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  • Tumor with symptoms but not showing elevated levels

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    Old 06-30-2015, 03:56 PM   #1
    melshady77
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    Tumor with symptoms but not showing elevated levels

    I have a 25 x 18 mm tumor on my left adrenal gland. I have been showing a large number of the symptoms of Pheochromocytoma, to the point that I have been out of work since 2/26/15 and cannot do normal daily activities. However all of the testing that has been done shows that my levels are within the normal range.

    My questions are:

    Is it possible that the normal levels are not my body's normal levels and that is why I have symptoms?

    Can levels fluctuate and not show up on my tests?

    Should I insist that the tumor be removed anyway?

     
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    Old 06-30-2015, 07:17 PM   #2
    ladybud
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    Re: Tumor with symptoms but not showing elevated levels

    The tests done to check for pheo are sometimes not accurate because the hormones can be released excessively in waves, fluctuating between normal and abnormal. That is why symptoms occur in episodes. If you have episodes of high BP, headaches, flushing, sweating, and fast heartrate, it is important to get serum levels drawn during those episodes. This requires a lab order for you to be able to go into the lab during your episodes to get blood drawn, while your symptoms are present. I would want the tumor removed, but it would be nice to get confirmation of excessive epinephrine and norepinephrine release first, since this requires surgery. Pheos are quite rare and you should have a surgeon who is familiar with this and an endocrinologist and cardiologist who can manage the medical treatment pre and post op. Manipulation of the tumor during surgery can release catecholamines, and these need to be blocked with medication to be safe. I would want someone experienced with this to be managing my care. Have you considered going to the Mayo Clinic? I think that would be appropriate.

    Last edited by ladybud; 06-30-2015 at 07:27 PM. Reason: added

     
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    Old 06-30-2015, 07:20 PM   #3
    melshady77
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    Re: Tumor with symptoms but not showing elevated levels

    I am being seen by an endocrinologist at the Mayo however it's 2 1/2 hours from my house so I can't just go when I am having episodes.

     
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    Old 06-30-2015, 07:31 PM   #4
    ladybud
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    Re: Tumor with symptoms but not showing elevated levels

    The Mayo clinic can order tests to be drawn at a local lab near you in Minneapolis, with results sent to the Mayo or the blood tubes sent to the Mayo if they wan their own lab to run the tests.

     
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