u/EnvironmentalMonk252

Hi, I’m looking for help understanding a confusing endocrine workup. I am currently being evaluated by an endocrinologist, but I want to make sure I’m interpreting this correctly.

Current diagnoses:
Pituitary tumor(s) on MRI (4mm & 6mm)

LAB RESULTS:
Dexamethasone Suppression Test:
Cortisol suppressed to: 0.7 mcg/dL

ACTH:
55 pg/mL (on two tests, paired with cortisol 26)

28 pg/mL (4 days after DST)

Cortisol:
26 mcg/dL (on two tests, paired with ACTH 55; ref max 23.9)

ACTH Stimulation Test (partial results):

Cortisol Baseline: 16.7 mcg/dL

Cortisol 30 min: 27.6 mcg/dL

Cortisol 60 min: 38 mcg/dL

Midnight Salivary Cortisol:
0.236 µg/dL (ref <0.090) on 3rd night

Other 2 nights: lower/closer to normal

Adrenal Androgens:
DHEA-S: 520 (ref max 380)

17-OHP: 157 (follicular phase; ref 15–70)

Prolactin:
87 → 45 ng/mL within 1 month (no medication)

Other labs normal:
Testosterone, thyroid, AMH, LH/FSH ratio, SHBG, fasting glucose, A1C

SYMPTOMS:
Rapid 20 lb weight gain (within one month) and continued weight gain (have gained 30 pounds total)

Blood sugar fluctuations (lows)

Irregular menstrual cycles (50–80 days, worsening over ~1.5 years)

Episodes of racing heart + nausea (randomly, happens at night too)

Severe anxiety/depression starting with physical symptoms

Excess hair growth, acne, severe bloating

Symptoms occur in waves (periods of worsening and improvement), though some remain constant.

MORE CONTEXT:
My endocrinologist currently suspects NCCAH and I’m waiting on full ACTH stim results ( in 2 weeks).
She initially considered a prolactinoma, but since my prolactin decreased without treatment, she now believes the pituitary tumor(s) are incidental.
She also considered early Cushing’s disease but ruled it out after I suppressed on the DST (she said she was 90% sure I had it but took it back). She also said PCOS doesn’t align with my labs either.

MY CONCERN:
I’m confused because my labs and symptoms don’t seem to fully align with NCCAH, especially with:

Fluctuating ACTH

Intermittently elevated cortisol

Pituitary tumors (2 of them)

Symptoms that worsen, improve, then return

Would this pattern still warrant further workup, or does this fit NCCAH/incidental findings? Has anyone seen any similar cases / labs?

Any insight is appreciated (and sorry this is long—I wanted to include everything😭). If anyone has seen anything similar I would love to hear your perspective.

Hi everyone,

I was originally worked up for Cushing’s because of my symptoms and some hormone results, but my endocrinologist has now ruled it out after testing (including a dexamethasone suppression test where my cortisol dropped to 0.7). I fit some of a cushings-like appearance such as a large, bloated stomach (weight sits here), face bloating, and some stretch marks across my legs. I do not have a neck hump. Based on my DST test, my doctor believes Cushings is now off the table.

I still feel pretty confused though because I’ve been dealing with a lot over the past year.

Some of my labs/symptoms:

ACTH and cortisol were described as “inappropriately normal” at one point (ACTH 54, cortisol ~25)
prolactin was high at first (87) but dropped to 45 within ~1.5 months, so my doctor doesn’t think it’s a prolactinoma
DHEA-S has been elevated (480 → 520)
17-OH progesterone was slightly high (157)
testosterone, thyroid, LH/FSH, AMH, SHBG, A1C, IGF-1 all normal
2 small pituitary microadenomas (4mm & 6mm), but they’re being considered incidental

My symptoms often come in waves, some weeks good some weeks bad.

My symptoms have been:
rapid weight gain (~20 lbs in a month)
very long/irregular cycles (40-80 days)
acne and new facial/body hair
fatigue
anxiety, especially in the mornings
mood swings
low and high blood sugar
fluid retention + salt cravings
extreme bloating

My doctor also said my pattern doesn’t really clearly fit classic PCOS either, which is why I’m kind of stuck in the middle trying to understand what’s going on.

I’m still waiting on a midnight salivary cortisol test,
and I also have an ACTH stimulation test coming up.

I guess I’m just wondering if anyone else started down the Cushing’s path but got ruled out and ended up finding another explanation for similar symptoms?