i tested for chromogranin a high (217, normal being 0-95). the idea was to test for mcas. is this a plausible result due to mcas? === my doctor knows nothing about mcas, but wants to learn. apparently a lot of things can cause elevated chromogranin a, including mast cell disease and lupus: http://www.mastattack.org/2017/02/chromogranin-a/ . also famotidine, which i took before and during the test for esophagus issues. also apparently pernicious anemia, atrophic gastritis, and stress can raise it. previously i was diagnosed with pernicious anemia due to a positive intrinsic factor test (but we are evaluating b-12 stuff now -- maybe i don't have it?). i tested positive for ds-dna twice. but not firmly diagnosed lupus. sle-related ana tests will be run. === my doctor thinks the test is for monitoring carcinoid, so he wants to do 5-hiaa. [he forgot we did it to check for mcas.] a second chromogranin a test will be run. uncertain what to do to prepare. probably can't contact doctor in time. i do not want to do a 5-hiaa 24h urine test unless it is necessary. makes me crash for days. [we had ordered it at the same time as the chromogranin a but the lab screwed up and it was not run.]
I have no experience with this so I'm afraid cannot contribute anything useful. I do wonder though what is involved in the 5-hiaa test that causes a crash? It's always good for patients to know these things. Is your medical team looking into the other diagnoses that are associated with your test results?
it is merely that 24h urine tests are physically demanding. i need to bunch them up to amortize the health impact. i recover from blood tests in fewer days, because the only impact is somebody visiting [unless the prep is onerous]. [btw huge question: will drinking baking soda solution instead of using famotidine [h2 blocker] going to affect chromogranin a? if so i shouldn't even do the test again as my esophagus would be too strongly affected.] mere details not really worth recounting: i have to keep lights off at night. i can't decant. holding the container is rough on muscles. filling it risks straining muscles and requires remembering the correct posture. putting back in ice chest is demanding. having enough attention and cognitive capacity to make sure it is in the ice and the cover is on is demanding. etc. my doctor is as lost as i am.
