Cardiology have discharged me...so now who takes care of POTS?

I had my cardiology appointment today and was told as my heart is strong there is no more they can do for me.  After my neurologist (who discharged me as he said my cardio will look after me) said yes it is POTS the dr I seen today said they will not give me a confirmed dx.  So I asked why I was on steriods (fludrocortisone) and her reply was for POTS!!!!!!  

I was told there was no more tests or treatment they could do for me - when I pointed out that there was several tests/treatments and there were conditions that could cause POTS or it's symptoms, the dr said from a cardiologists perspective there was nothing they can do for me.  I was under the impression that it is a cardiologist or neurologist that cares for people with POTS.  

So back to my GP (who is actually great and being very supportive - who will now hopefully try and get me an appointment at the autonomic unit in London).  I just pray that I can get there soon.  I am struggling so bad and have to have constant help to care for my girls.  I cannot live like this.  I cannot even take my girls to nursery/school.

I have a GP appointment in an hour I will post the outcome x

[evo123]

I forgot to mention that the hospital dr said that I didn't have a drop in bp on my tilt table (mine went very high) and that is one thing thats holting a dx - I said some people have a rise and hypotension is not always needed for a dx.  Her reply was no the tachycardia happens to compensate for a drop in bp.  My reply was not in all forms this happens.  But I didn't get a reply.  She was lovely I just think she was unfamiliar with POTS.  


I have just got back from my GP appointment.  Regarding a referal to the above centre that is now not forthcoming.  The neurologist I seen noted in his letter to her that he does not think this is needed at this point, therefore, she cannot refer me.  


She wants me to stop the fludrocortisone to see how I respond, reducing it each week.  She doesn't think I need this.  I am willing to try and see how I am.

I do not know where to go from here.  I am actually close to tears.  I am being told now to see how I go and we will go from there.  My GP thinks there is another cause to whats going on and hopefully there is something more treatable - but how do I find out and how long do I have to wait?

If the cardio team advise that a referal will be the way to go then my GP can do so, I will just have to wait and see.

[AireScottie]

Gah!  What a mess!  Keep us posted

[karinosa]

I too have high blood pressure instead of the low blood pressure that the majority get, I had been treated with a calcium channel blocker but it didn't work for me.  

Right now the only treatment I'm on is vitamin therapy and that seems to be doing the trick.  

I will go to my family Dr. in a couple of weeks to see what else they can do for the high blood pressure that only happens if I'm upright, but same like you my Cardiologist said he couldn't do nothing more as my heart is healthy, the specialist that diagnosed me with the POTS is a cardiologist too but the only thing she said to me was to increase my water intake, to even drink water before getting out of bed, and yes the days that I do not drink as much water I feel worse, if my symptoms were to increase she said she would treat me differently but since for me all of these started after a virus illness she thought I had a good chance on getting better which it has but it is not gone and some days are worse than overs.  

I totally can relate with how frustrated you feel about not being able to care for your family, luckily for me my kids are now a bit older, 12 year old daughter and 11 year old twins (boy/girl) so they can help lots but it is still very hard for me when I can't do the things that I normally would've been able to do prior to getting POTS.

Take care and let us know how it goes for you.  How did all of this started for you?

Karin

[Heiferly]

Can you print out the diagnostic criterion from different experts in the field for these doctors to show them *in print* from the top experts worldwide what the exact diagnostic criterion are (which you are correct in explaining to them, but maybe seeing the actual excerpts from medical textbooks and journal articles would assist)?  I would be happy to round up these paragraphs with the diagnostic criterion from the top two or three experts here stateside as well as from your top guy on that side of the pond, and may be able to throw in another nation/continent or two for good measure.  Let me know; it'll probably take me several days to round it all up for you but I really feel like you *need* to be taken seriously.  Your case seems pretty clear-cut in terms of needing to be seen by a specialist who knows this field.

Have you tried emailing Dr. Mathias directly or calling his office directly yet?  His office may be able to advise you on how to proceed.  

Christopher J. Mathias, M.D.
London W1 1NY
Phone: [phone]
Fax: [phone]
E-mail: c.***@****
Multiple System Atrophy (Shy-Drager Syndrome)
Autonomic Failure (PAF) and Various Secondary Autonomic Failures (amyloidosis)
Autonomic Disturbances in Spinal Cord Lesions
Other autonomic dysfunctions (such as hyperhidrosis and syncope)

[evo123]

I have emailed Prof. Mathias a couple of weeks ago (the only email I could find for him was a university one) and have not heard from him yet.  But I did contact the autonomic unit directly and they have emailed me details of how my doctor can refer me (on the NHS) and also details of how to go private with Prof. Mathias - they were unsure of his consultation fee but gave me an approx figure of £1900 for preliminary POTS investigations (which I think is quite good especially if it can help with diagnosis).  If you (or anyone else) would like his secretarys details let me know.

