10 Warning Signs and Symptoms of Acromegaly You Should Know

Acromegaly is a rare but serious hormonal disorder that occurs when the pituitary gland produces excessive amounts of growth hormone, typically due to a benign tumor. This condition usually develops gradually in adults, making it challenging to recognize in its early stages. The excess growth hormone causes bones and tissues to grow abnormally, leading to distinctive physical changes and various health complications.

Understanding the symptoms of acromegaly is crucial for early detection and proper management. Because the condition progresses slowly over many years, people often don’t notice the gradual changes in their appearance and health. On average, it takes about 7-10 years from the onset of symptoms before diagnosis. Recognizing these warning signs can help individuals seek medical attention sooner and prevent serious complications.

1. Enlarged Hands and Feet

One of the most noticeable and common symptoms of acromegaly is the progressive enlargement of hands and feet. Patients often report that their rings no longer fit, shoes feel tight, or they need to buy larger glove and shoe sizes over time. This growth occurs because excess growth hormone stimulates the bones and soft tissues in the extremities to continue growing even after normal development has stopped.

The enlargement typically affects:

• Fingers and toes becoming wider and thicker
• Palms and soles increasing in size
• Overall hand and foot structure becoming more prominent and bulky

This symptom often progresses so gradually that individuals may not notice the change themselves, but friends and family members who haven’t seen them in a while may observe the difference more clearly.

2. Facial Feature Changes

Acromegaly causes distinctive alterations in facial appearance that develop slowly over years. The facial bones, particularly in the lower face, continue to grow and change shape, creating a characteristic appearance that can help doctors identify the condition.

Common facial changes include:

• Enlarged jaw (prognathism): The lower jaw protrudes forward, causing an underbite and changing the alignment of teeth
• Prominent forehead: The brow ridge becomes more pronounced and the forehead appears larger
• Enlarged nose: The nose grows broader and longer
• Thickened lips: Lips become fuller and more prominent
• Wider spacing between teeth: As the jaw grows, gaps develop between teeth
• Enlarged tongue (macroglossia): The tongue increases in size, which can affect speech and contribute to sleep problems

Comparing old photographs with current ones often reveals these gradual changes more clearly than looking in the mirror daily.

3. Joint Pain and Arthritis

Chronic joint pain and progressive arthritis are among the most debilitating symptoms of acromegaly, affecting up to 70% of patients. The excess growth hormone causes abnormal growth of cartilage and bone, leading to joint damage, reduced mobility, and persistent discomfort.

The joint problems typically manifest as:

• Pain and stiffness in weight-bearing joints, especially knees, hips, and spine
• Reduced range of motion and flexibility
• Swelling around joints
• Pain in hands and wrists, sometimes mimicking carpal tunnel syndrome
• Morning stiffness that improves with movement

Unlike typical osteoarthritis, acromegaly-related joint problems often affect younger individuals and can be quite severe, significantly impacting quality of life and daily activities.

4. Skin Changes and Excessive Sweating

People with acromegaly frequently experience noticeable changes in their skin texture and function. The skin becomes thicker, oilier, and more coarse due to increased sebaceous gland activity and soft tissue growth stimulated by excess growth hormone.

Characteristic skin manifestations include:

• Hyperhidrosis: Excessive sweating, particularly on the palms, soles, and underarms, affecting 60-90% of patients
• Oily skin: Increased sebum production making skin appear greasy
• Thickened skin: Skin feels rougher and more coarse to touch
• Skin tags: Small, benign growths appearing more frequently, especially in areas of friction
• Enlarged pores: More visible and prominent pores across the face and body
• Acanthosis nigricans: Darkened, velvety patches of skin in body folds

The excessive sweating can be particularly troublesome, often requiring frequent clothing changes and causing social embarrassment.

5. Headaches

Persistent headaches are reported by approximately 60-80% of individuals with acromegaly. These headaches typically result from the pituitary tumor pressing against surrounding brain structures, though the exact mechanism isn’t always clear.

The headaches associated with acromegaly often have these characteristics:

• Chronic and persistent, occurring regularly over months or years
• Located in the frontal region (forehead) or throughout the entire head
• Variable intensity, ranging from mild to severe
• May worsen over time as the tumor grows
• Sometimes resistant to typical over-the-counter pain relievers

While headaches are common in the general population, the persistent and progressive nature of acromegaly-related headaches, especially when combined with other symptoms, warrants medical evaluation.

6. Vision Problems

Visual disturbances occur in many acromegaly patients when the pituitary tumor grows large enough to compress the optic nerves or optic chiasm, which lies directly above the pituitary gland. This pressure can cause various vision problems that may worsen gradually.

