AACE Patient Guide

Acromegaly

Learn about acromegaly, including risk factors, complications, signs and symptoms, diagnosis, treatment options, and how to take an active role in your care through shared decision-making with your health care professional.

The pituitary gland is a pea-sized gland at the base of the brain. It makes several hormones (chemical messengers that control everyday functions in the body). One of them is growth hormone.

Acromegaly happens when the pituitary gland makes too much growth hormone. Almost always, the cause is a benign (noncancerous) tumor in the gland. The extra growth hormone makes bones, cartilage, organs, and other tissues grow larger than they should.

25,000people in the U.S. living with acromegaly
3,000people diagnosed each year
5–10 yrs.typical delay from first symptoms to diagnosis

Acromegaly is rare. About 25,000 people in the United States are living with it, and about 3,000 people are diagnosed each year. The actual number of people with acromegaly is probably higher, as diagnosis is typically delayed by five to 10 years after onset of symptoms — and sometimes missed altogether.

Acromegaly can start at any age but usually emerges after puberty. It is most often diagnosed between the ages of 30 and 50.

Most people who get acromegaly have no family history of it, and it is usually not inherited. A small number of cases are linked to rare inherited conditions that make pituitary tumors more likely, including:

  • Multiple endocrine neoplasia type 1 (MEN1)
  • Familial isolated pituitary adenoma (FIPA)
  • Carney complex
Tell your health care professional

If you have one of these conditions, or if a close relative has had a pituitary tumor, tell your health care professional. They may want to check your growth hormone levels.

Acromegaly is a lifelong condition. Left untreated, it can lead to serious and even life-threatening problems. The longer it goes untreated, the likelier those problems become. That is why getting diagnosed and starting care matters so much.

Problems that can shorten life expectancy include:

  • High blood pressure
  • Heart problems, such as an enlarged heart, heart attack, and heart failure
  • Type 2 diabetes
  • Stroke
  • Colorectal, thyroid, and other cancers

Problems that can affect quality of life include:

  • Joint pain and arthritis
  • Sleep apnea and other breathing problems during sleep
  • Carpal tunnel syndrome
  • Thinning bones and spinal fractures
  • Irregular or missed periods, and symptoms that look like polycystic ovary syndrome
  • Difficulty getting pregnant
  • Gestational diabetes (diabetes during pregnancy)
  • Erectile dysfunction
Your emotional health matters

The hormonal and physical changes of acromegaly can also affect your emotional state. Depression, anxiety, and mood swings are common, and they are a real part of the condition — not a personal failing. Tell your health care professional if your mood changes. Support and treatment are available. You do not have to go through this alone.

Acromegaly changes the body slowly, over years. That is part of what makes it hard to spot.

The first thing you may notice is that a ring no longer fits or you have gone up a shoe size. Over time, you may also see:

  • Larger hands and feet
  • A broader nose and larger ears, lips, and tongue
  • A brow and lower jaw that stick out more
  • Wider gaps between your front teeth or a bite that has changed
  • Thicker, oilier skin along with skin tags

Acromegaly involves much more than changes in appearance. Other common symptoms include:

  • Joint or muscle pain
  • Fatigue and weakness
  • Headaches
  • Heavy sweating and body odor
  • A deeper or hoarser voice
  • Snoring or waking up unrested
  • Numbness or tingling in the hands
  • Changes in vision, especially loss of side vision
  • Irregular periods or changes in sex drive
Helpful tip

An old photograph can be a useful tool here. Comparing a picture of yourself from 10 years ago with one taken recently may make gradual changes more obvious to you and your health care professional.

Because the changes come on so gradually, acromegaly is often mistaken for normal aging or attributed to other conditions. Symptoms like joint pain, sleep apnea, high blood pressure, or irregular periods, for example, can each look like a standalone problem. As a result, diagnosis is commonly delayed by several years after symptoms begin — and sometimes missed altogether.

Learning that you have acromegaly can bring mixed feelings. You may feel relieved to have a diagnosis at last but also frustrated about having experienced symptoms for so long. If your health care professional suspects acromegaly, they will refer you to an endocrinologist (a specialist in hormone conditions) for testing.

