Hypergeneric Pots ?

[Achilles2323]

how do they diagnose Hypergeneric POTS ?

[Carrie]

It's usually going to be the plasma catecholamines test.

You would have blood drawn after being in a relaxed/resting position for 30 minutes. We're usually looking at high norepinephrine values, over about 600 pg/mL, to indicate hyperadrenergic POTS.

Then they'll do a second blood draw after you are walking/standing for 30 minutes. With hyperPOTS, norepinephrine rises to 1200+.

[Achilles2323]

So 24 hr urine cannot diagnose this ?

[arizona girl]

No, it can not. It can however diagnosis a pheo. It is necessary to compare supine vs. standing and see what changes. The test is done pretty much as carrie described. My results for example was slightly elevated epinephrine, which did not change on standing, no dopamine in either position. My norepi however went from 400 supine to almost 1200 on standing.

Dr. Blair Grubb diagnosed me as hyperandrenergic based on my symptoms which included a very significant rise in BP and HR on standing, example 169/110 and HR as high as a 120. The cat blood test only proved his diagnosis. My resting hr starts in the low 50's. My supine BP is normal or at times hypotensive. I was having huge swings with posture change. They are correcting now that we are treating my cvid and autoimmune disease, as well as utilizing labetalol an alpha/beta blocker. I still have a lot of pain and fatigue and GI issues which we are still working on.

My cardio has told me there is no cure for what I have, "However we can manage this very well." I would say I'm slowly getting there. I was though fortunate that we were able to determine why I had hyper pots to begin with. Many times it is difficult to find the actually reason why one has pots and that is considered idiopathic. The best that can be done then is to try to treat the symptoms.

I believe though retesting should be done periodically, as sometimes immune causes can take time to show themselves. I had autoimmune disease that showed symptoms, but not blood autoantibodies this was because I also have an immune deficiency, making it more difficult to fight infection and show autoantibodies. Once we started treating the cvid, then the autobodies started to present in the blood. Several different skin biopsies however showed autoimmunity before the blood work.

[Achilles2323]

ok so lay down for 30 min then take blood

then stand for 30 min and take blood again?

is this the only way to diagnose hyper pots ?

i dont have the luxury of doctor grubb =/

[Guest Alex]

Dr Grubb is not the only one doing this test.

I had my NE/catecholamines levels tested during my TTT - it's standard procedure where I was tested.

I believe there are even labs where you can have this blood test done, if not a hospital should be able to accommodate you.

Good luck

Alex

[Achilles2323]

is there a print out i can take to my PC doctor so i can tell him i need this test?

plasma catecholamines test

NE/catecholamines test

when i did my TTT they did not take blood and had me on my meds =/

not sure it came back rite

[ramakentesh]

Hyperadrenergic pots may have many causes - some if the worst hyper presentations I know have underlying neuropathy. It may be useful in terms of treatment but neuropathic, high ang II low aldosterone 'low flow' crowd and some but not all net deficiency patients can have a hyperadrenergic presentation.

evidenced by the fact that the same amount of hyper and non hyper patients have abnormal QSART results.

there are also some that mayo find that they call the central hyper crowd with MASSIVE NE levels - some at 5,300.

interestingly Ernie in this site had 2,000 NE levels but responded to norepinephrine transporter inhibition meaning that in her case net deficiency was not an issue but I'll responding to that video post with more info on that tonight.

[Guest Alex]

Here is an article on POTS

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

see below a quote defining the hyper or hyperadrenergic POTS

Central Hyperadrenergic POTS

As a part of the definition, POTS is associated with a hyperadrenergic state (Table 1). In many such cases, the hyperadrenergic state is secondary to a partial dysautonomia or hypovolemia. There are some cases, however, in which the primary underlying problem seems to be excessive sympathetic discharge. These patients often have extremely high levels of upright norepinephrine. While we require the upright norepinephrine level to be >600 pg/ml for the diagnosis of POTS, the hyperadrenergic subgroup often has upright norepinephrine level >1000 pg/ml and it is occasionally >2000 pg/ml. These patients sometimes have large increases in blood pressure on standing, indicating that baroreflex buffering is somehow impaired.

Central hyperadrenergic POTS in its most florid form is much less common than neuropathic POTS, comprising only ~10% of patients. Thus therapy in these cases usually targets a decrease in sympathetic tone both centrally and peripherally.

Central sympatholytics such as methyldopa or clonidine can be used. Peripheral beta-adrenergic blockade may be better tolerated by these patients than by those with neuropathic POTS.

Hope this helps

Alex

[issie]

http://www.ncbi.nlm.nih.gov/pubmed/21947988

Here is one study showing the criteria for HyperPOTS. There is an increase in NE with standing above 600pg/ml. or an increase of systolic of 10 mm Hg.

