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Low Blood Volume - Hypovolemic Pots


deucykub
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I'll preface this with I'm no doctor, and because I've been trying to figure out what is going on with my body through research, I probably know just enough to be dangerous. :):)

In addition to a lot of the typical POTS symptoms, I also have recurrent cyanosis. My fingers, lips, and upper torso bilateral lady areas turn blue regularly. The docs say it is caused by POTS, but I can find very few people that have it! The cyanosis is not related to temperature, and Raynaud's has been ruled out.

All this to say, I've been trying to figure out WHY they say the cyanosis can be POTS. Essentially everything cardiac or pulmonary related had been ruled out. One doctor hinted at it being caused by low blood pressure, and all my research trying to link those two bottomed out. Finally, in researching low blood volume I found a link to the cyanosis. Low blood volume (hypovolemia) causes low blood pressure and if severe enough can cause cyanosis. Lots of studies have linked hypovolemia and POTS, so that's fairly common knowledge.

Researching hypovolemia led to this site (Hypovolemia), which lists the symptoms of hypovolemia as "Symptoms & signs : astheny [weakness/debility], fatigue, muscular cramping, thirst, orthostatic pressure instability, organ ischemia [shortage of blood supply to an organ] (=> oliguria or prerenal acute renal failure, cyanosis, chest or abdominal pain, confusion, obnubilation [to cloud/obscure] of sensations), mouth and skin dryness, decreased jugular pressure, orthostatic hypotension and tachycardia => hypovolemic shock." Do a lot of those symptoms sound familiar?

Now here's a table of severity of hypovolemic shock due to blood loss from the same source (Hypovolemic Shock - the table is bigger on the actual page):

hypovolemic%20shock.jpg

What stood out to me was when going into hypovolemic shock, the symptoms are remarkably similar - tachycardia, reduced arterial pressure, increased breath rate (shortness of breath), pale/cyanotic skin, confusion, and anxiety.

Could it be that our bodies are going through a form of hypovolemic shock without actually losing blood through trauma? When we lie down (or faint), our bodies self-regulate so the results aren't tragic. But if our bodies are essentially going into shock every time we are upright, well no wonder we feel so crummy and have lingering symptoms in the supine position like brain fog and fatigue.

This was a total "A ha!" moment for me, and I just wanted to share. It could be absolutely wrong, but I would love to hear what you think about it!

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According to my blood volume measurement, I was in class II when I was really sick. Ironically, I wasn't anxious or agitated, probably because it had gone on so long that I was used to it. Of course, the complete absence of anxiety or agitation proves that my problem was psychological. Not. And they laughed at me when I asked for hetastarch!

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Yep. That is exactly whatt my PT says about POTS/NMH patients. We are in a constant state of medical "shock." It is as though we are loosing blood volume through a bleed, but we're not. Great research!

Julie

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Thanks, Deucykub, for all of this info!

This might help healthy people to understand what we're going through. I can now tell people that I am constantly in either stage 1 or stage 2 of hypovolemic shock! Maybe then they'll realize that I'm not lazy and making things up!

Rachel

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I've often thought about this and wondered how POTS exactly does differ from this. Is POTS exactly hypovolemic shock? For one thing, wouldn't one be necessarily iron depleted in hypovolemic shock? Why don't symptoms of POTS completely resolve with rehydration--b/c we are still in shock? Also, many of us have tachycardia that meets the class IV definition without the class IV symptoms.

Aren't doctors trained to identify hypovolemic shock? Isn't hypovolemic shock at some point life-threatening?

Katherine

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If you lose enough blood, etc. hypovolemic shock is life threatening.

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The veins in many POTS patients don't constrict properly, and many of us experienece bright red or blue fingers, toes or other body parts. This is not necessarily because of hypovolemia - it could also be because of autonomic neuropathy (which causes the problems with constriction). Although many of us are mildly hypovolemic, I am not sure about hypovolemic shock. You can get a blood volume test if you're worried about this.

-Rita

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Rita--true...and I believe that a lot of POTS symptoms are explained as much by pooling as by actual volume reduction.

I would be curious to know--for the few of us who actually have ever had a blood volume measurement done--what % of volume reduction you had? 15% sounds really high, but I have no idea what is found in POTS patients typically.

Katherine

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I find this post very interesting, though I cannot add important information to it, I would like to make a question to you if you do not mind.

How do you feel your hands when you have to get something out from the freezer? Is it painful for you?

Does it sound silly? I have to put my gloves on in order to be able to get something from the freezer. If not, I feel my fingers become extremely cold and it is extremely painful.

