Hypovolemia Pots

[looneymom]

Does anyone have POTS that's caused by this? I have read the information on the dinet web site. Our cardiologist thinks this is part of my son's condition. I already know that my son has low renin and aderstrome because of a test that was ran last summer. Does this cause problems with norephrine , dopamine, and serotinon levels? Is this consider to be a specific type of POTS or is it a cause of POTS?

[MomtoGiuliana]

Someone else can probably lead you to more information but hypovolemia seems to be a part of POTS for many of us. I was told I was hypovolemic (although no tests were done to prove so). Expanding blood volume by taking extra fluids and salt seems to help many POTS patients.

[ramakentesh]

It appears that all forms of pots could potentially effect blood volume - usually by sodium handling. Dr Stewart found that many with obviously low aldosterone and renin had paradoxical elevations in angiotensin II peptide. Ang II increases transduction responses to norepinephrine, increases brain stem sympathetic outflow and also directly stimulates norepinephrine release.

Vanderbilt more recently confirmed the high ang II subset originally labeled 'low flow'.

how these abnormalities result in pots and low blood volume is still being determined.

[margiebee]

A blood volume test is set to be my next test so far actually. Sympomatically I apparently appear to have low blood volume, and salt loading does help me significantly. I also have pretty significant blood pooling and that is part of it. But my doctor also has said that most POTS patients are hypovolemic to some degree and that there is probably still some other cause behind it.

[Guest Alex]

My specialist told me I have hypovolemia based on my low 24 h urine sodium and my low BP. I know now that this is just circumstantial evidence. My renin and aldosterone levels have always been ok - not marginally OK, but mid range OK.

Like many others I took florinef, drank up to 1 gallon of water a day and ate as salty as I could, only to find myself getting worse - several nasty hypertensive episodes made me reconsider my treatment. Now I'm off florinef and knock on wood, my BP stabilized.

I believe there are several articles published along the lines of hypovolemia/low flow POTS so you may want to search the forum for some of those. I'll look through my 'collection' and post later if I find anything relevant.

Best,

Alex

[Guest Alex]

Here are some articles on POTS hypovolemia, as well as the renin-aldosterone paradox rama mentioned

http://circ.ahajournals.org/content/111/13/1574

Renin–Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome

http://ajpheart.physiology.org/content/287/3/H1319.full.html#ref-list-1

Regional blood volume and peripheral blood flow in postural tachycardia syndrome

http://circ.ahajournals.org/content/96/2/575.full

Effects of Volume Loading and Pressor Agents in Idiopathic Orthostatic Tachycardia

THE POSTURAL TACHYCARDIA SYNDROME Marvin S. Medow, Ph.D. and Julian M. Stewart, M.D., Ph.D. (you can find the full text article online or PM me and I can send it to you)

ABSTRACT

Postural tachycardia syndrome (POTS) is a disorder of unknown etiology, and patients with this condition exhibit orthostatic intolerance (OI) and excessive tachycardia. Excessive tachycardia with POTS has been defined as a rapid (within 10 minutes) increase in heart rate by more than 30 beats per minute, or to a heart rate that exceeds 120 beats per minute. Patients with POTS can experience difficulty with daily routines such as housework, shopping, eating and attending work or school. The possibility exists that all forms of OI, including POTS, result from central hypovolemia even without tachycardia. The clinical findings of POTS are observed in an increasing number of patients who are usually female and aged 15-50 years. Adults with POTS do not have hypotension, while children may exhibit hypotension. Many patients with POTS are intolerant of exercise. “Idiopathic” POTS must be distinguished from other conditions that can reduce venous return to the heart and produce similar signs and symptoms, such as dehydration, anemia or hyperthyroidism. Therapies for POTS are directed at relieving the central hypovolemia or at compensating for the circulatory dysfunctions that may cause this disorder. Treatments have resulted in varying degrees of success, and are often used in combination with each other.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/

Diagnosis and management of postural orthostatic tachycardia syndrome: A brief review

http://www.ncbi.nlm.nih.gov/pubmed/9274896/

Hypovolemia in syncope and orthostatic intolerance role of the renin-angiotensin system.

