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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Best test to measure norepinephrine

halcyon

Senior Member
Messages
2,482
What kind of Doctor would be specialized in reading and treating such test results?
Not sure really. An endocrinologist might order this test when looking for evidence of a pheochromocytoma.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Thank you. Now I need to find a Dr. in Southern California or a Dr. that can do phone consultation. Any ideas?

Good luck on that one. My new primary care doctor believes I have a primarily psychological illness, even as she is ordering special imaging to find out why my feet were cold and mottled blue/red while I waited in her exam room for an hour (sitting up the whole time - not good). She didn't explain how thinking the wrong thoughts can cause blue feet.

As far as I can tell endocrinologists don't know anything about ME or POTS. If all your standard blood chemistry shows normal (the usual case for us) then there is nothing to justify further investigation with the catecholamine tests. Then there is the problem of the normal daily variability of these messenger chemicals, which are also affected by salt intake, etc.

What POTS patients really need are POTS specialists - and they are few and far between.

If you are up for reading medical research I am finding this study to be interesting. One of their findings (not mentioned in the abstract) is a significant increase in norepinephrine.

In response to standing, plasma norepinephrine increased significantly more in patients with POTS (>3-fold increase in norepinephrine) than in the control subjects (>2-fold increase in norepinephrine; P=0.002).

Patients with POTS had a significantly higher upright plasma norepinephrine than did the control subjects (4.76±2.37 versus 2.44±0.89 nmol/L, P=0.002). In contrast to norepinephrine values, plasma epinephrine values were not different between the 2 groups in either the supine or the upright positions (Figure 1D), nor was the increase in epinephrine from supine to upright position significantly different between the groups (P=0.350).
 

Peyt

Senior Member
Messages
678
Location
Southern California
Thanks jimells,
I just found this youtube video which is pretty comprehensive:

After watching this video's symptoms section, I don't think I have a full blown POTS. I do match many of the symptoms and I think I do have excess Norepinephrine
though. It's interesting on minute 13:40 of the video it mentions one of the symptoms to be SIBO(Small Intestine Bacteria Overgrowth) and that's something I have . I was tested for it and confirmed that I have it.

Also, If I don't take my Magnesium powder at night, I often cant sleep, and Magnesium is a substance that helps with Norepinephrine conversion. There are several other symptoms that I match. The only one that I don't have is high blood pressure, and that's why I think I may not have the full blown POTS.


Anyways, since it seems that there is not many Doctors that specialize in POTS, I think I need to approach it differently. I do know that I have high Cortisol in the morning/noon (Based on my saliva test) which drops sharply at night... And when I try to take supplements to lower it , it does work in the morning but gives me a real bad headache at night.... I just read that anytime Cortisol drops sharply, the body will make Norepinephrine, and Norepinephrine will constrict blood vessels and this is what I think causes my headaches in the evening. Especially because if I take a muscle relaxant or Amino Acids such as Arginine, Citruline, or Carnitine (all of which dilates blood vessels) my headaches go away. So I am hoping my problem is Cortisol fluctuation and need to find a Doctor that can help me with that.
 

barbc56

Senior Member
Messages
3,657
She didn't explain how thinking the wrong thoughts can cause blue feet.

Well it's really quite obvious. If you are feeling blue, gravity causes "the blues" to settle in your feet!:eek:

Not to make light of your symptoms. Definitely, something physical going on. Good luck!

Barb
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Also, If I don't take my Magnesium powder at night, I often cant sleep, and Magnesium is a substance that helps with Norepinephrine conversion. There are several other symptoms that I match. The only one that I don't have is high blood pressure, and that's why I think I may not have the full blown POTS.

That's interesting about the magnesium. I've taken magnesium supplements for years, but ran out maybe about the same time the POTS symptoms became much worse. I will definitely get more this week.

POTS patients don't necessarily have hypertension, although some do,

From the study I mentioned above:

Raj 2005 said:
The supine systolic blood pressure was similar between the 2 groups (POTS versus control, 111±14 versus 114±13 mm Hg; P=0.525; Figure 1B).

Both groups experienced a small increase in systolic blood pressure that was not statistically significant on standing, with no difference between groups (POTS versus control, 123±20 versus 115±14 mm Hg; P=0.244).

Neither the diastolic blood pressures while supine (POTS 67±8 mm Hg; control 70±9 mm Hg; P=0.321) or standing (POTS 79±14 mm Hg; control 77±10 mm Hg; P=0.636) nor the mean blood pressures while supine (POTS 81±9 mm Hg; control 85±10 mm Hg; P=0.367) or standing (POTS 94±15 mm Hg; control 90±10 mm Hg; P=0.417) were different between the 2 groups.

This study of Hyperadrenergic POTS determined that 33% of the patients had comorbid hypertension and nearly 20% experienced orthostatic hypertension. POTS is not homogeneous:

Kanjwal 2011 said:
Hyperadrenergic POTS should be identified and differentiated from neuropathic POTS. These patients are usually difficult to treat and there are no standardized treatment protocols known at this time for patients with hyperadrenergic POTS.