Hyperandrenergic Pots

[avidita]

Hi:

I would like to once again tap in our collective knowledge and ask your thoughts on the hyperadrenergic type of POTS. Here are my facts:

*For past 2 years all TTT that I've done have shown POTS (pulse goes up, blood pressure stays stable).

*This year I had a TTT where Blood Pressure went to 50/25 with pulse increasing as usual, so I have one doctor telling me I don't have POTS since my blood pressure plummeted on the latest test; and another telling me that sharp drops sometimes occur with POTS, so the blood pressure drop doesn't mean no-POTS.

*My BP is always low, so I've never had orthostatic or any other type of Hypertension

* Had a 24 hour urine catecholamines test during which I made sure I spent most of my day on my feet (walking for 1.5 hours, then shopping for another few hours) to really test my system and the results were completely normal (smack in the middle of the ranges), as follows:

- epinephrine, urine: 4 ug/L (undefined)

- epinephrine, 24hr, urine: 9 ug/24hr (0-20)

- norepinephrine, urine: 16 ug/L (undefined)

- norepinephrine, 24hr, urine: 36 rg/24hr (0-135)

- dopamine, urine: 113 ug/L (undefined)

- dopamine, 24hr, urine: 254 ug/24hr (0-510)

So, my question: Let's assume I still have POTS, despite the one BP drop. Do the low values of my 24hr urine catecholamine test prove that it is not the hyperadrenergic type?

The 24hr norepinephire is actually on the low end with 36, when the range is from 0-135. I did my best to say on my feet all day. I know the right way to do it is to draw blood when I am laying down and then after I have stood for 10 minutes, but they won't do it at this point. But if that is the case, and I stood almost all day, that should be reflected in the 24hr urine test, too, right? Please let me know what you think. Thanks!!!!

[firewatcher]

avidita,

I did not have elevated urine catecholamines and I was not tested for blood levels, but my doc at Vanderbilt said that my autonomic responses to the testing (orthostatics, cold pressor, valsalva and paced breathing) were very indicative of hyperadrenergic responses. For hyper-POTS, you can have too much norepi or exaggerated responses to normal levels of norepi, so you could still have "hyper-POTS." I know, clear as mud.

Not every autonomic doc even recognizes hyper-POTS as a subgroup.

[lieze]

Yeah I think that it could be normal and obviously you still have issues.

I think the only reason they did my catecholamine levels was to check for a pheochromocytoma. My urine results were normal. My plasma norepinephrine was elevated. I also had several panic attacks that day, so I don't know on a real panic free day what my plasma levels would be like.

[Friedbrain]

...... For hyper-POTS, you can have too much norepi or exaggerated responses to normal levels of norepi, so you could still have "hyper-POTS." I know, clear as mud.

......

I can explain, if it would help: norepinephrine is a chemical that works by binding at receptors, resulting in a response. You can have an enhanced release to a stimulus..... or, for whatever reason (and scientists spend years studying all the reasons why , you could also have too many ("upregulation of") receptors so that a normal release has an enhanced effect.

Fwiw, sometimes, an absence of a chemical (neurotransmitter or hormone) can result in an upregulation of receptors. Like if it doesn't rain enough anymore to fill your pail with water, you put out SIX pails so that, when it rains, you will collect enough water (combined-a full bucket's worth). Well, if it rains the normal amount, all of a sudden you have SIX times the amount of rain (way too much rain). Stupid example, but maybe that makes sense.

(As an aside, years ago, when I started having neuro and postural hypotension problems, I had the 24 hr urine catecholamine measurement done, and the results were too low. norepi of 21 (norm 15-100), epi 0 (norm 2-24) and total 21 (26-121). The doc didn't know what that meant. So I wonder if my catecholamines, for whatever reason, ran low back then generally, but now, if something comes along to stimulate their release, then BAM!)

[Chaos]

According to the Cardiologist I saw at Cleveland Clinic, POTS by definition is what your heart rate does in the first 10 minutes of the TTT. But you can have POTS and then still go on to have your blood pressure drop later in the test. You can have both POTS and NMH.

My HR did the big increase in the first 10 minutes but then ultimately my BP drops to 30's over 20's (happened on all three TTT I've had.)

The two things are not mutually exclusive.

Friedbrain- Nice explanation. Thanks!

Avidita- Good luck sorting all this out!

[kayjay]

For me my hyper pots means that I do have high BP at times. My urine catecholamines are high enough to be mis-diagnosed with pheo.

My plasma levels are also high... after standing. They are normal at rest.

It is my understanding ( I think) that if you don't have hyper pots it can be a good thing when it comes to treatment. My high/low blood pressure makes things extra tricky. I didn't get the warm fuzzy when my report from the mayo clinic mentioned several times what a complicated case I am ?

If your BP is not too high you can take meds I can't.

Firewatcher mentioned symptoms. I had shortness of breath, frequent urination, and very high BP.

Hope you are doing better soon!