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Pianist

Test Complete - Hypovolemic

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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 impairment

Lifelong 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.

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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.

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have you ever been checked for sjrogens (SP?) disease? just wondering with your eye symptoms

why did your doc say florinef could kill you??

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Here's a lot of info on Sj?gren's syndrome

http://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.

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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.

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