Pianist

My vitamin D was 13. The endo said it was half normal, which isn't really accurate. Normal is from 32-100. So it's actually 20% of the middle of that range (66%). He said "sorry we can't find the answer to your problems.. the vit D is more of a long term thing having to do with your bones". Since then all of my symptoms are disappearing. So, it's possible they have found it by accident without realizing it. Scary. By they way, I researched it and new research shows vit D is also a hormone and supports your immune system - and actually tells cells what to become. In my case it looks like it was creating autoimmune like problems.. my immune system attacking my tear glands. Also, as a side note. If this is truly the problem, then the ramifications are startling. I almost very easily ended up on a laundry list of meds.. Lexipro, Ambien, Florinef, Desmopressin, Lorazepam, Restasis, punctal plugs in top and bottom tear ducts.. and still feeling miserable with the meds doing God knows what.. I wonder how many people are out there who have something as simple as a vitamin deficiency and are on a bunch of medicines causing a ton of side effects and don't even know. Wow.

It's been 2 days since taking the Vit D suppliment and many of my symptoms are disappearing. I'm keeping my fingers crossed. Even if this is it.. the question remains why was I hugely deficient in Vit D (I'm outside alot and eat a good diet. Also, Vit D isn't supposed to have much to do with the major symptoms I;ve been experiencing (although I've read some research that says Vit D has to do with your nervous and immune systems.)

After explaining some symptoms I've been experiencing to my endocrinologist (dizziness, esp when chaning positions) he measured my blood pressure while I stood up without using my arms. He saw something "wierd" - I think my BP spiked upward. From what I've researched orthostatic hyoptension is when the BP falls... so what the heck is it if it goes up? He's sending me for "ANSAR" testing.. sympathetic/parasympthetic test. Thanks

//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.

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.

After 2 years of tests, upon tests and a dozen doctors, my endocrinologist says I got half of the normal Vitamin D. She doesn't seem to think that it would cause all of the symptoms I'm having. It's strange because I'm outside more than most people, and I eat a good diet. Anyway.. does anyone here have that? and know what they effect of that would be? What exactly does "half normal" mean? Symptoms: 24 hour migraines, severe dry eye + internal eye pain, major cognitive impairment, waking up feeling very dehydrated, dizziness. BTW: He gave me a prescription for 50,000 units(?) of Vit D once a week.

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.

I was wondering if anybody else out there got severe dry eye at a young age. About 1.5 year ago I started getting all kinds of wierd eye problems (before a bunch of other stuff started) dry eye, eye strain, photophobia, high interocular eye pressure. I'm 35, my neuro-opthamologist said I have the dry eyes of a 75 year old.

Lisa, I noticed that you aren't taking Florinef and it seems like alot of people on this site are. Did they ever consider this for you?

Did they determine that congentital heart disease was causing the hypovolemia? Also, I was wondering if it's possible for blood volume to fluctuate? This may be worrying to much, but I was wonderingif it's possible that the BVA-100 test will show normal if I go at the wrong time, and then all that time and money was wasted.

Has anyone had tests done where the doctor marks "CFS" as the reason for the test. I'm wondering if health insurance would cover the test. Thanks!

Do any of you know of anyone going on employment disability from CFS/POTS?

For years I would almost pass out when getting up too quick. It was getting worse and then about a year and a half ago I started having all of these other symptoms: eye dysfunctions related to the brain, severe brain fog, dry mouth/throat, random heart racing. My whole life I've had a normal blood pressure. All of a sudden a year ago I had a high blood pressure and it's been that way ever since (a few random times it's been low). Since then I haven't had the "woozy", almost passing out episodes when standing up. It seems like my body is vasocontricting to keep the low amount of blood in my system circulating. Has anyone encountered this? (your system increasing your blood pressure in reaction to low blood volume?). Thanks.

Do you mean it was $1500 after insurance? that was the part you paid? So, did they actually tell you what your blood volume was (in liters, etc)? P.S. I've slowly started to get better over the past few days. I'm still not exactly sure what happened.

There's many reasons to believe Florinef might help me (see below). I saw my family doctor and asked him if he thought I should go on it. He looked it up in his book and said he didn't want to put me on it because it could be dangerous (I think he saw the part about Potassium). I've read a bunch of articles from doctors saying the opposite, notably this one: http://www.pediatricnetwork.org/medical/CF...experiences.htm So have any of you been warned that Florinef is dangerous? I've notice that quite a few members are on it. I have a lot of the symptoms of CFS. Desmopressin + salt made me feel incredible for a while, but over the past 4 months the symptoms have returned. My metabolism seems to be adapting (in a bad way) to the not urinating for 9 hours a day, and I've always gotten water intoxicated from the Desmo very easily. Initially the water retention part of desmopressin made me feel incredible. I have to use salt to make sure I don't get water intoxicated. So, Florinef would give me the same benefits without having to worry about getting water intoxicated. I'd just have to make sure my Potassium stays in a normal range.

