Hi Lisa:
There are two puzzles here.
First, where is the ACTH coming from in the first place if the
pituitary tumours were removed and gamma knife treatment
also used? There must be some pituitary production remaining,
or an ectopic source, perhaps a lung, pancreas, thyroid, or
thymus tumour. Have these possibilities been explored?
Second, no matter what the source is, surgical removal of the
adrenals will have prevented cortisol production, and the bulk
of the symptoms associated with excess ACTH production
should have been alleviated. This implies that what you are
experiencing is due to non-adrenal ACTH targets resulting in
such effects as growth hormone release, circadian rhythm
upsets, excessive yawning, etc.
What to do about it?
First, please have the possibility of an ectopic ACTH source
explored.
On the face of it, medication does not seem to be an option as
the drugs used for treatment of Cushing's disease target the
adrenals to prevent cortisol production, and this is not an issue
for you as yours have been removed.
There is a glimmer of hope however. It would need more
exploration to determine if it may help in your case.
One of the drugs used, aminoglutethimide (AG), works at least in
part by blockading the cell surface receptor for ACTH,
preventing target cells from responding. Usually, this will be the
adrenal cortical cells, and the result would be decreased
cortisol production. However, the same receptors are probably
responsible for the response of non-adrenal tissues, so AG may
well down-regulate their response too.
I suggest that you talk with your doctor about the possibilty of
trying AG. If you are met with the argument that it is pointless
since you lack adrenal glands, refer him/her to the following
paper and ask that an endocrinologist be consulted.
http://journals.endocrinology.org/joe/159/joe1590035.htm
I wish you well.
Some background links:
http://www.chclibrary.org/micromed/00044530.htmlhttp://www.neurosci.pharm.utoledo.edu/MBC3320/ACTH.htm
Edited by xarqi on June 10 2005 at 7:56 PM