SeattleRain Posted February 13, 2013 Report Share Posted February 13, 2013 I followed up with my cardiologist yesterday and he awesomely agreed to do the tests I wanted.He/we suspect "Hyper" POTS because of my slight rise in BP. Has anyone else here had a standing/supine NE test, being suspected of having Hyper POTS, and have the test come back normal? Has anyone else here had a Total Blood Volume test? I'm really hoping the NE levels come back normal because I don't want a POTS diagnosis. I much rather this be something else that hasn't been caught yet in hopes of a real "fix" instead of just treatment. Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted February 13, 2013 Author Report Share Posted February 13, 2013 Also on the NE supine/standing - the Vandy research paper I read stated blood to be drawn 15 minutes supine, then 15 minutes standing. However, the nurse that scheduled the test must have read some other formal procedure for 30 minutes supine, then draw blood. I'm wondering if I should be adamant about the 15 minute time or let it go with 30 minutes. Any suggestions? Quote Link to comment Share on other sites More sharing options...
bustersacc11 Posted February 13, 2013 Report Share Posted February 13, 2013 I have had NE blood test done twice at vanderbilt. From my experience, vandy incorporated it with my AFTs. Make sure they start an IV! When you are standing you don't want them fishing for a vein and try to stick you for a blood draw. That can cause the adrenaline flood gates to open even more. About 15 minutes lying flat then they draw a couple vials of blood from your IV site. For me, when I was done with all the other AfT testing and i was at the last step which is their simple TTT they drew the last set of blood which would have been about 30 minutes. I don't know what others experience at vanderbilt was but this was just last year. I would go for 30 minutes upright. You are basically doing an orthostatic challenge test. Should give you the data you are looking for. Hope this helps. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 13, 2013 Report Share Posted February 13, 2013 I've done the total blood volume test. It wasnt hard just long and felt worse for a few days after because of all the blood they took. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 14, 2013 Report Share Posted February 14, 2013 At Mayo, when they did the catecholamines, they put in an IV, then had me lie in a dark quiet room for 30 minutes, came and drew blood thru the IV while supine. Then had me stand, theoretically for 10 minutes, at the edge of the bed and then drew it again thru the IV. I say theoretically because by 4 minutes I was having pre-syncope and had to sit on the bed for the remainder of the time and then they had a really hard time getting any blood out thru the IV because my vein had clamped down around it.At another facility they had me tested while I was on the TTT. They had me rest for 15 minutes but the nurses were chatting the whole time and it wasn't dark etc and drew the labs after 10 minutes upright on the TTT. Even though I had the same pre-syncope etc, the test came back "normal" while the one at Mayo was "abnormal". Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 14, 2013 Report Share Posted February 14, 2013 I've had the NE standing/supine done 3 times (two of the 3 were during my ttt's). They drew blood after 10 min standing.like chaos mentioned, you should have an iv line started, then they should keep you in a dark, quiet room for 1/2 h, then draw blood supine, have you stand for 10 min and draw blood again.My tests have always come back normal. My dr never suspected hyper POTS but wanted me to have the test done anyway as I had some weird spikes in bp that they weren't able to explain - turned out that my bp was acting up because of inappropriately high amounts of salt/water/florinef - it's not always POTS .Alex Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 14, 2013 Report Share Posted February 14, 2013 The first time I had the NE tested I just went to Quest Lab - they took blood laying, then standing after 15 minutes... the regular way, no IV. The Dr. (a POTS researcher) gave no special instructions like you guys described. The result was 1001 standing. I was tested again during a tilt test and my levels were normal. Since I didn't get the same result a second time, who knows what any of it means. I had the blood volume test and my results were normal. Quote Link to comment Share on other sites More sharing options...
misstraci Posted February 14, 2013 Report Share Posted February 14, 2013 awesome, glad you are getting the tests you want!! What and how is the blood volume test done? Quote Link to comment Share on other sites More sharing options...
roxie Posted February 14, 2013 Report Share Posted February 14, 2013 Here ya go, misstracihttp://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx Quote Link to comment Share on other sites More sharing options...
misstraci Posted February 15, 2013 Report Share Posted February 15, 2013 Thanks Bananas!! Quote Link to comment Share on other sites More sharing options...
corina Posted February 15, 2013 Report Share Posted February 15, 2013 Thanks bananas, that's really helpful! Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted February 16, 2013 Author Report Share Posted February 16, 2013 Thanks for the responses. I just got a call from my cardiologist's nurse tonight. She left a voicemail saying their nuclear lab has stopped doing the blood volume test. They said they just used their last "kit" that's used for doing the tests, and that the company that makes them isn't shipping them out anymore. He said it's nation-wise. @#$@! I hope I can find another place that will do the test. I need it! Quote Link to comment Share on other sites More sharing options...
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