Conclusion: Hypovolemia occurs commonly in orthostatic intolerance. It is accompanied by an inappropriately low level of plasma renin activity. The degree of abnormality of blood volume correlates closely with the degree of abnormality in plasma renin activity. Taken together, these observations suggest that reduced plasma renin activity may be an important pathophysiologic component of the syndrome of orthostatic intolerance.

http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/full

Postural Tachycardia Syndrome (POTS)

Conclusions: POTS is heterogeneous in presentation and mechanisms. Major mechanisms are denervation, hypovolemia, deconditioning, and hyperadrenergic state. Most patients can benefit from a pathophysiologically based regimen of management.

Alex

[looneymom]

Thanks Alex for the articles. I will keep reading and searching for answers. My son already uses midodrine and fludrocortisone. Plus, he drinks lots of fluids and is a salt loader. Our cardiologist thinks his body should have responded to these two medications by now. My son has been on them for over a year. The cardiologist has decided that it's time to try different medications and start running blood work to check out some autoimmune things.

[Guest Alex]

It seems like that's the 'standard' course of treatment for low flow pots - midodrine and florinef. I couldn't tolerate them, and the several hypertensive episodes I had in a short time made me drop both meds.

Has your son had a blood volume determination test, or how did his drs dx the hypovolemia?

Alex

[diabeticgonewild]

Somebody suggested, on a blog nonetheless, that a "Daxor blood volume test" could be useful in determining low retention of fluids in hypovolemic POTS. Only certain hospitals have this machine.

[Guest Alex]

Before daxor the gold standard for blood volume measurement was a classic dual-isotope blood volume nuclear medicine study -

http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx

It looks like daxor's new method is faster and less prone to errors

http://tech.snmjournals.org/content/35/2/55.full.pdf+html

Alex

[looneymom]

He has not been tested but the cardiologist has told me the he suspects that this may be the cause. Maybe based upon his symptoms. That's why I wondered if the symptoms for this were different. He does pool in his legs and hands. Has anyone gone through the testing? What is involved? Is it painful?

[Guest Alex]

the tests as described basically involve taking several blood samples - one before and a couple more after a radiaoctive tracer is injected into the patient's blood stream. Aside from the typical discomfort associated with blood work, the only concern is a possible reaction to the indicator/radioactive tracer.

I have not had any of these tests, like I said my specialist suspected hypovolemia based on my low 24 h urine sodium - speculative at best.

Hopefully someone who had one of these tests will be able to answer your question.

Alex

[Lenna]

It seems like that's the 'standard' course of treatment for low flow pots - midodrine and florinef. I couldn't tolerate them, and the several hypertensive episodes I had in a short time made me drop both meds.

Has your son had a blood volume determination test, or how did his drs dx the hypovolemia?

Alex

My son is believed to have "low flow" POTS, based on the fact that he was shown to be deficient in nitric oxide during a clinical study at Beth Israel Deaconess. That means he is vasoconstricted, and Midodrine is absolutely the wrong medication for him. He is now on Cozaar (Losartan), which is a vasodilator, and Florinef, and his POTS has improved to the point where it is an annoyance but no longer rules his life.

[Relax86]

I supposedly was diagnosed with low blood volume. I had testing that determined (I think) my aldosterone levels were below normal levels. I can't remember to be honest. I know that there was a problem with ald and renin. They did take a lot of vials of blood and inject me with something intermittently as well. I know it sounds crazy that I don't remember the test or the exact results but it was in the midst of the worst of my flare and I was barely functioning. The test was performed in a hospital. I finally did get better. I used Midrodine short term and I also stopped having blood work, which meant a commitment to stop looking/having testing for a little bit. I used salt and water to increase blood volume.

