If We Have Hypovolemia---why??????

[sue1234]

Okay, I know there is the subgroup of EDS, so this isn't for them.

For the rest, do any of you know if you have hypovolemia OR, like me, feel pretty much like you do??? Okay, just a couple of sentences on my POTS--I got lightheaded one day after having blood drawn for labs, and have since that day been lightheaded when upright, and LOTS of adrenaline, both appropriate and inappropriate.

I also quit sweating, which is one of the first things a body will do when they have sweat out too much fluid(when in heat shock, you are hot and DRY). I feel like I don't have enough volume and have told my doctors that since day one. My skin on my arms now look like vinyl records, with all those grooved lines.

Okay, so maybe more than just a few sentences.

For everyone, do you seem like not enough fluid? Have you had your aldosterone levels checked? Has anyone had their pituitary checked?

Please, anyone that might apply, please discuss if you have had these checked and if they were normal or abnormal. I just feel like our bodies don't have enough fluid, and POTS is just the cascade of how our bodies handle that problem. But, WHY did we get low blood volume?

I have even been tested for a pheochromocytoma, and people with those adrenal tumors have a reduced blood volume. So, there are reasons why people with POTS might have low fluid. We just need to find some common factors!!!!

[TXPOTS]

Hypovolemic POTSy here:

Unmeasurable aldosterone, very low renin (both on multiple occasions and during a formal water deprivation test in hospital)

No AVP detected during water deprivation test, though I seemed to concentrate urine to the 300 mOsm/kg range (partial diabetes insipidus syndrome from POTS)

Normal Pituitary on specialized MRI of pituitary, flair present for AVP (meaning I have AVP present)

Other Pituitary Hormones Normal

My best explanation: A compensatory increase in vascular resistance occurs when standing to get blood to the heart and brain. This increase in resistance tells the kidneys to suppress the renin-angiotensin-aldosterone system. Therefore, aldosterone is not produced in adequate amounts by the adrenals. RAAS is also intricately tied to AVP release by the pituitary. Our kidneys think we are hypertensive and not in need of the extra fluid when we are actually hypovolemic. A similar scenario occurs in pheo and even in hypertensive individuals. This is the best explanation I've got, though others will have their own hypotheses.

[firewatcher]

There is an article from Dr. Raj called the Renin-Aldosterone Paradox that somewhat explains this. It is somewhere on the site/forum already.

I have low blood volume:

High hemoglobin/RBC/hematocrit

High serum osmolality...thick blood (all the time)

Lower than normal renin and aldosterone

No measurable AVP, even during a dehydration test

No pituitary hyperintensity indicating that I even make it

I do concentrate my urine when severely dehydrated, but they are finding that other hormones sometimes kick in when vasopressin doesn't.

My weight can fluctuate up to 8 pounds in a day--all water.

I also have an on again/off again dx of partial diabetes insipidus.

[issie]

Well, I do have EDS. But, I also feel like I don't hydrate properly. I'm fairly new to these issues and haven't had all the diagnosisng that I need. I don't know why EDS was excluded from your question. So, that's my question. What does being dehydrated and not properly hydrating have to do with EDS?

Just as a side note: I took one of the members advice about the Elixir electrolyte tabs. It is seeming to help with the hydration issues. My hands don't feel like sand paper any more. Before, it didn't matter how much I drank, I didn't seen to hyrate and have to run to the bathroom all the time. My hands actually feel soft and not all dried out. I've only had one tab today.

[sue1234]

I guess I should add my lab/testing info too:

--Low ADH, tested twice

--Low aldosterone, normal renin (aldosterone normal one year later)

--MRI shows normal locally, but brainsurgeon read via mail said not sure, let him know if I ever get any odd pituitary labs(uhhh, NOW I get the low ADH reading!). I am awaiting results from a new MRI of the brain/neck that I will get results in mid-July.

--1 cm growth on adrenal gland

So, TXPOTS, I understand what you are saying with the compensatory effect with the RAAS, but it makes me think: what came first, the chicken or the egg? Did we get higher b/p, which in turn turned down the RAAS, or did we get lower blood volume, then the higher b/p to get blood to brain? What started all this?

Firewatcher, I remember you had the ADH issues, which makes me wonder how many of us have a ADH or aldosterone issue. That article you mentioned, about the Renin-Aldosterone Paradox, I had printed out and brought to a cardiologist a year and a half ago. He didn't really address the issue very well--just wanted to do the usual by giving me a beta blocker.

[sue1234]

Issie,

I didn't mean anything bad or mean by excluding EDS--I have read alot of y'alls posts and from what I've read, I feel that y'all attribute your POTS to the "stretchy" blood vessels and not being able to get the blood to the brain because of it. BUT, if you think you have a volume problem, great!! Jump in here and give us your two cents! I would love all the brains we can get to share labs and possible causes. We may get ahead of some of the research centers(wishing, of course...).

