A plain-language guide

acromegaly

What's known, what's still uncertain, and what's actively debated, written plainly, and built only from published medical research.

Growing map · 41 sourced statements Every statement names its source Updated 2026-08-04
Please read this first. This guide is a companion to your medical team, not a replacement, and it is not medical advice. Everything here is tied to published research. If something you expected is not here, it almost always means we have not mapped a source for it yet, not that it is unknown to medicine. acromegaly is an early, growing map, so it will look incomplete on purpose: we would rather show less and have every line be something you can check than fill the page with claims we cannot stand behind. For anything about your own situation, your clinicians hold the full picture. How this guide is built and why.

What's acromegaly?

Acromegaly is an acquired endocrine disorder of growth hormone excess, in the vast majority of cases from a benign GH-secreting pituitary adenoma (somatotroph tumour); the GPR101 and AIP genes are linked only to rare familial pituitary-adenoma predisposition, not to typical sporadic acromegaly. GH drives hepatic IGF-1 production, so elevated IGF-1 with failure of GH to suppress on an oral glucose tolerance test is the biochemical hallmark. Clinical features include acral (hand and foot) enlargement, coarsening facial features, soft-tissue and organ overgrowth, sweating, arthralgia, sleep apnoea, impaired glucose tolerance, and, from the adenoma's mass effect, headache and visual-field loss. First-line treatment is transsphenoidal surgery; medical options include somatostatin analogues, the GH-receptor antagonist pegvisomant, and dopamine agonists such as cabergoline.

Also indexed asORPHA:963, MONDO:0019933
Features mapped14
Treatments mapped8
Published sources16
Last reviewed2026-08-04

Signs and symptoms

Sleep apnea

Sleep apnea — repeated pauses in breathing during sleep — is one of the nonspecific symptoms that can develop in acromegaly. Because soft-tissue overgrowth narrows the upper airway, it can appear well before the more obvious facial and hand changes are recognized.

Limited evidenceSource: PMID:22309962
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:42056759, ORPHA:963
Notesplain_language confirmed from PMID:22309962 via curation 2026-06-14. plain_language confirmed from PMID:42056759 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:22309962 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:22309962 -> PMID:22309962 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Constrictive median neuropathy

Carpal tunnel syndrome — pressure on the median nerve at the wrist, causing tingling, numbness, or weakness in the hand — is one of the nonspecific symptoms that can develop early in acromegaly, before the more obvious changes are noticed.

Limited evidenceSource: PMID:42056759
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:42056759 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:42056759 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:42056759 -> PMID:42056759 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Headache

Headache is one of the most common presenting symptoms of acromegaly. It can come from the pituitary tumor itself as well as from the wider effects of growth hormone excess, and it is often present at the time the condition is first recognized.

Limited evidenceSource: PMID:32995046
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:22309962, ORPHA:963
Notesplain_language confirmed from PMID:32995046 via curation 2026-06-14. plain_language confirmed from PMID:22309962 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:32995046 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:32995046 -> PMID:32995046 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Acral overgrowth

Acral enlargement — the gradual enlargement of the hands and feet — is one of the most commonly described features of acromegaly. It comes from the soft-tissue and bone overgrowth driven by long-term excess growth hormone, and it is often what prompts a person to notice that rings, gloves, or shoes no longer fit.

Limited evidenceSource: PMID:27743174
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:42056759, ORPHA:963
Notesplain_language confirmed from PMID:27743174 via curation 2026-06-14. plain_language confirmed from PMID:42056759 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:27743174 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:27743174 -> PMID:27743174 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Increased circulating insulin-like growth factor 1 concentration

Insulin-like growth factor 1 (IGF-1) is the blood marker used to screen for the disease. Growth hormone drives the liver to make IGF-1, so a raised level reflects ongoing excess and is the main test for diagnosis and follow-up.

Limited evidenceSource: PMID:41878803
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:41878803 via curation 2026-06-14. | regrounded primary ORPHA:963 -> PMID:41878803 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:41878803 -> PMID:41878803 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Elevated circulating growth hormone concentration

Growth hormone (GH) is the hormone produced in excess. Because levels swing through the day, doctors confirm the diagnosis with an oral glucose tolerance test: in acromegaly, GH fails to fall (suppress) after a sugary drink as it normally would.

