Supine And Standing Epinephrine And Norepinephrine Levels Test - Has Anyone Had It?

[iheartcats]

I have a gut feeling I should get this as I've now had a cousin DX'd with POTS and my sister has symptoms. I have a lot of the 'symptoms' that fit the changes in these levels and I want to build a case for my doctor.

What is in involved in the testing - like how difficult? How long? Is it expensive?

Thanks so much!

[Sophia3]

It helps to confirm POTS if the norepi levels either double or triple I forget..had this done 9 years ago.

BUT IT's VERY IMPORTANT to have it done PROPERLY. I was taken to a QUIET hospital room, alone, no tv, no radio, no phone, I had her CLOSE the door. But I had to tell the nurse "NO I do not want tv on , no lights, no open drapes, no talking...no stimulation at all, ok?

Lie quietly 15-30 minutes. Have blood drawn.

Then stand up and have blood drawn again at 10 or 15 minutes . My phlebot was so good I NEVER felt the second stick (pain can affect test to small degree!) and she'd never drawn blood from standing pt! lol

just blood test and medicare covered it..just make sure you can lie QUIETLY before the first test

Sometimes there are meds to help or beta blockers..but I am too sensitive to those but DO sometimes take 10 mg propranalol as needed. NEVER would I do the 1 pill for 24 hours..too many side effects. Take as needed

[iheartcats]

Thank you. I have a call into my doctor about this so I hope she'll agree. I'd at least like to know!

I take Propranonal 3 times a day now (20mg). It seems to help quite a bit. I hate extended-release meds, in general. I just don't think they work for me!

[Sophia3]

I'm the same way about long lasting meds..if you have reaction feel like &^%^ for 24 hrs.

Just remember don't take bb or anything else for 24 hrs before this blood test..I forget what all meds can affect it but you want it to be as accurate as possible. You can find out what not to take. I would search for you but my eyes are really bothering me lately.

Good luck

[kayjay]

I had this as well.. just like Sophia. I think it was helpful to me as I clearly had Hyper pots. I can't imagine that it is too costly because no special equipment is involved.

[ddschool]

I had a tilt table (this is what you are describing) done at Duke - I found my test done there was more accurate than the one I had in Charlotte - the one on Charlotte, they just gave me Nitroglycerin to induce symptoms - At Duke, I had an Arterial Line, multiple lab draws, and he put me through multiple tasks/drugs to induce symptoms (hand in ice, counting backwards from 100 by 7, giving me IV Isuprel, etc.) - Through the Arterial Line, they could monitor my BP while lying and standing, but could also draw labwork at certain time intervals. This was how was I was finally confirmed w/ POTS.

[janiedelite]

Mayo did my supine and standing catecholamine testing like Sophia described also, except they put in an IV at the start so I wouldn't have to be poked when they drew the blood. I agree that having no stimuli of any type while lying down is essential!

[StacyRN]

I had the blood test done at Stanford, CA, about a month ago, just the way they said (lay quietly before supine blood draw, then wait a bit for upright blood draw). Mine was definitely hyperadrenergic POTS. The literature says patients with POTS usually have normal to slightly elevated supine norepinephrine levels, but the upright norepi levels are usually around 600 or more. My SUPINE norepi was 604 pg/ml, and my UPRIGHT was 1,231 pg/ml... definitely too much norepinephrine, and my symptoms support that. Jittery, can't sleep, can't relax, exhausted, nausea, tachycardia, etc. So all the meds I'm on are to block the norepi... I'm on propranolol, klonipin, and now have added clonidine which is supposed to be great for the hyperadrenergic type. We'll see...

Good luck to you!

Stacy RN

[Notgivinup]

Stacy, will you please let me know how the clonidine works for you.This is a drug I've been wanting to try, but for some reason the doctors keep stalling on giving it to me.

[StacyRN]

Stacy, will you please let me know how the clonidine works for you.This is a drug I've been wanting to try, but for some reason the doctors keep stalling on giving it to me.

Sure! I've only taken it for 2 days now, but I do feel more sluggish, dry mouth, slow... I don't know if it's the 2 days of clonidine or a coincidence, but I'll let you know more in a week. But I don't feel as sick! Tired... sick... hmmmm.... think I choose tired! Almost all the meds I take slow me down though, so maybe adding the clonidine tipped the scale. I also take klonipin (anti-anxiety), propranolol (beta blocker), everything I take is for blocking the sympathetic (fight or flight) response, so maybe that's why I'm slower. Let you know in a week or so! So far, I like it tho!

Stacy

[Notgivinup]

Stacy, will you please let me know how the clonidine works for you.This is a drug I've been wanting to try, but for some reason the doctors keep stalling on giving it to me.

Sure! I've only taken it for 2 days now, but I do feel more sluggish, dry mouth, slow... I don't know if it's the 2 days of clonidine or a coincidence, but I'll let you know more in a week. But I don't feel as sick! Tired... sick... hmmmm.... think I choose tired! Almost all the meds I take slow me down though, so maybe adding the clonidine tipped the scale. I also take klonipin (anti-anxiety), propranolol (beta blocker), everything I take is for blocking the sympathetic (fight or flight) response, so maybe that's why I'm slower. Let you know in a week or so! So far, I like it tho!

Stacy

Thanks Stacy. As I lie here in bed, yet another day, I'm contemplating what meds. to take. I've put myself back on a tiny does of metoprolol and midodrine.

b/p and h/r have been very high this morning and this afternoon. I just feel like crap. My standing nori was 987. Not as high as yours, but i still think I have the hyper POTS. I'm NOT understanding why they won't give me clonidine.

Oh well, please keep me informed on how it's working for you. Thanks.

[StacyRN]

You definitely have the hyperadrenergic POTS! That is a very high norepi level, and research shows clonidine is helpful for this... why won't they give it to you? What do they say about why they won't? I'm not sure midodrine is something you should be on, because it tends to aggravate the hyperadrenergic feeling from my experience. And propranolol is said to have a more calming effect than metoprolol, so my doc switched to that and I think it's helped too. Klonipin helps the anxious adrenaline feeling... Let me know if they will tell you why they won't give it to you, because I can tell it's working and it's only been 3 days, I have more stamina to get a few things done... let me know!

Hang in there,

Stacy

[iheartcats]

I have left a couple messages with the EP I see (nurse) and have not heard back yet about getting this test. I'll try again next week, so I appreciate all your input.

I do have the jittery, can't sleep yet exhausted stuff.

StacyRN: I also go to Stanford for specific POTS stuff like this so let's hope they get back to me!

[vemee]

I had the blood test done at Stanford, CA, about a month ago, just the way they said (lay quietly before supine blood draw, then wait a bit for upright blood draw). Mine was definitely hyperadrenergic POTS. The literature says patients with POTS usually have normal to slightly elevated supine norepinephrine levels, but the upright norepi levels are usually around 600 or more. My SUPINE norepi was 604 pg/ml, and my UPRIGHT was 1,231 pg/ml... definitely too much norepinephrine, and my symptoms support that. Jittery, can't sleep, can't relax, exhausted, nausea, tachycardia, etc. So all the meds I'm on are to block the norepi... I'm on propranolol, klonipin, and now have added clonidine which is supposed to be great for the hyperadrenergic type. We'll see...

Good luck to you!

Stacy RN

Oh darn, you got me beat on my supine norepinephrine levels mine was 450 at Vanderbilt and 580 at NIH. I was on cymbalta at NIH so that accounts for the difference between the two. I do have you beat on the standing level though mine was over 2100.

I am kidding about the contest but I do wish my doctors would take my levels seriously I am on proamatine which is midrodine and kerlone. I was told that if they could control my pooling (44% drop in circulating blood volume when standing) my norepiniphrine levels would drop which makes sense but nothing is working. I have thought of asking for clonidine but I was put on it when I was getting off the cymbalta and as a result was misdiagnosed as bipolar due to the withdrawal and the drop in norepinephrine levels.

[StacyRN]

To Notgivinup, and Vemee:

Hi, sorry it's been so long! Wow, Vemee, standing levels over 2000??! Whoa!

Anyway, I have to give you an update on the clonidine... it has helped me immensely! I have had more "good" days since I started the clonidine than ever before! Any luck getting your doc to let you try it? Which doc are you seeing at Stanford?? Dr. Karen Friday is the best for POTS, and certainly she would give you the clonidine! She had absolutely no problem prescribing it for me! Maybe you could give her a try... she's so hard to get in to see, however...

Let me know, did you get the clonidine? Did it help you if so?

