Blood Volume?

[firewatcher]

For those of you have confirmed hypovolemia, how do you know that you are staying "full?" Do you use weight? Use symptoms? Heart rate? I don't know that I am hypovolemic, but I have been told that I am, even though no testing was done. Honestly, I'm afraid that they are going to try to "bleed" me to lower my hematocrit, but if it is a volume issue, that would be a really bad idea.

[MomtoGiuliana]

I have also been told I am hypovolemic. I can tell by how I feel -- when I am volume-reduced I feel "POTS-y"--higher heart rate on standing, weak feeling, etc. Also I notice that my veins are rather sunken (although this can be a bit tricky depending on the ambient temperature). If it is signifificant medical practitioners can tell by looking at you (veins, etc) if you are volume-depleted.

[Tuesday]

I can tell based on how I feel. When I am low, I feel sluggish, my mouth is dry, I get many more palpitations, heart races, headaches, weakness, and dizziness. I tend to look a lot paler and get cold a lot more easily, too. It wasn't until I knew what it felt like to be full that I knew what to look for.

[lissy]

Hello,

I have been Dxed being hypovolemic had the testing (*not severely) but I always wondered why build blood up when you can get a transfusion that may be a stupid question... but I got sicker and sicker with every child delivery I had and also hemorrhaged pretty severely and they probally should have gave me a transfusion which could have prevented the decline to begin with...

Has anyone been actually been dxed being hypo, built it up and recovered? (Or is something once low you must always keep building?) Like a type of total anemia..

Tuesday---I have a question you say you have been able to tell the difference as when its low and full does it fluctuate? Or have you recovered and now you can see the difference?

I was told that flornief builds the volume and the symptoms decrease almost completely and can come and go in times of stress (body stress, illness, menstrual cycles) I can't speak on that because I have not tried it yet ,because I wanted more answers medically to make sure I wasn't going to affect my health even more because something may be causing this and something may have been overlooked and I'd be covering my bodies natural clue to what the real problem is. If that makes any sense. I have had times of feeling almost completely normal that lasted months at a time so can your volume increase on its own or are the symptoms not really based on volume? Too much thought for me right now so I'll end with that:)

[crowebirds]

My daughter just completed two 24-hour urine tests for Heavy Metals and Porphyrins. The amount collected was quite telling. She only had about 8 - 10 ounces of output for the entire day on both days. Low blood volume has a connection to dehydration.

She breaks out everyday in addition to her DYS and this leads to Hypovolemia.

[sue1234]

TLC's mom----8-10 oz. of urine total for the day? What did she drink for the day? That is an extremely low output. That ought to be a telling sign for the doctors.

My recent 24-hour volume was 3500cc, or roughly 110 oz. But, that is a little higher than normal.

[crowebirds]

She drinks 48oz of fluid every day. It spans through out the day because she has a problem with not being able to consume too much at a given time. Now that it is winter, she breaks out in severe hives nearly every day. Her skin retains a lot of fluid when she has these reactions. She usually will have one or two cups of sweet tea (a southern thing), milk for lunch and gatorade the rest of the time. We are trying to increase her consumption, but it is difficult with early satiety.

[Lovebug]

I asked my doctor about the blood transfusion too. He's so funny...he said the medical community does more harm than good to us Dysautonomics and that it isn't worth it to get a blood transfusion. In answer to the question: I think most people know due to symptoms and possibly urinary output. When I first began fluid loading (4L/day), I would urinate lots of clear urine. I started a new med (Celexa) which made me feel much better and it seems I'm hanging on to my fluid as I don't require as much water and my urine is more concentrated and at a lower volume.

[kjd111]

My daughter actually just had a blood volume test done - we flew to New York for it as it is a specialized nuclear medicine test, and despite living in a major city, we don't appear to have anyone that does it here. It has been a revelation to say the least - 21% blood volume deficit, 17% plasma volume deficit, 29% red blood cell volume deficit and a hematocrit of 33%. In answer to the original question, she does florinef, gatorade and a host of other things and never feels "full". We think its because she doesn't have enough catecholamines to keep fluid from "leaking out". One thing i will say is she has been on a trial run of octreotide for about 4 weeks. It isn't a cure all, but she went without it this am and almost passed out - it appears to be having a positive effect i'd say.

Kate

[sue1234]

Everytime I see this title, I feel like saying "Fill er up!" I wish it was that easy.

kjd11--that is exactly why I would love to have a volume test. I want to know all those things!

[Tuesday]

Tuesday---I have a question you say you have been able to tell the difference as when its low and full does it fluctuate? Or have you recovered and now you can see the difference?

No, it does not fluctuate. I am pretty much always low. However, after receiving IV fluids in the emergency room I could tell a huge difference - I felt normal for the first time ever. Now, I am on Florinef and it helps a great deal. I have been able to cut down on my midodrine since going on florinef because the increase in blood volume helps regulate my blood pressure, too.