Limited evidenceSource: PMID:41205005
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:41878803, ORPHA:963
Notesplain_language confirmed from PMID:41878803 via curation 2026-06-14. | regrounded primary ORPHA:963 -> PMID:41205005 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:41205005 -> PMID:41205005 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Hyperhidrosis

Excessive sweating, often with oily skin, is one of the most common presenting features of acromegaly. It reflects the effect of growth hormone excess on the skin's sweat and oil glands.

Limited evidenceSource: PMID:22309962
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:22309962 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:22309962 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:22309962 -> PMID:22309962 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Visual field defect

When the pituitary tumor grows large it can press on the nearby optic nerves, causing loss of side (peripheral) vision. This is a reason to have formal visual-field testing and is one of the tumor's mass-effect signs.

Limited evidenceSource: PMID:37097352
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:37097352 via curation 2026-06-14. | regrounded primary ORPHA:963 -> PMID:37097352 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:37097352 -> PMID:37097352 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Pituitary growth hormone cell adenoma

The usual cause is a pituitary somatotroph tumor, a benign growth of the pituitary's growth-hormone-producing cells. Treating this tumor is the central goal of care.

Limited evidenceSource: PMID:41205005
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:41205005 via curation 2026-06-14. | regrounded primary ORPHA:963 -> PMID:41205005 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:41205005 -> PMID:41205005 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Pituitary macroadenoma

A pituitary macroadenoma is a noncancerous tumor of the pituitary gland larger than about 1 cm. In acromegaly it is usually the source of the excess growth hormone, and because of its size it can press on nearby structures or, rarely, bleed.

Limited evidenceSource: PMID:32995046
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:32923214, ORPHA:963
Notesplain_language confirmed from PMID:32923214 via curation 2026-06-17. plain_language revised from PMID:32923214 via curation 2026-06-18 [carrie (claude rewrite)]. | regrounded primary ORPHA:963 -> PMID:32995046 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:32995046 -> PMID:32995046 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Diabetes mellitus

Diabetes and impaired blood-sugar control are common because excess growth hormone works against insulin.

Limited evidenceSource: PMID:22309962
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:22309962 via curation 2026-06-14. | regrounded primary ORPHA:963 -> PMID:22309962 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:22309962 -> PMID:22309962 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Infertility

Prolactinomas are the most common type of pituitary tumor, and they can cause infertility by lowering sex hormone levels in the body.

Limited evidenceCurated reference: ORPHA:963
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:37097352
Notesplain_language confirmed from PMID:37097352 via curation 2026-06-17.
Last reviewed2026-06-17

Coarse facial features

Coarsening of the facial features is one of the classical signs of acromegaly. The features broaden and thicken slowly over years as soft tissue and bone enlarge, so the change is often only obvious when older photographs are compared.

Limited evidenceSource: PMID:27743174
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:32995046, PMID:42056759, ORPHA:963
Notesplain_language confirmed from PMID:32995046 via curation 2026-06-14. plain_language confirmed from PMID:42056759 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:27743174 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:27743174 -> PMID:27743174 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

Vertebral compression fracture

Fragility fractures of the spine — vertebrae that collapse under normal load because the bone has weakened — occur more often in people with acromegaly. Long-term exposure to high growth hormone and IGF-1 changes how bone is built and broken down, raising the risk of these fractures.

Limited evidenceSource: PMID:41205005
Evidence ratingweak
Study designontology_import
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesORPHA:963
Notesplain_language confirmed from PMID:41205005 via curation 2026-06-25 [claude-draft]. | regrounded primary ORPHA:963 -> PMID:41205005 on 2026-06-26 [Carrie Schluter, BCPA] | regrounded primary PMID:41205005 -> PMID:41205005 on 2026-06-26 [Carrie Schluter, BCPA]
Last reviewed2026-06-26

How it is diagnosed

Acromegaly

Diagnosed using: Magnetic resonance imaging.

Limited evidenceSource: PMID:42135744
The source text this rests on
“Heart failure arising from acromegaly was suspected due to her facial features, and confirmed through elevated levels of GH and a pituitary macroadenoma demonstrated by magnetic resonance imaging.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:42135744 via curation 2026-06-17
Last reviewed2026-06-17

Acromegaly

Diagnosed using: Biopsy.

Limited evidenceSource: PMID:39449742
The source text this rests on
“Chest imaging revealed a 75×87×106mm left lung mass, which was found to be a well-differentiated neuroendocrine tumor (NET) on biopsy.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:39449742 via curation 2026-06-17
Last reviewed2026-06-17

Acromegaly

Diagnosed using: Serum IGF-1.

Limited evidenceSource: PMID:42056759
The source text this rests on
“Serum IGF-I is the preferred initial screening test due to its stability and reflection of integrated GH…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:42056759 via curation 2026-06-25
Last reviewed2026-06-25

Acromegaly

Diagnosed using: Oral glucose tolerance test with growth hormone suppression.

Limited evidenceSource: PMID:42056759
The source text this rests on
“GH suppression during OGTT is the gold-standard confirmatory…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:42056759 via curation 2026-06-25
Last reviewed2026-06-25

Acromegaly

Diagnosed using: Pituitary MRI.

Limited evidenceSource: PMID:42029672
The source text this rests on
“…we propose a standardized, tiered approach to pituitary imaging in patients with…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:42029672 via curation 2026-06-25
Last reviewed2026-06-25

Treatment and management

What the research describes, not a recommendation. Treatment decisions belong with your clinician.

This covers treatments that appear in the published research mapped here. Investigational and experimental therapies are not included, so their absence is a boundary of this map, not a sign they do not exist.

transsphenoidal surgery

Surgery to remove the pituitary tumor through the nose and sphenoid sinus (transsphenoidal surgery) is the first-line treatment and can bring the disease into lasting remission when the whole tumor is removed.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:38521837
The source text this rests on
“Transsphenoidal surgery was more successful after 2010 (75% vs.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:38521837 via curation 2026-06-14
Last reviewed2026-06-14

somatostatin analogues

Somatostatin analogues (such as octreotide and lanreotide) are injected medicines that lower growth hormone output. They are the main drug treatment, used when surgery does not fully control the disease.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:38833044
The source text this rests on
“Among the patients on medical treatment, first-generation somatostatin receptor ligand (SRL) monotherapy was used with a median rate of 48.7%, followed by combination therapies with a median rate of 29.3%.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:40804505
Notesconfirmed from PMID:38833044 via curation 2026-06-14 | superseded (replace) by PMID:40804505 on 2026-06-19 [carrie]
Last reviewed2026-06-19

pegvisomant

Pegvisomant is a growth-hormone-receptor blocker that stops growth hormone acting on the body. It is used, often when other drugs are not enough, and is judged mainly by normalizing IGF-1.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:38833044
The source text this rests on
“Pegvisomant monotherapy was used in 7 centers and pasireotide monotherapy in 5 centers, with median rates of 7.9% and 6.3%, respectively.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:40804505
Notesconfirmed from PMID:38833044 via curation 2026-06-14 | superseded (replace) by PMID:40804505 on 2026-06-19 [carrie]
Last reviewed2026-06-19

cabergoline

Cabergoline is an oral dopamine-agonist tablet that can lower growth hormone in some people, usually in milder disease or added to other treatment.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:38833044
The source text this rests on
“Cabergoline monotherapy was used in 6.9% of patients.”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Supporting sourcesPMID:40804505
Notesconfirmed from PMID:38833044 via curation 2026-06-14 | superseded (replace) by PMID:40804505 on 2026-06-19 [carrie]
Last reviewed2026-06-19

