Hi Flow V/s Low Flow Pots

[TXPOTS]

Yes, I went back and reviewed the article, and Dr. Stewart mentioned a high percentage of low flow patients had high angiotensin II and this group with high angiotensin II were exclusively females and had low BMI. My understanding is that NET deficiency is very, very rare and tends to run in families. Is this true? One more question... are there are studies analyzing the NET in POTS? Could the transporter become damaged per say?

Can someone direct me to the Dr. Stewart study that says low-flow patients with high angiotensin II are exclusively female? I've scoured his studies and haven't come across that. Thanks.

Clinical Science (2007) 113, 449?457 (Printed in Great Britain) doi:10.1042/CS20070104 449

Reduced body mass index is associated with increased angiotensin II in young women with postural tachycardia syndrome

Differences in peripheral blood flow, especially in calf blood flow, allowed for a consistent classification scheme [10] that enabled us to partition patients into three groups. One group, which we denoted ?low-flow POTS?, has globally reduced blood flow in association with absolute hypovolaemia, supine tachycardia, reduced stroke volume, sympatho-excitation, blunted orthostatic vascular responses, increased plasma Ang (angiotensin) II [12] and decreased bioavailability of cutaneous NO (nitric oxide) [13]. Interestingly, all patients were female.

[jesse1919]

A few other interesting findings from Dr. Stewart's studies. I am sure they may evolve and change, but since we are on the topic.

Although 75-80% of POTS patients are female, low flow POTS patients were exclusively female. They tend to have reduced BMI. This may be to due to the low blood volume found in low flow POTS or from other hypothesized mechanisms. This may be the group of "skinny females" who get POTS?

Low flow POTS patients have total body hypovolemia, whereas normal and high flow patients actually have normal overall blood volume. Of course, thoracic blood volume is low in all subtypes when standing as blood pools in the legs and abdomen, but low flow patients have low blood volume to begin with.

Over half of low flow POTS patients have elevated angiotensin II. Many, but not all, have low renin and low aldosterone. High flow POTS patients have normal renin and aldosterone. Some normal flow patients have low renin and aldosterone.

I'm interested in this "exclusively female" statement. It would only take one exception to prove this hypothesis wrong and statistics aren't proof. I doubt the male sample size for the study was very large. I was in a Mayo study and with only 3 males. I'll have to go read the papers. It could be a very important clue. I'm male and not hypovolemic. I guess I'm normal flow but haven't been tested for flow. So I wonder what the difference is between low flow POTS and primary hypovolemia? Are they the same condition? Are there males that are hypovolemic? There must be...

[Lenna]

Yes, this just means that the low flow POTS patients were exclusively female in this particular study, which isn't surprising because MOST low flow POTS patients are female. But not all. Here is one of Dr. Stewarts studies, for example, that involved nine females and ONE MALE with low flow POTS. http://www.clinsci.org/cs/110/0255/1100255.pdf

My son has low flow POTS. His BMI is 5. He recently participated in a clinical study on the role of Nitric Oxide and POTS at Beth Israel Hospital in Boston. Not all of his test results are available to us yet, but the one thing we have been told is that he does indeed have low flow POTS. I'll post a thread about that when we have more information.

[TXPOTS]

Yes, this just means that the low flow POTS patients were exclusively female in this particular study, which isn't surprising because MOST low flow POTS patients are female. But not all. Here is one of Dr. Stewarts studies, for example, that involved nine females and ONE MALE with low flow POTS. http://www.clinsci.org/cs/110/0255/1100255.pdf

My son has low flow POTS. His BMI is 5. He recently participated in a clinical study on the role of Nitric Oxide and POTS at Beth Israel Hospital in Boston. Not all of his test results are available to us yet, but the one thing we have been told is that he does indeed have low flow POTS. I'll post a thread about that when we have more information.

Great. Hope this leads your son to a treatment plan and much improvement in the future. Very best of luck.

These studies have small sample populations and obviously most POTS patients, but not all, are female. Good point, Jesse. Hopefully, the future will bring more research and insight.

[roxie]

Does anyone know if you can have lowflow pots without plasma renin & angiotensin problems??

I had a ttt done by dr Stewart himself & he immediately said that I had lowflow w/in minutes he knew & said "your thoracic empties rapidly" whatever that means? Anyways he sent me to have plasma renin & angiotensin 2 tests after I got back home. I went after I was home & when they were taking the blood the ladies had to look up info on how to test it & my mom started telling them what she read about it but they told her they knew what they were doing. ?

