Patient handout

Prolactinoma and hyperprolactinemia

PRODUCTION

1. Your condition

This handout is for prolactinoma and hyperprolactinemia. Your care team identified this based on: woman: galactorrhoea + oligo/amenorrhoea + infertility (endo soc 2011).

Other reasons your team may use this plan: man: low libido / ed / infertility / gynecomastia (pituitary soc 2023); incidental / screening elevated serum prolactin (endo soc 2011); incidental sellar mass on mri/ct (pituitary incidentaloma) (pituitary soc 2023).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
discontinue or substitute offending medication	—	—	—	Stop/switch the culprit when psychiatrically safe; recheck PRL after the appropriate washout (Endo Soc 2011)
macroprolactin (PEG) screen	—	—	—	Macroprolactin is biologically inert — avoids unnecessary imaging/treatment (Endo Soc 2011)
serial 1:100 prolactin dilution	—	—	—	Unmasks the HOOK EFFECT — falsely low PRL in a giant prolactinoma (Pituitary Soc 2023)
levothyroxine	weight-based replacement, titrate to TSH	PO	once daily	Treating primary hypothyroidism removes the TRH drive and can normalise PRL (Endo Soc 2011)

Plan: Hyperprolactinemia exclusion → dopamine agonist → surgery → pregnancy → bone protection (Endo Soc 2011; Pituitary Soc 2023)

3. When to call your provider

Contact your care team if any of the following happen:

Acute severe headache + visual loss / ophthalmoplegia → ED (apoplexy) (Pituitary Soc 2023)
Rapidly progressive visual field loss → urgent neurosurgery (Pituitary Soc 2023)
CSF rhinorrhoea on DA tumour shrinkage → ED + neurosurgery (Pituitary Soc 2023)
Severe DA psychiatric decompensation / impulse-control crisis → psychiatry + stop DA (Endo Soc 2011)

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

Macroprolactinoma with acute severe headache + acute visual loss / ophthalmoplegia (pituitary apoplexy) (Pituitary Soc 2023)(life-threatening)
CSF rhinorrhoea after dopamine-agonist-induced rapid macroadenoma shrinkage (Pituitary Soc 2023)(life-threatening)
Severe dopamine-agonist impulse-control disorder (pathological gambling/hypersexuality) or new psychosis (Endo Soc 2011)
Large/giant sellar mass with only mildly elevated prolactin — suspect HOOK EFFECT (Pituitary Soc 2023)
Macroadenoma with rapidly progressive bitemporal visual field loss without frank apoplexy (Pituitary Soc 2023)

5. Follow-up

Endocrinology long-term; consider DA taper/withdrawal trial after ≥2 years of normoprolactinemia + marked tumour shrinkage with surveillance; preconception counselling; bone health; symptom/return precautions (visual change, severe headache, galactorrhoea recurrence) (Endo Soc 2011; Pituitary Soc 2023)

6. Sources

Guideline: 2011 Endocrine Society Hyperprolactinemia Guideline (Melmed) + Pituitary Society prolactinoma consensus 2023/2024; 2021-2025 updates