friday Posted September 30, 2004 Report Share Posted September 30, 2004 I have read that one of the things they look for in POTS patients is an abnormality in catecholamines. Has anyone found out if they have this? And does anyone know what the abnormalities would be?I had a test done months ago. I remember everything being on the low side or normal..very low. I had mentioned this to the docs but as long as it is within normal range they say it's okay. I also read that restless leg syndrome is associated with low dopamine levels. Since I have restless leg syndrome, and my dopamine levels were so low, even though they were still low normal, I thought this may be a problem for me. Anyway, I was wondering if anyone knew about catecholamines. Firday Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted September 30, 2004 Report Share Posted September 30, 2004 Mine were in the normal range, maybe high normal. .I guess as long as they're normal then no one worries too much.There are some days where I wake up and feel like my body is in that fight or flight mode. I'll feel like that all day and often wonder how my catecholamines would be if I had the test when I felt like that. If it would make a difference in the results?GayleP Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 30, 2004 Report Share Posted September 30, 2004 Mine are the highest ever seen.Ernie Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted September 30, 2004 Report Share Posted September 30, 2004 One other thing. I would imagine it would be important that you have a Dr who knows about catecholamines and how it relates to POTS and other dysautonomia.My PCP did the test on me but she had no clue what the results meant. I had the test repeated at Mayo.GayleP Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted September 30, 2004 Report Share Posted September 30, 2004 This came straight from Vanderbilt's site:What is Orthostatic Intolerance?When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt?s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing, and a standing plasma norepinephrine level of at least 600 pg/ml. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used.I have had high norepi levels on two occasions....once when I was really sick and they were sky high and then years later when I was feeling a lot better...they were moderately high. Norepinephrine is a natural vasoconstrictor....your body pumps it out to try to get your veins to constrict and bring more blood to the upper body. It makes sense that those of us experiencing pooling blood may have high norepi levels. We have a bit on the site about increased dopamine levels possibly contributing to orthostatic intolerance, but I haven't come across anything regarding low dopamine levels.I hope this helps!Michelle Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 30, 2004 Report Share Posted September 30, 2004 mine are all low too, so it must mean something but Lord only knows what. my pcp says i have oi and my nuerocardiogenic function *****, but doesn't know what to think of low results as opposed to high. someday we will know. morgan Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 30, 2004 Report Share Posted September 30, 2004 For what it's worth, mine have always been normal.I do need to find out more about restless leg though--I have been having it a lot recently, even interrupting sleep.Katherine Quote Link to comment Share on other sites More sharing options...
calypso Posted September 30, 2004 Report Share Posted September 30, 2004 I can't get my doctor to test mine. He thinks the levels mean nothing unless they are sky-high and would indicate pheochromocytoma, and the fact that all of my problems with POTS came on after my pregnancy -- and the fact that I had a pregnancy -- mean I could not have pheo. (He said if a woman gets pregnant with pheo, BP goes SKY high -- like 200/130 or something crazy -- because the baby presses on the adrenal tumor.)I really would, however, like to have the levels checked at least to see what my body is doing. I hate HMOs.Amy Quote Link to comment Share on other sites More sharing options...
yogini Posted September 30, 2004 Report Share Posted September 30, 2004 Below is the language from potsplace.com, under "Detection". Calypso, it's just a blood or urine test, which shouldn't be too expensive. I have had two 24hr urine tests (which came back normal), even though I have an HMO, so I hope you are able to convince your Dr.-Rita-----------------------------------------------------A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some POTS patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in POTS patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine. The blood test is quite simple. The patient will have to lie quietly for a period of time (usually around 30 minutes) before their blood is drawn. Some doctors believe a more accurate reading is gained if an intravenous line is placed in the patient's arm before the resting period. This is because the fear and pain associated with needles may induce a rise in catecholamines that could obscure results. Other doctors will use the 24-hour urine catch method to determine catecholamine levels. The patient is given a container to collect their total urine volume over a 24-hour period. The container is then returned to the physician and catecholamine levels are assayed. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 30, 2004 Report Share Posted September 30, 2004 Mine were not in the normal range. I have a large norepinephrine spillover initially, and then lower than normal after a period of elevation. Mine have been done twice, once through my hypertension/renal doc and once at NIH.Nina Quote Link to comment Share on other sites More sharing options...
