I have Cushing’s disease cause by a pituitary adenoma and had unsuccesful pitiuitary surgery in AUg 2013.
Since then cortisol levels have not reduced sufficiently and the two options I have been given are further pituitary surgery to remove the gland or a bilateral adrenalectomy – but of which I don’t want.
I still haven’t had children and so don’t know the implications there as well as the long term impact on my life with such drastic measures.
Keen to see if anyone has been in the same situation and from a patient’s perspective what are the experiences. Doctors think they know the best solution but I have proven I am not a text book case
I did try Cabergoline for awhile and it worked but then stopped really having a effect and Pfizer has stopped production recently
Thoughts, advice is VERY welcome