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  • Epinephrine deficiency, autonomic disfunction

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    Old 08-27-2008, 07:18 AM   #1
    Meagan312
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    Epinephrine deficiency, autonomic disfunction

    For the past four years I've struggled with a series of sever symptoms that no doctor could diagnose. Some didn't believe me and thought it was all in my head. Others realized there must be a reason for my low blood pressure and pulse (the only things they could actually measure) ... but they couldn't find it.

    Finally, my endocrinologist discovered that I have low-to-no epinephrine/metanephrine. This is causing severe autonomic problems, insulin resistence, lack of sufficient blood flow to muscles, and inability to thermoregulate properly. Part of me is terrified, although I'm also relieved to have a diagnosis. I can finally tell all the morons who believed it was all in my head that there's a reason I've become increasingly dysfunctional.

    Problem is: My doctor can do nothing about it. He said it's a very rare condition and he doesn't know what to do about it.

    Any suggestions? Are there any experts you could recommend? And what's the long-term prognosis for such a condition if I do nothing?

    Thanks for any suggestions. I really need help!

     
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    Old 08-27-2008, 07:41 AM   #2
    rumpled
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    Re: Epinephrine deficiency, autonomic disfunction

    The only medication I know that raises blood pressure is florinef. They could at least try you on that - is there any reason why that is not tried? How is your aldosterone and renin?

    I understand the *boat* you are in. You have a low test where the real test/diagnosis is a result when it is high. I have them too - and so the docs do not have a clue.

    Have you tried a cardiologist - for POTS management... just a thought.

     
    Old 08-27-2008, 09:32 AM   #3
    Meagan312
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    Re: Epinephrine deficiency, autonomic disfunction

    Thanks for the response. Unfortunately I can't find any specialist willing to spend an extra minute trying to think of a solution for a difficult case. Yes, I did see a cardiologist, repeatedly. I had a TTT done and it was positive, yet he dismisses me as a cardiology patient. He checked my heart, which is structurally sound, and then wished me a nice life.

    I tried both Florinef and Midodrine. Florinef had only a minimal effect and bloated me up like a balloon. And Midodrine I couldn't tolerate (I can't tolerate most medicine, which in itself is related to the hormonal deficiencies and autonomic problem ... deadly catch-22.)

    Is there no way to tackle this hormonally, through some sort of replacement therapy?

     
    Old 08-28-2008, 06:19 PM   #4
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    Re: Epinephrine deficiency, autonomic disfunction

    How is your pulse - high or low?
    Ah with florinef (curse the flornef fluffies!), those with adrenal issues like me, take it with salt tablets. That keeps the puff down but you can only do that if your pulse is wack a doodle high... mine is super high so I take salt tablets all the time. That is a simple thing... but not sure how it will work in your case - since the kidneys regulate salt...
    How is your sodium and potassium readings?
    I would try another <removed> cardio guy - that is awful but um - yeah, I am on the medical mystery tour and have been booted many a time.

    Last edited by mod-anon; 08-28-2008 at 10:23 PM. Reason: Watch your language on the Boards.

     
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