I also had a positive ANA for scleraderma which was later retested to be negative. The last positive test I had was a pretty low C3 complement test. From what I understand means my immune system is a little compromised. I also used hydrocortisone throughout my flare which really seemed to be my lifesaver. I wonder if the use of HC lowered my immune system leading me to have to low C3 test. Overall, I'm getting better but it took a little more than a year. Looneymom - Good luck to you and your son.

[kitt]

Somebody suggested, on a blog nonetheless, that a "Daxor blood volume test" could be useful in determining low retention of fluids in hypovolemic POTS. Only certain hospitals have this machine.

Diabeticgone wild,

You mentioned a suggestion and used the phrase 'on a blog nonetheless'

This girl does an excellent job on her blog. I don't read it regularly, but she does an excellent job of blogging about pots.

I have a script to have a picc line put in to start saline IV's but haven't done it yet.

Hope to get some improvement. Have read of MANY pots patients getting saline, and they report a very significant improvement.

What confuses me though is that salt loading is not recommended for hyperpots patients.

Am confused by this. Does anyone know why?

[Guest Alex]

Kitt

not sure if this is the 'right' answer but I believe there was a post here a while ago mentioning the research of some drs from Boston suggesting that the salt increases BP by adrenalin, not by expanding the volume. Maybe this is the reason why salt is not recommended for hyper POTS patients?! Just speculating.

Alex

[diabeticgonewild]

Somebody suggested, on a blog nonetheless, that a "Daxor blood volume test" could be useful in determining low retention of fluids in hypovolemic POTS. Only certain hospitals have this machine.

Diabeticgone wild,

You mentioned a suggestion and used the phrase 'on a blog nonetheless'

This girl does an excellent job on her blog. I don't read it regularly, but she does an excellent job of blogging about pots.

I have a script to have a picc line put in to start saline IV's but haven't done it yet.

Hope to get some improvement. Have read of MANY pots patients getting saline, and they report a very significant improvement.

What confuses me though is that salt loading is not recommended for hyperpots patients.

Am confused by this. Does anyone know why?

I didn't mean to offend or use connotation that suggested any sort of negativity, but I did.

She does work hard and I respect that.

I apologize for the lack of consideration I gave when I wrote the above post.

Thank you.

[kitt]

Diabeticgonewild,

No need to apologize to, (certainly not to me!) Just wanted to point out that the person who writes that blog does a great job and does a service to pots patients. Wish more people were able or willing to write a comprehensive blog and provide good information.

Diabetic, you provided a great piece of information on hypovolemia!

You wrote: Pasting...

that a "Daxor blood volume test" could be useful in determining low retention of fluids in hypovolemic POTS. Only certain hospitals have this machine.

Good information Dietbeticgonewild! Thank you for posted that.

Prompted me to look for what hospitals have this machine, and found the link to exactly which hospitals have the machine.

Here's the list by state and city...

http://www.daxor.com/clientlist.asp

[kitt]

Kitt

not sure if this is the 'right' answer but I believe there was a post here a while ago mentioning the research of some drs from Boston suggesting that the salt increases BP by adrenalin, not by expanding the volume. Maybe this is the reason why salt is not recommended for hyper POTS patients?! Just speculating.

Alex

Alex, you make a good point about salt increasing BP, but I don't find any information that it's caused by adrenalin?

Your post though made me realize though why salt loading (perhaps THE primary reason?) is NOT recommended for hyperadrenergic pots patients. MOST hyper pots patients have high BP, although not all. Their are few of us on Dinet with moderate and extreme hyper pots who have low BP. I'm one with hyper pots and low BP, so I know why my doctor was quick to prescribe the picc line and saline infusions.

Here's a link that explains that doctors really don't know 'why' salt increases blood pressure.

http://www.ncbi.nlm.nih.gov/pubmed/16467498

So not sure what you mean by adrenaline causing high BP? Would be interested in reading anything you might find though.

[Guest Alex]

Kitt,

as I said earlier, I was quoting of the top of my head an article that has been posted here in the past.