Common vision-related symptoms include:

• Peripheral vision loss: Reduced side vision, often described as “tunnel vision”
• Bitemporal hemianopsia: Loss of outer visual fields in both eyes, a classic finding
• Blurred vision: Difficulty focusing or seeing clearly
• Decreased visual acuity: Overall reduction in sharpness of vision
• Double vision: Less common, but can occur if the tumor affects eye movement nerves

Vision changes in acromegaly can be subtle initially and progress slowly, so regular eye examinations are important. If left untreated, the pressure on optic nerves can lead to permanent vision loss.

7. Sleep Apnea and Breathing Difficulties

Sleep apnea affects approximately 60-80% of people with acromegaly, making it one of the most common and potentially dangerous complications. The condition results from multiple factors related to excess growth hormone.

Contributing factors to sleep problems include:

• Soft tissue overgrowth: Enlarged tongue, uvula, and throat tissues narrow the airway
• Structural changes: Altered facial bone structure affects airway anatomy
• Upper airway obstruction: Thickened tissues block normal breathing during sleep

Signs of sleep apnea in acromegaly patients:

• Loud snoring
• Witnessed pauses in breathing during sleep
• Gasping or choking during sleep
• Excessive daytime sleepiness and fatigue
• Morning headaches
• Difficulty concentrating
• Irritability and mood changes

Sleep apnea can lead to serious health problems including high blood pressure, heart disease, and stroke, making it crucial to identify and address this symptom.

8. Fatigue and Muscle Weakness

Persistent fatigue and decreased muscle strength are frequently reported by individuals with acromegaly, significantly affecting their ability to perform daily activities and maintain their usual lifestyle. Despite adequate rest, many patients feel constantly tired and lack energy.

The fatigue and weakness manifest as:

• Generalized tiredness that doesn’t improve with rest
• Reduced muscle strength, particularly in proximal muscles (shoulders, hips)
• Difficulty climbing stairs or rising from a seated position
• Decreased exercise tolerance and endurance
• Feeling physically drained even after minimal exertion
• Need for frequent rest periods throughout the day

The muscle weakness occurs despite the overall increase in body size, as the muscle fibers don’t function as efficiently as they should. This symptom can be particularly frustrating because it limits physical activity and independence.

9. Voice Changes and Throat Issues

Changes in voice quality and various throat-related problems are common in acromegaly due to the enlargement of soft tissues in the throat and changes in the vocal cords and larynx structure.

Characteristic voice and throat changes include:

• Deepening voice: The voice becomes lower in pitch, occurring in both men and women
• Hoarseness: Voice sounds rough, raspy, or strained
• Voice fatigue: Difficulty speaking for extended periods
• Enlarged vocal cords: Structural changes affecting voice quality
• Difficulty swallowing (dysphagia): Enlarged tongue and throat tissues make swallowing challenging
• Feeling of fullness in throat: Sensation of something stuck in the throat

These changes typically develop gradually, and individuals may not notice them themselves, but others often comment on the altered voice quality.

10. Cardiovascular Symptoms

Acromegaly significantly affects the cardiovascular system, with heart disease being a major cause of increased mortality in untreated patients. Excess growth hormone directly impacts the heart and blood vessels, leading to various cardiac complications.

Cardiovascular manifestations include:

• Cardiomegaly: Enlarged heart muscle (left ventricular hypertrophy)
• Hypertension: High blood pressure affecting 30-50% of patients
• Arrhythmias: Irregular heartbeat or palpitations
• Heart valve abnormalities: Particularly affecting the mitral and aortic valves
• Heart failure: In advanced cases, reduced heart pumping efficiency
• Shortness of breath: Difficulty breathing with exertion or when lying flat
• Chest discomfort: Feeling of pressure or tightness in the chest
• Reduced exercise capacity: Getting winded easily during physical activity

Regular cardiovascular monitoring is essential for people with acromegaly, as heart complications can develop even before the diagnosis is made.

Main Causes of Acromegaly

Understanding what causes acromegaly helps explain why the symptoms develop and progress. The condition results from prolonged exposure to excessive growth hormone levels in adults.

Pituitary Adenoma

The overwhelming majority of acromegaly cases (approximately 95%) are caused by a benign tumor of the pituitary gland called a pituitary adenoma. This non-cancerous growth develops in the cells that produce growth hormone, causing them to secrete excessive amounts continuously. These tumors typically grow slowly over many years and are classified by size:

• Microadenomas: Tumors smaller than 10mm in diameter
• Macroadenomas: Tumors 10mm or larger, which are more common at diagnosis

The exact reason why these adenomas develop remains unclear, but they are generally sporadic occurrences rather than inherited conditions.

Ectopic Tumors

In rare cases (less than 5%), acromegaly results from tumors located outside the pituitary gland. These ectopic tumors, most commonly found in the lungs or pancreas, can produce either growth hormone directly or growth hormone-releasing hormone (GHRH), which stimulates the pituitary to overproduce growth hormone.