They said they need a diagnosis from the doctor, and it can't be "to rule something out" for the insurance to cover it. They said the doctor has to be doing the test based on something he knows I have. Very frustrating because the doctors know something major is going on, but they don't know what it is. Is this what you went through? I'm trying to get a ballpark figure of what it would cost (with and without insurance) and am having a difficult time. Do you have an idea of what the ballpark cost would be? BTW something knew has started happening. I had the flu for about 3 weeks, and ever since then I've been waking up with this strange headache, chills, shakes, nausea, horrible dry throat/mouth (with lips stuck to gums) feeling like I'm in shock. It was really bad for about a week, I'd wake up like this 2 hours after I fell asleep (and multiple times after). Several days I felt like I was in shock all day long. A few times it got so bad felt like I was going to die. At those times my blood pressure had gone up to 150/99. I cut down on the water I was drinking (take desmopressin in the morning) and it's subsided somewhat. I was drinking about 3 liters a day, now I'm down to about 1.5. I now wake up at 6am in the morning with these effects. Along with the "dry eye of a 75 year old" which started about a year and half ago, I just don't know how long I can hold on to my job like this (or sanity for that matter).

Thank you so much. My wife contacted them on Friday, but we haven't heard back yet.

I want to get the BVA-100 test done. My wife tried contacting Washington Hospital Center today and no one knew what she was talking about. Do you have a department name or contact info. I called Daxor and they said that their machine is definitely there and Georgetown as well. Any help would be GREATLY appreciated!

Do you guys know the actual names of the different tests (or the names of the methods)? Thanks, Pianist

I was wondering if anyone else out there has episodes that feel like overheating? My whole life I've easily "overheated", at least that's what I think it is. The first time I remember a definite episode was in jr. high school. (I'm now 35). I ran across the gym as fast as I could with the other kids and felt a burning sensation in my head and felt very faint. I had to go stand next to the wall, then realized that wasn't enough, then had to sit down, that wasn't enough, then I had to lay down, that wasn't enough. I passed out. Ever since then I've learned to be very careful and feel when it's coming on. I do exercise, I bike, I jog, I've gone to the gym 5 days a week for the past 8 years. From time to time I experience the "overheating" episode. The other thing that happens during the episode is that theres a sudden pressure in my head, my ears pop and my heart suddenly speeds up. Sometimes during the episode I feel a "fluttering" of my heart, or irregular beats. After a few minutes of relaxing it goes away as quickly as it arrived. It's usually if I'm exerting myself a little too hard, too fast. It also seems to be related to water. I have to drink water every few minutes while at the gym to keep it at bay. I've learned that doing "squats" at the gym brings it on pretty easily. Three months ago I started using Desmopressin, and the overheating immediately and completely disappeared (as well as all of my other problems). I could exert myself as much as I wanted and I never overheated. I was doing about 20 times more things at the gym at 20 times the intensity. I was going way beyond what would normally bring on an "overheating" episode. I didn't have to drink water every few minutes. No overheating. Over the past 3 months, it's slowly returned. Anyway, I was wondering if any of you have experienced similar episodes of "overheating".

I'm trying to find a place that does accurate blood volume tests. I called around a few local hospitals, etc. I got transferred numerous times and mostly confused the technicians. I live in Virginia. Does anyone know where I can find a listing of such places? Thanks!

I know someone who has "think blood". It's called Polycythemia Vera.

Has anyone every heard of anything like this: there are a hundred different symptoms that my body is telling me that I'm dehydrated (1).. and yet when I get a blood test, my electrolytes are in balanced with my fluid, so the doctor concludes that I'm not dehydrated (although my family doctor admits that over low balanced fluid can also be defined as dehydration.) When I drink ALOT of fluids my symptoms decrease. When I feel really dehydrated my weight is down quite a bit (even though I'm eating the same amount of food.) Do any of you suffer from something where it seems like the body is not correctly distributing fluid around the body? (1) - waking up with parched throat and mouth - if I'm not sipping on liquids constantly my mouth gets parched within a short amount of time - feeling weak and kind of faint - overheat easily if I push myself at the gym (although I carefully do 40 min cardio a day) - severe dry eyes - dry skin

Thank you so much! What ever is going on is just so scary. Take care.

I've had the flu for 6 days now. Fever broke 3 days ago. Even though the rest of my body is fine, I can't get my feet to not be cold no matter what I do. Normally they get cold very easily. But today no matter what I do they are ice cold and sore.. anybody have this happen or know what to do? Anyone think it's serious? (Age:35. I have something that appears to be a lifelong problem with circulation/dehydration/blood volume that has gradually gotten worse over the years and has recently started causing serious problems. Started desmopressin 3 months ago. Initially fixed everything. Everything is coming back. This is my first cold/flu on desmopressin)