Ne Levels

[bebe127]

Hey there,

As many of you know, I was diagnosed with "what is probably POTS" a few years ago. That's pretty much where it ended as the dx. dr. only dx's and doesn't treat and couldn't recommend any dr. that did. I currently see a GP who has a few other patients with POTS and am being treated with Metoprolol and Xanax.

That being said, I have been reading a bunch on here about getting NE levels tested. How do I get this done? How is it done? Blood? Urine? Should the dx. dr. have tested for this during my TTT? I'm asking because I think I have hyper POTS (if in fact I have POTS at all) as my bp went up during TTT. I also don't have some of the symptoms that other's with POTS have such as blood pooling, sycope, near sycope, plus I have other symptoms that other's with POTS don't seem to have like tinnitus. I realize that we are all different and present differently. I'm hoping to get into the dr. for a physical and I want to be armed with some questions to ask him as well as maybe suggesting some tests that I should be having in order to better understand what is going on with me.

Thanks for your thoughts.

Be well

Bebe

[Guest Alex]

Hi bebe,

i had my blood catecholamines checked 3 times - twice during the 2 TTT's - both lying down and then standing every time, and then once more while hospitalized, again lying down and standing. There are some special conditions for the test - you have to have the needle inserted in a vein, then you should be allowed to lie down by yourself for 30 min in a warm dark room (no talking, no TV, no cellphone, etc). 30 min later they draw blood for the 1st time. Then they draw blood standing for the 2nd time around after 5 min of standing if I remember right. There are certain foods and meds that need to be avoided 2-3 days before the test - coffee, aspirin, nitroglycerin, tricyclic antidepressants, chocolate, bananas, avocado, nuts, cheese, alcohol ...not sure what else.

The 24h urine- there are no needles involved you have to collect your urine over 24 hrs in a container with hydrochloric acid (a preservative). The only 'inconvenience' is that you have to keep the container refrigerated from the moment you start the collection until you drop it off at the lab.

Good luck with your dr's appointment.

Alex

[bebe127]

Thanks so much Alex! In your experience, do you think that a GP is capable of ordering these tests, or do I need to discuss it with a cardiologist? Personally, I'd rather do the urine test, I'd just have to make sure no one mistakes it for apple juice or beer

[Guest Alex]

I had the blood work done only while hospitalized, but I think it can be done as an outpatient as well. You might want to choose a location where they can accommodate you (I'm thinking, I may be wrong) due to the 'special' conditions. If your GP is open minded I see no reason why s/he wouldn't. The 24 h urine- I've done it at home several times.

The other thing - I never had any blood work requested by any of the 3 or 4 cardiologists I have ever seen. They had already enough info when I got to see them.

I'd do both the blood and the urine if I were you. I'm not sure if the 24 h urine can show hyper POTS, but it can definitely help rule out a pheochromocytoma.

Best of luck

Alex

[bebe127]

Thanks Amy I'll check into it.

[Lethargic Smiles]

I had this done at Mayo Clinic outpatient. I think any doctors office would have the necessary tools to do this, it'd just be a matter of them knowing exactly how to do it. Like Alex said, it's important they put in an IV, leave you in dark quiet room for 30 minutes, quietly come in and draw blood, let you stand/walk around 10 minutes and take more blood.

[Guest maia]

Wow, was mine done wrong!

[bebe127]

Thanks for all the replies. It seems as though my health issues will have to be put on the back burner for now. Hubs has what seems to be viral Labyrinthitis and we still don't know what's going on with my daughter concerning her recent cardiac tests.

Not to mention that when I was in the dr. office a few weeks ago to refill a script, I asked her about a simple ANA test and she looked at me and said, "I can just look at you and tell you don't have autoimmune issues." So much for asking about testing. Might have to find a new dr. At this point, I'm just living with it all, trying to do what I can when I can. It's been four plus years now, what's a few more ?

Thanks again,

Bebe

[kayjay]

I had this done at Mayo Clinic outpatient. I think any doctors office would have the necessary tools to do this, it'd just be a matter of them knowing exactly how to do it. Like Alex said, it's important they put in an IV, leave you in dark quiet room for 30 minutes, quietly come in and draw blood, let you stand/walk around 10 minutes and take more blood.

This is how mine was done.

A 24 hour urine on me will test positive for pheo (every time). I realize that I'm probably quite hyper but I wouldn't recommend the 24 hr urine test. I spent a week at NIH because of 24 hour urine false positives. Not fun:(. Plasma tests at rest compared with a few mins of moving around is more accurate. I would imagine that ANY potsy would have high ne during a tilt table test.

[kayjay]

Thanks for all the replies. It seems as though my health issues will have to be put on the back burner for now. Hubs has what seems to be viral Labyrinthitis and we still don't know what's going on with my daughter concerning her recent cardiac tests.

Not to mention that when I was in the dr. office a few weeks ago to refill a script, I asked her about a simple ANA test and she looked at me and said, "I can just look at you and tell you don't have autoimmune issues." So much for asking about testing. Might have to find a new dr. At this point, I'm just living with it all, trying to do what I can when I can. It's been four plus years now, what's a few more ?

Thanks again,

Bebe

Sorry . Don't forget to take care of yourself too! I know as moms we sometimes go on auto pilot.

[Lethargic Smiles]

I'm sorry your life is consumed by health issues right now. Take care of you too!