appointment frustration........what do I do????

[evo123]

I have just got back from my cardiology appointment.  I am sooooo frustrated.  I feel like giving up and staying in limbo till my body does something else!!!

Cardiologist I am under was away so I saw his understudy.  Who asks me am I still feeling a 'little' dizzy and do I still get palpatations.  When I try and explain to her that I have many symptoms that differ on a daily and even hourly basis she just looks at me.  I ask her if they are going to either confirm or unconfirm a POTS dx and try to inform her with the facts/literature I have gathered.  Her response was your hearts fine!!!  I have never once said I have a weak heart, actually it's the opposite...it's strong - but something is upsetting it.  Then she says I do not have a dx of POTS - to which I reply, I was given a positive dx on TTT, then an adrenal tumour was found so this was put as 'suspected' - and also they have been treating me for this with BB and fludrocortisone!!!!!

Then she says that she saw a person with POTS once who was so weak they could not sit up!!!!!!!  I had to inform her that for over 2 months I could not tolerate sitting or standing up......this should have been in my notes.  She then brings a consultant cardiologist in who states their is no test for POTS and that my general practitioner will treat me!!!  My reply is that I am aware that POTS is a collection of symptoms and not much is known but the diagnostic criteria at the moment is a heart rate increase on TTT by 30bpm or more, which mine increased by approx 56bpm.  

My weakness is not as severe and all my symptoms at this very moment have eased alot, but my health is not predictable and I still feel awful constantly, symptoms can worsen in a second.  I can tolerate being upright now for a while but not so much to conduct what was a 'normal' day for me.  I am going to put together all my symptoms etc and forward them to my neurologist before my next app with him.....I want him to look at the whole picture if I can get him to.

I firmly told them that their cardiology department gave me this 'suspected' dx so I expect them to either rule in or out a dx so I can recieve help or that I want to be refered to Prof. Mathias in London (I have been requesting this for a while now)  I have another appointment in 3 months time but in the meantime I have said that I am going to ring my consultants secretary and request an appointment with the cardiologist who gave me the 'suspected' dx.  

[kelly1258]

The doctor you saw obviously like most is not familiar with POTS.  We as patients usually have to educate them.  Good Luck

[evo123]

All of the dr's I have seen have little or no knowledge of POTS, it is really frustrating.  Hopefully, one day there will be more recognition of this illness and people will not be treated like many of us on this board have x

I do not mean to be disrespectful to any dr who has been involved in my care, as many of them were really nice - but nice does not get me any answers.  But, if I had a patient with an illness I was not familiar with, I would make it my business to learn all I could about there condition and help them.  As a dr I would not want to see my patient suffer when there are maybe medications that can help them (hopefully) x

[AireScottie]

I'm glad your doctors are at least being nice; I had a lot who were nasty and "uninformed".  Many of them never crack open a medical journal after medical school (sometimes for lack of time), so if they didn't learn about it in school, it doesn't exist.  A lot of them are also totally unwilling to learn from patients.  

Is there any chance your GP can refer you to this Professor Mathias?  Getting back to see the cardiologist who originally diagnosed you sounds good too.

If it makes you feel any better, I had some baboon in a white coat tell me I couldn't have dysautonomia WHILE he was looking at the neurologist's report on my biopsy showing that I had no nerves left.  He was that dumb!  

[springflowers]

Hi evo.

I really can feel your frustration. I hope you get better support from your Cardiology department in future. It sounds to me that trying to see the cardiologist who first suggested POTS to as a diagnosis for you is a good plan. I hope you get to see them soon.

'SurgiMenopause' suggested I look you up. I posted my symtoms on the Undiagnosed Symptoms Forum and SurgiMenopause suggested that I may have POTS. Since then having read up on the condition I had been wondering why my Cardiologist hadn't managed to diagnose or suggest POTS (other than the fact that she was clearly more intereted in getting home for the evening than seeing me) but know I realise from your post that most of them are unaware of the condition.

