The essentials

Acromegaly is a rare disease in which the body makes too much growth hormone, almost always because of a benign tumor of the pituitary gland. Hands, feet and facial features enlarge so slowly that the diagnosis often comes years late. A high IGF-1 for your age is the key blood clue, an MRI finds the tumor, and surgery, medicines or radiation can bring the disease under control.

What is acromegaly?

Growth hormone (GH) is made by the pituitary, a pea-sized gland at the base of the brain. GH tells the liver to make IGF-1, the hormone that actually makes bones, cartilage and organs grow. In acromegaly, too much GH over a long time makes these tissues thicken and enlarge in adults, whose growth plates have closed. When the excess starts in childhood, before the growth plates close, it causes gigantism: unusual height[7].

Acromegaly in brief
TopicKey facts
Other namesGrowth hormone excess; GH-secreting pituitary adenoma (somatotroph adenoma); gigantism in children[8]
How commonAbout 3 to 14 people in 100,000 live with a diagnosis[5][7]; 0.2 to 1.1 new cases per 100,000 people each year[5]
Typical ageUsually diagnosed between 30 and 50, but it can start at any age[9]
Key testsIGF-1, growth hormone after a glucose drink, pituitary MRI, then checks for complications[1]

What are the first signs and symptoms of acromegaly?

Changes build up over years and are easy to miss. Old photos can show them[9].

  • Common Larger, puffy hands and feet: rings that no longer fit, a bigger shoe size, especially in width[7].
  • Common Coarser face: larger nose, lips and tongue, jutting brow and lower jaw, new gaps between the teeth[7].
  • Common Thick, oily skin, heavy sweating and body odor, a deeper voice, more or larger skin tags[7].
  • Common Joint aches, headaches, tiredness and snoring[7][9].
  • Possible Numbness or tingling in the hands (carpal tunnel syndrome), irregular periods, erection problems[9].
  • Rare Loss of side vision, when a large tumor presses on the nerves to the eyes[7][8].

Why is the diagnosis so late? In a Swedish study of 603 patients, the average delay between the first related health problem and the diagnosis was 5.5 years, and almost one in four waited more than 10 years[6]. Women are diagnosed 2 to 4.6 years later than men on average, although they see more doctors[4].

When should I see a doctor about acromegaly?

When to see a doctor

  • Emergency: call 911 for a sudden, severe headache, sudden loss of vision or double vision, confusion or fainting, chest pain or trouble breathing. These need emergency care whatever the cause.
  • Within 24 to 48 hours if your vision is getting worse over days, if headaches are new and persistent, or, on treatment, if you have severe pain under the right ribs with fever or yellow skin (gallstones are a known effect of some acromegaly medicines)[7].
  • At your next appointment if your ring or shoe size has changed, your face looks different in photos, or you have heavy sweating, loud snoring or joint pain without a clear reason. Bring old photos[9].

What causes acromegaly, and who is at risk?

  • Common A benign pituitary tumor (adenoma) causes more than 9 out of 10 cases. It is not cancer, but it releases GH nonstop[7]. Some of these tumors also make prolactin, which can cause milk discharge from the breasts[7].
  • Rare A tumor elsewhere (pancreas, lungs, hypothalamus) that makes GH or, more often, GHRH, the hormone that pushes the pituitary to release GH[7].
  • Rare A genetic condition, mainly in people diagnosed young or with relatives who have pituitary or other hormone tumors[7].

Acromegaly is not usually passed on from parents[9]. A large pituitary tumor can also squeeze the rest of the gland and lower other hormones: thyroid, cortisol and sex hormones[7].

How is acromegaly diagnosed, and how do I read the blood tests?

Diagnosis follows three steps: prove the hormone excess, find the tumor, then look for complications[1].