If any other EDSers think they have a volume problem, then feel free to join!

[TXPOTS]

I guess I should add my lab/testing info too:

--Low ADH, tested twice

--Low aldosterone, normal renin (aldosterone normal one year later)

--MRI shows normal locally, but brainsurgeon read via mail said not sure, let him know if I ever get any odd pituitary labs(uhhh, NOW I get the low ADH reading!). I am awaiting results from a new MRI of the brain/neck that I will get results in mid-July.

--1 cm growth on adrenal gland

So, TXPOTS, I understand what you are saying with the compensatory effect with the RAAS, but it makes me think: what came first, the chicken or the egg? Did we get higher b/p, which in turn turned down the RAAS, or did we get lower blood volume, then the higher b/p to get blood to brain? What started all this?

Firewatcher, I remember you had the ADH issues, which makes me wonder how many of us have a ADH or aldosterone issue. That article you mentioned, about the Renin-Aldosterone Paradox, I had printed out and brought to a cardiologist a year and a half ago. He didn't really address the issue very well--just wanted to do the usual by giving me a beta blocker.

Exactly, what comes first the chicken or the egg? My thoughts exactly... For what it's worth, the AVP test is notoriously unreliable. The water dep test is a better measure of diabetes insipidus. There is supposed to be a new, better AVP test coming out soon.

[sue1234]

Yea, I wish they would research into the root cause of this.

How is the new test for AVP(same as ADH?) going to test--more simple than the deprivation test?

[firewatcher]

Yea, I wish they would research into the root cause of this.

How is the new test for AVP(same as ADH?) going to test--more simple than the deprivation test?

It measures copeptin (a more stable chemical than AVP.) Copeptin is released at the same time as AVP, so it has been proven to correlate accurately and is much less prone to error. It will still be a water deprivation test, but not as long on the deprivation, plus a serum/urine OSM measurement at the same time. I had my AVP test done 4 times, once at a university hospital, so I know it is accurate......nuthin'

[issie]

Issie,

I didn't mean anything bad or mean by excluding EDS--I have read alot of y'alls posts and from what I've read, I feel that y'all attribute your POTS to the "stretchy" blood vessels and not being able to get the blood to the brain because of it. BUT, if you think you have a volume problem, great!! Jump in here and give us your two cents! I would love all the brains we can get to share labs and possible causes. We may get ahead of some of the research centers(wishing, of course...).

If any other EDSers think they have a volume problem, then feel free to join!

I didn't take it that way. I'm just trying to learn too. I'm trying to figure out why even though the stretchy vessels there is the possibility of the volume problem. Haven't had the test, yet. Just know what my symptoms are and how my body is acting. Allot of what I read here is way over my head, but as I continue to learn ---maybe some day I can keep up with you brain wizzies. Hope to get your knowledge and figure out the puzzle along with you.

[Birdlady]

Add me into the low ADH and aldosterone group as well... My renin was normal though so go figure that one out!

[juliegee]

OK Sue,

Great question- I'll throw in my observations. The EDS/Connective tissue folks' stretchy blood vessels allow for excessive leakage of the blood through the blood vessels leading to hypovolemia. Theirs' seems the easiest to explain .

Another subgroup is those with MCAD/mastocytosis as the cause of their dysautonomia. Doctors surmise that we have hypovolemia because our blood vessels leak out during "reactions." Many of us suffer chronic mild anaphylaxis (unless we are treated aggressively) causing flushing, BP issues, tachy, and ultimate hypovolemia from the chronic leakage.

I have also seen a significant correlation among folks with BOTH MCAD/mastocytosis and EDS/connective tissue disorders. I have met MANY patients on multiple support groups that have both of these factors in addition to the autonomic dysfunction/hypovolemia. This includes me and many of my family members. For instance, a patient may have Marfan's, mastocytosis, and POTS or a multitude of combinations. In my family, we have an unknown connective tissue disorder, MCAD, and dysautonomia. These conditions appear to go hand-in-hand. Physicians are just beginning to study this correlation.

One other tidbit, while your lack of sweating is indeed indicative of dysautonomia.....so is greatly increased sweating. That's what my son & I exhibit. Whatever we drink is immediately expelled through our sweat glands.

Great question. I'm looking forward to others' observations. While we exhibit many differences, there are distinct similarities.

Julie

[MightyMouse]

I have a non-EDS collagen defect, but I'm close enough--and I have hypovolemia. My blood work is otherwise normal for the implicated hormones, except for a heck of a lot of catecholamines when upright (way more than normal).

