Chrissy Posted March 6, 2009 Report Share Posted March 6, 2009 In december I had a really bad case of IBS or what I thought was Crohns. I lived in the bathroom for a week straight and when I thought I could get out of the house I ended up turning around and coming home or having "issues" in public. I was not eating much at the time and fluid intake was low. This lasted a week. I then started a crash diet, I know, not a good idea. I was drink two ensures a day and a very small snack for lunch. I was also exercising 15 minutes every 3 hrs from noon - 10. I was intaking what I thought were good amounts of water. I never could stomach drinking more than 64 oz. My muscles in my legs have become so weak. I mean I've had muscle weakness before, but not like this. So I went to my annual appt with my POTS dr. and she said that my symptoms definitely sound like I'm on the dry side. She told me to drastically cut back the exercise and told me to drink 64 + oz or take the temperture outside and drink that many ounces. I came home and drank as much as I can. I'm not feeling any better. Every dr I see I mention dehydration and they let it go in one ear and out the other. I can drink 3 1 liter bottles back to back and my mouth still feels like the desert. I'm sleeping way too much. Way more than my usual chronic fatigue which they thought was bad enough. I have major migraines which isn't new, but it feels different than the others. I feel like my sinuses are dried out and hurting. And it is obvious I'm outputting more than I can intake. I guess what I'm wondering is is this just pots progressing and I have to just try my best to hydrate or deal with the symptoms. Or can I go get a giant iv bag to help offset the fluid lost. Please advise. Thank you. Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 6, 2009 Report Share Posted March 6, 2009 Hi,Have you tried Immodium or another of those meds? Quote Link to comment Share on other sites More sharing options...
all4family Posted March 6, 2009 Report Share Posted March 6, 2009 Hi Chrissy,I wish I had an answer, but I can say I relate. Sometimes my mouth is very dry, and no water makes any difference. And it seems like I am peeing out more than I am taking in. Are you taking in salt too? I know my electrolytes are always off when I have blood work done, and it doesn't seem to matter what I have taken in. I was also fasting when I first became sick. Haven't done it again since. I hope you find an answer. Suzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 6, 2009 Report Share Posted March 6, 2009 Chrissy, I actually had an argument with my nephrologist over this (I think this is why he looks scared when he sees me! How many patients know the difference?)Hypovolemia=low blood volume is too little TOTAL blood in the body.Dehydration is too little water/plasma in the body.If you are dehydrated, you are hypovolemic. But if you are hypovolemic, you are not necessarily dehydrated. (I think )Either one will cause OI and tachycardia, as far as I know only a blood volume study will differentiate which one is which, but a CMB and CBC will suggest which one it is: If your hematocrit, BUN and Creatinine are elevated, you are probably dehydrated and loosing free water/plasma. HOWEVER, with POTS there is a plasma volume shift that occurs with upright posture that is greater than the shift in "normals" so your bloodwork could look screwy if you've been upright too long. See, clear as mud! Quote Link to comment Share on other sites More sharing options...
all4family Posted March 6, 2009 Report Share Posted March 6, 2009 Hi Jennifer,Can I add a little more mud to the matter by asking you a question? My Creatinine was low. Very low. I know my BUN was off, and my hematocrit was off, but don't remember how. But my electrolytes are off. I think low. Do you know what this means? I mean clear as mud?!Suzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Jennifer,Can I add a little more mud to the matter by asking you a question? My Creatinine was low. Very low. I know my BUN was off, and my hematocrit was off, but don't remember how. But my electrolytes are off. I think low. Do you know what this means? I mean clear as mud?!SuzyLow serum creatinine is in line with your AChR anti-bodies and myasthenia symptoms. Low hematocrit = anemia. All your electrolytes should not be low, they regulate each other like a see-saw effect: potassium/sodium, etc.It's a lot of reciprocal reactions and feedback loops in the endocrine systems. Dehydration can wreak havoc on the endocrine systems through electrolyte disturbance OR the endocrine system can cause dehydration through hormones and electrolytes. The primary cause is the key to balancing the system, that's the hard part! Have your docs made any progress with your issues?Jennifer Quote Link to comment Share on other sites More sharing options...
all4family Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Jennifer,Thanks for answering. No since the botched EGD I haven't heard from the doctors, and I can't say I am beating down there door waiting to do it again! But I am waiting for my test results to come in the mail so I can find out which test led them to say I may have the mastocytosis. thanks Suzy Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 7, 2009 Report Share Posted March 7, 2009 gosh, I wish it were easy to understand.I still think there is something else that can through levels too. For example, I have odd shaped blood cells so even though I am hydrated and not iron anemic, I never have adequate blood volume because the odd shape cells make them less efficient carriers of oxygen.tearose Quote Link to comment Share on other sites More sharing options...
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