering blood tests inc. morning cortisol. (I'll give him credit for that.)

However, I found out that the visiting cardiologist who I was urgently referred to two weeks ago ... was on leave for two weeks and is back visiting the practice on Monday ... all appointments booked. According to the practice manager, all the staff were told about this. Well, Dr Talk Big did not get the message, nor did his predecessor Dr Do Nothing. And Dr On Leave's staff did not tell me either when I phoned to check on the referral. He has three colleagues in a nearby town (45 mins drive) that I could have been referred to in the meantime. So that's a fortnight's delay caused by their poor communication.

Dr Talk Big has also made noises about sending me to physio. I tried to tell him twice that I looked into this two years ago and it is not suitable for me. My symptoms completely disappear most evenings, and I am able to do a decent workout with weights, stairclimbing, etc. I am not deconditioned, just weak while symptomatic during the day and a bit unfit because you can't fit in a day of activity between 11 and midnight. I tried to explain this twice and he just wasn't listening/getting it.

I am now awaiting an appointment with Dr Plain Spoken on Monday. I spoke to him about sleeping meds on the phone a few weeks ago and he seemed all right. He will be the last try locally. I have made overtures to return to my former GP practice in Melbourne (capital city 2 hours drive away). It's a bit of a drastic move and not sustainable long term, but I can manage it long enough to get things sorted out. Although, Melbourne is about to go into lockdown again, so I don't even know if I can travel there.

My dad has described the situation as Kafka-esque.

Sorry I haven't replied individually to everyone's comments. I do appreciate the support and suggestions very much. Am feeling a bit cranky and exhausted so taking myself to bed to listen to a soothing podcast .

[Sarah Tee]

I realise that sounded a bit mean to doctors. I know they are under huge stress.

I should also mention Dr Conscientious, my endocrinologist for another condition, who has been stellar and is the one who referred me to the dysautonomia specialist. And Dr Retired, who was pretty darn good. Hope she is enjoying her retirement. I cried last week because I missed her good advice and listening skills. Also Mr Father Figure, my bowel surgeon, who is kind but tells it to you straight.

[POTSie78]

3 hours ago, Sarah Tee said:

I realise that sounded a bit mean to doctors. I know they are under huge stress.

I should also mention Dr Conscientious, my endocrinologist for another condition, who has been stellar and is the one who referred me to the dysautonomia specialist. And Dr Retired, who was pretty darn good. Hope she is enjoying her retirement. I cried last week because I missed her good advice and listening skills. Also Mr Father Figure, my bowel surgeon, who is kind but tells it to you straight.

I'm sorry you're going through so much.  I understand the frustration this causes on top of not feeling good.  I see 2 neurologists, 2 cardiologists, a gastroenterologist and a PCP.  My 2 cardiologists are in agreement that I have POTS based on TTT and numerous other tests.  1 neurologist doesn't believe you can have dysautonomia without being diabetic and the other neurologist doesn't treat anything but my sleep apnea.  My PCP left the area so I had to start over with  new one.  Its been very frustrating because my treatment has been very conservative so I started going to the Mayo clinic.   I had my first appointment with them recently and found out I have to redo some of my tests and have some new ones.  I feel like I'm back to square one but I am trying to stay positive since Mayo is a good place.   Its been hard to be patient waiting for answers and seeing multiple doctors and all the expense and time that goes with it.  I keep hearing the words of my cardiologist ..."we call it the million dollar workup.  what you have is hard to diagnose and hard to treat."  That turned out to be so true but I see others who found the right treatment and can cope with this.  I want to be one too so I will keep pushing forward.  And thanks to sites like this one, it reminds me better days are out there.