Tests used to diagnose acromegaly and how to read them
TestWhat points to acromegalyGood to know
IGF-1 blood testHigh for your age. With typical features, a value above 1.3 times the upper limit for age confirms the diagnosis[1]The first test. Normal ranges depend on age and on the lab's method; pregnancy, oral estrogen and fasting or starvation shift results[1]
Random growth hormoneOften high, but not needed for the diagnosis[1]GH comes in pulses, so one normal value does not rule acromegaly out. See our growth hormone test guide
GH after a 75 g glucose drink (oral glucose tolerance test)GH fails to fall below the lab's cut-off, classically 1 ng/mL[1][10]Used when IGF-1 is borderline. With sensitive assays, some centers use 0.4 ng/mL, or 0.2 ng/mL with a BMI of 25 or more[1]
Pituitary MRI with contrastShows the adenoma, its size and whether it reaches the nerves to the eyes[1]Done after the blood tests confirm the excess; if no pituitary tumor is seen, doctors look elsewhere[7]
Prolactin, TSH, thyroxine (T4), cortisol, testosterone or estradiolProlactin may be high; other hormones may be lowChecks the rest of the pituitary[8]
Fasting glucose, HbA1cOften raisedAbout 30% of patients have diabetes at diagnosis[2]
Fictitious example of a lab report (United States format), man aged 47 whose shoe size went up
TestResultReference rangeFlag
IGF-1 (Somatomedin C), LC/MS598 ng/mL81-225 ng/mL (age 46-50)H
Growth Hormone (GH), random4.6 ng/mL0.0-7.1 ng/mL
Glucose, fasting109 mg/dL65-99 mg/dLH
Hemoglobin A1c6.0 %< 5.7 %H
Prolactin11.4 ng/mL2.0-18.0 ng/mL
  1. Flag: H means above the laboratory's range. The ranges shown are typical examples; your lab's own ranges apply, and IGF-1 ranges change with age.
  2. IGF-1 598 ng/mL: 598 ÷ 225 = about 2.7 times the upper limit for age. With changes in the hands, feet or face, a ratio above 1.3 confirms GH excess[1]; the next step is a pituitary MRI.
  3. Random GH in range: it does not exclude acromegaly, because GH is released in pulses[1].
  4. Glucose and HbA1c H: prediabetes range. Excess GH raises blood sugar, which often improves once the disease is controlled[2].

An IGF-1 flagged H next to glucose and hormone results? BloodSense reads your whole report line by line and explains how the results fit together, so you can prepare your questions for the endocrinologist.

Get my blood test explained

Before a glucose suppression test, you usually fast for 10 to 12 hours and rest, because exercise changes GH[10]. Stopping oral estrogen 4 weeks before can avoid a falsely high GH, and results are harder to read with uncontrolled diabetes[1]. Ask before stopping any medicine.

Which complications are checked at diagnosis?

Years of excess GH affect the whole body. About 40% of patients have high blood pressure, up to 80% have sleep apnea at diagnosis, and joint disease is 4 to 12 times more frequent than in other people[2]. The heart muscle can thicken, sometimes leading to heart failure, and vertebral fractures are frequent[2]. Colon polyps are more common[7], so a colonoscopy is advised at diagnosis[2]. Expect a sleep study, a heart ultrasound, blood pressure checks and, depending on your case, a bone density scan[2][8].

Which tests are used to monitor acromegaly, and how often?

"Controlled" means an IGF-1 back within the normal range for your age; after surgery, GH should also fall below 1 ng/mL during a glucose test[1].

Usual follow-up schedule in acromegaly
CheckWhen
IGF-1 after surgery12 weeks after the operation, to judge remission[1]
Pituitary MRI3 to 6 months after surgery, then if hormones or symptoms worsen or before a change of treatment[1]
IGF-1 on injections of somatostatin ligands3 months after starting or changing the dose; 2 to 4 weeks for oral forms[1]
IGF-1 on pegvisomant or cabergolineEvery 1 to 3 months while the dose is adjusted[1]
IGF-1 once controlledEvery 6 to 12 months[1]
Blood pressure, glucose and HbA1c, lipid panel, other pituitary hormonesAt visits, at least yearly[2][8]
ColonoscopyFollowing the general screening rules; more often if IGF-1 stays high, a polyp was found or a relative had colon cancer[2]

One trap: pegvisomant blocks the action of GH, not its release, so GH stays high and IGF-1 is the number to follow[1][7]. High blood pressure can also persist after the hormones are controlled, and is then treated like in anyone else[2].

How is acromegaly treated?

The goals are to shrink or remove the tumor, bring GH and IGF-1 back to normal, ease symptoms and treat complications. The plan depends on the tumor, hormone levels and your health[7].

Surgery. Most tumors are removed through the nose (transsphenoidal surgery). It cures about 85% of small tumors and 40 to 50% of large ones[7]. Soft tissue swelling may ease within days; facial changes improve more slowly[7].