Below is a link detailing conditions that are dealt with at the unit and how to go about getting a referal.  

http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Paediatrics/Pathology+-+Autonomic+Unit/

Regarding the information on criteria for a POTS diagnosis, i would be sooooo grateful if you could do that for me.  I am also rounding up causes to it to (forever in hope !!) and I haven't given up on this tumour I have being a cause :) a friend I have on here has given me lots of information x

I think the only condition that has been fully ruled out for me (in regards to differential diagnosis' is Porphoryia (sp).............

When one is confirmed as having POTS does a cause still be looked for?

You are a great  Heiferly x  Thank you x

It would be ideal if there where dysautonomia advocates on all sides of the pond in whom could accompany people in my situation so they are not looked at as though they have 3 heads!!!!!  

[evo123]

Hi and thank you for your post.  

When I was carrying my last child I was unwell and a cause could not be found and really it's progressed from there. (if i'm honest though I have had symptoms, although mild for several years).  May this year was when I seriously 'crashed' and have been unwell since, for two months I could not tolerate sitting up for longer than several minutes.  I had a positive tilt table test my heart rate jumped up over 50bpm and my bp went high.  I was diagnosed with POTS then un-diagnosed!!!  Now it is recorded as 'suspected'.  An adrenal tumour was found as well as the fact that I have Coeliac disease.  I was convinced this tumour was the cause but urine tests were normal range, I still suspect it may be contributing.  

How are you with your POTS?

[LivingInHope]

Please check this website for a comprehensive look at POTS:
http://www.ipej.org/0602/raj.htm

[evo123]

Thank you x

I have printed this out.  A good find x

[Heiferly]

Alright, it's been 3 days admittedly, but I think I've made a proper dent in what you need at least.  And hopefully it's well organized enough that others can use it as well.  Please give me some feedback (everyone who looks at it feel free to chime in!) on whether these passages will suit your purpose, if there's enough in the attached references to get you to the articles/texts from whence the quotes came in the event you'd like more substantial material for your docs than just those brief passages, and whatever else you think of in looking it over.  If you give me the names of other experts you'd like to quote, I'll work on sections for them too.  It's still a work in progress; I figure I have enough up now that you can get the idea of it.  I need to get Dr. Raj's textbooks up there.  

So yes, feedback please.  I'd rather have some feedback before I plow forward if I'm off track.  :-p

[Heiferly]

Gah!  The link would help, now wouldn't it?

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196

Me?  Brain fog?  Never.  ;-)

[Weney3777]

That clarifies alot. Thank you.

[evo123]

Thank you x

You have pulled out very informative and educational pieces and I think there is enough there for me to take with me.  I will print out your extracts and also a couple of the articles, they are key pieces.

This info will help me and many others also x


In one of the articles by Dr. Grubb it states:

'POTS can also be a form of paraneoplastic syndrome that can be seen with adenocarcinomas of the lung, breast, ovary, and pancreas.'

Do you know if these tumours can be found on the adrenal glands?

[AireScottie]

Paraneoplastic syndrome can result from a lot of forms of cancer.  I don't know if it can result from benign tumors or not.  You might post a question about this in the Cancer Expert Forum to get better info.  I don't know how bad their backlog of questions is, but this sounds like a good one.  There are also blood tests your GP can run to check for paraneoplastic syndrome.  

From your September 5 post, many doctors don't bother to find a cause for POTS, or they come right out and state there's no way to determine the cause.  However, if you can find a probable cause, and it's treatable, there's a chance the POTS can improve or go away.  I think we'd all love that!  For instance, if you do have paraneoplastic and the tumor is removed, your nerves could start regenerating and doing their job again.  If it's from your low B12, then once your levels stay up, you might see improvement.  If the doctors do come up with a cause, keep in mind that it could be a long time before you see improvements in your POTS symptoms.

[evo123]

Thanks for your reply.  I do not know anything at the moment about paraneoplastic syndrome so I will follow your advice and post a question on the Cancer Expert forum.  As far as I am aware I have had no tests to see if my tumour is benign or malignant, I have just been told that if it has grown when it is rescanned then they will look at it further.  Can blood tests be done to see if it is benign?  

I think once a dx of POTS has been made then they should test extensively for causes since this can be such a debilitating condition.  I suppose in the future they will.  

I have recieved some of my medical notes and when I was first admitted into hospital i informed them I was B12 deficient.......but my bloods showed my levels to be around 900!!!!!  They must have thought I was bonkers!!!!  I had a B12 injection a couple of days before :) x   It was only when several days later they dropped low again that I was shown as being deficient!!!!!   :)