Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
Gosh, I'm sorry you're having such difficulties. I have had elevated mast cells. Once was due to straight forward cystitis, which was effectively treated with antibiotics. The second was Feb '10, due to eColi. I was hospitalized, for the initial symptoms of eColi, which did evolve into IC & HUS(hemolytic uremic syndrome). IV HC did help with the inflammation & keep the other 'bad things' at bay, ex: cytokines.
I know IC can be awful. It can really effect your entire body. As I understand, IC has several causes and some are unknown. The elevated masts may indicate inflammation, which does respond to steroids. Since you also have congestion, maybe it is indeed a case of inflammation..elevated masts can elevate histamine levels causing your congestion. If your culture was also + for blood, it could possibly mean an infection.
Did your MD advise increasing your steroids? Did your biopsy reveal anything else?
I hope you can get rid of this & feel better, soon.
the urologist didn't tell me to increase my cortef but he said something was wrong with my immune system. i go to my endo guy in a couple of weeks.
Since you do have IC AND have been suffering for a couple of months, do you think your urologist can send test results to your endo, rather than wait another week, or more? Maybe your endo could provide some instruction, or treatment, over the phone. I just feel 2 mos. is a long time for such suffering, without any intervention.
I hope you are better, even a bit?