People With Known / Suspected Hypovolemia

[andybonse]

Hi,

As per the title of this thread,

Have you had:

Renin / Angiotensin / Aldosterone tests?

Have you had a blood volume test?

Are you classed as normal red blood cells or high / low?

--

Do you drink normal and urinate a normal amount?

[Faintinggoat]

Hello, I've been tested and classified as Hypovolemic POTS. I have had all the tests done that you mentioned, and the most note worthy part of the test was that my blood and plasma volume decreased by about 50% when I went from laying to an upright position. My red blood cells are at normal levels however I had low MCV, MCH, and MCHC (without low iron) meaning that my red blood cells are smaller, and not as well oxygenated as they ought to be.

Fainting Goat

[sue1234]

I suspect low volume for me, as I seem chronically dehydrated. It has not been documented, these are just my suspicions. In nursing school, we learned to test hydration status on an adult by pinching the skin on the back of the hand and seeing how long the "tent" pinched up remains after being let go. I remember under normal circumstances, skin would literally flatten out by the count of 1. When I pinch mine, it can stay tented for a count range of 4-8. My skin slooowly falls down. I actually need to ask a doctor about this, because not one doctor has tested via this method(maybe it is not used anymore???).

Anyway, my aldosterone is low, renin normal, don't know angiotensin II. My RBC is always normal, so always wonder if, when properly hydrated, would I look anemic?

I drink ALOT, as I am very thirsty. I drink, on average, a gallon a day. I drink mostly water, but eat salty and potassium foods all day along with it. I do drink iced tea, as it is the only thing that helps the colon move things along, plus wakes me up.

And, I do pee ALOT. I've done a number of 24-hour urine tests over the years, and it has gone up to around 3500cc. It seems my intake and output pretty much equal, so I'm not losing extra fluids, I just don't seem to hang on to them.

[lulusoccer]

Faintinggoat - are you sure it was a Total Blood Volume test they did that decreased by 50%? Total Blood Volume Tests are ONLY done while lying down, so I'm thinking it was a separate tests they did, maybe something that checks for blood pooling..+ a 50% Total Blood Volume Deficit is insane and you wouldn't most likely be talking with us right now..I mean that is stage 3 hypovolemic shock you would be in a hospital.

Andybonse - I have been diagnosed with hypovolemic POTs. I have had the total blood volume test done at Vanderbilt Medical Center. I have a 19.3% total blood volume deficit. 20% plasma deficit and 18.6% red cell volume deficit. Despite my Hemoglobin and Hematocrit always showing normal, and my CMP/BMP always being great, it's all a little misleading since the Total Blood Volume is low, and plasma and redcell are almost still proportionate.

I have had aldosterone checked twice. The first time it was very low and the last time it was on the low end of the normal range. However, aldosterone is a very tricky blood draw to have done and errors can be made when having it done because it needs to go on ice, and it needs to be run ASAP so I'm not too sure how reliably those are. + all of these lab values are actually very much dependent on body positioning so if you are standing, lying, sitting, they are constantly changing so like my endocrinologist said one value doesn't actually mean much since it's "normal" for them to change so constantly.

My renin is always normal. I have also had angiotensin II drawn for a study at vanderbilt but I do not have those results yet. They do suspect that hypovolemia in POTs is related to the Renin-Angiotensin-Aldosterone system not working properly but they have not found the exact mechanism or cause yet, more research is needed.

And to answer your last question, I think I void way more than normal people and I drink a normal amount of fluid

[Faintinggoat]

Lulu you are correct, I got confused it was the blood pooling test that decreased.

[Raisin]

Low blood volume here as documented by blood volume test. I believe 16 percent down. No renin/ etc. tests run ....I don't believe. Test result said possible anemia? It said low red blood cell volume. I don't know what that means exactly.

[ramakentesh]

The most interesting thing about people with low blood volume in POTS is that treating it rarely totally corrects the underlying problem, suggesting it is an epiphenonema rather than a primary cause in most.

[Krissy21]

I have had a blood volume and hemodynamics test done that showed mild hypovolemia and moderate to severe blood pooling in my legs. I can't remember the exact numbers. All my blood counts have always been normal. I've never had my renin/ angiotensin/ aldosterone levels tested. I drink and urinate a normal amount.

[Chaos]

Mild hypovolemia documented by testing. Low red cell mass by testing. Low MCV and low red cell count frequently on labs. Normal to high hemaglobin. Normal thirst, drinking, urination.