Medicines, when surgery is not possible or not enough[3][7]:

  • Somatostatin receptor ligands (octreotide, lanreotide, pasireotide) lower GH and can shrink the tumor. Most are monthly injections. Side effects include cramps, gas, diarrhea and gallstones[7].
  • Tablets and capsules: oral octreotide capsules for people who already responded to injections[12], and paltusotine, a once-daily tablet approved in the United States in 2025 when surgery did not work well enough or is not an option[11].
  • Pegvisomant, a daily injection, blocks the effect of GH instead of its release; liver tests are monitored[7].
  • Cabergoline, a tablet, can help mild GH excess, especially when prolactin is also high[7].

Radiation therapy is kept for tumor that remains after surgery when medicines fail. It works slowly, over years, and about half of people later need replacement of other pituitary hormones[7].

Some expert centers now control the disease in up to 90% of patients[4].

Can acromegaly be prevented, and how do you live with it?

Acromegaly cannot be prevented, but early treatment limits complications[8].

  • Keep every follow-up blood test, even when you feel well: rising IGF-1 can come before symptoms.
  • Treat what acromegaly leaves behind: sleep apnea, diabetes, blood pressure, joint pain[2].
  • Keep up with colorectal cancer screening[2].

Questions to ask your doctor

  1. How many times above the upper limit for my age is my IGF-1?
  2. Do I need a glucose suppression test, and should I stop any medicine before it?
  3. How large is the tumor, and is it close to the nerves to my eyes?
  4. Is surgery the first option for me, and who would operate?
  5. Which complications should we check now: sleep study, heart, colon, bones?

Frequently asked questions

What is the life expectancy with acromegaly?

When the disease is controlled, mortality is no different from that of the general population. When it stays uncontrolled, the risk of death is about twice as high[4].

Is acromegaly painful?

It can be. Headaches, joint pain and carpal tunnel symptoms are common[7][9]. Joint damage can remain even after hormones are controlled, so it deserves its own treatment[2].

Will my face and hands go back to normal?

Partly. Swelling of the soft tissues improves first, sometimes within days of surgery; changes in the bones of the face and jaw improve less, and more slowly[7].

References

  1. Giustina A, Biermasz N, Casanueva FF, et al. Consensus on criteria for acromegaly diagnosis and remission. Pituitary. 2024;27(1):7-22. doi:10.1007/s11102-023-01360-1 (accessed November 13, 2026)
  2. Giustina A, di Filippo L, Fleseriu M, et al. Consensus on acromegaly complications: an update. Pituitary. 2026;29(3). doi:10.1007/s11102-026-01639-z (accessed November 13, 2026)
  3. Melmed S, di Filippo L, Fleseriu M, et al. Consensus on acromegaly therapeutic outcomes: an update. Nat Rev Endocrinol. 2025;21(11):718-737. doi:10.1038/s41574-025-01148-2 (accessed November 13, 2026)
  4. Esposito D, Johannsson G. Changing understanding of acromegaly epidemiology and early mortality risk. J Clin Endocrinol Metab. 2026;111(12 Suppl 1):S1-S12. doi:10.1210/clinem/dgag150. Full text (PMC) (accessed November 13, 2026)
  5. Lavrentaki A, Paluzzi A, Wass JAH, Karavitaki N. Epidemiology of acromegaly: review of population studies. Pituitary. 2017;20(1):4-9. doi:10.1007/s11102-016-0754-x (accessed November 13, 2026)
  6. Esposito D, Ragnarsson O, Johannsson G, Olsson DS. Prolonged diagnostic delay in acromegaly is associated with increased morbidity and mortality. Eur J Endocrinol. 2020;182(6):523-531. doi:10.1530/EJE-20-0019 (accessed November 13, 2026)
  7. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Acromegaly. niddk.nih.gov (accessed November 13, 2026)
  8. MedlinePlus Medical Encyclopedia. Acromegaly. US National Library of Medicine. medlineplus.gov (accessed November 13, 2026)
  9. NHS. Acromegaly. nhs.uk (accessed November 13, 2026)
  10. MedlinePlus Medical Encyclopedia. Growth hormone suppression test. US National Library of Medicine. medlineplus.gov (accessed November 13, 2026)
  11. Palsonify (paltusotine) tablets, prescribing information. DailyMed, US National Library of Medicine. dailymed.nlm.nih.gov (accessed November 13, 2026)
  12. Mycapssa (octreotide) delayed-release capsules, prescribing information. DailyMed, US National Library of Medicine. dailymed.nlm.nih.gov (accessed November 13, 2026)

This page is general information and does not replace a doctor's advice. A blood test alone cannot confirm or rule out acromegaly: the diagnosis is made by a specialist from symptoms, repeated hormone tests and imaging. Do not start, change or stop any medicine without medical advice.