TTT data - supine heart rate not usual for me

[Greyhound]

Hello all again. They've sent me the data from the TTT. Here it is.

109 is NOT my normal resting heart rate - it's normally between 65 and 85. I'm so angry this wasn't done properly. I think I've lost my job now because I can't wait another 8 months for another test. I'm so angry and upset.

Also, could anyone please tell me if they have had blood pressure readings like this in a TTT? Because I don't really know anything about blood pressure.

[MomtoGiuliana]

That is frustrating.  Did your doctor determine this is "normal"?

Here is the definition of POTS however:

Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.

IMO it does not seem normal to have a hr over 120 bpm on standing, even if your hr was 109 to start.  Along with the symptoms you are describing (in the sheet above) that should be evaluated by a specialist, IMO.

Normal bp is I believe 120/80.  I also experienced increased bp on standing when my POTS was severe.

Hope you can get good answers soon.

 

[MomtoGiuliana]

May want to review this resource:

https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/

 

[Greyhound]

Thanks for your replies. They seemed to say it's normal, yes.

They said: 'She has longstanding symptoms of chronic fatigue but there was concern about the posibility of postural orthostatic tachycardia syndrome. [...] This [the tilt test] demonstrated a normal haemodynamic response to tilting and no diagnostic features of POTS. [...] Unfortunately we have not demonstrated a cardiac contribution to her symptoms. [...] I am discharging her back to your [the GP's] care.'

No further consultations, no recommendations of further tests, no questioning the blood pressure, no mention of the heart rate being very high. Nothing.

[Greyhound]

Note how in the table I've posted a picture of above it says '(if ?POTS)' next to the 10 minute reading as if that's the only reading in the whole of the upright part of the tilt test that tells you if you have POTS.

[MomtoGiuliana]

Can you seek out another opinion?  Is the dr a specialist in dysautonomia? 

I also had a cardiologist state that my heart rate changes were "normal" (this was not after a TTT test, but just looking at orthostatics in an examination).  My specialist (electrophysiologist) has stated that he looks at not simply bp and hr changes but also symptoms the patient reports, when making a diagnosis and determining treatment needs.

I hope your GP would be open to referring you to a specialist.  It's hard to see how a supine hr of 109 is normal, or a hr going over 120 on standing is normal, especially in light of symptoms.

[Greyhound]

I couldn't wait any longer on the NHS (I love the NHS but it's now so underfunded) so I booked to go private (although not a PoTS specialist as it turned out he was too expensive). I booked the consultation on Monday and saw the consultant this morning.

He said he thinks my tilt test was interpreted wrongly and he thinks I have PoTS but he wanted me to have a 7-day ECG.

So now I have this little recording device stuck to my chest and it's costing me £400 so I'm desperate for it to record my tachycardia...but yesterday and today, after a fortnight of particularly crippling PoTS, guess what...my body decides it's time to have one of its rare non-PoTSy phases. I could cry.

[MomtoGiuliana]

Over 7 days though you should get good data  And it sounds like he may be looking to rule out other problems besides POTS with a 7 day monitor.  Sounds like this doctor will take your situation seriously.  That is great.

[Greyhound]

I hope so, thanks.

[bombsh3ll]

A continuous ECG can be useful to rule in or out other problems. To confirm POTS though I would ask him to do a stand test when you go back, it only takes about 20 mins total, less if like me you can't make it standing for 10 mins. I was diagnosed with the stand test after an incorrectly reported TTT. 

More importantly, POTS or not, do ask him about treatment for your symptoms. 

I also paid to see a private cardiologist on Monday and he was great - willing to try intermittent IV saline after my blood volume test plus another trial of fludrocortisone with proper monitoring this time and medication to mitigate the side effects. 

I hate having to go private though after paying into the NHS all our lives. The people who have eaten, drank & smoked themselves half to death get everything thrown at them.

 

[Greyhound]

Panic over today as I'm back in tachy mode (never thought I'd be pleased about that lol)

 

1 hour ago, bombsh3ll said:

I hate having to go private though after paying into the NHS all our lives. The people who have eaten, drank & smoked themselves half to death get everything thrown at them.

 

Yeah   I'm very grateful for it existing (much rather this that the US system) but it's not what it used to be  I'd be happy to pay more NI if it meant bringing the system back to how it used it be.

[bombsh3ll]

Glad your POTS is acting up when needed! Is there a button to press when you have symptoms? I did a 24 hour ECG and was supposed to indicate when I felt presyncopal & lightheaded - er, all the time!!

Nobody should need to pay extra NI - I am a GP and there is so much WASTE in the NHS it is shocking! 

[Greyhound]

Thanks. It showed up in the morning but then went away again. Argh! Maybe tomorrow.