Blood Tests

Growth hormone levels rise and fall throughout the day, so a single growth hormone measurement is not a reliable way to diagnose acromegaly. Testing is instead done in two steps.

Step 1: Insulin-Like Growth Factor 1 (IGF-1) Test

When growth hormone reaches the liver, it signals the liver to make a second hormone called IGF-1. IGF-1 levels, which stay much steadier throughout the day than growth hormone levels do, reflect how much growth hormone your body has been making overall. That makes a single blood draw for IGF-1 the best first test. Your result is compared against normal levels for your age and sex.

A high IGF-1 result does not necessarily mean you have acromegaly. But it does mean your endocrinologist will want to confirm the diagnosis with a second test.

Step 2: Oral Glucose Tolerance Test (OGTT)

This test checks whether your growth hormone behaves normally. You do not eat for at least eight hours beforehand. After a blood sample is taken, you drink a sugary liquid. Your blood is drawn again every 30 minutes for about two hours.

In someone without acromegaly, the sugar causes growth hormone levels to fall sharply. If your growth hormone stays high, that confirms acromegaly.

Imaging Tests

Once the diagnosis is confirmed, your health care professional will order a scan to find the tumor causing the extra growth hormone and to see how big it is and where it sits.

MRI Scan

An MRI uses a strong magnet and radio waves (not X-rays) to make detailed pictures of the pituitary gland. It is painless, but it means lying still inside a tunnel-shaped scanner for around 30 minutes. If enclosed spaces make you anxious, say so in advance; a mild sedative can usually be given.

CT Scan

If you have a pacemaker, defibrillator, or certain other metal implants, an MRI may not be safe for you. In that case, a CT scan, which uses X-rays and a computer to build the images, can be used instead.

Other Tests

Because acromegaly affects the whole body, your care team will usually check for related conditions around the time of diagnosis. This may involve one or more of the following:

  • Blood pressure and blood sugar checks
  • A cholesterol panel
  • A heart scan
  • A sleep study
  • A colonoscopy
  • An eye and visual field test
  • Blood tests for your other pituitary hormones

Ask your endocrinologist which of these apply to you.

Fortunately, acromegaly can be treated successfully in most cases. An endocrinologist will lead your care, usually working with a pituitary surgeon and other specialists. These health care professionals can work with you to build a plan around your health, priorities, and goals. Finding the right plan often takes time and some adjustment along the way.

The three main treatments for acromegaly — surgery, medications, and radiation therapy — are often combined. No single treatment is right for everyone. Your health care professional will recommend a plan based on things like your age, tumor size, severity of symptoms, hormone levels, and overall health.

Surgery

Surgery to remove the pituitary tumor is usually the first treatment offered. The operation, called transsphenoidal surgery, is minimally invasive: The surgeon uses narrow instruments to reach the tumor through a small opening inside the nostril.

Removing the tumor can bring growth hormone levels down quickly and relieve pressure inside the head. Some changes — such as reduced swelling in the face and hands — can take effect within days.

For many people, especially those with smaller tumors, surgery brings hormone levels back to normal, and no further treatment is needed.

Larger tumors are harder to remove completely. How well surgery works depends heavily on tumor size and position. (The surgeon’s experience is also crucial, so be sure to ask how many pituitary operations they perform each year.) If some tumor remains or hormone levels stay high, your care team may recommend a second operation, medication, and/or radiation therapy.

Medications

Medications, which are sometimes given in combination, may be used to shrink a tumor before surgery. Or, they may be used after surgery to lower growth hormone levels, ease symptoms, and reduce the risk of complications.

Before and during treatment

Before you start on any of these medications, ask your health care professional about possible side effects as well as cost and insurance coverage (which can vary). Once you start, keep talking with your health care professional about how you are doing on treatment. The dose, timing, and/or medication itself may need to be changed to get the balance right — that is completely normal.

Somatostatin Receptor Ligands

These medications are used most often. They work by attaching to receptors on the tumor cells, which reduces growth hormone production and can shrink the tumor.