While I don't have access to the article itself, here is a 'review' of the article:

http://www.foodnavigator-usa.com/R-D/Salt-increases-blood-pressure-by-adrenalin-not-volume-expansion

My understanding of the article is that salt increases one's blood pressure not by expanding the blood volume, but by stimulating the nervous system to generate extra adrenalin. It's the extra adrenalin that constricts the blood vessels and increases the blood pressure, not the extra blood volume that is supposedly gained by ingesting more salt.

If I come across other articles on this I'll definitely post them.

I tend to agree with Dr Gavras (the author of the article) simply because when I was salt loading I experienced some of the worst adrenaline rushes ever...or I may be making the wrong connections.

Alex

Edited May 21, 2013 by alex74alex

[Guest Alex]

http://forums.dinet.org/index.php?/topic/22374-bu-school-of-medicine-thinks-increased-of-salt-raises-bp-by-adrenalin-not-blood-volume-expansion/

here is the original discussion on this - it was Rich who found and shared the article

[HyperPOTS8]

All patients with pheochromocytoma have hypovolemia as the excess cathecholamines reset the volume status at a lower level thru a complex mechanism. I have hyperpots with very elevated NE levels (3400) and have severe hypovolemia (by blood volume testing at Mayo) which my Mayo autonomic neuro MD felt was due to the very high catecholamines (same as the pheo mechanism). There is certainly also a vicious cycle created whereby the severe hypovolemia (which in my case was associated with ischemic ecg changes) then triggers the release of more catecholamines. In contast to many pots patients, my renin and aldosterone levels were appropriately very elevated. My tachycardia went away completely once I got on florinef and salt tablets. One of the mechanisms of this presentation is felt to be due to antibodies to alpha and/or beta adrenergic receptors.

[kitt]

All patients with pheochromocytoma have hypovolemia as the excess cathecholamines reset the volume status at a lower level thru a complex mechanism. I have hyperpots with very elevated NE levels (3400) and have severe hypovolemia (by blood volume testing at Mayo) which my Mayo autonomic neuro MD felt was due to the very high catecholamines (same as the pheo mechanism). There is certainly also a vicious cycle created whereby the severe hypovolemia (which in my case was associated with ischemic ecg changes) then triggers the release of more catecholamines. In contast to many pots patients, my renin and aldosterone levels were appropriately very elevated. My tachycardia went away completely once I got on florinef and salt tablets. One of the mechanisms of this presentation is felt to be due to antibodies to alpha and/or beta adrenergic receptors.

Hyperpots, thanks for chiming in. You have hyper pots, and also HIGH BP, yet you're taking salt tabs for the tachycardia?

You didn't mention high blood pressure with regard to salt loading. You're hyper and salt loaded. Do you continue to?

Did any doctors express a concern with high salt intake due to high BP, renin and aldosterone levels?

[looneymom]

Great discussion! So with hyperpots, the person could have either high or low blood pressure. If the salt can cause adrenal problems, how does one figure out how much salt they really need without causing more problems?

My son has low blood pressure. Our cardiologist actually cut my son's midodrine dosage in half this last week to see if would help his scalp pain would go away. This made no difference at all with the scalp pain. However, it made his blood pressure go even lower ( 84/56) and he could not stand up at all because his knees would literally start buckleing. So this morning, I got an email from the cardiologist to put him back on his original dosage.

If a person has the extra adrenaline in his system all the time, this is even going to cause more problems. Is there a way to measure adrenaline to tell if there is too much in the system. I'm guessing this might be a real problem with POTS during teenage years because of all the changes going on.

Keep posting. I'm learning a lot. Just have more questions about test, hypovolemia, and hyperpots, to ask the cardiologist about.

[HyperPOTS8]

Kitt,

Yes I have labile BP which is more often high but sometimes also low. My physiology (as described) is very abnormal and totally different from Mrs Jones with essential HTN. If I didn't take salt and florinef, myBP would be even higher. Yes, that is part of my treatment program which has been reviewed by Mayo and Dr. Grubb. This doesn't necessarily, however, apply to everyone with hyperPOTS.