What is Acromegaly? Symptoms, Causes, & Treatment

Acromegaly is a rare hormonal disorder that happens when your body produces too much growth hormone, typically during adulthood. This excess growth hormone causes your bones, tissues, and organs to gradually grow larger than normal, leading to noticeable physical changes over time.

While this condition affects only about 3 to 4 people per million each year, understanding its signs and getting proper treatment can help you manage it effectively. The changes usually develop slowly, which means early recognition and medical care can make a significant difference in your health outcomes.

What are the symptoms of acromegaly?

The symptoms of acromegaly develop gradually over many years, which is why they're often overlooked at first. Your body changes so slowly that you might not notice them right away, and neither might your family and friends.

Here are the most common physical changes you might experience:

• Your hands and feet growing larger, making rings tight and shoes uncomfortable
• Facial features becoming more prominent, including a larger jaw, nose, and brow
• Your tongue growing bigger, which can affect speech and breathing
• Skin becoming thicker, oilier, and developing skin tags
• Gaps developing between your teeth as your jaw expands
• Your voice becoming deeper and hoarser

Beyond physical changes, you might also notice other symptoms that affect how you feel day to day. These can include severe headaches, joint pain and stiffness, fatigue that doesn't improve with rest, and excessive sweating even when you're not active.

Some people experience vision problems, particularly losing peripheral vision, because the tumor causing acromegaly can press on nearby structures in your brain. Sleep apnea is also common, where your breathing stops and starts during sleep, often due to enlarged tissues in your throat.

What causes acromegaly?

Acromegaly is almost always caused by a benign tumor in your pituitary gland called a pituitary adenoma. This small tumor produces too much growth hormone, disrupting your body's normal hormone balance.

Your pituitary gland, about the size of a pea, sits at the base of your brain and normally releases just the right amount of growth hormone. When a tumor develops there, it acts like a broken faucet that won't turn off, continuously releasing excess hormone into your bloodstream.

In very rare cases, acromegaly can be caused by tumors in other parts of your body, such as your pancreas or lungs, that produce growth hormone-releasing hormone. These tumors signal your pituitary gland to make too much growth hormone, creating the same end result.

The exact reason why these pituitary tumors develop isn't fully understood. They're not inherited in most cases, and they don't appear to be caused by anything you did or didn't do.

When to see a doctor for acromegaly?

You should see a doctor if you notice gradual changes in your appearance, especially if your hands, feet, or facial features seem to be getting larger. Since these changes happen slowly, it's helpful to compare recent photos with ones from several years ago.

Don't wait if you're experiencing persistent headaches, vision changes, or joint pain that doesn't have an obvious cause. These symptoms, combined with physical changes, warrant prompt medical attention.

Sleep problems, particularly if your partner notices you snoring loudly or stopping breathing during sleep, are another important reason to seek medical care. Your doctor can help determine if these symptoms are related to acromegaly or another condition.

Remember, early diagnosis and treatment can prevent many of the complications associated with acromegaly. If something feels different about your body, trust your instincts and discuss your concerns with a healthcare provider.

What are the risk factors for acromegaly?

Acromegaly affects men and women equally and typically develops between ages 30 and 50, though it can occur at any age. The condition doesn't seem to run in families in most cases, meaning having a relative with acromegaly doesn't significantly increase your risk.

There aren't specific lifestyle factors or behaviors that increase your risk of developing acromegaly. The pituitary tumors that cause this condition appear to develop randomly, without clear preventable triggers.

In extremely rare cases, acromegaly can be part of genetic syndromes like Multiple Endocrine Neoplasia type 1 or McCune-Albright syndrome. However, these account for less than 5% of all acromegaly cases.

What are the possible complications of acromegaly?

Without treatment, acromegaly can lead to several serious health problems that develop over time. Understanding these complications helps explain why early treatment is so important for your long-term health.

The most common complications affect your heart and blood vessels. High blood pressure develops in about half of people with acromegaly, and your heart may become enlarged, making it work less efficiently. Some people also develop diabetes because excess growth hormone interferes with how your body uses insulin.

Joint problems are very common and can become quite limiting. Your cartilage may thicken and wear down unevenly, leading to arthritis and persistent pain, particularly in your spine, hips, and knees.

