Patient handout

Acromegaly

PRODUCTION

1. Your condition

This handout is for acromegaly. Your care team identified this based on: enlarging hands/feet (ring + shoe size up), coarse facial features, prognathism, frontal bossing, macroglossia, hyperhidrosis, oily skin (endocrine society 2014).

Other reasons your team may use this plan: new large-joint arthralgia, bilateral carpal tunnel, snoring/witnessed apnea, headache, visual change (acromegaly consensus 2018/2020); age/sex-adjusted igf-1 above reference range on routine or workup labs (endocrine society 2014); incidental pituitary macroadenoma / sellar mass on imaging (acromegaly consensus 2020).

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
endoscopic transsphenoidal adenomectomy	—	surgical	once (definitive)	Endocrine Society 2014 / Consensus 2020 — first-line; cure rate higher for microadenoma and non-invasive macroadenoma at experienced centres; debulking improves subsequent medical response

Plan: Acromegaly — surgery-first ladder → SRL → pegvisomant → cabergoline → radiotherapy → comorbidity bundle (Acromegaly Consensus 2020)

3. When to call your provider

Contact your care team if any of the following happen:

New/worsening visual field loss or acute headache → urgent imaging + neurosurgery (apoplexy pathway) (Acromegaly Consensus 2020)
Decompensated cardiomyopathy/CHF or severe OSA hypoventilation → admit (Acromegaly Consensus 2020)
Pasireotide-induced severe hyperglycemia/DKA-range → urgent glucose management (Acromegaly Consensus 2020)

4. When to seek emergency care

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

Decompensated acromegalic cardiomyopathy / CHF — biventricular hypertrophy with systolic dysfunction, pulmonary congestion, or malignant arrhythmia (Acromegaly Consensus 2020)(life-threatening)
Severe OSA with daytime hypoventilation / hypoxemia or perioperative airway risk in acromegaly (Acromegaly Consensus 2018)
Progressive visual field loss / bitemporal hemianopia from macroadenoma compressing the optic chiasm (Acromegaly Consensus 2020)(life-threatening)
Pituitary apoplexy in a GH-secreting adenoma — thunderclap headache, acute ophthalmoplegia/visual loss, ± hemodynamic collapse from acute ACTH deficiency (Acromegaly Consensus 2020)(life-threatening)
Pasireotide-induced severe hyperglycemia / hyperglycemic crisis (Acromegaly Consensus 2020)
Transaminases >3× ULN on pegvisomant (Endocrine Society 2014)

5. Follow-up

Lifelong endocrine surveillance — biochemical relapse, hypopituitarism replacement, comorbidity reassessment (colonoscopy interval, cardiac, OSA, bone/joint), tumour-regrowth MRI; pituitary MDT for recurrence (Acromegaly Consensus 2020)

6. Sources

Guideline: 2014 Endocrine Society Acromegaly Guideline (Katznelson) + 2018/2020 Acromegaly Consensus (Giustina, Pituitary Society); 2021-2025 updates