Posted by Elroy on April 18, 2005, at 17:06:57
In reply to RE: PHEOCHROMOCYTOMA » Elroy, posted by Sarah T. on April 16, 2005, at 22:54:40
Sorry that I haven't posted in a few days. Additional testing going on plus some home front activities....
Anyway, the testing revealed that it is NOT a pheo.
On one hand felt that was pretty good news... on the other hand I was sorely disappointed as I've been looking desperately for "The Answer" and really felt that this was it (had so many of the symptoms that it was unreal... except for the "malignant hypertension" whereas my BP fluctuated all over the place).
Yes, one of my symptoms was (is) what they call "flank pain"(lower left, just above and behind the left hipbone - the adrenal tumor is in the left adrenal gland). Comes and goes. Used to be very minor - more like an ache, but now is often a sharper pain. Endos insist that it is not only benign, but is NOT biologically active, so is not secreting anything or causing anything to be secreted.
What was amazing is that my adrenaline hormones came back as low normal to even BELOW normal. With a pheo those levels would have been greatly elevated. My dopamine levels were low normal, my epiniphrine levels were low normal and my norepinphrine levels were way BELOW normal!!! Yet my cortisol levels - while slowly coming down over the last four months - have been very elevated... back last September they were almost SIX times the normal maximum range. Testosterone levels were very low back last September also and have impproved only slightly even with testosterone replacement therapy.
That seems extremely peculiar. One would think that if the problem was related somehow to the adrenal problem, that you wouldn't see this type of variance (i.e., cortisol levels should have been depressed also).
I'm just getting more and more puzzled (as are the various specialists). With low ranges in these dopamine related hormones, I am planning on speaking with my psych doc about going onto low-dose selegiline (along with tyrosine and DLPA) in an effort to get those hormones back up to par.
I currently am not taking my anti-cortisol regimen as I have cortisol testing again next week, but will resume that regimen right afterwards.
Addressing individual aspects of "The Problem" is all that I (and the specialists) can think to do right now - while testing continues to see if a root cause problem can be identified....
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> Hi Elroy,
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> I'm entering this thread in the middle, without having read many of the posts. If you don't mind discussing it, I was wondering whether you've had any pain or aching from the adrenal tumor. I'm assuming that the doctors still haven't told you what kind of adrenal tumor it is? Or, are they assuming that it is a pheochromocytoma?
poster:Elroy
thread:452259
URL: http://www.dr-bob.org/babble/alter/20050414/msgs/486091.html