Catecholamine Test

[Aquadiva]

My daughter has been scheduled for one. Can anyone tell me what they found out by taking the test? Did it direct what medication would help? Or is it just worthless information with no treatment options? I mean, we know she has POTS, but are looking for treatment not just details on what is happening.

Thanks!

[lieze]

I'm still waiting to follow up but yes mine was abnormal.

I have adrenaline surges that kick my butt.

There are medications that can help block the effect on the heart if she can tolerate it. When I was on atenolol it really helped but my bp's are too low to tolerate it.

I have chosen to just deal with it.

lieze

[arizona girl]

Hi yes I finally had mine done. Make sure the test is done right, if she is doing the blood test. You also have to stop taking certain meds and stop eating certain foods. The test should be comparing her supine vs standing. She must lay still and quiet for at least 20 min, 30 is better. Try not to move, talk or have a reaction when they draw the supine blood. Then it is drawn again after standing at least 20 minutes. I was told it needs to be done fasting.

My results showed my supine epinepherine was 94 which about 40 points higher, it did not change at all on standing.

My norepinepherine supine was 400 something, normal range, my standing how ever shot up to almost 1200, almost triple. However this was still in the normal range on it's own. They combine the epi/norepi for a total and my total was about 20 points above normal. Dr. Grubb I believe looks at what happens with the norepinephrine from supine to standing and I think considers it a positive test if there is a signficant increase.

I think this confirmed his diagnosis of Hyperandregenic autonomic small fiber neuropathy. We already knew from my skin biopsy that I had small fiber damage. He agreed with the neurologist that it was probably autoimmune in nature. I'm having a hyperandregenic reaction because the small fiber nerves in my vessel don't constrict to push blood to the brain, my body compensates by giving a surge of norepinephrine to constrict the vessels to get blood to the brain. I then overconstrict causing standing hypertension and tachy. Grubb prescribed low dose labetalol and it did control the wild swings, it however made me very fatigued, which I realized once I weaned off of it to do the catechcolamine test.

I had no measurable dopamine standing or supine for the range of this test. I still don't know what that means. Any one know what that means?

Under the assumption that this is autoimmune in nature. My neurologist ordered a series of plasmaphersis. I just finished 10 treatments. I see my neuro on thursday to go over the changes. I can say that things are certainly different. I did not go back on labetalol after the catecholamine test. After the 3 plasma my hands stopped hurting and my over all body pain went down. After the 6th treatment I stopped having standing hypertension. It will sometimes still spike during an animated talk. The tachy is more noticeable now. I also had some unexpected hypotensive readings and symptoms. But it is doing something.

So yes, to question is it worth doing the test? It should direct the type of meds/treatments that will work better. That though also depends on her symptoms. The test just needs to be done correctly. You need to make sure it is done right. Check with your lab first. You can google the test and read up and print a copy of how it is to be done and bring that with you. Good luck to you.

If any one has any persepective on my results, love to hear from you all!