[sue1234]

Mack's Mom--that all makes sense, about the leaky blood vessels. So, I'm still thinking here. If EDS and MCAD get hypovolemic due to leakiness, so that means that dysautonomia is secondary to them. I wonder what's up with us that don't have either one of those? We could be leaking, too, but why? Are we some undiscovered "secondary" also? If so, then we need the doctors to figure out our "primary" problem.

But even thinking this through for people with MCAD--correct me if I'm wrong. People with MCAD have lived "normal" lives, until they either suddenly had a severe reaction or a spiral down to MCAD symptoms. Why? What changed in their bodies that made them develop this?

I guess I am just wondering what came into our bodies that our bodies are over-reacting and causing us to come down with this?

What is causing us "secondary" dysautonomia?

Let me give an example with something I am familiar with:

I have had reactive hypoglycemia for 20 years. I had been able to manage it for the most part until last year. Checking my blood sugar during my episodes showed progressively lower numbers. In researching this, I found out about an insulinoma(insulin-producing tumor on pancreas that produces too much insulin and continually causes drops in low blood sugar). I was hospitalized and fasted for three days for this in January, and supposedly do not have this(some medical journals cite patients with this that only react with food, which I do).

My point is, until doctors years ago discovered that there was something like an insulinoma, I guess every patient was just diagnosed with low blood sugar(just a symptom anyway) and told to eat. They didn't realize that low blood sugar was not the primary cause, that the insulinoma was the primary.

I guess that's what I am getting at. What is that primary cause for POTS? I think if we can find that out, it will be much easier to either rid these symptoms or treat it much better. The primary is obviously going to be different things for different people, but I think it will still apply to most of us.

[sugartwin]

I have EDS and am not hypovolemic, and I honestly feel that someone who had hypovolemia on top of whatever causes the vasomotor defect in EDS would be looking at profound disability if not a life-threatening situation.

What I'm trying to say is that the latest research indicates that EDS patients' blood vessels don't leak or stretch or anything of the sort. Rather, they don't constrict properly. That's why I have POTS even though I'm not hypovolemic. There's plenty of blood to go around, it just never gets to where it needs to go.

Even if vessels were leaky, that wouldn't cause hypovolemia. Or at least, not strictly. Blood that leaks would still be picked up by a blood volume test because it's not like it exits the body entirely. Hypovolemia would have to come from some sort of error in whatever tells the body to retain the right amount of fluid and manufacture the right amount of blood cells.

[issie]

Good response, I knew the blood couldn't be leakey if it were, there would be terrible bruises on those who have this. I have EDS and do feel that I have issues with hydration. I've not had the test for this, but I know my body doesn't seem to take up water into the cells properly. I don't know if this is what the issue is with the hypovolemia or if this is an issue with electrolytes. I know that the kidneys play a major role in how fluids are processed and minerals like potassium, magnesium and salt are also key players. Depending on whether you have hypo or hyper pressures is a good determiner as to whether potassium or magnesium would be beneficial. One rasies the BP the other lowers it. Our bodies are so complex and with supplements, you have to be careful. You could be creating a problem, if you don't know what you're doing. Just because their natural, doesn't mean they are right for everyone.

As for disability, yes pretty much true. It's so frustrating, as you all know.

[juliegee]

Good response, I knew the blood couldn't be leakey if it were, there would be terrible bruises on those who have this. I have EDS and do feel that I have issues with hydration. I've not had the test for this, but I know my body doesn't seem to take up water into the cells properly. I don't know if this is what the issue is with the hypovolemia or if this is an issue with electrolytes. I know that the kidneys play a major role in how fluids are processed and minerals like potassium, magnesium and salt are also key players. Depending on whether you have hypo or hyper pressures is a good determiner as to whether potassium or magnesium would be beneficial. One rasies the BP the other lowers it. Our bodies are so complex and with supplements, you have to be careful. You could be creating a problem, if you don't know what you're doing. Just because their natural, doesn't mean they are right for everyone.

As for disability, yes pretty much true. It's so frustrating, as you all know.

So much of this is difficult for me to understand, but patients regularly "shock" (have no measurable BP) from anaphylaxis for instance and are NOT covered in bruises. The medical literature describes this as blood vessels leaking out. Where does the blood go, indeed???

While we are on the subject, how does water turn into blood??? We are encouraged to drink extra water to boost our blood volume- huh? How does that work?

I don't think you are alone in having EDS and hypovolemia and so far it's not been life threatening . My son is Dxed with both a connective tissue disorder & hypovolemia. Lie you, he is is incessantly thirsty and uses the bathroom constantly. I have posted a question re. this to see if there are others DXed with both conditions.