  • Octreotide (Sandostatin®, Sandostatin® LAR Depot) is given either as an injection under the skin three times a day or as a long-acting injection into the muscle once a month. An oral form (Mycapssa®) is also an option for some people.
  • Lanreotide (Somatuline® Depot) is usually given as an injection under the skin every four weeks, though some people need it more or less often.
  • Pasireotide LAR (Signifor® LAR) is a second-generation somatostatin receptor ligand given as an injection into the muscle once a month.
  • Paltusotine (Palsonify™) is a newer, targeted somatostatin receptor medication that comes as a once-daily pill. The U.S. Food and Drug Administration approved it in 2025 for adults whose acromegaly was not adequately controlled by surgery or for whom surgery is not an option.

Dopamine Agonists

Cabergoline (Dostinex®) and bromocriptine (Cycloset® or Parlodel®) lower growth hormone production and can shrink tumors by acting on dopamine, a chemical messenger in the brain. They are taken by mouth. Both tend to work less well than somatostatin receptor ligands. Also, both are most helpful when hormone levels are only mildly raised or when used in conjunction with another therapy.

Growth Hormone Receptor Blockers

Rather than reducing how much growth hormone your body makes, pegvisomant (Somavert®) blocks the receptors that growth hormone attaches to throughout the body. This prevents the hormone from acting. Pegvisomant is the only medication in this class. You give it to yourself as an injection under the skin, usually once a day.

Radiation Therapy

Radiation therapy uses high-energy beams to destroy tumor cells. Your health care professional may suggest radiation therapy if surgery is not possible, if surgery did not remove all of the tumor, or if medications have not worked or are not an option for you.

Please note

A recommendation of radiation therapy does not mean you have cancer.

The three main types of radiation therapy are conventional radiation therapy, stereotactic radiosurgery, and proton beam therapy. All of them work gradually. Hormone levels usually fall over a period of years, so you will often stay on medication in the meantime.

Radiation to the pituitary gland also slowly reduces its ability to make other hormones. Many people need hormone replacement therapy afterward (sometimes years later), so long-term monitoring will be necessary.

Clinical Trials

Clinical trials are research studies that test whether a new treatment is safe and works. Joining one may give you access to a treatment that is not yet approved — and helps advance care for everyone with acromegaly.

You can see studies that are open and recruiting at ClinicalTrials.gov. Talk with your health care professional before enrolling.

There is no known way to prevent acromegaly. It is not caused by anything you did or did not do, nor by diet, exercise, or lifestyle.

Finding acromegaly early on is crucial because most of the lasting harm comes from years of untreated high growth hormone. Earlier diagnosis leads to earlier treatment — and better outcomes.

Speak up

If you have noticed your rings or shoes getting tighter, or your facial features changing, mention it specifically to a health care professional. Those details are more useful than a general report of feeling tired or achy.

Also, if you have been diagnosed with several of the conditions that can occur with acromegaly (e.g., sleep apnea, carpal tunnel syndrome, type 2 diabetes, high blood pressure), be sure to ask whether your growth hormone levels should be checked.

Acromegaly is a lifelong condition that calls for regular checkups. Fortunately, with treatment, growth hormone and IGF-1 levels can usually be brought back into the normal range. When that happens, many people have a normal life expectancy once again.

Plus, some symptoms can be eased or reversed, such as:

  • Swelling in the hands and feet
  • Headaches
  • Sweating
  • Sleep apnea
  • High blood pressure
  • High blood sugar

Some symptoms, though, cannot be fully reversed. For instance, changes to bone (e.g., the shape of the jaw) or joint damage that has already happened may persist. Your care team can help you manage what remains.

Being treated for acromegaly is not the end of the process. You will have blood tests and scans at intervals for the rest of your life to catch any changes early.

A diagnosis of acromegaly can feel overwhelming, particularly if you lived with symptoms for years before anyone named them. A few things can help.

Staying Active

Regular physical activity can help with joint pain, fatigue, blood pressure, and mood. If acromegaly has affected your joints, some kinds of exercise will suit you better than others. Ask your health care professional if a referral to a physical therapist would make sense for your body.

