Cardiologists Won't Commit To Diagnosis - Lastest Update

[TCP]

After the fiasco of my Tilt Table Test where the attending doctor and technician told me I had POTS and Neurocardiogenic Syncope. The consultant cardiologist reviewing my test result said no to POTS and anything else. I disputed the test report, so the referring cardiologist and the TTT reviewer met up with me and after telling them again all of my symptoms have ruled out POTS, NCS and even Inappropriate Sinus Tachycardia, but agree I do have autonomic dysfunction. They have agreed in theory that I have symptoms of all these conditions but the TTT did not reveal anything conclusively. I have looked at the TTT graph and my heart rate does increase significantly but they say because I was already tachycardic the increase was not enough and when the spray was administered one particular spike on the graph ruled out NCS.

I would have thought that as I have Ehlers-Danlos and ME, the likelihood of me having POTS is pretty high.

They have put me on Ivabradine. See how I go with that. I also told them that I had no other option but to go to see a specialist in London to seek a diagnosis as I had hit an impasse as regards my local hospital. They would not refer me so I will have to pay privately. It will cost an arm and a leg to go there and have testing done afterwards. Not happy to say the least.

Has anyone else had to go to consultants who deal with these conditions after being knocked back by less knowledgeable cardiologists who aren't prepared to make a dx or explore further what is wrong?

[Dyspatient]

Howdy fellow "zebra". I have EDS too.

I guess there's room for interpretation in the tilt table test, but in what you're reporting, it sounds like they are saying they ruled out POTS or NCS because you didn't have SUSTAINED abnormalities...e.g. your the "spike" was in your heart rate or your blood pressure? My understanding from the papers I've read on POTS is that the criteria is a >30 bpm increase from supine to upright is what they look for. In my tilt table tests, they took min and max and if it was over 30, they called it POTS. I guess the criteria for NCS was a little squishier, my bp did horrible things - my diastolic dropped to 35, my heart rate fell, and I started to pass out.

So that all said, I still have discovered that even with those "positive" tilt table tests, I need to find someone to further explore what's up with me autonomically. I've had two tilt table tests, the one that showed "neurally mediated syncope" in 2010 and another in 2013 which was interpretted as providing "evidence of an exaggerated postural tachycardia" (supine 66 bpm to upright 111 bpm). Both were co-signed by the famous autonomic neurologist who heads up this lab/center. And yet, when I went to see a fellow in his practice for follow up on the 2013 test and to talk about my increasing autonomic symptoms, the fellow explained (at length, and vehemently) why she felt my tilt table test results were actually normal. The fellow then declared me "healthy", disregarding my concerns that I had recently developed gastroparesis, stopped sweating in response to heat, and was starting to have urinary frequency. Needless to say, I do not see that fellow anymore. She blew it and wild horses couldn't drag me back to that clinic. However, because I am worried that my autonomic symptoms keep piling up, I do want to see someone to find a cause. If it were just one thing, I'd be willing to wear the "idiopathic" label, but it's not and it's a little scary.

Right now, there is a local doc I found listed in the directory here and about whom I've heard good things. I just need to get my primary care to write a referral since her office only takes physician referral patients. I actually might have a way to do this without burdening my primary care (who has been amazing but who I've had to lean on for accommodation paperwork, parking permit paper work, paratransit paperwork, and upcoming disability paperwork so I want to give the guy a break!). I'm about to see a nephrologist (tomorrow) for the urinary symptoms and if he thinks this is also autonomic, I might ask him to write the referral.

[gjensen]

Yes. I could not say how many times I have heard that "something is wrong, but I do not know what is wrong". I understand your frustration, and it is legitimate.

Can you get a copy of your actual test results? I do not know how it works there.

[Praxxtor]

If another specialist also dismisses it or rules it out as inconclusive then I would suggest going for round two of autonomic testing. Good luck! Take copies of your results to the desired hospital in London which you want to go to for testing and ask their input. Maybe that could save you from having to spend a fortune on a second round of tests!

