martiz Posted February 22, 2012 Report Share Posted February 22, 2012 Hi everyone,I'm new here and thought I would introduce myself. I have been given a diagnosis of POTS but no other information regarding type or cause. I have had ME/CFIDS and Fibro for 12 years and while POTS was probably part of that, it was secondary. As I get older, the POTS is becoming my biggest issue.I have seen an electrophysiologist and had some autonomic testing done.I have seen a good endocrinologist and had the basic tests run (TSH, Free T3, Free T4, Vit D, etc). I had a stim test but it was done incorrectly. I have not had renin/aldosterone.My appt with the endo is on Thursday and my appt with Dr. Levine is mid-March. Would anyone be willing to share a list of tests that I should push for to be ready for my appt in March with Dr. Levine. Would using the list that lemons2lemonade shared that Dr. Goodwin conducted be a good place to start (as a wish list - I know I won't get the whole list as I am not going to a Mayo doc or even an autonomic center).Moderator: I hope it's okay that I posted this link here. Trying to make it easier for people to find the post for reference.http://forums.dinet.org/index.php?/topic/19436-initial-tests-ordered-for-me-by-dr-goodman/I have searched the forum and googled this and I'm a little overwhelmed. Many thanks for any help offered!Marti Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 If I could request specific tests of any kind I would go for:Angiotensin II serum levelsAssymetric dimethylarginineMIBG reuptake scan (to measure NE reuptake in the cardiac system)autoantibody titers to beta 1, 2, alpha 1, 2, musc receptorsBut i doubt they would do any except perhaps the top one. Ive had the third one done actually. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 22, 2012 Report Share Posted February 22, 2012 At Cleveland the cardio ran a blood volume study and a check of red cell mass. At Mayo and Cleveland they also did the autonomic reflex screening tests including the valsalva, heart rate variability with controlled breathing, Qsart, TTTs, supine and standing catecholamine tests. With those tests they found (in me) low blood volume, low red cell mass, autonomic neuropathy and high standing norepinephrine (hyper POTS component). Based on those findings, they put me on the current med regimen I'm on. Quote Link to comment Share on other sites More sharing options...
martiz Posted February 22, 2012 Author Report Share Posted February 22, 2012 Thank you both for the responses. I have printed everything in list form. I am prepared to only get the basics.Thanks again,Marti Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 23, 2012 Report Share Posted February 23, 2012 martiz,Here is an old thead where a bunch of us listed the tests we've had. Hope it helps.http://forums.dinet.org/index.php?/topic/18617-doctors-and-tests-a-list-of-tests/page__st__15 Quote Link to comment Share on other sites More sharing options...
martiz Posted February 24, 2012 Author Report Share Posted February 24, 2012 Hi KatieBugThanks! That is just what I needed! I searched for tests and testing but didn't see this one!I had extensive endocrine testing today to get a baseline - having to start over with my endo as I had not seen her in a couple of years.Thanks againMarti Quote Link to comment Share on other sites More sharing options...
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