Having looked at the Dysautonomia Information Network there are two doctors listed for the UK who are fairly near to me. I live quite near to London. I've booked a double appoinment for a different gp (in 10 days time) at my local surgery and I'm going to go through the symptoms as my gp has decided my heart rate goes up due to anxiety. (Why do they decide things like that based on just their lack of knowledge?) I'm going to go armed with my new information on POTS. The thing is I'm feeling reasonably well and my heart rate isn't too bad at the moment and so don't think a TTT would show much now. I'm more trembly in the muscles now. I still want a formal diagnosis if possible though. I'm hoping to get a referral to one of the two cardiologists listed on DIN. I'll let you know how it goes. I had a good chat with the senior receptionist at my gp and she that I was fully entitled to say I want a referral to a different cardiologist. Fingers crossed.

I really hope you get to see the cardiologist who suggested POTS to you.

[evo123]

My GP says she wants to send me to Prof. Mathias but needs the back up of a consultant, hopefully I will get this soon if I make enough noise!!  My only concern is that of an improvement in my symptoms, I am not as symptomatic the past week or so and I would be worried they would not be able to dx whilst I am not as sick as I have been.  I would have prefered to have been seen whilst symptoms were in full flow.  (not that I am wishing to go downhill again!!!!)  

If I got to see Prof. Mathias and I was still less symptomatic - what would happen then?

The lack of interest in this condition is appaling.  It is so misunderstood.  When I was in hospital and I was told I had POTS my brother brought me in some info off the internet and when I read it I cried - it was me!!!  Although, I was a bit in denial (well more than a bit!!) I didn't want this horrible disease that could not be treated.  Especially with a name like POTS!!!! But 3 days later when a doctor came to see me he smiled and said - right we will start a betablocker and you will be like a new woman tomorrow......gosh I wish he was right, but from what I had read this was not the case and as we all know it's not .....but this is just one example of lack of knowledge or willingness to read about it that I have experienced.  I was, and still am, sure their is a diagnosable and hopefully more treatable underlying cause for my POTS symptoms - well I am hoping!!

Are you happy with your doctors.  How long did it take for you get a dx and find out the underlying cause?

[evo123]

Thank you for your kind words.

I have read through your post on the Undiagnosed community board and I agree with SurgiMenopause that there is a good possibility that you do have POTS.  Diagnostic criteria is a heart rate increase of 30bpm or to 120bpm on standing from a supine position, and you seem to fit.  There can be several causes to POTS symptoms and some being more treatable than POTS on it's own.  So really you need to push for a dx so you can search for a possible underlying cause.  That is what I am trying to do.  

I have contact details for the autonomic unit in London, where Prof. Mathias consults and I also have details for his private clinics - if you wanted this option primary testing by him for POTS is approx £2000.  Let me know if you want any of this info.  I would first see if your doctor is willing to refer you, it may be easier as you are nearer to the London dysautonomia clinic.    

I am in a similiar position at the moment as I mentioned above regarding an improvement in symptoms (at last) - but I am still unwell and only about 70% functional.  I wish I had been properly assessed when I was really bad.  

If I can help you in anyway please don't hesitate to get in touch and if you have any questions post them here and the knowledgable members of this community will try their best to answer them.  I will keep my fingers crossed your appointment goes well  x

[springflowers]

Do you know how to differentiate between Inappropriate Sinus Tachycardia and POTS? (The cardiologist I saw diagnosed IST.) To me it seems to come down to whether you have sinus tachycardia at rest (Does this mean lying or sitting?) and whether you have additional symptoms such as tremulousness, headaches, vomiting etc that you wouldn't get IST.

Sorry if I've gone off topic here. Maybe I should go and read the forum rules.

Please read the PM I've sent you.

[springflowers]

And whether your pulse rises to the 120 bpp or higher when you go from lying down to standing.

[SurgiMenopause]

I have been diagnosed with both IST and POTS myself.  I was first diagnosed with IST, then after a tilt table test, I was told I had POTS, though my primary care doctor was not convinced and still thought I had IST.  When I get up in the morning, my pulse can raise to the 120s or 130s if I sit first on the edge of my bed.  But when I went from laying to rising this year for the holtor monitor, I purposefully didn't sit first and stayed up a little while after rising & heart rates got to 140s and 150s.  I think maybe you can have both, but in order to have POTS, you have to have the big fluctuation happen from lying to rising- 30 beats a minute (or more) higher when standing.

[Lisa33167]

Why do physicians have to be like this? I've seen my fair share of this kind and get ticked off with my cardiologist when I don't get the answers I need.

