Please help on how to raise blood volume

[ShupeJL10]

So I have tried everything. Fludrocortisone made me pee more, desmopressin only lasts a few hours and still don’t feel great in that. Right now I’m doing IV saline 2-3 times a day and that’s the only thing to make a dent and it’s for a very short period of time. Via a Daxor volume study I have BOTH low red cell and plasma volume of about 25%. It’s getting very scary as nothing is working for me. I’ve tried to get of albumin and have struggled to. If anyone can let me know of other things to try or maybe certain combinations, I would be very pleased

 

thanks

[Sarah Tee]

Erythropoietin is something you could ask about, but it is not very commonly used:

https://www.dinet.org/search/?q=Erythropoietin&quick=1&type=cms_records18&item=100

Here's one article by Blair Grubb et al:

https://pubmed.ncbi.nlm.nih.gov/20838326/

Link to full PDF of article:

http://utmc.utoledo.edu/clinics/hvc/syncope-center/pdfs/Erythorpoietin.pdf

 

I am sorry you aren't having any good results with everything you've tried so far.

[ShupeJL10]

@Sarah Teethank you so much. And yes my doctor wants to do epo but not before my plasma volume comes up. Both my red cell volume and plasma volume are about the same and if we just drastically increase red cell he said that’s a problem 😕

[Sarah Tee]

Oh dear, I'm sorry to hear that. (I haven't had low red cells so didn't realise about the plasma.) I guess it is good that your doctor is willing to order it if it becomes possible. Has he not got any ideas on how to increase your plasma?

This video might have some relevant info for you, although I'm not sure whether it covers low RBC and plasma situations.

https://vimeo.com/540671549

25% is low. You must be feeling awful. My thoughts are with you, not that that's much help. My dad has contacted Dysautonomia International and suggested a lecture on IV albumin so that it can eventually become better known and easier to access.

Do you live in the US?

[ShupeJL10]

@Sarah Teethanks for your support. Yeah average pots patient is 13% low according to many autonomic doctors I’ve talked to so I’m double and in both RBC and plasma:/ which can be common too. Your dad is smart! We are trying to get albumin approved but it will take months. And we try fludrocortisone and desmopressin together but that’s causing issues if it’s own, so I’m lost I just do daily iv saline but it doesn’t last. I’ll give that video a watch now:)

[Sarah Tee]

@ShupeJL10, I'm sorry the albumin is going to take a while to get approved (or not).

Sorry if you've already mentioned this is another post, but do you have any indications of auto-immune or auto-inflammatory disorders, e.g. antibody blood tests, symptoms? Just a suggestion of another angle to pursue if you haven't looked at it already.

And, one other thing, have you tried raising your bedhead?

Sorry if these are things you've already tried. It's hot here in Australia and my memory isn't going too well today! I remember you have trouble with unwanted water retention as well, so raising the bedhead may or may not be problematic for that aspect.

If I understand it right, some people in the US (if that's where you are) can make an appointment directly with a specialist. Maybe you could see a haematologist if you haven't already.

I do hope you "catch a break" soon.

Sarah