Brwneyedchica Posted July 23, 2004 Report Share Posted July 23, 2004 My Cardiologist called and told me that the results of my 24hr urine were indicative of my having extremely high levels of plasma metanephrine. He is supposed to consult with an endocrinologist and get back to me. In the meantime he wants me to repeat the 24hr urine.Is anyone familiar with the correlation of this level and POTS? Is this something usual or out of the norm? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 23, 2004 Report Share Posted July 23, 2004 (edited) the only thing I could find on elevated plasma metanephrine has to do with a disorder called "pheochromocytoma". The doctor I used to see at NIH (David Goldstein) has done a great deal of work in this area. He is the 2nd author listed in the article below.http://www.ncbi.nlm.nih.gov/entrez/query.f...1&dopt=Abstractand here are other links:http://www.ncbi.nlm.nih.gov/entrez/query.f...rom_uid=7778821lastly, here's the NIH's info page on Pheo:http://www.cancer.gov/cancer_information/c...eochromocytoma/Be sure to read the links for patients--pheo is not always cancer, so please don't panic when reading about the disorder. This is simply for info purposes only--please do talk to you doctor and the endocrinologist about what your particular test results mean for YOU.Nina Edited July 23, 2004 by MightyMouse Quote Link to comment Share on other sites More sharing options...
calypso Posted July 23, 2004 Report Share Posted July 23, 2004 I remember reading in a previous post that there's a pseudopheochromocytoma-type disorder being researched that also involved high catecholamine levels/high plasma metanephrine levels. If you look back you may be able to find it -- I think it was a couple weeks ago. I am not sure if "extremely high" is possible with this disorder or not. I do know that pheochromocytoma is pretty rare -- 1 in a 100,000. So that's not a very good chance of having it. Also, people who have chronic anxiety have high metanephrine levels, I have read, and POTS patients have high catecholamine output (product of adrenal glands). Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 23, 2004 Report Share Posted July 23, 2004 Yes, I'm aware of the high catecholemines w/ POTS, in fact, I had a huge epinephrine reading when at NIH...and also with my local bp doc. However, the metaepinephrine issue certainly warrants a visit to the endocrinologist.Nina Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted July 23, 2004 Report Share Posted July 23, 2004 Hi, Brwneyedchica. Just wanted to clarify something from your post and perhaps offer some information concerning your question. You write: "the results of my 24hr urine were indicative of my having extremely high levels of plasma metanephrine." I'm a little confused as to whether you had an actual blood test done, or was your cardiologist inferring from high 24-hour urine metanepherines that you must also have high plasma levels? The "plasma" refers to a blood draw, and the only way to determine your PLASMA metanepherine levels is to have a blood test. As other posters have indicated, high metanepherine levels (in either blood or urnie) CAN be indicative of a RARE neuroendocrine tumor called pheochromocytoma. However, there are other things that can cause elevated levels (certain drugs, caffiene, anxiety states, intense exercise, etc.) That said, if you want the most accurate test for ruling out pheochromocytoma, ask your doctor to order the plasma FREE metanepherine test. This test is relatively new - developed by NIH - and is the most accurate test for ruling out pheo. Check out: http://www.vhl.org/newsletter/vhl2002/02bipheo.htm. The test is now available through commercial labs, but the blood sample needs to be sent to the Mayo Clinic for processing. If you need any more details concerning the test, I can provide them. As Calypso noted, the NIH is presently conducting a trial in something they call "pseudopheochromocytoma" - for folks that exhibit all the classic symptoms of pheo (including episodes of moderate to severe hypertension, anxiety, tachycardia, sweating, anxiety, etc.), but who do not have a tumor. (The NIH uses the plasma free metanepherine test noted above as the "gold standard" for ruling out pheo). I went through a phase a few years ago where I was having rather severe hyperadrengic symptoms and I was worked up for pheo several times. Interestingly, my urine and blood tests were always well within the normal range for biproducts of adrenaline. So, apparently, I'm hypersensitive to normal amounts of adrenaline. I think this is the case with many folks who have hyperadrengic variants of dysautonomia. Thankfully, my symptoms have diminished greatly, but I'm still going through the pseudopheo protocol at NIH. I have no official diagnosis, though I know I have some sort of episodic autonomic dysfuction, as my heart rate and BP are extremely liable. And, although I'm in outstanding physical shape (marathon runner), my heart rate will sometimes have a very hair-trigger response to exercise. Anyway, sorry for rambling, but I always like to put my crash course in pheos to good use to help others when they find themselves going down this path. Chances are, there's another explanation for your high levels. But it's definitely worth ruling out definitively with a plasma free metanepherine test. Good luck and keep us posted. Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted July 23, 2004 Report Share Posted July 23, 2004 Another document to check out re: pheo testing and the plasma free metanepherine test. I linked this under a thread a few weeks ago, but it's long since been bumped off page 1! http://www.ibl-hamburg.com/catecholamine/l...enders-2002.pdfAnn, if you're out there, I'm wondering how your own pheo testing is going. Hope you've been able to get some answers.Best, RunnerGirl Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 23, 2004 Report Share Posted July 23, 2004 RunnerGirl, thanks for all of your additions and links Nina Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted July 23, 2004 Report Share Posted July 23, 2004 My pleasure, Nina. Looks like several of us here have had the pheo work-up. My endo is a former NIH researcher, where she specialized in pheo, before going into private practice in early 2003. (I suspect she now sees more thyroid disease and diabetes than pheo!) But pheo is definitely something to rule out when one exhibits hyperadrenergic symptoms - particularly because in some/most cases it can be completely cured by removing the tumor. This is really what they thought I had for a period of time when my symptoms were at their worst. But my tests were always negative - even right after an episode where my BP was quite elevated. Mayo then gave me the atypical anxiety disorder diagnosis after ruling out several other things. I still don't know what I have/had, but I'm just grateful that my symptoms are better right now!Best to you and the others on the boards today - and have a great weekend! Quote Link to comment Share on other sites More sharing options...
Brwneyedchica Posted July 23, 2004 Author Report Share Posted July 23, 2004 RunnergirlI did have a blood workup in addition to the 24hr urine. I'm still a little confused about all of this. But prior to my first post I had read a little about pheochromocytoma. One web site listed symptoms including nausea which was interesting to me because i've been nauseated for quite some time now in the mornings and when I eat. I'll mention the plasma FREE metanepherine test when I next speak with my doc. In my mind this is most likely nothing besides some other strange symptom of POTS in my body.But it's always nice to rule another thing out. Thanks for all the info, and i'll keep you posted! Quote Link to comment Share on other sites More sharing options...
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