eralna Posted September 30, 2004 Report Share Posted September 30, 2004 I am very interested in this post. I just saw my neuro today and asked if there was some testing that we could do re: catecholamine levels. She said she wasn't real knowledgeable in this area but is willing to pursue it if I wanted. She asked me to forward any info on to her. I remember in the past seeing some good articles re: testing, etc. but have a new computer and don't have the links any more. Does anyone know of any good doctor type articles that I can send to her?Also, it seems that somewhere I read that some of these tests are done in a very controlled setting like a hospital and that maintaining quiet was very important. I am curious what tests are out there besides the 24 hr urine. I'm also curious what symptoms do you have that might relate specifically to catecholamine levels? Is beyond BP and heartrate problems?thanks, nancy Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 30, 2004 Report Share Posted September 30, 2004 evelated norepinephrine includes other associated symptoms, such as skin flushing, sweating, rapid heart rate, elevated BP and anxiety/heightened attention.Nina Quote Link to comment Share on other sites More sharing options...
eralna Posted September 30, 2004 Report Share Posted September 30, 2004 Nina, You say that you had a "large spillover". How do you know that? What test tells you this? Is it bloodwork or urine testing? I see that you had tests done at NIH. How extensive is their testing and do the results mean anything as far as usefulness?nancy Quote Link to comment Share on other sites More sharing options...
friday Posted October 1, 2004 Author Report Share Posted October 1, 2004 When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI I'm confused, if this is saying, if a patient has symptoms but thier blood pressure doesn't drop when they stand, they have OI?I thought if BP does drops when they stand they have OI.I've got major brain fog tonight so excuse me if i'm easily confused. Also does anyone know what happens after you stand for a while. Say 10 mins. I mean does your blood pressure go low and then after a while go up to normal. Does it stay the same? I'm wondering what it's suppose to do for POTS patients. Most times my BP drops right upon standing. Then after a minute it goes back up. then it just fluctuates back and forth. I was curious about why that is. Also My heart rate rises. Most times it immeadiately goes up 20bpm if not more then as I stand longer it rises. By 10 minutes if i can stand still (because the symptoms just get worse) it's usually over 30 bpm from when I started. a standing plasma norepinephrine level of at least 600 pg/ml. So does that mean it makes a difference if you're standing and sitting? OR does standing plasma mean something else?I think I'd like to get the catcheclomines done again since it's been a while since I had it done and so much has changed since then. I'm still not sure of the connection, but I'd like to find out more. I have heard that some people with restless leg syndrome get relief from some form of dopamine related drug they use for Parkinson's, sorry don't know the name. Brain fog is bad tonight. Hope I'm making sence.LOLFriday Quote Link to comment Share on other sites More sharing options...
avais1 Posted October 3, 2004 Report Share Posted October 3, 2004 Hi Friday! I am a catecholamine mess. Yes, it does make a difference when you sit, lay down, and when you stand. Mine were tested at Mayo. When I lay down, they are normal, they are 297 (norepinepherine rate for normal ranges from 70- to 750). However, when I stood up, they jumped to 800, which is well past the highest normal reading. Mine was done with a blood test, with an indwelling line, so that I would be unaware when they were pulling blood out of me (to compensate for any anxiety factor). I hope this helps! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 3, 2004 Report Share Posted October 3, 2004 Nancy, my levels were tested via blood work. Additionally, one set of tests was done at NIH--I had a heart catheter that actually drew the blood directly out of my heart (coronary sinus). Spillover is just another work for "excess". Translated into laymans language: my norepinephrine was extremely high initially. I seemed to run out at some point and then it went really low later.Nina Quote Link to comment Share on other sites More sharing options...
Nicole's Mom Posted October 3, 2004 Report Share Posted October 3, 2004 When Nicole was first sick w/o a diagnosis and in the hospital for 14 days her norepinephrine levels were taken twice. In each case the reference range was 0-600 and her first result was 1066. The second result was 1080. Also her dopamine was tested. The reference range was 0-135 and her result was 873. I never really understood the meaning of these tests. I think she may have been tested for pheo and I have a recollection that it was negative. An MRI was negative for tumors. Otherwise - nobody (of the 40+ docs she has seen over 8 years)-ever seemed to make a fuss about the result of these tests. I don't have any indication in our records that she was ever tested again. But maybe Nicole has more paperwork in her files. Now that you are discussing it my interest is very high. What is pheo, by the way?Beverly Quote Link to comment Share on other sites More sharing options...
