Orthostatic Hypertension Pots Or Autoimmune Pots Do Not Have Hypovolemia?

[julieph85]

Everything I've read and been told by my doctors is that I need to eat a ton of salt to raise my blood volume and it will help with my symptoms. I can tell you two things about me, My blood does not pool in my legs no matter how long I stand and salt does not help my symptoms at all. All my symptoms began at the end of my pregnancy in my third trimester. In your third trimester your blood volume is 4 X that of a normal persons. I had all the same symptoms then that I do now. There is no way I was hypovolemic then so I doubt I would be now. I think the reason us hyper pots are so thirsty is because of the sympathetic activation. The SNS is involved in your thirst center of your brain. We pee so much because we drink so much. I don't think we really "need" all the water we are drinking. I know some of you already know all of this, I guess i'm just irritated that my doctors have tried to treat me like the orthostatic hypotension people and that is clearly not me. How many on here have actually had their blood volume measured? I'm guessing not many because that test is not offerred many places. Also, if your blood volume was low your hematocrite would be elevated because of the reduced plasma volume. Mine is always borderline low. I'm really confused by this and wish I could get my volume measured to know once and for all so Dr.'s will stop trying to make me wear compression stockings and eat a ton of salt and start giving me something that might actually help like an alpha blocker....

[issie]

You can have pooling of your blood - but not by the most common line of thinking. It can be from vasoconstriction. Yes, for some reasons the docs think that we all fit into the mold of needing salt and compression hose. Not true. Studies are showing that there are different subsets of POTS and us with HyperPOTS need the complete 180 degree different type of treatment than those with the low OI issues. We still have the orthostatic drops but ours starts from a higher place and we still get those same symptoms, but it's not from extremely low OI - just a significant drop from an already high bp. Then we get the same tachy that everyone with POTS gets. They are finding that NO (nitric oxide) could be one of the cause of the vasoconstriction problems and we need to use something to open up our blood vessels so that our blood flows correctly. When it doesn't we can get the leakage and therefore pooling and/or edema issues.

[MomtoGiuliana]

That is so interesting that you do not find salt and fluids helpful. You sound very similar to me. I was sick w POTS in 3rd trimester and eventually developed hypertension on standing as well. I do believe that I have pooling and am hypovolemic, in my case I think it is abdominal pooling, not my legs and hands so much. Salt and fluids make me feel better (unlike your experience).

I hope you find answers soon.

[Katybug]

I have adrenaline surges but I also do NOT have orthostatic hypotension or hypertension, however, my blood pools in my legs...you can watch me change colors...my legs get pink/red/purple and my face gets ashen as the blood goes south . It happens that salt and compression help me but I agree with you , julie...I think we each need to be treated as individuals. All you have to do is read this forum for a day to realize how much we are each alike and yet how much we are different. And when you add in the other diseases/conditions that seem to regularly come up with us, I really think it is impossible to expect that we will all react well to these things. Look at how many people on this forum can't even tolerate the exact meds that they use as front line treatment for POTS....it's kind of scary.

[HopeSprings]

I'm with you. They keep pushing the same remedies with me as well, like it's a given that I have low blood volume. I had my blood volume measured and it was normal. I felt HORRENDOUS during my last pregnancy - so blood volume didn't help there. On the other hand I DO pool and have low BP, so I guess those things should work - low blood volume or not? Midodrine should have worked like a charm given my symptoms, but made me feel TERRIBLE. This is why I am so desperate to get to the root of my problem - to get proper treatment! Like Katy said, an individualized approach to treatment would be best for us.

[Chaos]

I had the test run at CC. It showed a borderline low plasma volume and a low normal red cell mass. My hematocrit usually tests at the high normal end of the spectrum....even with all the abnormal bleeding I use to have. Their assessment was that I had a hyperadrenergic form or an increased sensitivity to beta-adrenergic receptors.

At Mayo, they felt I had both a hyperadrenergic component and a neuropathic component which they felt was probably autoimmune (at least partially).