Anyways a few weeks later there was an email for dr Stewart saying "no abnomrality found" that's all it said & we've never heard anything again.

So I wonder two things:

1. Was I ever tested properly?

2. But more importantly- if I don't have plasma renin & angiotensin problems do I still have lowflow pots. The cuffs & monitors he put me on seemed to show it

[TXPOTS]

Does anyone know if you can have lowflow pots without plasma renin & angiotensin problems?

I had a ttt done by dr Stewart himself & he immediately said that I had lowflow w/in minutes he knew & said "your thoracic empties rapidly" whatever that means? Anyways he sent me to have plasma renin & angiotensin 2 tests after I got back home. I went after I was home & when they were taking the blood the ladies had to look up info on how to test it & my mom started telling them what she read about it but they told her they knew what they were doing.

Anyways a few weeks later there was an email for dr Stewart saying "no abnomrality found" that's all it said & we've never heard anything again.

So I wonder two things:

1. Was I ever tested properly?

2. But more importantly- if I don't have plasma renin & angiotensin problems do I still have lowflow pots. The cuffs & monitors he put me on seemed to show it

Here is the link to one of Dr. Stewart's studies on angiotensin II. There are some graphs that break patients into the 3 groups and measure renin and aldosterone. It does NOT appear that ALL patients with Dr. Stewart's low flow POTS had low renin and aldosterone, though there is a trend. That would be a good question for Dr. Stewart. I'm one that had low renin, non-existant aldosterone, but low-normal ang II. I guess we're all different.

http://www.nymc.edu/fhp/centers/syncope/angiotensin_in_pots.htm

Hope you are doing well!

[Lenna]

I have 2 questions:

For those of you who suspect that you have low flow POTS, have you ever tried an Angiotensin Receptor Blocker like Losartan? This is the drug that Dr. Stewart has been studying with LFP in some of his more recent studies.

And...how is the test for Angiotensin 2 conducted? It sounds like it's more than just a blood draw.

Thanks!

Lenna

[jesse1919]

My son has low flow POTS. His BMI is 5.

Sorry I'm picky but that BMI must be a typo right? 15 maybe?

[Lenna]

I wish it were a typo.

The doctor was quite disturbed. He said that if Dan were a girl, he would not be menstruating. Dan is 5'11" and 125 lbs.

[firewatcher]

For those looking for information.

[issie]

Okay, here's a bump. It's all about what we're talking about with Low Flow POTS, Nitric Oxide (NO), and Dopamine. Good info here.

Issie

[ladyt]

I am still dens, but understand that low renin and adosterol can be a very pots thing....

And that that is conected to the hi flow vs low flow ? not that i am sure i understand what that is either..

But what dose the ang 2 test really show..? is there an artical about this for dummies..?

[issie]

I am still dens, but understand that low renin and adosterol can be a very pots thing....

And that that is conected to the hi flow vs low flow ? not that i am sure i understand what that is either..

But what dose the ang 2 test really show..? is there an artical about this for dummies..?

One thing you can do to help you understand what these things mean is google the word and look at the sites that it brings up. I like Wikipedia and e-medicine and web-med. It just takes allot of reading and hoping that something sinks in and makes sense. It is all a foreign language until you start to understand how the body works. When that starts to come together for you - other things will make more sense. We all start with not knowing anything, and then with time, we start to learn and understand. Realize it will take time, be patient, it will come.

[McBlonde]

I'm bumping this thread because it's about the low-flow vs high flow questions we have in the current thread. It sounds like to me by reading this that even if you find out, it doesn't matter, because, so far to date, classification has not helped one bit in determining treatment. I am so disappointed to read that. If that's the case, what good does it do to continue test after test?

[sue1234]

Totally agree. I'm to the point of testing things that can be causes, not just collateral incidentals. Researchers have had this kind of info for years now, and sure don't seem to find many papers discussing the WHYs of all these abnormalities. Maybe they are just trying to invent a new drug to "fix" the levels. More money in that than finding a cause and potential cure.