Mental Health

Living with a chronic condition affects how you feel, and acromegaly can change your appearance in ways that are hard to sit with. Anxiety, low mood, and negative feelings about body image are common but generally treatable. Tell your health care professional if you are struggling; they can refer you to a mental health professional. You do not have to manage the emotional side of acromegaly on your own.

Your Care Team

Your endocrinologist is your main partner in this, often alongside a surgeon. A cardiologist, sleep specialist, rheumatologist, or other health care professionals may also play a role. Bring your questions to appointments. Ask what your latest IGF-1 result means, what the plan is if your IGF-1 levels do not come down, and when you are next due for a scan. Shared decisions are better decisions.

Connecting With Others

Acromegaly is rare, and many people go a long time without meeting anyone else who has it. Patient organizations and peer groups can be a good source of practical advice and of the reassurance that comes from talking to someone who has been through the same thing as you. See below for details on patient resources.

Patient Perspective

What advice or encouragement would you offer others living with acromegaly?

“You are not alone. You are not your diagnosis.”

Living with acromegaly is not easy, and there may be times when you feel overwhelmed, frustrated, or simply tired of having to think about your health. But please remember this: You will get through this. Your diagnosis may change some things in your life, but it does not have to define who you are or prevent you from living your best life.

– Jill S.

One of the most important things you can do for yourself is learn about your condition. Education gives you the ability to better understand what is happening in your body and to participate more confidently in your care. Learn about your symptoms, your treatment options, and your measurable numbers, including your IGF-1 and other important lab results. Don't be afraid to ask questions or ask your doctor to explain something again if you don't understand it.

Know your body and speak up. You are the person living with acromegaly every day. Be open and honest with your doctors about how you are feeling — not just about your laboratory numbers, but also about your energy, pain, sleep, emotions, daily functioning, and quality of life. Your numbers are important, but you are more than your numbers. Sometimes the things that affect your daily life aren't captured on a lab report.

If possible, include a mental health professional on your health care team. Living with a chronic and rare condition can take an emotional toll. Changes to your body, uncertainty about your future, treatment decisions, fatigue, pain, and feeling misunderstood can all be difficult to process. No one can completely understand what you are going through, but a therapist who understands chronic illness can provide a safe place to work through some of the mental and emotional challenges that come with it. Asking for help is not a sign of weakness — it is another way of taking care of yourself.

Find people who understand. Acromegaly can be incredibly isolating, especially because most people have never heard of it and may not understand what you are experiencing. Connecting with other patients can remind you that you are not alone. Support groups, patient organizations, and other people living with acromegaly can provide something very valuable: the reassurance of talking with someone who truly understands the journey.

Build a health care team you trust. Acromegaly can affect many areas of your life and may require care from different specialists. Look for health care professionals who listen to you, respect your concerns, communicate with one another when possible, and recognize that quality of life matters alongside laboratory results.

Don't be afraid to advocate for yourself. If something doesn't feel right, speak up. If you don't understand why a treatment is being recommended, ask. If you feel your concerns aren't being heard, seek another opinion when you are able. Being an advocate for yourself doesn't mean being difficult — it means being an active participant in your own healthcare.

Give yourself grace. There may be good days and bad days. You may have times when you feel strong and times when you feel exhausted by it all. You don't have to be positive every minute of every day. It is okay to acknowledge that this is hard while still believing that things can get better.

And perhaps most importantly, don't lose sight of the person you were before acromegaly — and the person you still are today. Acromegaly is something you live with; it is not all that you are. Continue to find things that bring you joy, nurture your relationships, set goals, laugh, travel, make memories, and do the things that give your life meaning whenever your health allows.

There is no single right way to live with acromegaly. Everyone's journey is different. Give yourself time to learn, adjust, advocate, and find what works for you.

You are not alone. You are not your diagnosis. And even though this journey may not be the one you would have chosen, you can learn to navigate it, find support along the way, and live a meaningful and fulfilling life.

Keep going. You have already made it through so much — and you can get through this, too.

You can turn rare into resilient!

– Jill S.

Find support

Acromegaly Patient Resources

It can be helpful to connect with people who understand acromegaly and can offer encouragement, practical guidance, and a sense of community. These are among the organizations that support people living with acromegaly:

Private Facebook groups include: