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  • High Normetanephrine levels

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    Old 02-29-2016, 08:01 AM   #1
    Splendachrine
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    Splendachrine HB User
    High Normetanephrine levels

    Hey all,

    I am new to this board and want to get some good advice on what all I have been experiencing.

    For the past 14 years (I am a 28 yr. old male) I have struggled with what I have been told (and possibly still could be) extreme levels of anxiety. It all started when I drank an energy drink and sort of blacked out. After drinking it, I was a zombie for hours and went into full blown panic, leading me to be in emergency rooms and hospitals for a month. The symptoms never went away without medication. However, my "anxiety" was extremely physical even before taking any medications. My symptoms included brain zaps, floods of adrenaline (which caused anxiety and panic), debilitating muscle pain, muscle twitching, heavy pounding palpitations, bouts of lightheadedness, night sweating, skin tingling, skin burning, tremors, non-stop panic, etc. Honestly, I thought my heart was going to explode out of my chest.

    The only medicine that ever stopped it was Cymbalta, which inhibits Norepinephrine reuptake. After 5 successful years on Cymbalta, I got off thinking I was "cured" to which I was devastated with round 2 of this, 5 months later. Eventually, I got on another medicine that held me off (though nowhere near as successfully) until round 3 in December 2014. Since then, the doctors have run multiple tests including MRI's of the head and abdomen, CT scans, and Catecholamine tests.

    What has always perplexed the doctors is that the symptoms are 24/7 and not event-driven (as anxiety usually is). Last year in January, a 24-hour catecholamine urine test registered a high amount of normetanephrine (525mg). They did an MRI w/ contrast of the abdomen, but didn't see anything of concern. The symptoms never subsided after a year of pain, so I visited an endocrinologist last month. He asked me to do the test one more time, this time over 48 hours. The normetanephrine levels came back even higher this recent time (600mg). I now have a CT scan tomorrow with contrast to go through everything one more time.

    If the scan doesn't find anything, what direction should I go? It seems unlikely that "anxiety" causes your body to pump out continuous levels of normetanephrine at very high levels. What seems more likely is that I am getting anxiety from my body pumping out those levels.

    Please let me know your thoughts on what I should do next, given they don't find a pheochromocytoma. I prefer they do so that they can cut it out and we can all move on!

     
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