Need help with catecholamine/metanephrine labs for H-POTS

[HyperPOTSGal]

Hello,

I'm trying to help a family member who cannot go out of state to any POTS expert due to insurance reasons.  There is no POTS expert in their state.  They need testing for Hyperadrenergic POTS.  Therefore, a "local" cardiologist is trying to assist in the testing the best possible way and is willing to take guidance from myself and the family member.  They are willing to order the labs with our suggestions since I've had the testing done myself.  They won't fully know how to interpret the results, but I can provide them that information as well.  

The local cardiologist is being extremely helpful with the tests, so I'm just trying to help the family member to be certain it is all done correctly.  

It's been a while since my testing, and I can't remember fully how it's all supposed to be done.  I had both catecholamine and metanephrine blood tests.  I know that the patient needs to be supine for a period (I think mine was 30 minutes) and then have labs drawn.  Then, stand/walk for a period (mine was 15 minutes) and have labs drawn again.

 

HERE'S WHAT I CAN'T REMEMBER:

- Do the labs for catecholamines and metanephrine need done as fasting labs?  Or does it matter?

- The labs that are drawn supine, need to be drawn while still supine/flat, correct?

-  Does the draw done after standing/walking need done while still standing and to not sit at all? 

 

Thank you for any answers you can provide.  Hopefully, they will help others too.

Beverly

 

 

[Jyoti]

I have to reach back in my rather foggy memory to recall my testing, but as far as I can remember, your protocol sounds right.  I had to be supine (I think it was only 15 minutes) and have blood drawn in that position.  Then, I had to stand still for 15 and have my blood drawn in that position.  Without sitting at all.  

Hope this helps.  I am sorry I can't be more definitive, but my memory and yours align, so there is that....

[HyperPOTSGal]

Thank you for sharing your experience.  Do you recall if they need to be done as fasting labs?

I'm sure a lot of us have the memory (or lack of) in alignment.  I appreciate any further experiences or details that anyone can share.

Beverly

[Pistol]

@HyperPOTSGal My autonomic specialist ordered catecholamines at his facility - University hospital. I had to lay in a recliner for 30 minutes, then they drew several tubes of blood ( I was not fasting ). Then I had to walk for 30 minutes ( that is the hard part ) and return to the lab and they drew another several tubes ( sitting ), /the labs were sent to california and it took about 2 weeks to get them back. 

[HyperPOTSGal]

Pistol,

Thanks so much for sharing your experience.  Interesting.  It looks like it varies from doctor to doctor.  Some do as fasting, some don't.  Some things I read online say fasting, some don't.  Some get the 2nd draw while still standing.  Some get 2nd draw while sitting.  Some people only walk for 15 minutes, others 30 minutes.  

I really appreciate any and all information and experiences people are willing to share.

Beverly

[HyperPOTSGal]

Another important thing I forgot to ask...omg, my brain fog!

Were any of you doing these labs told that it was necessary to stop ALL meds for a period of time?  Were you told to stop any meds for any period of time?

The family member I'm trying to help was told to stop ALL meds.  This is a person with heart problems, heart failure, on serious pain meds, antidepressants, etc. (easily more than 10 very important meds).  Even the lab supervisor does not advise stopping all of the patient's meds. 

The doctor trying to help is NOT a POTS expert by any means.  He is just out of the kindness of his heart trying to help in any way possible because the patient cannot go out of state to a POTS expert.  The protocol in their computer system says that the patient must stop ALL meds for 72 hours before the labs.  I suspect it's because the typical reason to check the labs is to look for pheochromocytoma tumors. 

Since that's not the reason they're being done (not checking for pheo) in this patient I don't know whether any of the meds really need to be stopped.  I don't recall what I was instructed about stopping meds when my autonomic specialist did my labs.  

Appreciate any further information.

Beverly

[Pistol]

@HyperPOTSGal I was not told to stop any meds. It was not a scheduled test, he just sent me to the lab after my appointment. I did have a TTT where I had to stop my cardiac meds three days before ( that was difficult! ).Personally I would be very careful to stop all those meds for that long. I would consider that the meds are more important than the test. Often meds are not ever supposed to be stopped suddenly, so maybe check first with the prescribing physician?

[HyperPOTSGal]

Pistol, 

Thanks for this further information.  Very helpful.  I agree that it's not likely safe to stop some of the meds for 72 hours, especially since even the lab supervisor disagrees with the ordering doctor.  They would not stop any that would be of concern, if they stop any at all.  As mentioned, I think some of it is due to the typical reason in their system to order it is due to pheochromocytoma.  I suspect that may be the difference in telling patients to stop all meds. 

I didn't think that I remembered being told to stop meds with mine either, but I wasn't sure.  Come to think of it, I think I was sent to lab right after my appointment too - so I wouldn't have stopped any meds either.  Sorry that I didn't remember that before that question!  I just was not remembering all the details of my own previous testing in order to help my family member.

Funny thing - on the tilt test they want my family member to do (at a later date), they're not requesting any meds be stopped.  I know that some needed stopped on that.

Really appreciate all the information.

Beverly