[toddm1960]

This is one of the questions I asked the POTS doctors, if we have thoracic hypovolemia does our body respond as if we're hypovolemic. Stewarts research has found most all forms of POTS patients have thoracic hypovolemia, but the research doesn't support that same percentage of POTS patients being hypovolemic.

As far as doctors understanding POTS, you're lucky you found one that has even heard of it. Most think if you don't pass out....you can't have POTS, all you need to do is increase salt and fluids and it will go away in time. Sorry for the doctor rant but so few really take the time to understand dysautonomia.

[julieph85]

Chaos- you mentioned that your hematocrite runs high. That is exactly what I'm talking about. If you have low plasma volume your hematocrite would be high because it would be concentrated. That's why I think those of us with normal to low hematocrite are not truly hypovolemic and salt would not be useful in that circumstance.

[ramakentesh]

According to Stewart Medows and now Raj from Vandebilt the most recent view is that while POTs patients probably exhibit some absolute hypovolumia, only a subset have significant hypovolumia related to elevated plasma angiotensin II.

There is no consensus on any of the other stuff:

1. Mayo say that hyper POTS patients are just the same as the others with hyper symptoms either as a compensatory or exacerbating feature. there is evidence to support this. Hyper and non hyper patients cannot be sub catagorised based on symptoms or responses to medication for a start.

2. Vandebilt say that POTS has many sub catagories with varying etiologies. One of the most interesting studies to come out of here was the demonstration that QSART results were abnormal in a portion of BOTH non-hyper and hyperadrenergic POTS patients suggesting the delination is a misnomer. They also found that POTS patients have reduced beta 2 receptor activity - increasing vasoconstrictive responses to stress and perhaps accounting for mast cell degranulation.

3. Ben Levine and co support the growing theory that many POTS patients are simply deconditioned and that hypovolumia is a result of cardiac deconditioning. The fact that exercise appears the most helpful treatment for POTS supporst this to some degree.

4. Blair Grubb et al think that 90% POTS is autoimmune and 10% is hyperadrenergic but these is based on clinical experience, rather than research.

5. Baker Group and now Jens Jordan in Australia think a large subset of patients have reduced NET function - which can manifest as hyper or non hyper dependent on whether brain alpha 2 stimulation outweighs peripheral alpha 1 stimulation in each patient.

6. Stewart and Medows have catagorised patients into low flow (low peripheral blood flow in angiotensin II and perhaps NET), normal flow (parasympathetic withdrawal and increased plasma eNOS) and high flow (likely an autoimmune neuropathy).

Angiotensin II may account for reduced NE reuptake.

7. chinese group think POTS may be caused by excessive hydrogen sulfice mediated small vessel dilation.

[firewatcher]

The Vanderbilt study that found low blood volume, found absolute low blood volume (too little blood in the system,) not just plasma volume. If the plasma volume was corrected, the patients were actually anemic. It won't show without a volume test, so bloodwork will appear normal, but you could actually be hypovolemic. The article is "The Renin-Aldosterone Paradox" by Raj.

[sue1234]

Firewatcher, I so believe this. It should be a standard practice to test blood volume when they do a TTT. Then, according to the results, if low, they could correct and then check hemoglobin/hematocrit, etc. to check for anemia.

[julieph85]

that makes a lot of sense. However, what confuses me about this is if the problem is absolute hypovolemia then why are the doctors treating it by increasing plasma volume only? Salt will only increase plasma volume so why would that help people of they had total volume depletion? It wouldn't. Like you said, it would still be low red blood cells, hemoglobin, and hematocrite.

[janiedelite]

My cardiologist really wanted me to start on synthetic erythropoetin (epogen), which causes an increase in red blood cells. However, the FDA requires that your hemoglobin be under 10 and mine was 11. She said that the epogen has some vasoconstrictive properties as well as increasing blood volume.

[ramakentesh]

the study on the "The Renin-Aldosterone Paradox" study was following up by the following:

http://www.heartrhythmjournal.com/article/S1547-5271(10)01204-X/abstract also from Vandebilt with the suggestion that perhaps elevated angiotensin II levels may correlate with impaired norepinephrine reuptake.

