Pianist Posted April 4, 2007 Report Share Posted April 4, 2007 I had all of these symptoms that I was dehydrated, but my electrolyters were balanced. Doctors (including nephrologist, 2 endocronologists) seemed to always roll their eyes when I asked about chronic low blood volume. Well, I did a bunch of research, convinced my family doc to send me to the BVA100 test at a hospital 3 hours away and guess what:Turns out I'm 10 percent low (about 530CCs low). This is after taking Desmopressin (which increases blood volume) everyday for 4 months.. so I'm wondering what it was before. DDVAP was like a miracle cure (even curing some lifelong problems) but most of the symptoms have returned over the past months.Does anyone know can be done about low blood volume? (b4 taking this test, I asked about Florinef - both my family doc and an endo said it could kill me)Does anyone know of any good resources for chronic hypovolemia?Symptoms starting 2 years ago (gradually got worse): Floaters, severe dry eye, eye pain, very dry mouth/throat, photophobia, 24 hour migraines, cognitive impairmentLifelong symptoms: Fatigue/fatigue attacks, the shakes in the afternoon if I don't eat a snack, getting easily overheated when exercising, wierd sudden episode that occasionaly happens when I exert myself too fast (head pressure and pain/rapid heart beat/thick feeling in heart- lasts for a few minutes), extremities fall asleep very easily. Quote Link to comment Share on other sites More sharing options...
dano2718 Posted April 4, 2007 Report Share Posted April 4, 2007 Hey there - I'm not sure about blood volume enhancement with Florinef but I just had to congratulate you on your research, persistence, and getting an objective test abnormality. Way to go!! Hopefully this will steer your treatment in the right direction. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted April 4, 2007 Report Share Posted April 4, 2007 have you ever been checked for sjrogens (SP?) disease? just wondering with your eye symptomswhy did your doc say florinef could kill you?? Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted April 4, 2007 Report Share Posted April 4, 2007 Here's a lot of info on Sj?gren's syndromehttp://www.sjogrens.org/Ask you doctors if you can use licorice tea. If you can use licorice, be sure to load up on salt and water (to help it work) and eat lots of potassium rich foods (to prevent hypokalemia). You can get licorice teabags or licorice extract from the health food store. Just make sure that it does have glycyrrhizin in it. There is a product called DGL (deglycyrrhizinated licorice) that has the active ingredient removed from it. Licorice does more or less the same thing as Florinef. Florinef pretends to be aldosterone. Licorice deactivates an enzyme in your kidneys, allowing your normal cortisol to act in the kidney as if it were aldosterone. Aldosterone is an adrenal hormone that enables your kidneys to keep salt in your body. The lack of aldosterone causes Addison's disease, which is what JFK had. Quote Link to comment Share on other sites More sharing options...
Pianist Posted April 7, 2007 Author Report Share Posted April 7, 2007 Was checked for Sjogren's last year - negative. Endocrinogists pushed for test again this year because I have the classic symptoms (my lacrimal glands that produce tears have all but shut down), dry throat and mouth, etc.. I was tested again a couple of weeks ago - and the doc didn't call (assuming negative), but I'm supposed to do a lip biopsy soon, which should be a definite yes or no. Quote Link to comment Share on other sites More sharing options...
Pianist Posted April 7, 2007 Author Report Share Posted April 7, 2007 //why did your doc say florinef could kill you??When I mentioned it he looked it up and must have seen the possible side effects. Quote Link to comment Share on other sites More sharing options...
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