[corina]

Would a reference from your gp be helpful? Not sure how it works in the UK but that's how it works here in The Netherlands. Hope you will find a solution!

[Bigskyfam]

Copy of recs... Always good to have it in your hand. Sorry you are going thru this.

[Mermaid]

Hi TCP, so sorry to hear that this has happened.

Hope the Ivabradine helps. Is it possible that your GP might refer you to the NHS Sheffield POTs clinic? With the acknowledgement of autonomic dysfunction he/she might? I think that can be done by GP referral.

As you know, I had the autonomic tests done done in London privately (which confirmed POTs and NCS in my own case), however the diagnoses have not made much difference in terms of local care, treatments or search for an underlying cause. To local consultants (rheumatology/ neurology) they seem to be just words on a letter that they don't understand or have any interest in trying to. I just get the see you in six months thing. I often get the feeling that they don't really believe in the condition. My GP is sympathetic and helpful though.

Saying this though, I completely recognise how important and validating correct diagnoses are for a sufferer, especially after years of seeing doctors and so on.

[TCP]

Thanks everyone for your replies and taking the time to get back to me. I know I am not alone in this and that is a great comfort to me.

I had to come off the Ivabradine as it was making me very ill; upsetting my nervous system and gut. I am very disappointed. I am now giving my body a break from it and the beta-blockers. I will see what happens with my HR and BP and monitor it myself. What I found strange was although the consultant wouldn't commit to a diagnosis she spoke to my GP surgery and told them I was taking Ivabradine for Inappropriate Sinus Tachycardia and POTS, of which she told me I had neither. I think that they didn't see the TTT as being conclusive enough. In a follow-up letter, she wrote to my doctor, mentioning my symptoms and she left out the syncope and the fact both consultants stated that I had autonomic dysfunction.

I hope to see another GP soon, as my last one has left the practise. I will see if there is a possibility of a referral. I have in mind one or two consultants to check out and I hope to get some full autonomic tests done. I need that diagnosis as I am floundering. I would like to maybe see two consultants who have slightly different specialist fields. I think that would be the best.

Fingers crossed.

[Katybug]

I'll keep my fingers crossed for you too, TCP!

[SarahA33]

TCP, You are always so pleasant and so positive, I truly hope you get this sorted out quickly. Having a team of doctors that you trust and that are knowledgeable in all of this is so much easier said than done, but its possible. It took me a really long time, though. It does take a village.

Hang in there!!

[TCP]

Thank you so much for your time and trouble to post comments.

I finally saw my GP hoping something could be done about my problems as I am no longer on any medication for the autonomic issues. Unfortunately he wasn't sure what to do and wouldn't refer to a. Any clinic in London or anywhere else as the Cardiologist had not suggested it in her letter as a follow-up and b. He said he wouldn't know where to send me even after I threw some of the specialist's names in his direction. He finally decided to refer me to a neurologist for nerve tests and said he couldn't book them in himself.

Today I got a letter to choose and book Carpal Tunnel testing at my local hospital. I called the hospital clinic and they said that I wouldn't got full body testing done anyway as it would take 4 hours and suggested I come along have the Carpal Tunnel tests and so what happens from there and if more testing needs to be done. It's all pretty farcical and frustrating. I seem to get nowhere very slowly.

[TCP]

PS Now I am off meds everything is going haywire with my BP and HR. My GP didn't seem too concerned about the tachycardia leading to Cardiomyopathy.

[kaevne]

Where do you live? I see a POTS specialist in VA in the states if you'd be willing to make a trip. He sees a lot of international patients who are in the same boat as you in regards to a lack of regional knowledge on POTS.

[TCP]

I'm in the UK. It would cost me £4000+ to get to see the right doctor in London (there are plenty of them there), but it's going to take me a long time to save that sort of money. If I could get a referral on the NHS it would be free to me. It's just a struggle getting that sorted.

[SarahA33]

TCP, are you referring to Dr. Goldstein from NIH?