October 19, 2014 at 4:00 pm #738BamboozlemParticipant
I have EDS Hypermobile (diagnosed last year) and POTs (diagnosed this Summer). GP mostly knows only what I tell him about POTs and EDS (but he does listen).
First question: understanding plasma norepinephrine levels.
Blood levels were taken in the supine position, and after 5 and 10 minutes of orthostatic stress.
Results from my lab chemistry test:
Norepinephrine 5.8 – flagged as high
Phosphate 3.4 – flagged as low
Just curious about Norepinephrine as 5.8
I’ve been looking online, and see 80-520 pg/mL is the normal range for plasma norepinephrine, so I’m not sure what 5.8 means, or what the range is?
Second question: is there any significance in how high your heart rate jumps?
My resting heart rate in supine position was 53 beats per minute.
During tilt, it rose to 117 beats per minute, and I was tilted down after 15 minutes.
It jumped 64 beats and I was diagnosed with “mild” POTs, but the thing is, while I recognize I am high functioning, I don’t feel that it’s “mild”.
I guess my question is – what does it matter, in terms of symptoms, of how high your heart jumps? i.e.. the difference between jumping over 30 vs. over 40 vs. over 50, etc.?
Any info greatly appreciated.October 23, 2014 at 12:56 pm #5070BarbaraParticipant
I wouldn’t ponder over getting the label of Mild POTS because most of us fluctuate on a daily, if not hour to hour, basis. If you just so happened to be tested on a good day, it’s hardly reflective of the whole picture.
Regarding your heartrate increase of 64, I would consider that quite a substantial leap, after all, it is a measure of the extra effort on the heart, in order to deliver adequate oxygen to your brain!
I would guess that your norepinephrine measurement would be 580 on their scale.
(UK)October 24, 2014 at 6:07 pm #5077BarbaraParticipant
I’m also interested in your low phosphate result, are you lacking in energy by any chance ?
(UK)November 12, 2014 at 11:55 pm #5107BamboozlemParticipant
Yes! I am frequently lacking in energy.
I think the testing was a fairly “typical” day. I was surprised a few times by the way the nurses reacted over the course of the test. Several times they brought up the fact that they were surprised I was coping as well I was. During the tilt phase, I did experience the expected anxiety and chest tightness and a couple soundless tears escaped.
Nonetheless, I thought, but did not say, “Are you kidding me, one tilt is nothing, try vacuuming a house”. Or “try holding down a job”. Or try just about anything where you don’t know whether before and after you will have time to rest and recuperate. Whatever is going on, it is cumulative.
At the end of all the testing, the nurse told me she could tell I had been coping with this for many years, and I was so grateful for that.
How long did you live with POTs before you knew what it was?
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