The original work that described elevated angiotensin II in some patients associated absolute hypovolumia - there work suggested that true absolute hypovolumia and abnormal renin responses seemed to occur mainly in these patients.

[ramakentesh]

The Vanderbilt study that found low blood volume, found absolute low blood volume (too little blood in the system,) not just plasma volume. If the plasma volume was corrected, the patients were actually anemic. It won't show without a volume test, so bloodwork will appear normal, but you could actually be hypovolemic. The article is "The Renin-Aldosterone Paradox" by Raj.

I dont remember reading that in the study - that the plasma level correction resulted in anemia. I would assume that volume expansion would result in increased plasma and increased blood cells.

[Annaliese]

Julie, as you know, you are prob the closest person on dinet to me in terms of symptoms and onset trigger (ie pregnancy). In fact in think you might be my younger, better looking twin. Im glad youre thinking about this issue because its confusing me also. Here's what i think- its probably wrong but i dont mind being corrected. I think the sympathetic excessive is due to us having hypovolemia and that the hypovolemia was caused by an autoimmne response ( i have no idea what the immune response destroyed here). I looked up shock symptoms" and these seemed spookily similar to what i was experiening (eg massive anxiety).

When i first tried salt, nothing seemed to happen so i didnt bother with it. Then after about a year, i gradually lost the high standing blood pressure to the point where my bp was now too low. I then tried florinef. Wow, that was an eye opener, all of a sudden i wasnt so thirsty anymore and i stopped drinking so much and stopped peeing so much. Florinef also stopped the flushing a kicking episodes i was having at night(my nighttime bp is VERY low). My heart rate also lowered on florinef. The other reason i think i have hypovolemia is that my pulse pressure is very low ( about 20). Florinef increased my pulse pressure. Wrt your blood stats, wouldnt your blood stats normalse after a chronic hypovolemic state arose ?.iie, wouldnt the concentration of elements rather tht the absolute value of them be the end goal of the body )Also, wrt pregnancy, yes we had increased blood volume but we also had an increased vasculature to fill. There is no mechanism i know of which regulates blood volume per se. Its more blood pressure thats regulated and as a result blood volume is increased or decreased in responses to the blood pressure requirements of the organs. Based on my symptoms, i think i have low flow pots and in the literature this equates with low renin/aldosterone. Ah, final random thought, i dont see any pooling in my legs either. Btw, have you tried florinef? For me, salt just doesnt compare in terms of vol enhancement. If you do try florinef, start at a low dose. I started at .1mg (1 tab) and it felt like my head and calves were going to explode. Now i take 1/4 tab.

[firewatcher]

Normally, the plasma volume expansion will result in the generation of more red blood cells, but immediate correction will result in anemia. It showed up in the charts and graphs of the study and I had verbal confirmation when I went to Vandy. I am an odd duck since I have only plasma deficit and not the cellular deficit as well. With only plasma missing, it looks like polycythemia. The treatment for that is blood donation...not good with a deficit!

[julieph85]

Hi Annaliese! I agree that i think our condition has a very similar if not identical, underlying cause. I also hear what your saying about the volume because I also have a narrow pulse pressure, but only in the mornings and interesting enough that is when I feel the worst. My pulse pressure also expands greatly when I lay down. I've also noticed that when I drink alcohol the next day my pulse pressure will be very narrow and I will be 10X more thirsty then normal and feel horribly dehydrated for days. I've had my aldosterone checked and it is normal. Something with the Renin angiotensin system is definitely wrong with people like us though and for some reason the problem seems to be worse in the mornings. I haven't tried florinef, but if mayo prescribes it i'm willing to try anything.

[Annaliese]

Hi Julie, i wouldnt use florinef on a long term basis unless you have to. After a while your system gets used to producing less aldosterone and you can end up with adrenal atrophy. It also tends to induce headaches. If your dr agrees you could trial for a couple of days to see if youre thirst decreases, that would give you some useful info i think. Im currently using 1/4 of a tablet taken at night (its usualy taken in the morning) so that i dont have nightime hypoxia symptoms which frighten the heck out of me and are probably causing some mild neuropathy.