[Lenna]

Sorry, I totally disagree that it doesn't matter. When we learned that my son has low flow POTS, we understood why medications like midodrine, mestinon and adderall made him sicker. His blood vessels are already too constricted and vasoconstricting medications were making him worse. Now he is on Losartan, a vasodilator, and has improved enough that he's ready to give college a try. He was recently offered a chance to participate in a clinical trial for doxidropa; he probably would have jumped at the chance but when we found out that doxidropa is a vasoconstrictor, he knew that it was a bad idea. We still don't know WHY he has low flow POTS and I would give anything to find out, but at least he's living his life again a bit.

[bellgirl]

I have 2 questions:

For those of you who suspect that you have low flow POTS, have you ever tried an Angiotensin Receptor Blocker like Losartan? This is the drug that Dr. Stewart has been studying with LFP in some of his more recent studies.

And...how is the test for Angiotensin 2 conducted? It sounds like it's more than just a blood draw.

Thanks!

Lenna

Sorry, I totally disagree that it doesn't matter. When we learned that my son has low flow POTS, we understood why medications like midodrine, mestinon and adderall made him sicker. His blood vessels are already too constricted and vasoconstricting medications were making him worse. Now he is on Losartan, a vasodilator, and has improved enough that he's ready to give college a try. He was recently offered a chance to participate in a clinical trial for doxidropa; he probably would have jumped at the chance but when we found out that doxidropa is a vasoconstrictor, he knew that it was a bad idea. We still don't know WHY he has low flow POTS and I would give anything to find out, but at least he's living his life again a bit.

I think that your son and I are the only ones on this site who are on Losartan...The funny thing with me, is that I was on it before they knew my diagnosis of dysautonomia for uncontrollable hypertension. I had stroke like symptoms after a virus at about 40; at first I was on Liprinosil an ACE inhibitor, but then developed angioedema, which just could have been my dysautonomia, actually, because I still have trouble swallowing on occasion. Then my internist put me on Micardis/Losartin. Right now I am on the maximum dose, along with a beta blocker, Bystolic. To be honest, I am very curious what they are going to do with me, after I have maxed out on the medication. It is working very well for me now, but I went from 40 mg. to 100mg, skipping the 75mg. dose completely. Granted, I was taking care of my brother in law, who had had a triple bypass and was recovering in my home for 2 weeks (He lives in another state, and wasn't fit for travel), and after taking him to all his doctor appts., testing and surgery in CCU and cardiac unit, so by the time they discharged him from the hospital, I should have gotten in the bed he left behind, lol, but instead, I went straight to the doctor. My blood pressure had been creeping up once again...mind you, I started with a very low blood pressure of 90/50, so when I have a 175/105 it's time to pay attention. To make a long story short, there is no way I can get off medication to even try to get a angiotension ll test to begin with, because I would have a stroke in the process. That being said...I know I have low flow pots, after all my reading...my doctor tells me that I have Pure Autonomic Failure, but after it is all said and done, I'm doing fairly well on all the medication now, but I would really like to find out what caused this to begin with, because maybe if I was able to get to the root of the problem, I could at least help my children, who may end up with these same issues when they become my age (if there is a heredity factor),...My dad had a cerebral aneursym at 59, and died of a stroke at 71, his dad at 46, so I'm concerned for my own children...I wouldn't wish this on a wasp!!

Since your son is only 19, he could grow out of this, because a lot of the young ones do. I'm glad he is able to go to school now...but the doctor's still don't know what causes it to begin with...they are treating the symptoms, but not coming up with answers to why this happens in the first place. I would like to know, not so much for me, but for my children, and their children. I'm agreeing with you...it does matter!! Here's to as much research as possible, and medication for all that need it, in the interum...

[E246]

Kimbellgirl,

I think jangle is on Losartan as well and seems to have got much better with that and exercise.

As you are on it i assume you have done research - so what are the long term implications of Losartan. I know when something makes you well it does not matter so much but I am taking Fludrocortisone and wonder whether i would be better on Losartan. I had such an immediate response to the fludro that i have to assume that i have an over production of Angio II and low renin/aldersterone. So Losartan might be a good drug. Not sure if they prescribe it in UK.

Glad it makes you well.

[Lenna]

Kimbellgirl,

I am taking Fludrocortisone and wonder whether i would be better on Losartan. I had such an immediate response to the fludro that i have to assume that i have an over production of Angio II and low renin/aldersterone. So Losartan might be a good drug. Not sure if they prescribe it in UK.

Danny is taking both Fludrocotrisone and Losartan. Losartan is the generic name; the brand name is Cozaar. I'll bet that it is available in the U.K.