Stacy

P.S. the bad news is I'm having to wean off all my meds, because I'm going to be in a study on POTS at Vanderbilt next month, which is very good news, but very hard going off my meds! I will miss my clonidine

[vemee]

I am going to ask my doctor about clonidine on my next visit. I also want to ask about switching to mestinon instead of midrodine since I do not think midrodine does anything for me. I had to get off midrodine for a couple of weeks because the doctors office was having problems in authorizing a refill, I noticed no difference between being on and off. They also delayed renewing my adderal which caused me to go through withdrawal; that was not fun.

[iheartcats]

I have the blood test order for this now - but...will my Beta Blocker/Midodrine interfere with it? Does anyone know? I'll email the nurse but I know that'll take days, but I won't go until I hear from her.

But. I hate to go off my BB! Feel like you know what.

[vemee]

I suspect that they might affect the test but wait until you hear form the nurse before doing anything. No sense going through the problems caused by stopping your medicine if you do not have to.

[StacyRN]

Cat Lady,

I was on my beta blocker when I had the test, just hadn't taken it the morning of the test. My doc didn't mention that it would affect anything... my results were still high... let us know how it comes out! Do you see Dr. Friday? You'll have to tell the lab at Stanford how to do the test, cuz when I went in the lab techs had never done it before

Stacy

[StacyRN]

Vemee! Got a question! You said your standing norepi level was over 2100? My understanding is that anything over 2000 they are very careful to try to rule out a pheochromocytoma (adrenal tumor which secretes norepinephrine)... have you had test for a pheochromocytoma??

StacyRN

[vemee]

Thanks for the question Stacy, I wish you had been my doctor back then. Vanderbilt just sent me the catecholamine values but I knew from reading their website that I should be checked for a pheo. I showed several doctors the results and basically they said they don't deal with that. I finally went to an endo who did give me a test for serum metanephines but I had to practically beg for the results from his office. The results were near the upper reference limit but that could have been because the lab techs just stuck me sitting up. I wrote Dr. Pacak at NIH and gave him my values and asked if I should push the doctor more to be more aggressive or if I was making a mountain out of a mole hill. He got me up to NIH for testing the next week. Everything was negative except my supine norepinephine which was 580 due to being on cymbalta. They suggested that I get a clonadine suppression test once I got off the cymbalta but at the time they were ruling out a pheo. In fact my serum metanephrine leve was normal. I haven't gotten the clonadine test but I am fairly certain I do not have a pheo and the high standing levels are a normal reaction to very severe pooling. I was hoping for something that might be fixable such as a pheo.

[StacyRN]

Hey, thanks for the update! What's a clonidine suppression test, and what does Cymbalta have to do with norepi levels? (This is why I'm not a doctor, don't know everything! LOL!)

Stacy

[vemee]

A clonidine suppression test reduces the amount of norepinephrine produced by the nerves. If the over all serum norepinephrine does not fall by a certain percentage then that means a pheo is present and producing norepinephrine.

Cymbalta prevents the reuptake of norepinephrine so that it increases the amount of circulating and neural norepinephrine. Some pots doctors use cymbalta and it does help with some of the symptoms however they have to be careful that the person they are giving it to does not already have high levels of it. In my case my supine ne went from 456 without the drug to 585 supine a few months later on cymbalta; the upper reference limit being 499.

[Notgivinup]

To Notgivinup, and Vemee:

Hi, sorry it's been so long! Wow, Vemee, standing levels over 2000??! Whoa!

Anyway, I have to give you an update on the clonidine... it has helped me immensely! I have had more "good" days since I started the clonidine than ever before! Any luck getting your doc to let you try it? Which doc are you seeing at Stanford?? Dr. Karen Friday is the best for POTS, and certainly she would give you the clonidine! She had absolutely no problem prescribing it for me! Maybe you could give her a try... she's so hard to get in to see, however...

Let me know, did you get the clonidine? Did it help you if so?

Stacy

P.S. the bad news is I'm having to wean off all my meds, because I'm going to be in a study on POTS at Vanderbilt next month, which is very good news, but very hard going off my meds! I will miss my clonidine

[ana_22]

just reading the thread and wanted to ask:

is Supine And Standing Epinephrine And Norepinephrine Levels Test something that all potsy people should have?

im kinda concerned as im very jumpy and shaky and also have nausea and difficulty staying asleep and cannot sleep during the day for the life of me!!!

and also with the cymbalta.... is this good or bad for people with the hyper type of pots?

thanks