[Annaliese]

Btw, did they also check renin and angiotensin?

[sue1234]

I was thinking(probably not a good idea for me!), you know it seems that the body is always trying to correct itself. IF we would have lower plasma, was the body trying to compensate for possible chronic anemia? You know, if it senses a reduction in O2 carrying capacity and "concentrates" the blood so that it can expose more RBCs to the lungs or something? I don't know--what I just said makes sense to me, but also sounds ridiculous. Did anyone know if they had chronic anemia beforehand? I know I did about 4 years before my POTS hit. I don't know, after reading all of your postings, it made me think that maybe this is the body's "correction" gone awry.

[julieph85]

Sue, I think your on to something with that. I have had a feeling all along that what most of us are experiencing is actually our body trying to correct something else primary that is damaged or malfunctioning. I think that is why POTS is considered a syndrome and not a specific disease in and of itself. I think mostly what dr.'s are doing is treating the symptoms and not even coming close to the actual problem. I believe that is why beta blockers made me worse. They were dampening my body's natural defense mechanism to cerebral hypoprofusion- tachycardia and increased contractility so I think that is why they made my dizziness and shortness of breath worse. They were actually making the hypoprofusion worse. The anemia is an interesting thought. Mine started at the end of my pregnancy- when I was anemic! I'm not anemic now, but my counts are on the very low end of normal and if my plasma volume is depleted it would make me appear not anemic. I have always thought I must have pernicous anemia because I litteraly have every symptom but of coarse my counts are normal so I can never even get a doctor to do B12 testing or anything like that. I guess I should get my blood volume checked when I go to Mayo if I can!

[Annaliese]

Hi Julie, i agree that its irritating that the primary course of action is to cover up symptoms. They body decides it will compensate for a disease process by say increasing hr and we just go ahead and block that. In the new year im going to try low dose naltrexone and hope that this helps the body fix itself. Ive also started yoga. At the mo i cant really do it and spend most my time in corpse position ; ) Re blood work, ive noticed my iron levels are low normal. Not sure how to get this back up apart from iron supplements.

[issie]

As for low iron levels - mine always show normal. (I have to keep a watch on it because Hemocromatosis runs in my family. That's high iron levels.) I've also had my B12 checked and it is normal as is my folic acid levels. I have had my aldesterone/renin levels checked and they are almost non-existent. I do agree that our bodies are trying to compensate for the dysfunction in them. I also think that the meds that are being given to POTS patient to "fix" one problem or another is compounding the issues and making most POTS patients SICKER. Those of us that are not on meds and are trying to go the natural med route - seem to be more functional than those on meds. We are not well, by no means. But, we seem to be more able to live life and able to do more for a longer length of time.

But, if you have low iron levels one of the best foods for building iron is okra and black strap molasses - cream of wheat is good too - but, most of us are avoiding wheat and grains.

Everyone knows what I think about florinef - so I don't need to comment on that again. (You can go back and look up old threads.) I do know that some with adrenal dysfunction need to be on it - but, if that's not the case. What other issues are going to be created?

If we are truley hypovolumic and are low volume of blood - our tachy is there to try to increase the blood flow to oxygenate our blood and brain and vital organs. If this is the case and we stop this tachy eposide when we need oxygen to stay alive and avoid neurological damage - what long term effects will this cause. It seems we should increase our blood volumes and therefore our oxygen levels to vital organs and then the tachy episodes should decrease/end. (If this is the issue.) Noriepi levels could be causing these surges but what triggers the release of this - is it low blood volume or low oxygen or just an adrenal dysfunction? You see, one question leads to another and then another. It seems it's never ending in the possbilities causing this dysfunction.

[sue1234]

I agree, Issie. Why can't the doctors/researchers take this approach? I think the first step is to see if one is indeed low in blood volume. I wonder why they haven't figured that out yet?