Nicole's Mom Posted October 3, 2004 Report Share Posted October 3, 2004 Yikes!! A big oops. I just read my post. I am just out of bed and my still sleepy fingers hit the wrong numerical key. Nicole has seen 20+ docs over 8 years - not 40+. (probably just feels like 40++) Sorry about that. Everything else is accurate though.Beverly Quote Link to comment Share on other sites More sharing options...
friday Posted October 3, 2004 Author Report Share Posted October 3, 2004 avais,thanks for the info.The norepinepherine is another name for adrenaline isn't it?What did the doc do about this high level if anything? FridayI am a catecholamine mess. Yes, it does make a difference when you sit, lay down, and when you stand. Mine were tested at Mayo. When I lay down, they are normal, they are 297 (norepinepherine rate for normal ranges from 70- to 750). However, when I stood up, they jumped to 800, which is well past the highest normal reading. Mine was done with a blood test, with an indwelling line, so that I would be unaware when they were pulling blood out of me (to compensate for any anxiety factor). I hope this helps! Quote Link to comment Share on other sites More sharing options...
Guest veryblue Posted October 3, 2004 Report Share Posted October 3, 2004 Mine are completely normal...just like every other test I have! Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted October 3, 2004 Report Share Posted October 3, 2004 Norepinephrine is not the same as adrenaline (epinephrine). Here is a link regarding norepinephrine:http://en.wikipedia.org/wiki/NorepinephrineMichelle Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 3, 2004 Report Share Posted October 3, 2004 Michelle is quite correct, norepinphrine is different from adrenaline (which is also known as epniphrine).Nina Quote Link to comment Share on other sites More sharing options...
Herdswoman Posted October 4, 2004 Report Share Posted October 4, 2004 Nina, I am very interested in how this knowledge has affected your treatment. Was this part of your workup and diagnosis? Is NIH the National Institute of Health? I've never had catacholemines done and honestly, would there would be a difference in meds? rest? fluid intake? other treatment? If a person is already diagnosed and being treated would it matter what their catecholemines are? Why? ( Oh dear, I sound like one of those essay questions we had in high school ...define catecholemines and their role in POTS. Is this knowledge essential? Why or why not? Whatta science dork!)Seriously though, I am a big believer in treating the patient, not the numbers. As I have taught many students "THE FIRST RULE OF PATIENT MONITORING IS TO TREAT THE PATIENT, NOT THE MONITOR." If a person has a heart rate of 150 and no symptoms, that's fine. Make sure the MD knows and let it ride. If the patient has a heart rate of 120 and a BP that's in the toilet, sweating, clammy and pale, then you best be gettin' busy with that! Sometimes we get all wrapped up in test results and what this number or that number is.....and it really doesn't matter. What matters is how the patient feels and well symptoms are controlled. Quote Link to comment Share on other sites More sharing options...
friday Posted October 4, 2004 Author Report Share Posted October 4, 2004 Norepinephrine is not the same as adrenaline (epinephrine). Here is a link regarding norepinephrine:http://en.wikipedia.org/wiki/NorepinephrineMichelleOh that's right. I got it mixed up with epniphrine. Thanks for the link.Friday. Quote Link to comment Share on other sites More sharing options...
friday Posted October 4, 2004 Author Report Share Posted October 4, 2004 Norepinephrine; It is one of the 'stress hormones' and affects parts of the human brain where attention and impulsivity are controlled. This compound affects the fight-or-flight response, activating the sympathetic nervous system to directly increase heart rate, release energy from fat and increase muscle readiness.SO if your Norepinephrine level is way high, that would increase your heart rate? Would that be why POTS patients have a high heart rate? And if Norepinephrine was high, is there anything that can be done about it that might help lower the heart rate? Sorry if this is naive but I have to ask questions to learn. I just keep looking for clues. If I get an abnormal on anything, I want to find out if it contributes to what I'm feeling even in a small way. (Friday. 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.