There is also an association with HyperPOTS and MCAS. Symptoms like surges of HyperPOTS can happen without postural changes in MCAS. Here is a study on that:

http://hyper.ahajournals.org/content/45/3/385.full

Interesting thing with this study is that those with MCAS and OI (lower bp's) had higher NE levels with standing then those with MCAS and POTS and also those without MCAS and POTS. This might help to determine why some with high NE levels could have low bp's. (a connection to mast cell problems)

This study list the subset types of POTS that was known at the time of the writing of this paper.

http://www.medscape.com/viewarticle/522421_3

Issie

[ramakentesh]

Its interesting that pharm blockade of net does not result in a hyperadrenergic presentation and in both the Australian net papers as well as work by Jens Jordon show normal NE levels in net deficiency.

[Achilles2323]

so the only way to diagnose hyperadrneic POTS IS

with a plasma catecholamines test.

?

[Guest Alex]

so the only way to diagnose hyperadrneic POTS IS

with a plasma catecholamines test.

?

That's my understanding.

Alex

[ramakentesh]

Yes or some say postural hypertension but its probably not that simple.

[badhbt]

Have u tried Dr. Blitshleyn?

[Achilles2323]

I don't have the money :/

Trying my best to find out wuts going on

Hospital told me I have orthostatic hypertension the other day

I am trying to find out if I have hyper pots .....so lost at the moment

No 1 has found the cause and I suspect I I have hyper pots with the increase in bp upon standing

I need a pots doctor in NYC

[kitt]

http://www.ncbi.nlm.nih.gov/pubmed/21947988

Here is one study showing the criteria for HyperPOTS. There is an increase in NE with standing above 600pg/ml. or an increase of systolic of 10 mm Hg.

There is also an association with HyperPOTS and MCAS. Symptoms like surges of HyperPOTS can happen without postural changes in MCAS. Here is a study on that:

http://hyper.ahajournals.org/content/45/3/385.full

Interesting thing with this study is that those with MCAS and OI (lower bp's) had higher NE levels with standing then those with MCAS and POTS and also those without MCAS and POTS. This might help to determine why some with high NE levels could have low bp's. (a connection to mast cell problems)

This study list the subset types of POTS that was known at the time of the writing of this paper.

http://www.medscape.com/viewarticle/522421_3

Issie

Good information Issie! I had not seen information regarding NE levels and BP data and mast cells.

[Guest Alex]

I can't copy/paste right now, but google search "POTS doctors in New York" the 4th hit down the page is a website called kreativestudios something - they have a list of POTS dr in NYC. Not sure if the info is up to date. Worth a try though.

Don't give up. You'll get to the bottom of this.

Are you on any meds for POTS? Do you feel like they help? Have you tried any non-pharmaceutical approaches? Dinet's main page has a long list of options in that direction.

Keep us posted, will you?

Wish I could be of more help

Alex

[NMPotsie]

I was not able to get the plasma catecholamine test in my area when I first became ill. I had several urinary cat tests and they showed nothing. My doctor gave me a standing order for a urinary cat test, and when I had a hyper episode (very high bp, chills, and that shaky "I'm gonna die" feeling) I ran to the lab and got the containers for the test. My cats were sky high. Later, when I went to Mayo, I was given the plasma test and they were high then but not nearly as high as the urinary test. So, at least in my experience, urinary cats can be indicative of a hyper state.

My doctor emphasized to the lab the proper collection procedure (he looked at Mayo's online lab catalog) and measured the first 6 hours after the "surge" in a seperate container than the next 18. Why that is I'm not sure, but I definitely had evidence of out of control cats in my urinary sample.

While the cats are supportive of the diagnosis, the doctors I've talked to are pretty comfortable labeling a person as "likely hyperadrenergic" when there is the increase in bp on standing and, often, a valsalva with an exaggerated bp response. My own serum cat test had to be "cheated" because it's hard to get blood out of me and they used a bp cuff to force it out, which could have skewed the results, but my neuro didn't seem overly concerned as I had the other indicators of hyper.

[ramakentesh]

I don't have the money :/

Trying my best to find out wuts going on

Hospital told me I have orthostatic hypertension the other day

I am trying to find out if I have hyper pots .....so lost at the moment

No 1 has found the cause and I suspect I I have hyper pots with the increase in bp upon standing

I need a pots doctor in NYC

well the information provided here should set you on the right path re diagnosis.

Another way to look at it would be - do symptoms of sympathetic activity predominate or does dizziness/weakness?

[Achilles2323]

What are the symptoms between hyper pots and regular pots ?

[Guest Alex]

Achilles,

if you read the article I referenced you'll see what differences are there between different types of POTS.

I'm still not sure what people refer to as 'normal POTS' or 'regular POTS'.

Alex

Edited May 16, 2013 by alex74alex

[Achilles2323]

ok thank you

would being on meds effect the .catecholamine blood test ???

[Guest Alex]

I was told to avoid certain foods and meds for 2 days before the test - you should check with your dr though and by all means do not stop any meds before asking your dr

here is a link that should help:

http://nlm.nih.gov/medlineplus/ency/article/003561.htm

Alex

[Achilles2323]

mmm bananas interesting i eat 2 a day lol

guess i should stop before the test