low blood volume?

[gossamer4448]

Whats the  symptoms of this ? can you have this but not dysautonomia ?   is it similar problems ? I cant find much about it online oddly . 

[bombsh3ll]

4 hours ago, gossamer4448 said:

Whats the  symptoms of this ? can you have this but not dysautonomia ?   is it similar problems ? I cant find much about it online oddly . 

This is something that interests me as I have all the symptoms of severe volume depletion & initially responded dramatically to volume expansion with licorice root although the effects of this were not sustained. 

Symptoms of hypovolaemic shock: 

• Rapid heartbeat.
• Quick, shallow breathing.
• orthostasis
• Feeling weak.
• Being tired.
• Confusion or wooziness.
• Little or no pee.
• Initially normal or high BP esp diastolic due to increased vasc resistance. More severe volume depletion - low blood pressure.
• Cool, clammy skin.

Note in POTS urine output is increased rather than reduced as the underlying cause of our volume depletion is usually inappropriately high urinary sodium & water loss. 

Are you able to get a blood volume analysis? I attempted one in the UK but it failed due to technical problems. DAXOR is a company in the US that have an accurate blood volume analyser which is used by many of the main hospitals. I wish they would branch into the UK so I could prove my low volume theory. 

B xxx

[gossamer4448]

yeah This is all i could find but thats extreme emergency case. I mean just low blood volume chronically.

[bombsh3ll]

Hi there are some studies by Satish Raj and others documenting reduced blood volumes of up to 20% in POTS patients, with the largest deficit noted to be 27%. That would equate to stage 2 hypovolaemic shock, but in our case it is chronic. There is also an older paper by Fouad & co on chronic idiopathic hypovolaemia. The underlying pathology is not entirely clear but appears to relate to a lack of fluid retaining hormones ADH and aldosterone. My own levels of these are virtually non existant, and I pass up to 6 litres of urine per day. 

This results in some or all of the above symptoms, with which we survive but are miserable. 

Have you tried any treatments aimed at increasing blood volume and have they helped?

B xxx

 

 

[toomanyproblems]

One indication of chronic low blood volume is a problem I've had for at least 12 years is a relative polycythemia. Translated means too many red cells but relative because of low plasma volume making the cell fraction disproportionately high. My plasma volume is at least 20% too low if judged by high red cell count. This has been a consistent finding over the years. No amount of florinef corrects this in me. My sodium is normal. There must be some other factor to correct this low blood volume in POTS patients such as myself that we are not thinking of. And something tells me we will have to solve the puzzle ourselves because I don't see any help otherwise.

[bombsh3ll]

1 hour ago, toomanyproblems said:

ne indication of chronic low blood volume is a problem I've had for at least 12 years is a relative polycythemia. Translated means too many red cells but relative because of low plasma volume making the cell fraction disproportionately high.

This is also the case with me, we've chatted before about this. Toomany, have you ever tried desmopressin? 

I am still hanging in there re licorice root withdrawal, BP usually about 105/70 now, electrolytes steady but sodium low end. Still permanently presyncopal, just the same as when my BP was dangerously high, so for me it is def related to low cardiac output than BP. Planning to retest aldosterone after 2m.

I am wondering about combining low doses of florinef and desmopressin. The latter causes me less side effects and noticeably reduces the polyuria, but I can't take it alone due to the risk of hyponatraemia with mineralocorticoid deficiency. 

B xxx

[toomanyproblems]

9 hours ago, bombsh3ll said:

This is also the case with me, we've chatted before about this. Toomany, have you ever tried desmopressin? 

 

I have not. I doubt any of my docs would want to rock the boat with it wrt possible hyponatremia, given my Addison's. I don't have a POTS specialist. But even if I did, they would probably feel they had to defer to my endo. I would need a lot more monitoring than I'm getting now and I'm already a high maintenance patient 😕