POTLUCK Posted March 22, 2012 Report Share Posted March 22, 2012 I am wondering what these run. Do not know if this has come up before. ( Trying to set up a poll, not sure I can do this.) Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 22, 2012 Author Report Share Posted March 22, 2012 Well, I did manage to set up a poll. I am truly wondering if I am the only one who has over 8000 Norepinephrine levels. Hope people will answer even if the answer is you have not had it checked, just so I can get an idea. Thank you everyone. POTLUCK Quote Link to comment Share on other sites More sharing options...
issie Posted March 22, 2012 Report Share Posted March 22, 2012 POTLUCK,I've never heard of it that high before. What did your endo say today? I don't know how you're standing it - I'm bad with where mine is and I'm NO WHERE close to you. I feel really bad for you - there has to be some help.........like YESTERDAY!!!Hang in There! Know you're being thought of.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 22, 2012 Report Share Posted March 22, 2012 I cant answer this question because I thought it was 453 and when i asked my doctor he said 'no it wasnt that' but wouldnt tell me what it was LOL. During my tilt I had the 'highest MSNA firing rate' of any POTS patients tested. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 22, 2012 Report Share Posted March 22, 2012 NE levels like that? NET deficiency. Although low dopamine seems odd. Ask vanderbilt.valproic acid LOL??? Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 22, 2012 Author Report Share Posted March 22, 2012 Thank you for the kind wishes Issie & the thoughts on VPA Rama. I also appreciate people taking the time to vote who have not had it tested, in additon to those who have had it tested, as it really makes for a much more complete picture of where the population of people who are on Dinet are at. ( Other than my 8000+ in both ) it seems like everyone responding so far who was tested is below 600 Lying and above 600 standing.Again thanks, I am very interested to see where people are at. Quote Link to comment Share on other sites More sharing options...
martiz Posted March 22, 2012 Report Share Posted March 22, 2012 I voted but my test was done while sitting. 1131I also have the same dopamine results - not sure what that means.Marti Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 22, 2012 Author Report Share Posted March 22, 2012 Hi,Someone just added 600-2000 lying ( for a second one ) and 5000+ standing. I would love to know about it, if anyone wants to comment?Martiz,Thanks for input. I was told sitting could increase NE in POTS, as you are upright. I do not know if it increases as much as Standing. Quote Link to comment Share on other sites More sharing options...
martiz Posted March 22, 2012 Report Share Posted March 22, 2012 Hi,Someone just added 600-2000 lying ( for a second one ) and 5000+ standing. I would love to know about it, if anyone wants to comment?Martiz,Thanks for input. I was told sitting could increase NE in POTS, as you are upright. I do not know if it increases as much as Standing.Should I delete my vote since it was not lying? I don't want to skew your poll. If so, I would switch my vote. let me know. Or since it is sitting, not vote at all.Sorry!Marti Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 23, 2012 Author Report Share Posted March 23, 2012 Hi Martiz,I think someone else voted 600-2000 lying and someone else put 5000+ standing- that is what I was asking about. That is not good or bad, I am just interested in how high POTS can go. Did you have a standing test done also, and that was 5000 and up? If not someone voted it. I am interested, to know, if I might have a Pheochromocytoma, and wondering if numbers as high as this show up otherwise. No apology for voting is needed ( anyway about it ) , but thank you for voting, for clarifying, and for the thought. best, Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 25, 2012 Author Report Share Posted March 25, 2012 Thank you for the responses to the poll again, especially those who did not have there NE tested but took the time to vote. Endocrinology has ordered an MIBG scan and CT of the Abdomen and Chest for possible Pheochromocytoma or similar tumor. Radiology is not familiar with MIBG ( though they can do it ) but I am thinking of seeing if I can move the test to a big center, as my old primary doc tells me it is important if you may have this to get the scan done right. I faxed the results to my old primary and though he does not stay up to date on Pheochromocytoma info. ( he is older and going out of practice ) he called personally, and he thinks I have it.I am still wondering about the person on the poll that had 5000+ standing, other than my vote. Would love to hear.Hope everyone is as well as possible. I am trying. This Pheo thing has me stressed. More worried I don't have it. Maybe a warm bath, it's raining here in CA, USA. best, Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 25, 2012 Report Share Posted March 25, 2012 Oh good -glad you're getting the right testing done. Let us know what happens. Quote Link to comment Share on other sites More sharing options...
issie Posted March 25, 2012 Report Share Posted March 25, 2012 POTLUCK,So glad that you have a direction to pursue. I'm hoping you have found your answer and it's something that can be taken care of. Keep us posted on what you find out and how you're doing.Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 14, 2014 Author Report Share Posted October 14, 2014 Someone pulled this poll up from years back today. For anyone interested since I had over 8000NE thought I would mention I had scans done for Pheochromocytoma back then with mixed results +MIBG and negative CT. These scans were completed based on high NE. After scans metanephrine and normetanephrine were run and came back normal. Pheo expert said no pheo based on that but another radiologist pointed out that there was a 7mm (not CM) bump on adrenal gland that matched location of MIBG. I did not pursue this. I did have another metanephrine, and normetanephrine done about 4 months ago and they were normal also. Thus assuming the 8000 standing NE was a lab error. I never had another standing NE done. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 14, 2014 Report Share Posted October 14, 2014 Years ago when I was initially very sick and my famdoc was testing up the wazoo (for fatigue and postural hypotension that was continuing after my seizures were stabilized). He tested 24 hr urine, for pheochromocytoma. My results were the opposite-abnormally low NE and Epi. I was referred to an Endo, who eventually diagnosed me as Adrenal Insufficiency. That was years before my autonomic symptoms worsened into dysautonomia tho, so may not be relevant. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.