Why does it happen? Any idea? :lol:

With regard to your post, I suspect that I have hypovolemia. I had a terrible experience during & after my last blood test (feeling dizzy, nauseas, chest pain, abdominal discomfort, lightheaded, thirsty, confusion, tachycardia, mouth dryness, headache...) It took hours to recover from the blood test and I had to drink plenty of fluids + Aquarius to feel better... I never want to have such an experience again and I feel really scared when I think about another blood test in the future. :)

When I remember it, I think I had to go to the ER that day to ask for help and after reading your post I realize that I could have experienced something really serious: an hypovolemic shock.

I will never stay home when feeling this way after a blood test and will visit the ER if it happens again.

Furthermore, they would have been able to confirm my reaction. If I want them to confirm hypovolemia now, I will have to go through all the blood test again... And :(;) I admit it, I do not want to feel so sick again, it scared me a lot...

Those of you who have hypovolemia. How do you manage with a blood test?

Can I ask them to be more careful with the blood test because I suspect I have hypovolemia (without having a diagnosis)? What can I do if they refuse taking measures to help me? Should I avoid the blood test?

I would be grateful if you could answer my questions. I just got an app. with a cardiologist (for February) and I am trying to get all the information written down that I want to talk with him... (I am pretty sure he will be asking for a blood test :huh: ). I have no idea if he knows about POTS, but he is the only Cardiologist I have been able to get an appointment with after many months looking for a cardiologist who knowsn about POTS... I will try.

Thank you for your answers, I am looking forward to reading them

Love,

Tessa

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Tessa--I can see why you would be alarmed after reading these posts. POTS is not considered life-threatening. However, if you develop worsening or new symptoms it is always wise to contact your physician.

A normal blood draw would not produce life-threatening hypovolemia. POTS patients are often highly sensitive to even small changes in their environment. It could be that your worsened symptoms following the blood draw had to do with a response to the stimulation of the blood draw as much as to any loss of blood that occured.

When POTS symptoms come on, it is always wise to increase fluids and salts, as your doctor has recommended.

I believe I have hypovolemia--at least at times. I have not noticed feeling worse after a blood test. But I did actually faint once after getting a shot. Somehow the stimulation of the shot set off a chain reaction in my POTS-y body that led to me losing enough blood pressure to cause me to faint. I suspect your reaction to the blood draw was similar.

Talk to your doctor about your concerns!

Take care,

Katherine

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Thank you Katherine.

I see from your post that it could have just been a POTS reaction. Thank you for answering my question.

:lol:

I hope to find a doctor soon who knowns about POTS. :(

I am looking forward to sharing my concerns with him/her.

I have to wait and see. My app. with a new Cardiologist in February will tell me if he/she knows what I am talking about.

Love,

Tessa

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Hi, everyone. Thanks so much for brainstorming this with me!

My POTS-y brain is not nearly as good at communicating as it used to be so I want to clarify that I do not think that POTS is hypovolemic shock.

Also to second what Katherine said - POTS is not life threatening. I didn't make that clear enough, either, I think. Tessa, I am so sorry if my post made you think that in any way.

However, what our bodies go through seems very similar to hypovolemic shock. Even without blood loss or confirmed hypovolemia, when the blood drops to our legs and away from the vital organs, it seems like the reaction to that blood "loss" parallels hypovolemic shock.

Because we can self-regulate this reaction by lying down (or our body forces regulation by knocking us to the ground :lol: ), the blood "loss" that is experienced in our upper bodies is typically short-lived. I read somewhere - I wish I could remember where - about a doctor who discussed a POTS patient that wanted so desperately not to fall over when she fainted that she managed to prop herself up in such a way that when she fainted, she stayed upright. The results were almost fatal (again POTS is not fatal) because of the lack of oxygen/blood flow to the brain. The moral of the story was our bodies knock us down for a reason!

Katherine, you asked some really great questions that I would like to know the answer to, also! I'm not sure about iron loss in hypovolemia. It seems like iron levels in the blood would be a ratio to the amount drawn rather than absolute content in the body. I would think that with blood loss or hypovolemia that the ratio would remain the same but the total content would drop? Does anyone know?

One theory on why symptoms don't resolve on hydration may be the stress our organs experience happens several times a day - everytime we have to "powder our nose," prepare a meal, answer the door... stand up for any reason our blood pools leaving the vital organs with less oxygen. True hypovolemic shock happens once, is resolved, and the organs recover - is that right? Does anyone know how long it takes to no longer be symptomatic with actual hypovolemic shock? If our bodies are bouncing in and out of a shock type state, it would seem they never really get the chance to fully recover?