pasireotide

Pasireotide is a long-acting somatostatin medicine that binds to several somatostatin receptor types at once. In acromegaly it can achieve better control of growth hormone and IGF-1 levels than older somatostatin medicines, though it carries a higher risk of raised blood sugar.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:41965092
The source text this rests on
“Pasireotide long-acting release, a somatostatin receptor multiligand, achieves more favorable biochemical control rates but is associated with an increased risk of…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:41965092 via curation 2026-06-25
Last reviewed2026-06-25

octreotide

Octreotide is a long-acting somatostatin receptor ligand — an injected medicine that lowers growth hormone release. Together with lanreotide it has been the cornerstone of long-term medical treatment for acromegaly.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:41965092
The source text this rests on
“Long-acting somatostatin receptor ligand (SRL) therapy with octreotide or lanreotide has been the cornerstone of…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:41965092 via curation 2026-06-25
Last reviewed2026-06-25

radiotherapy

Radiation therapy is used in some people with acromegaly, usually when surgery and medicines have not fully controlled the growth hormone excess. It is given after surgery and chronic medical therapy as part of the overall treatment plan.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:41965092
The source text this rests on
“Treatment of acromegaly includes surgery followed by chronic medical therapy for persistent growth hormone (GH) excess, and, in some patients…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:41965092 via curation 2026-06-25
Last reviewed2026-06-25

lanreotide

Lanreotide is a long-acting somatostatin analogue given by injection that lowers growth hormone and IGF-1. In studies of acromegaly it provided hormonal control and improved quality of life and symptoms in most people treated.

Used to help with: Acromegaly.

Limited evidenceSource: PMID:25193626
The source text this rests on
“Lanreotide ATG provided hormonal control and improved both health-related quality of life and acromegaly symptoms in most…”
An excerpt quoted verbatim from the source named above, shown as recorded. The full sentence is in the linked source.
Evidence ratingweak
Confidence (0-1)0.7
Replicationunreplicated
Notesconfirmed from PMID:25193626 via curation 2026-06-25
Last reviewed2026-06-25

How to read the evidence labels

Widely acceptedSpecialists broadly agree on this.
Strong evidenceBacked by solid, repeated research.
Moderate evidenceReasonable evidence, still being confirmed.
Limited evidenceSome evidence, but not yet convincing.
Early evidenceAn early finding that needs more study.
Experts disagreeResearchers actively disagree about this.
No longer supportedLater, stronger evidence or guidance overturned this.

Where this comes from

This guide is built from 16 published source(s). Every claim above links back to one of them. Click any source ID to read the original on PubMed.

ORPHA:963 · Orphanet/HPO annotations for Acromegaly
PMID:22309962 · Characterization of management and outcomes of patients with acromegaly in Vancouver over 30 years.
PMID:25193626 · Lanreotide autogel(®): a review of its use in the treatment of patients with acromegaly.
PMID:27743174 · Epidemiology of acromegaly: review of population studies.
PMID:32995046 · Clinical Presentation, Treatment, and Outcome of Acromegaly in the United Arab Emirates.
PMID:37097352 · Diagnosis and Management of Pituitary Adenomas: A Review.
PMID:38521837 · Changes in multi-modality management of acromegaly in a tertiary centre over 2 decades.
PMID:38833044 · Standards of care for medical management of acromegaly in pituitary tumor centers of excellence (PTCOE).
PMID:39449742 · Ectopic acromegaly with tumoral range hyperprolactinemia and apoplexy with a dramatic regression of pituitary hyperplasi
PMID:40804505 · title on PubMed
PMID:41205005 · Acromegaly treatment and bone: a bidirectional relationship.
PMID:41878803 · Reevaluating the Need for Routine IGF-1 Screening in Poorly Controlled Type 2 Diabetes Mellitus.
PMID:41965092 · Current treatment landscape of acromegaly.
PMID:42029672 · Pituitary adenoma imaging as a determinant of acromegaly diagnosis and outcomes.
PMID:42056759 · Acromegaly diagnosis.
PMID:42135744 · Acromegalic cardiomyopathy with end-stage heart failure treated with left ventricular assist device: a case report.

Take it further

Printed, source-linked documents built from this condition's graph — ready to bring to an appointment or attach to a coverage request. Every claim carries its published source, the same as this guide.