Reading your post and the dr's response leads me to one thing - while I don't have POTS I do have NCS and OI, plus heart problems - NO TWO PATIENTS are the same; for a doctor to think that makes me want to call them for you hehehe

Just like no two patients are the same, there are no two days exactly alike.  We can take one day and compare them to others, but my goodness what if we didn't get sleep the night before or got a great nights rest? That can attribute alot to how a person feels, sick or not.

I'm not sure how your system works, but I'd put a nice bug in your insurance company's ear about the doctor you saw that day get them on your side and beg them for help.

Tell them how they're dragging they're feet and the fact you need a diagnosis so you can get treated and get well.  Afterall a patient getting treatment towards getting better will be less costly to them down the road.  Heck you may need TONS of more testing; really expensive testing [hint hint] if this dr doesn't confirm or deny that you have or don't have POTS....

[AireScottie]

Sorry it took me a few days to get back!

Do I like my doctors?  I do now, but I've seen a whole lot of them!  I have several rare health problems, and I never "look sick", even when my heart stops, so I think I've heard every dumb comment a doctor can make :)  And, it seems like the dumber they are, the meaner they are!  I've got great incompetent doctor stories, but I try not to dwell, just keep moving forward.  In my less charitable moments, I'm tempted to start a website called "dumbest doctors in the world" and list what they did.  In truth, it's been about 50/50 decent vs. nasty.  But of the 50% decent, only about 5% have been really intelligent and informed.

How long did it take to get diagnosed?  Well, it took less than a year to get diagnosed with NCS, because my heart stops during tilt tests.  Didn't have POTS symptoms to begin with.  However, it took about 8 years to get diagnosed with the neuropathy responsible for the NCS and POTS.  Most doctors still think there's no way to find an underlying cause for dysautonomia, and while that's true in some cases, that doesn't mean they shouldn't try!  I've found many doctors are real creatures of habit, very set in their ways, and don't want to try anything new, even if it has become standard practice.  Can we say severe obsessive compulsive disorder?

Stick with it and just be relentless.  I don't know how your national health care system works, but I finally learned that if a doctor was clueless and unwilling to listen and treat me as an equal, it was time to find another.  I tutored pre-med students while at school, so I tried the same method for the longest time with my doctors, bringing in journal articles, reports from specialists, etc.  So frustrating, and a waste of time!  Just stick with it, and you'll find someone to help you eventually.

[evo123]

Think we should put together a POTS action group on here!!!!!!!  

I am in the UK so we don't have insurance so are at the mercy of the NHS.  My Gp is being supportive and is starting to push the hospital for me.  I am not going to be sidelined any more.....I have had enough......

Wish me luck x

[evo123]

The web site sounds good!!!  I have noticed that when a dr has little knowledge of a condition they react to it with disregard and disrespect!!

Gosh, 8 years is a long time!!  Could they have prevented things for you if they had an earlier diagnosis of this?

After my lessening of symptoms they arrived back with a bang last week!!!  Just when 2 of my daughters were ill!!!  What timing hey.  The good thing from their big return is that I was in my GP's office yesterday and my hr bp etc were fine, I leave the room and nearly pass out in the hallway.  They take me back in and put me on the bed.  My bp had shot right up along with my hr, I was really shaky, and I developed a rash right up my chest, neck and cheeks (I have not noticed this before!!).  She is sending me back to the endocrinologist because she believes this growth I have may be causing some of this!!!  

I am still low on potassium, b12, vit d, and ferritin, these have not improved since going gluten free (i'm celiac too!!),  they should be getting higher by now.

I see my neurologist on monday morning and am looking forward to that.  I will update after my appointment.  He is the only hospital consultant who has actually given me any 'tips' on how to help with POTS.  

Hope you are ok x

[AireScottie]

Well I'm glad(?) you had symptoms while at the doctor.  Whether it turns out to be POTS or a combination of things, you are clearly sick!  I hope you get some help from the neurologist.  Have you seen a gastroenterologist about the Celiac?  It sounds like you're really not absorbing some important things.  I know you wrote your GP was going to wait and see if that improved; has she started talking about injections again?

My symptoms probably would not have gotten nearly as bad if I'd been treated earlier.  If nothing else, the nerve damage would have progressed more slowly.  My neuropathy is still getting worse, and my autoimmune disease has been a little worse the past few weeks.