POTLUCK Posted March 21, 2012 Report Share Posted March 21, 2012 Could not sleep ( not unusual ) - lab faxed my copyCatecholamines Fraction:Supine Plasma:Epinephrine: 121 H reference <50pg/mLNorepinephrine see note ref. 112-658( Results are above the Clinical Reportable Range for this analyte which is 8000pg/ml)Dopamine see note <10 pg/mL( Results are below reportable range for this anylyte which is 10 pg/mLCatecholamines Total see note ref. 123-671 pg/mL( Results are above the clinical Reportable Range for this analyte which is 8121 pg/mL)_______________________________________________________________________Catecholamines, Fraction,Upright PlasmaEpinephrine 270H ref. < 95 pg/mLNorepinephrine see note ref 217-1109( Results are above the Clinical Reportable Range for this analyte which is 8000 pg/mL)Dopamine see note <20pg/mL( Results are below reportable range for this analyte, which is 10pg/mL )Catecholamines, Total see note 242-1125 pg/mL( Results are above the Clinical Reportable Range for this analyte, which is 8270 pg/mL)_______________________________________________________________________I guess the note is what is in the brackets ( ), as there is not other note.Bold print is mine to note the DA was below normal, but I do not really understand how below 10 can be below reportable but normal is below 10 on the supine.Do I win a cupie doll? What might this mean?I am on B-blocker ( 140 a day ), seems that might raise it, But above 8000. Has ANYONE had this? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 21, 2012 Report Share Posted March 21, 2012 Do beta blockers really raise catecholamines? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 21, 2012 Report Share Posted March 21, 2012 Have they talked to you about a pheo, yet? I think they have to do imaging to find one. My dopamine was said the same thing, I'm not sure that it means anything. Your norepi is off the charts though mine was went from 400 to 1300 so above 8000 is not normal and needs to be investigated further. Google symptoms of pheo's and see if any of the symptoms fit you.Good news is if you have one of these and they can find it, they take it out and it stops the abnormal functioning. Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Report Share Posted March 21, 2012 Yeah, Mayo says anything above 600 on standing for noriepi (NE) puts you into the HyperPOTS catagory. If it's way above that they do need to look for pheo. No wonder a lion lives in your house - I'm so sorry. You have to be a nervous, jumpy mess. Low dopamine - not sure about - usually there is high dopamine when there is high noriepi levels because the noriepi is the next in line conversion from dopamine. Low dopamine levels can be indicated in other types of illnesses as I'm sure you're aware of. It is our feel good hormone and if it's too low - we don't feel good or have any drive to do things. But, maybe they are not concerned with how low it is - just that it isn't too high - with the way the results are - they want it measure below a certain level. If I'm reading it right. So, it may not be as bad as we think for the dopamine. They don't have a true level mentioned - so, it may be okay.But, that high NE levels needs further checking - look for pheo. for sure.Feel better - get back to your doc and let them do some more digging. You're on your way to some answers. I knew that if there were significant results with you being on such high propranlol you'd get some answers. It's a step in the right direction.Breathe, take a step back and re-evaluate. It's just another piece of your puzzle.Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 21, 2012 Author Report Share Posted March 21, 2012 Thank you for the replies. It did make me wonder about Pheo, and I have contacted the Endo who ordered it. I did not think Pheo would cause increase HR standing as it is a tumor not connected to feedback, just doing it's own thing if I understand.Has Anyone had a NE this high on the site? What are typical Hyperadrenergic results like?Does anyone take Inderal/Propranolol at a dose of 140 per day or higher?Also has anyone had a pheochromocytoma diagnosed? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 21, 2012 Report Share Posted March 21, 2012 I asked about the propranolol because you said it could cause an elevation. I don't know if in all people propranolol would raise cats? Usually a pheo is chemically diagnosed when the epi or norepi (plasma or urine) is 3-4x above the upper limit. You are WELL above that limit, so I would think the next step your endo would do is imaging to see if it is on your adrenal or sometimes elsewhere.BTW, pheos can be "set" off by various stimuli, such as changing position. If it is a pheo, usually they start you on an alpha blocker, something about betas cause unopposed adrenergic something that can cause higher b/p. When the alpha kicks in, then they start on betas.I have two small growths on my adrenals for the last few years, so I have been monitored for pheos. My results are all negative so far. Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Report Share Posted March 21, 2012 I can't recall anyone being on that high level of propranalol. If you look under some of the research on this site about causes of POTS, pheo can be one of the causes. So, it could be - if that's it and you get it taken care of - you could totally be without POTS. Let's hope so! I also don't remember anyone of recent that has been positive for a pheo - but, some of the ones that have been on longer than me - might can remember someone. But, since it's listed as a possible indication for POTS - I'm guessing it has been a definite cause/reason.Issie Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 22, 2012 Report Share Posted March 22, 2012 It certainly explains why its not unusual for you not to be able to sleep...high Epi/NE and low Dopamine. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 22, 2012 Report Share Posted March 22, 2012 Fairly typical hyperadrenergic results other than the dopamine - which is usually elevated rather than low. Perhaps check out the dopamine hydroxase deficiency or what ever its called. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 22, 2012 Report Share Posted March 22, 2012 POTLUCK - my standing norepi was elevated 1001 and dopamine was a little high. Obviously doesn't compare with your numbers, but my Dr. at the time thought it was significant and contacted Vanderbilt. They then looked for a genetic disorder (NET deficiency I think). I was negative. I'd get in touch with them if I were you. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 22, 2012 Report Share Posted March 22, 2012 I think the key here is that the norepinephrine level was elevated above 8000 in the supine position. That would not be related to the orthostasis in POTS (unless they didn't have you rest for an adequate time before doing the draw). People with pheos will have norepi. beginning at 1800 or so, so 8000 is significant. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 22, 2012 Report Share Posted March 22, 2012 Ohhh, that was supine?? Sorry, missed that -disregard my comment. Quote Link to comment Share on other sites More sharing options...
issie Posted March 22, 2012 Report Share Posted March 22, 2012 For hyperPOTS they usually consider that there is a significant rise from lying to upright. Since the levels lying were so high too - was there a drastic rise from lying to standing or were they the same? To me, it more indicates pheo. (But, what do I know?) Something to have checked out. Have you learned any more yet?Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 23, 2012 Author Report Share Posted March 23, 2012 Hi,Someone PM'd to ask if they were checking on Pheochromocytoma, and a few people above are mentioning ( thank you all for the concern ) and yes my Endocrinologist who ordered this test got me in right away and is sending me for a CT of the abdomen and of the chest and an MIBG scan. He was very nice and the help was appreciated but did not have much experience with this to advise me as they are rare. He said 2 of them he found with 24 hour urine screens and the 3rd he was a resident and the NE was over 2000. He has also had 3 patients with POTS, not sure if that counts me, but he mentioned someone else with Hyperadrenergic POTS. I do not think he was the main POTS doctor so he did not know the NE. I asked if he thought I could have pheo, but all he could offer is "it's possible." I do not think my Cardio who is the main POTS doctor does fractionated catecholamines, and he will not have seen any pheos is my guess.I am hoping it is a pheo, as I would like to have them cut out my POTS and be rid of it. Put it in a jar and say that was when I had POTS. I do realize it is a serious tumor and operation and there is even potential for loss of the adrenal gland.Sue, I do not know about the Propranolol, but I would think the body would increase NE ( and potentially Epi ) in response to blocking the B1 and B2 receptors, the endo thought this was certainly possible also. I do not think it would normally increase it to anywhere near 8000+ but maybe in POTS. It seems like anything can happen in POTS. Thank you all,Potluck Quote Link to comment Share on other sites More sharing options...
issie Posted March 23, 2012 Report Share Posted March 23, 2012 Here's hoping it can be cut out and a bad memory in your life. Answers hopefully not long away for you. Hey, don't forget all of us - when you're cured. Maybe, you'll have the energy then to be a representative for us all. I, for one, am hoping for a complete recovery for you.Issie Quote Link to comment Share on other sites More sharing options...
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