I wish such waste in the NHS could be dealt with - so sad because it affects so many people  

[Womble]

Hi, I am from the Birmingham area and have POTs, but was diagnosed privately in Gloucestershire.  Now under the care of an Electrophysiologist at Solihull Hospital. 

There’s a POTs clinic at the QE that I’ve heard good things about and I believe one in Coventry, but if your CCG is anything like mine an out of area referral will probably be an uphill struggle, at best.

My TTT was fluffed for the same reason, ie, they didn’t wait for a period to get a baseline hr before starting.  I was extremely ill that day, to the point of my husband having to pull off the motorway so I could lie down, as I couldn’t sit up anymore and I developed the worst migraine I have ever had in the journey as well.  Then I had to walk from one side of the hospital to the other just before they started my test.  My BP was through the roof, never recorded that high before or since and my usual problem is low bp.  My hr was 90bpm, when supine was usually 62-68 max. Fortunately, despite all that I still had a 50 beat increase, although that was low for me (I usually go from 62-68 to 150-175) so I was still dx with POTS.  I also had a 24hr urine capture at a different time, which found my aldosterone levels were shot and I wasn’t sodium sparing at all.  I couldn’t afford treatment privately, as the testing came to over £1,000. He did try me on a v low dose of Bisoprolol, but I literally couldn't stand up while I was on it.

I am now on Ivabradine, via hospital/consultant-led care, as my GP refused to prescribe it.  It has massively improved my hr increases and my general quality of life, but hasn’t been the whole answer for me.  Resting hr is now 52-56, increasing to anything from 90 to 120 orthostatically, but I have had some issues with nocturnal bradycardia and I am about to ask for a referral to look at trying volume enhancers and another to deal with my scary night episodes.    I recently had an ambulatory ECG too, as I have been having palpitations  and pre-syncope on micturation, but typically my body decided not to do it while I was being recorded!

Sadly, my 13 year old son is now also suspected of having POTs.  He has fainted and fallen downstairs top-bottom three times in the last couple of months and had suspected neck fractures, etc as a result (thankfully it was just severe bruising).  He is also fainting when seated and is very symptomatic whether he faints or not.  He has lots of signs of dysautonomia (parasthesia, numbness, burning skin, temp dysregulation, gastro issues, pupillary dysfunction, etc). He’s under Birmingham Children’s, who have been great and has had a full cardiac workup, which was all ok, now discharged from cardiology to neurophysiology and will be having his TTT shortly, but, they have told us they don’t have anyone that knows enough about POTs to treat it, so will have to refer on, if/when he is diagnosed.

I do think the West Midlands are a real deadspot for POTs and Dysautonomia specialists.  (Actually the same goes for Ehlers Danlos knowledge/specialists.) The best ones all seem to be down in London.  Have you looked on POTSUK and STARS for a POTS aware dr?  They don’t just list private drs, so your GP may agree to refer you for ongoing care if this private Cardiologist throws the TTT data into question.  My GP only took notice when I bought an oximeter and created a table based on home stand tests.  She was sceptical, so she did one in her office and was really shocked at the result.  You don’t need a TTT for a diagnosis by the way, a stand test, done properly, is enough.  All the methods and criteria are on POTSUK and Syncope.co.uk.

Good luck with this Cardiologist, I really hope he helps get you on your way to a diagnosis, treatment and ultimately a better quality of life.

[Greyhound]

Womble, I'm so sorry - I didn't see your post until yesterday (and I was too exhausted to post yesterday). I enormously appreciate the time and effort you put into it and it would have been of comfort had I seen it before.

I just wanted to post that I had a second tilt test yesterday (private, not NHS). Too tired to say much other than I finally have a confirmed diagnosis of PoTS.

My HR was 93 supine, 150 after tilting, and it then remained around 140 for the rest of the test.

That's all for now - exhausted!

Big thanks to everyone who helped and advised.

[Greyhound]

Don't know why the text went larger halfway through my post lol

[Pistol]

Hi greyhound - I too had to deal with cardiologists that did not understand my findings ( I have hyper-POTS ). I had 2 TTT, one showed NCS, the second was interptreted as normal by cardio but when I finally got in with POTS specialist he said they both were clearly positive for POTS. But he also says that - especially with hyperPOTS ) the TTS is not the gold standard. The BP and HR you showed are very close to how mine were during both of my TTS, except I passed out during the first one. But you don't have to pass out to have POTS, some people only display pre-syncope (feeling like passing out). I went through 5 cardios - only the POTS specialist was able to help. Plus  - my sister lives in Germany and also has POTS. She could not get answers there at all so she came here ( USA ) to see my specialist and he diagnosed her right away with hyperPOTS. From other posts on this Forum I read that there are good specialists in UK - check on the physicians list on this site, they have some listed. Good Luck!!!