Genetic Conditions

Although most cases of acromegaly are sporadic, a small percentage occur as part of genetic syndromes that increase the risk of pituitary tumors:

• Multiple Endocrine Neoplasia Type 1 (MEN1): An inherited condition causing tumors in multiple endocrine glands
• Familial Isolated Pituitary Adenoma (FIPA): A genetic condition specifically causing pituitary tumors in family members
• McCune-Albright Syndrome: A rare genetic disorder affecting bones, skin, and hormone-producing tissues
• Carney Complex: An inherited condition causing multiple tumors and skin pigmentation abnormalities

These genetic conditions account for approximately 5% of all acromegaly cases and typically present at a younger age than sporadic cases.

Prevention

Unfortunately, there are no known methods to prevent acromegaly because the condition primarily results from spontaneous development of pituitary tumors, which occur unpredictably and are not related to lifestyle factors. The sporadic nature of pituitary adenomas means that diet, exercise, or other preventive health measures cannot reduce the risk of developing this condition.

However, early detection can help prevent serious complications. If you have a family history of pituitary tumors or genetic syndromes associated with acromegaly (MEN1, FIPA, McCune-Albright Syndrome, or Carney Complex), consider:

• Genetic counseling: Discuss screening options with a healthcare provider
• Regular monitoring: Periodic hormone level checks and imaging if recommended
• Family screening: Inform close relatives so they can be vigilant about symptoms

For the general population, the best approach is awareness of symptoms and prompt medical evaluation if concerning signs develop. Early diagnosis and proper management can prevent or minimize many of the serious complications associated with untreated acromegaly, including cardiovascular disease, diabetes, arthritis, and vision loss.

Frequently Asked Questions

What is the first symptom of acromegaly?

There is no single “first symptom” as acromegaly develops gradually over many years. However, enlarged hands and feet are often among the earliest noticeable changes, with people reporting that rings, gloves, or shoes no longer fit. Facial changes and excessive sweating are also common early signs, though they progress so slowly that individuals often don’t recognize them until reviewing old photographs.

How long does it take for acromegaly symptoms to appear?

Acromegaly symptoms develop very slowly and progressively, typically over 7-10 years or even longer before diagnosis. Because the changes happen gradually, most people don’t notice them immediately. The average age at diagnosis is between 40-50 years, though the condition likely began developing years earlier.

Can acromegaly symptoms come and go?

No, acromegaly symptoms do not come and go. Once present, they persist and typically worsen gradually over time as long as excess growth hormone production continues. The symptoms may progress at different rates, and some may be more noticeable than others, but they don’t spontaneously improve or disappear without proper medical management.

Is acromegaly painful?

Acromegaly itself can cause significant pain and discomfort, primarily through joint pain and arthritis, which affect up to 70% of patients. Headaches are also common, occurring in 60-80% of cases. Additionally, carpal tunnel syndrome, back pain, and muscle aches contribute to the overall pain burden experienced by individuals with this condition.

Can you have acromegaly without facial changes?

While facial changes are very common in acromegaly, the severity and visibility of these changes vary between individuals. Some people may have more subtle facial alterations, especially in the early stages. However, nearly all patients eventually develop some degree of facial feature changes as the condition progresses, though other symptoms like enlarged hands and feet, joint pain, or headaches may be more prominent in certain individuals.

Does acromegaly affect life expectancy?

Untreated or poorly controlled acromegaly can reduce life expectancy by approximately 10 years due to complications such as cardiovascular disease, diabetes, respiratory problems, and increased cancer risk. However, early diagnosis and appropriate management can significantly improve outcomes and normalize life expectancy. This emphasizes the importance of recognizing symptoms early and seeking medical evaluation.

How is acromegaly diagnosed?

Diagnosis of acromegaly involves several steps. Initially, doctors measure insulin-like growth factor 1 (IGF-1) levels through a blood test. If elevated, an oral glucose tolerance test is performed to confirm that growth hormone levels don’t suppress normally. Once biochemical diagnosis is confirmed, magnetic resonance imaging (MRI) of the pituitary gland helps identify and characterize the tumor causing the condition.

Who is most at risk for acromegaly?

Acromegaly most commonly affects middle-aged adults, with the average age at diagnosis being 40-50 years. The condition affects men and women equally. Individuals with certain genetic syndromes (MEN1, FIPA, McCune-Albright Syndrome, or Carney Complex) have an increased risk, though these account for only about 5% of cases. Most cases occur sporadically without a family history.

Can acromegaly symptoms be reversed?

Some acromegaly symptoms can improve or partially reverse with proper management that normalizes growth hormone levels, while others cause permanent changes. Soft tissue swelling, excessive sweating, headaches, and sleep apnea often improve significantly. However, bone changes such as enlarged jaw, prominent forehead, and increased height (if present before growth plates closed) are permanent. Joint damage may stabilize but typically doesn’t fully reverse.

References:

• Mayo Clinic – Acromegaly
• National Institute of Diabetes and Digestive and Kidney Diseases – Acromegaly
• Johns Hopkins Medicine – Acromegaly
• Endocrine Society – Acromegaly
• Pituitary Society – Acromegaly