just had MRI, anxiety through the roof - what's next?

hi, i've been suffering with a lot of issues since i was a teenager and it's been more than a decade of on and off problems. nobody really took me seriously and i honestly thought it was something wrong with the rest of me. maybe i was too overweight, maybe it was the depression meds, maybe it was my own choices.

i didn't used to be depressed or overweight. it all started happening as a teenager at some point and that's when i started getting really tired too. used to do track and field long jump in high school and then at some point i stopped even running in gym class, opting to walk because anything else was too much.

my PCP always told me my period issues could be managed by birth control but i'm glad i didn't go that route. she told me it was likely caused by my psychiatric meds and i believed her for over a decade. i stayed on the psychiatric meds even though i didn't think they helped because i was so afraid of being in the pits of depression again.

finally a month ago i was experiencing unbearable exhaustion for no reason. i'd go through a normal work day and come home barely able to talk because my lips felt too tired to move. went to the PCP and they did a blood test, found my prolactin levels very elevated.

i felt vindicated for once because she finally referred me to an endocrinologist, she told me it might be PCOS or might be a prolactinoma.

endocrinologist ordered fresh bloodwork to take a closer look and results came back. 1:3 ratio of LH and FSH which i believe he said was indicative of PCOS. prolactin was double what it was when i had it drawn at the PCP. and AM cortisol was 21 but the ACTH was over 100.

he sent me for the MRI, which i had done, and the dexamethasone suppression test which i'll be doing next week.

i've been lurking on this subreddit educating myself because i think my symptoms match cushings to a T. but i also see that MRIs may not show the tumor. and then it got me worried that the dexamethasone suppression test won't show anything either.

is it more likely the tumor would be visible if i also have elevated prolactin levels? and correct me if i'm wrong: i know prolactinomas are typically treated with medication also, but if it's cushings i see the more preferred option is surgery.

besides the fear of inconclusive, negative results, i really fear a prolactinoma misdiagnosis. i hear that cushings can be hard to catch sometimes, even in blood tests for people confirmed to have cushings.

has anyone else had a similar experience? is there any shot of asking for the surgery as a first line of treatment rather than something like cabergoline?

Posted Jul 10, 2026, 5:49 PM UTC

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