When I did the testing for hypovolemia etc, they did it the same day as the TTT where I'd had a bad reaction. The doc, not wanting to risk a repeat performance, did a modified version of the hemodynamics test so didn't really get a good sense of how much pooling I get.

Haven't been able to get any of my docs to order aldosterone, renin, angiotensin ll, etc labs.

[sue1234]

Chaos, the 3 times my aldosterone has been tested was by 3 different endocrinologists over my 8-year Pots journey. Have you tried asking an endo?

[Chaos]

Sue- yep- asked my endo. He just rolls his eyes when I mention anything about the HPA axis and POTS. He claimed to be familiar with POTS when I first started seeing him, but haven't been impressed with his knowledge. He follows me for my thyroid and hypoglycemia issues and that's all he really is interested in discussing. I'd try another one, but have a fellow POTSie in town who literally has been thru every endo around here and hasn't found any better so am sticking where I am for now. Sigh.

[sue1234]

I understand the *sigh*.

[Freaked]

I strongly suspect hypovolemia, but even regular POTS is considered a 'rare and weird' diagnosis in Ireland, so you can forget about subtypes. I did ask a doc to order an aldosterone test, but then I was too lazy to go into hospital and do it since no doc would have been very interested in the results anyway. I don't think my issue is blood pooling, at least.

[Tuesday]

My cardiologist diagnosed and treated me with low blood volume, with no additional tests other than a tilt test, echo, and 30 day holter. I also had extremely low blood pressure and severe palpitations and tachycardia prior to treatment.

My body does not hold onto water at all. Within about 10 minutes of drinking anything, I'm in the bathroom. It's not uncommon for me to make 8-10 trips during a work day. Drinking 100 oz a day was a minimum, and I would often still feel dehydrated.

I seem to have pretty much eliminated my low blood volume with a combination of Fludrocortisone and salt tablets, though. At least, it doesn't seem to be an issue anymore, and now my blood pressure is high and I'm being treated with an ACE inhibitor. I can drink a more 'normal' amount of water through the day and it seems to stay where it's needed, and I'm *much* less likely to get dehydrated.

[andybonse]

Tuesday, im like you always peeing 10 mins after a drink etc. I just started florinef slowly but wow I feel better!

[sue1234]

Andy, would you mind explaining how you feel better? I am supposed to begin Florinef soon, just waiting until I feel better and back to my "normal" so I know how Florinef affects me.

[Raisin]

Yes...I would like to know too! I have been very nauseous as of late and I am wondering if it is from my low blood volume. It may be from Pots in general but I am hoping that if I increase the plasma....maybe decrease the nausea?

[Relax86]

I was diagnosed low blood volume, retest showed low end of normal. I have anemia. I was also told my RBC's die a little early (???) but I can't remember how or why that was suggested or tested. I had an endometrial ablation (I was significantly improved at that point but still easily suffering flares) and since have made even more recovery. I do believe low blood volume was/is the reason for my POTs but why I have low blood volume - I have no idea. I was 22 years old when I started being rejected to give blood, I was 25 when I was diagnosed with low blood pressure. Always prone to POTs-like flares but never like the 2009 flare and the 2012 which was the flare that brought me down. Hoping the ablation helps to always keep symptoms at bay. During the bedridden month it seemed like my body was unable to manage fluids. My body seemed to forget how to manage the system....I always felt like I had a bladder infection. I insisted I did - test was negative. The pressure and urge to urinate would be worse at night when I would try to sleep. Good luck to you Andy

[corina]

Great to hear you're doing better Andy!

[ramakentesh]

If blood volume was the only problem then florinef would cure pots.

[sue1234]

In light of the new study posted by Naomi this morning, the autoantibodies that effectively cause us to have more norepinephrine in our systems would then be the reason we don't hang on to fluids. Which sounds promising...if they can rid us of the antibodies, then things(RAAS) will go back to normal(hopefully, but at least there is now hope!).

[Tuesday]

If blood volume was the only problem then florinef would cure pots.

True. There's a lot more to POTS. Florinef has helped a lot of my major symptoms, but I still have a lot of issues. Florinef has eliminated palpitations and my overwhelming sense of dehydration, but it doesn't do much for my energy/fatigue, brain fog, or digestive issues. But it's a huge burden off my plate of symptoms.