Sleep apnea affects many people with acromegaly and can be serious if left untreated. The enlarged tissues in your throat and tongue can block your airway during sleep, leading to poor sleep quality and strain on your heart.

Vision problems can occur if the pituitary tumor grows large enough to press on your optic nerves. This typically causes loss of peripheral vision, which can affect your ability to drive safely or navigate your environment.

The good news is that proper treatment can prevent many of these complications and even reverse some of them, particularly when caught early.

How is acromegaly diagnosed?

Diagnosing acromegaly usually involves blood tests to measure your growth hormone and insulin-like growth factor 1 levels. Your doctor will likely start with these tests if they suspect acromegaly based on your symptoms and physical examination.

Since growth hormone levels fluctuate throughout the day, your doctor might use a glucose tolerance test. You'll drink a sugary solution, and then your blood will be tested to see if your growth hormone levels drop normally, which they should in healthy individuals.

Once blood tests confirm excess growth hormone, you'll need imaging studies to locate the source. An MRI of your brain can identify pituitary tumors, while other scans might be needed if the tumor is located elsewhere in your body.

Your doctor may also test your vision and check for other hormone imbalances, since pituitary tumors can sometimes affect the production of other important hormones like cortisol or thyroid hormone.

What is the treatment for acromegaly?

Treatment for acromegaly focuses on reducing growth hormone levels to normal and managing symptoms. The specific approach depends on the size and location of your tumor, your overall health, and your preferences.

Surgery is often the first-line treatment, particularly for smaller pituitary tumors. A skilled neurosurgeon can remove the tumor through your nose using a minimally invasive technique called transsphenoidal surgery. This approach often provides immediate results with relatively quick recovery.

Medications can be very effective, especially if surgery isn't possible or doesn't completely normalize hormone levels. These drugs work in different ways - some block growth hormone receptors, while others reduce hormone production from the tumor itself.

Radiation therapy might be recommended if surgery and medications don't adequately control your hormone levels. While radiation works slowly over several years, it can be very effective for long-term control.

Your treatment plan will likely involve a team of specialists, including an endocrinologist who specializes in hormone disorders and possibly a neurosurgeon. Regular monitoring ensures your treatment is working and helps catch any changes early.

How to manage acromegaly at home?

Managing acromegaly at home involves taking your medications consistently and monitoring your symptoms carefully. Keep a journal of how you're feeling, including energy levels, joint pain, and any changes in your appearance.

Regular exercise can help maintain joint flexibility and manage some symptoms, though you should discuss appropriate activities with your doctor. Swimming and gentle stretching are often good options that don't put excessive stress on enlarged joints.

If you have sleep apnea related to acromegaly, using a CPAP machine as prescribed can significantly improve your sleep quality and energy levels. Creating a consistent sleep routine also helps your body rest and recover.

Managing other health conditions like diabetes or high blood pressure becomes especially important when you have acromegaly. Follow your doctor's recommendations for diet, medication, and monitoring these conditions closely.

How should you prepare for your doctor appointment?

Before your appointment, gather photos of yourself from different time periods, ideally spanning several years. These visual comparisons can help your doctor see changes that might not be obvious during a single visit.

Make a detailed list of all your symptoms, including when you first noticed them and how they've changed over time. Include seemingly unrelated issues like headaches, joint pain, or sleep problems, as these can all be connected to acromegaly.

Bring a complete list of all medications and supplements you're taking, along with any previous medical records that might be relevant. If you've had blood work done recently, bring those results as well.

Consider bringing a trusted family member or friend who can help you remember important information and provide support during the appointment. They might also notice changes in your appearance that you haven't recognized yourself.

What's the key takeaway about acromegaly?

Acromegaly is a manageable condition when properly diagnosed and treated. While the physical changes can be concerning, effective treatments can control hormone levels and prevent serious complications.

The most important thing to remember is that early recognition and treatment lead to better outcomes. If you notice gradual changes in your appearance or experience persistent symptoms like headaches and joint pain, don't hesitate to discuss them with your doctor.

With proper medical care, most people with acromegaly can live normal, healthy lives. Treatment has improved significantly over the years, offering multiple effective options for controlling this condition.