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Ok So I happened to be in the student medical center today just hanging out, (OK because I dislocated my shoulder...) and I decided to talk to the dr. about the problems retaining water.

Like many of you I'm on a super-high sodium diet. She wants to send me to an internist who "likes a challenge" for my general health, but in addition to seeing my extremely dry throat and skin, she ran a CBC and an electrolyte panel. My white count is high (cold), but everything else is normal. EXCEPT my sodium. I have a very low sodium level. And this was about 2 hours after eating salty lentil soup and olives. She didn't do a urinalysis, but I imagine it would have been pretty salty!

All this energy wasted on making sure to get enough salt, and it's not even working! My hematocrit was a tiny bit higher since moving out to CO, which she says is normal when people move to this elevation, and probably indicates s slightly more dehydrated state.

Anyway, she said she'd probably have me sent to the endocrinologist for this, but we'll start with another visit to the internist in a week.

Why oh why??

LOL that's it, I am going on strike! No more pickles and olives until I have proof that I need them! OK Just kidding. But DizzyDame made me remember all this, and so I didn't want another month to go by before talking to the doctor about it. :)

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Have you talked to your doc about sodium supplements and things? I'm not sure because I'm fairly new at this POTS thing, but I have read that many doctors add that to other treatments/medications. Also, I don't know how effective it would be, but it's something to discuss, I guess.

I feel like I am having similar problems with retaining fluids and sodium because the only treatment that has helped at all is the Florinef to help me retain all of that in my system. I am still very, very symptamatic, so there is a long way to go with finding treatment that is beneficial; this is just the beginning, but that sounds like something to look into as well as just jumping through all the hoops with seeing doctors, the internist, etc. It only helps to continue to educate yourself and explore many options.

As for giving up on eating pickles and olives, all I can say is maybe try a day or two if you can without injesting a lot of salt and see if you can feel any difference: worse or the same. (I've done that with fluids, and I definately can tell I am much less able to do anything when I don't drink a lot of gaterade~I'm definately still not good to go, ever, when I injest a lot of fluids, but I can sit, stand, and walk around the house better and breathe better when I am hydrated better.) So, I don't know, give it a try if you want to.


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I've been on a high-salt diet since I was diagnosed, and especially since leaving Vanderbilt in August of 2005. I was put on florinef initially, but couldn't handle the side effects, and was switched to midodrine and kept on the high-salt diet.

I was somewhat kidding about the pickles and olives, because I actually love them, but if I'm not retaining sodium either, it seems kinda silly to go out of my way to eat so much of it.

I won't know what's up probably until my appointment next week, but what I suspect (and hope that it's not worse) is that they'll tell me it's either diabetes insipidus or the partial diabetes insipidus and put me on DDAVP which I thought I'd be going on in August of 2005.

So I guess I'm just frustrated. But also feeling a bit validated which is nice... I go in there and tell them I'm dehydrated, and they can actually find some proof that something's up.



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Ya, I figured you were joking about throwing in the towel on your pickle/olive eating contest! :) LOL! I love them too!!! And most people I know or have ever lived with don't as much or at all, so even before being put on a high salt diet, I would eat a whole jar of olives in one sitting every few days and people just think I'm weird! But now, the real joke is I'm justified in eating them! :D

I hope you do find something out next week...as we all know, the waiting game is absolutely horrible at times. I feel like I'm in the army; when it comes to having illnesses all you do is hurry up and wait!!! If you know what I mean?

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