I think there are very few absolutes with dysautonomia. Sue is right in that it is secondary to something else for most patients. Sometimes that causal factor is compound. For instance, in my family, we have a connective tissue disorder AND a problem with mast cells. BOTH seem to cause the dysautonomia.

Julie

[firewatcher]

Part of the problem is an understanding of what is leaking: you can leak fluid, but not blood.

RBCs and all the "stuff" found in plasma is a suspension in water/plasma which can pass freely through cells or out of cells. Technically, Hypovolemia is a lack of total body blood. Technically, you are NOT hypovolemic when you are dehydrated, and you are only lacking water. Bruising is blood from broken/leaky vessels showing under the skin. If it is only water, it won't look like anything other than swelling or you could just lose it through sweat or urine. With POTS, you can be low in both blood and fluid, so you can be hypovolemic AND dehydrated. I have the inability to retain water (without meds) but my cells and solutes to create blood are all concentrated, so technically I'm really falling into the dehydrated category. If you are anemic, or had a blood volume test to determine that you are hypovolemic, you may NOT be dehydrated, just lacking enough total blood volume. It is a really technical medical definition and for POTS, the results of either are the same.

[juliegee]

Part of the problem is an understanding of what is leaking: you can leak fluid, but not blood.

RBCs and all the "stuff" found in plasma is a suspension in water/plasma which can pass freely through cells or out of cells. Technically, Hypovolemia is a lack of total body blood. Technically, you are NOT hypovolemic when you are dehydrated, and you are only lacking water. Bruising is blood from broken/leaky vessels showing under the skin. If it is only water, it won't look like anything other than swelling or you could just lose it through sweat or urine. With POTS, you can be low in both blood and fluid, so you can be hypovolemic AND dehydrated. I have the inability to retain water (without meds) but my cells and solutes to create blood are all concentrated, so technically I'm really falling into the dehydrated category. If you are anemic, or had a blood volume test to determine that you are hypovolemic, you may NOT be dehydrated, just lacking enough total blood volume. It is a really technical medical definition and for POTS, the results of either are the same.

Aha!!!! That makes sense-the water moves freely through the blood vessels. So, when you shock, you aren't leaking blood, just water...hence the reason many urgently have to use the bathroom during/after anaphylaxis.

My son and I (like many here) have a huge concentration of RBC's despite being SUPER hydrated during blood testing. Dr. Rowe says this is commonly seen in OI and CFS. Therefore, we appear to fall into your same category, Jenn- not technically hypovolemic, but lacking in total blood volume nonetheless.

BTW, my body is covered in telangiectasias (broken blood vessels/legs, face, trunk), which is common in connective tissue disorders. So, some of those red blood cells must be leaking along with the water.....

Thank you for the explanation. Best I've seen !!!

Julie

[issie]

Good response, I knew the blood couldn't be leakey if it were, there would be terrible bruises on those who have this. I have EDS and do feel that I have issues with hydration. I've not had the test for this, but I know my body doesn't seem to take up water into the cells properly. I don't know if this is what the issue is with the hypovolemia or if this is an issue with electrolytes. I know that the kidneys play a major role in how fluids are processed and minerals like potassium, magnesium and salt are also key players. Depending on whether you have hypo or hyper pressures is a good determiner as to whether potassium or magnesium would be beneficial. One rasies the BP the other lowers it. Our bodies are so complex and with supplements, you have to be careful. You could be creating a problem, if you don't know what you're doing. Just because their natural, doesn't mean they are right for everyone.

As for disability, yes pretty much true. It's so frustrating, as you all know.

So much of this is difficult for me to understand, but patients regularly "shock" (have no measurable BP) from anaphylaxis for instance and are NOT covered in bruises. The medical literature describes this as blood vessels leaking out. Where does the blood go, indeed???

While we are on the subject, how does water turn into blood??? We are encouraged to drink extra water to boost our blood volume- huh? How does that work?

I don't think you are alone in having EDS and hypovolemia and so far it's not been life threatening . My son is Dxed with both a connective tissue disorder & hypovolemia. Lie you, he is is incessantly thirsty and uses the bathroom constantly. I have posted a question re. this to see if there are others DXed with both conditions.

I think there are very few absolutes with dysautonomia. Sue is right in that it is secondary to something else for most patients. Sometimes that causal factor is compound. For instance, in my family, we have a connective tissue disorder AND a problem with mast cells. BOTH seem to cause the dysautonomia.

Julie

I don't think water turns into blood. If fact, I'm quite certain of this. What the water does is increase the fluid volumes. When you get an IV it is a volume expanser. It doesn't increase the amount of blood but adds volume or fluid to the blood. I think the other comment made explains that well, about the fluids leaking out, not the blood leaking out.