valliali Posted September 15, 2008 Report Share Posted September 15, 2008 hi all!i am new to posting on this forum. i have been following it for awhile, but never posted:) now i need some help!i am a 24 year old female, diagnosed with POTS, though it is questionable what is going on. trying to figure it out!i think the key to my situation is held in one of my lab results from a 24 hour urine collection, which showed that i have very low normetanephrine levels.from what i understand, normetanephrine is the metabolite of norepinephrine. when NE is produced, much of it is metabolized right away. i am not metabolizing it, or so that's what i think from the lab test, which could explain many of my symptoms, ie tachycardia, panic, blood pressure surges, etc.i am now trying to find out what low normetanephrine levels indicate and how they are caused.i am learning about an enzyme, COMT, that is responsible for metabolizing it, but am in the infant stages of research and have a hard time understanding the science at this level (i am a liberal arts background!)so, i am wondering if anyone else on this forum has this issue and knows why? i am feeling like the only person in the world with these results and am now left wondering if i even have a dysautonomia at all, though that is my official diagnosis!thank you all for reading and any insight. i am looking forward to being more active on the forum!!! Quote Link to comment Share on other sites More sharing options...
valliali Posted September 15, 2008 Author Report Share Posted September 15, 2008 please forgive me for bumping this thread up, but i have posted this topic on so many forums, expecting at least some people to respond with a "oh yea, got that too!" but i have heard NOTHING. i feel like a freak of nature and completely alone with this test result. i have poured myself over research for an explanation, and feel even more lost and confused than before. this whole thing has me questioning my dysautonomia diagnosis because surely someone else with dysautonomia would have low normetanephrine levels too, right? i'm just desparate for some answers, so, i'm going to bump this along. thank you all for your patience!!may i ask, i assume many of us had 24 hour urine catecholamine tests, did everyone also get their metanephrines tested with that? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 16, 2008 Report Share Posted September 16, 2008 Please try to refrain from bumping. You only posted yesterday and many who visit here are too sick to post on an every-day basis. Also, you have to keep in mind that our group of disorders isn't that common, and many of us have dysautonomia from different possible causes, which changes what our sets of symptoms might be.Members here will always respond if it's something familiar to them--if someone here recognizes what you're asking about, or has it too, you can be certain they'll chime in.Hang in there--I know it can be frustrating to wait. In the mean time, I've added a subtitle to your thread's title to give members a better idea of what your discussing here. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 16, 2008 Report Share Posted September 16, 2008 Quick question... were you taking any antifungal or antibiotic medications at the time you had the test done. I looked up articles and resources online and one mentioned that meds containing a specific compound found in some of these drugs can reduce normetanephrine levels.Also, urine collection isn't as accurate at blood work done for catecholamines. On a good note, you don't likely have pheochromocytoma, which results in an excessive output of of catecholamines.Nina Quote Link to comment Share on other sites More sharing options...
flop Posted September 16, 2008 Report Share Posted September 16, 2008 I have my 24hr urinary sodium measured now and then but I have never had urinary catacholamines measured. In the UK we don't have the same access to medical records (you can request a copy but it is complex and you have to pay) so we often don't get our actual results. Sorry can't help directly but if I find anything useful I'll let you know.Flop Quote Link to comment Share on other sites More sharing options...
valliali Posted September 16, 2008 Author Report Share Posted September 16, 2008 Thank you very much.I was not on any antibiotics at the time, but that is interesting that they may reduce normetanephrine levels. My levels are MUCH lower than the lowest normal value in the range, so I'm pretty sure something is going on.That is so crazy that you have to pay for copies of medical records in the UK!! It seems like something that everyone is entitled to, but I'm sure that they have their reasons! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted September 18, 2008 Report Share Posted September 18, 2008 My urine chatecholamine tests were fine.My blood chatecholamine test were abnormal.Norepinepherine was 4times the normal when standing after several minutes.I can't address your question more because I haven't had the experience you have had.Have you tried asking someone who specializes in this area? Sometimes I will get on the phone and try to find a doctor or professor who can teach me what is going on.best regards,tearose Quote Link to comment Share on other sites More sharing options...
yogini Posted September 18, 2008 Report Share Posted September 18, 2008 I've actually never heard of normetanephrine. You may want to search through old posts, but I don't think it comes up too often. That may be why you didn't recieve a response... Quote Link to comment Share on other sites More sharing options...
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