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Questions - Diabetes Insipidus, Dehydration, DDAVP, Sodium, Water - Help

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Oct 24, 2015.

  1. Jennifer J

    Jennifer J Senior Member

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    Southern California
    This is part of a letter I faxed to my Endocrinologist, which via her receptionist she didn't answer my questions, which has me still in the dark and concerned.:( I'm really not even if sure she read my questions.

    My doctor recommended decreasing my DDAVP pills (I'm presently at .1mg am, .1mg pm) or decreasing my water (I'm drinking 60 ounces a day now - a little less than 8 - 8 oz glasses). Below are my questions to her which she is too busy or ? to talk to me and she can't see me at this time. She's booked out for 5 months!

    I did see her end of July and was under the impression she was going to work with me in monitoring this and regulating it, which hasn't been the case. She even said she was concerned that I could have a seizure or die cause my sodium levels have been decreasing as time goes on. (I've called several times and have had a few urgent care visits. Every message has been answered by her via the receptionist which hasn't answered my concerns. I was told I could fax her.)

    I'm so foggy and fatigued trying to read about this on the internet is too difficult at this time. If anyone has experience and can answer any of my questions, I will be forever grateful, as I already am thankful for everyone on this site.:)

    Here's the part of the fax to her:

    I was surprised that my sodium was low. I really thought it would be much higher due to changes made. I haven't felt good at all, at times I feel horrible, for the past month or so. Headaches for weeks (which I practically never have), legs crampy, heart pounding, very weak , bubbly sensations in calves and feet, parched, and periods of dizziness.

    It's very hot in my room with the heat we've had this summer. I'm sweating and I've drenched my bed several times. It was during these extra hot days I've started to have the leg crampiness, bubbly sensations, and the other symptoms noted above.

    I'm doing my best to stay cooler yet can't do much. I am very limited due to my ME/CFS. I'm bedbound most of the time, struggling, it's a monumental effort to even put some yogurt in a dish, feeling like I'm going to collapse, and I do collapse afterwards. Any effort, I pay for with being worst off and longer. It's complicated.

    My DI has not been controlled for at least this past month even more so in the past 4 days. I am urinating too often and I'm parched.

    Questions:

    -Are my sodium levels less because I'm urinating so much?

    -What about dehydration with this heat? Why the cramping and bubbly sensations that started with the heat?

    -Less water? I'm at 6 - 10 oz cups a day which doesn't seem like enough with the heat, my symptoms and how much I'm sweating at times.

    -I don't feel good on more sodium (the 1300 mgs). It may be affecting my DI acting up too. I know in the past more sodium threw me off.

    -I'm urinating so much right now and I'm parched. To decrease the DDAVP will make that worst. Isn't urinating more decreasing my sodium?

    -Can we test my sodium again, and dehydration minerals? One night I kept sipping on water when waking up (accidentally sipped a cups worth which would have brought my water up to 7 cups that day only), not sure if it was the night before my labs were done.

    -The water machine in my building I haven't been able to use since mid September. I've been drinking purified water (reverse osmosis and several other steps) from a water store. Is that affecting anything or will as time goes on cause less minerals, etc?

    I need help regulating and monitoring all this as it changes, and as it still isn't adjusted to where I feel well and it's controlled. Please help me.


    Thank you everyone on PR. I'm here cheering you on and wishing better health for all.
     
  2. Snookum96

    Snookum96 Senior Member

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    Ontario, Canada
    Hi there,

    I'm sorry you are having such a hard time with your doctor.

    I'm not knowledgeable enough to answer your questions but your post caught my eye because of your description of crampy and bubbly legs. I get the same thing, but have never heard anyone else explain it as bubbles before.

    It's always worse in the summer, as with the rest of my symptoms. My cardiologist said its common for POTS symptoms to worsen with heat so I always thought it was that but think it could be dehydration as well.

    I've just ordered some electrolytes because I drink so much water but still can't seem to feel hydrated. Have you tried that?
     
    Jennifer J likes this.
  3. jess100

    jess100 Senior Member

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    Time for a new doctor?
     
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  4. Jennifer J

    Jennifer J Senior Member

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    Southern California
    Thank you @Snookum96.:) Sorry your POTS is worst during the summer. That's good to know. Did your cardiologist attribute the crampy and bubbly legs to it? Also, I didn't know about ordering electrolytes, I will check into that when I can.

    @jess100, thank you. I agree. In there lies the problem (I hope I said that right). One's I've read about have awful reviews, enough for me to think it's more than a couple disgruntled patients. The two that sounded excellent I phoned. The one said they weren't taking any new patients at this time. I asked when might he, and she said never! He's 75 years old and excellent doctor so I can understand.

    The other, she needed a referral from my new primary care (who doesn't know me well or my ME/CFS). I went through weeks of back and forth with my doctor's office. Found out yesterday, the endo I was referred to won't see me because I was Dr. _____ patient and wanted me to go back to see her!:(

    My Endocrinologist medical notes about me are a mess. She wrote some things that weren't true. I haven't had the energy to try to get them amended. I was shocked what she wrote. I had really liked her as a doctor. Any place else I can be referred wants to have notes sent over before they'll even consider scheduling me. Ahhhh.....pout! I'm stuck and it's important I have some answers now, not months. I just keep pushing forward hoping, as we all do, hoping and trying to get some answers and help.
     
    Last edited: Oct 25, 2015
    Snookum96 likes this.
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear jennifer J,
    This is too much of a technical medical problem for people to advise on here. I ralise you feel adrift without advice but it would be wrong for us to make suggestions here.
     
    Jennifer J likes this.
  6. Jennifer J

    Jennifer J Senior Member

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    Thank you, @Jonathan Edwards for reading my post and responding to it. I pretty much knew that was the case. I was just hoping that maybe some things would be written by others that would shed more light on this for me. I know this is intricate and can have very serious consequences. Unfortunately as you realize, I'm at a loss since I can't speak to my Endocrinologists or see one for months. Thank you for writing what you did and looking out for me. I really appreciate it, and all your work on our behalf. Sincerely, Jennifer
     

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