As Rachel suggested, maybe it would help healthy people understand why we feel so sick all the time. I know I'm going through a bureaucratic nightmare at work because they just don't get it. :(

------

On the topic of hands and toes... :) You're right, Rita. I don't think I'm actually in hypovolemic shock, but understanding that blood loss causes cyanosis helped me understand how less blood in an affected area (kind of a localized hypovolemia due to constriction problems or pooling) would also cause cyanosis.

Pat, I don't experience any pain with the cyanosis. Have you been checked for Raynaud's? (Although, the fact that it is relieved by ice is really unusual and doesn't fit with Raynaud's...) Cyanosis is usually considered a pretty serious sign until they determine otherwise. Have you talked to a doctor? If not, you might want to consider that.

Tessa, it's really interesting that you should ask about pain getting things out of the freezer (no color change with that for me, though). I've had that since I was about 17, when I developed fibromyalgia. For me, the pain on touching something cold is caused by the nerves in my fingers sending the wrong signal to my brain. Instead of sending the "wow this is cold" transmission, it sends the "oh dear God this really hurts!" transmission. I participated in some research on how the nerves sense pain without an actual pain stimulus at the University of Florida (Dr. Roland Staud). Pretty interesting stuff!

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Hi Deucykub,

Thanks for the reply. I did see RA Dr. Funny thing is I test positive for RA have abnormal sed rate and ANA, but don't have RA. (because my joints are normal) I was tested for "all" the other autoimmune conditions that they have tests for. Negative.

My fingers don't go white or red- as with Raynauds. The go blue and are extremly hypersensitive to touch- but Ice feels good. So far episodes are brief and easy to manage. I would like to know what it is tho and surf around from time to time if something "rings a bell" like what you descibed.

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Thank you Deucykub for clarifying your post, though I think I understood it clearly. Do not worry, I did not think you were saying that POTS is hypovolemic shock.

It was not your post that scared me but my own experience.

If I suffer from hypovolemia and with all the previous mentioned symptoms, my conditions were surely worse and that is scary too.

It is indeed a similar situation to hypovolemic shock, even without blood loss (as it was only a blood test).

With regard to getting things out of the freezer, I have no fibromyalgia (at least not that I know). If it is the wrong signal to the brain or not, the only thing I know is that it hurts a lot! :o

I have not noticed if my skin changes colour because when it happens, I usually put them close to the toaster to get some warm temperature back... (I think that my fingers are reddish when they recover the normal temperature, though I should check that)

(Interesting the study you mention)

Tessa

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this is off a "Healthline" website

"exposure to the cold causes the fingers, toes, ears or nose to become white, due to a lack of blood flow in the area. They then turn blue, which is a result of tiny blood vessels dilating to allow more blood to remain in the tissues. When the flow of blood returns, the area becomes red and then later returns to normal color."

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  • 12 years later...
On ‎1‎/‎23‎/‎2007 at 12:19 PM, MomtoGiuliana said:

Tessa--I can see why you would be alarmed after reading these posts. POTS is not considered life-threatening. However, if you develop worsening or new symptoms it is always wise to contact your physician.

A normal blood draw would not produce life-threatening hypovolemia. POTS patients are often highly sensitive to even small changes in their environment. It could be that your worsened symptoms following the blood draw had to do with a response to the stimulation of the blood draw as much as to any loss of blood that occured.

When POTS symptoms come on, it is always wise to increase fluids and salts, as your doctor has recommended.

I believe I have hypovolemia--at least at times. I have not noticed feeling worse after a blood test. But I did actually faint once after getting a shot. Somehow the stimulation of the shot set off a chain reaction in my POTS-y body that led to me losing enough blood pressure to cause me to faint. I suspect your reaction to the blood draw was similar.

Talk to your doctor about your concerns!

Take care,

Katherine

So I realize this is very old, but I have POTS. One of the severest cases my doctor has seen. Prior to treatment my standing test was 75 laying to 189 standing. I am chronically hypovolemic, how much is hard to say. I get 2-3 L of Lactated ringers every few days. I can only get 4-5 vials of blood drawn, and only that while on regular IV treatment. It will begin with hot sweats and nausea, if we do not immediately stop and pack me with ice and start an IV I will begin vomitting. The one and only time the nurse continued drawing blood, I fell unconscious laying down and was put in the ICU. So while POTS can very rarely cause this level of symptoms, it actually can. My doctor is a autonomic specialist and she has had a small handful of patients like me. 

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