Why Symptoms Can Linger Why Symptoms Can Linger Especially if it remains untreated for a long period, acromegaly can cause permanent changes in your body that contribute to lingering symptoms. “They had a chronic condition that ravaged their body, and some of that’s not reversible,” says Lewis Blevins, MD , an endocrinologist at UCSF Health in San Francisco. “You need to manage these comorbidities that come with acromegaly,” such as joint pain, high blood pressure, or colon polyps (growths that can lead to cancer). Dr. Blevins says that some symptoms of acromegaly — particularly those related to soft tissue changes, like skin symptoms — may get better with surgery and other treatment. But metabolic and bone changes, like high blood pressure or osteoporosis , are unlikely to go away once growth hormone levels are normal. “Once you get those things, there’s no turning the clock back even if you treat the acromegaly,” he says, possibly because you were always genetically predisposed to get them at some point in life. There’s not a neat pattern between previous or current hormone levels and lasting acromegaly symptoms, according to Fleseriu. “Disease activity and disease impact are not always the same,” she says. But when symptoms are unexpected, “Other complications or medical conditions unrelated to acromegaly should also be considered.” Another potential cause of ongoing symptoms may be elevated growth hormone production that still falls within the normal range, according to Blevins. “I’ve seen a number of people who have been referred to me after surgery elsewhere, and they still have active symptoms,” he says. “Oftentimes their IGF-1 might be high-normal, and some of those people need medical therapies to improve quality of life.”
For most people with acromegaly , symptoms improve once the tumor responsible for excess production of growth hormone is surgically removed . In many cases, no further treatment is needed. But you may continue to experience acromegaly symptoms even after a successful surgery . This can happen because of lasting changes in your body caused by excess growth hormone, or possibly because your hormone levels are still higher than they should be. Elevated hormone levels can be treated with medications, or sometimes additional surgery or radiation. Even with normal hormone levels, though, you can experience ongoing symptoms.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fb580840-a395-49cf-9061-456ce10feca5 Here’s what you should know about managing acromegaly symptoms when lab results suggest that you no longer have active disease.
How Acromegaly Treatment Is Monitored How Treatment Is Monitored In acromegaly, excess production of growth hormone occurs in your pituitary gland, located at the base of your brain — due to a tumor in the organ. Once this tumor is removed, you’ll undergo monitoring to check on your response to the surgery. Monitoring after surgery typically includes:e60dc2a1-f33c-4a05-9b50-8e3e8e5976294126433d-be04-4cf0-a4d9-17afb63f316ee60dc2a1-f33c-4a05-9b50-8e3e8e59762995f9d44c-bdc6-48b1-9a92-fda08defba02 IGF-1 This blood test measures a hormone produced by your liver in response to growth hormone, and is widely considered the most reliable measure of growth hormone production. IGF-1 level is usually checked around 12 weeks after surgery. Growth Hormone (GH) It’s also common to measure growth hormone in your blood directly, especially in combination with an oral glucose tolerance test (OGTT) . If consuming glucose “shuts off” growth hormone production, that indicates normal pituitary function. Magnetic Resonance Imaging (MRI) Imaging scans can show any residual tumor in the area of your pituitary gland. According to consensus recommendations on monitoring acromegaly outcomes, an MRI scan should happen 3 to 6 months after surgery to provide a baseline image of the outcome. Follow-up scans are not recommended for everyone, but can be useful when blood tests or symptoms indicate that growth hormone levels may still be too high.e60dc2a1-f33c-4a05-9b50-8e3e8e5976299c60b531-cd9e-4fd2-bade-05d19f843a5e “Importantly, management extends beyond laboratory values and imaging to include assessment of symptoms, quality of life, and functional outcomes,” says Maria Fleseriu, MD , the director of the Pituitary Center at Oregon Health & Science University in Portland. “A comprehensive approach is essential, because biochemical control does not always equate to complete clinical recovery.” Ongoing symptoms and issues related to acromegaly can include the following, according to Dr. Fleseriu: Skeletal changes (bone enlargement) Joint disease or arthritis Fatigue Sleep disturbances Metabolic changes, like diabetes or high blood pressure “One of the biggest misconceptions about acromegaly is that normal lab results automatically mean the disease is no longer affecting the patient,” says George Stamatiades, MD, PhD , an endocrinologist at Brigham and Women’s Hospital in Boston. “In reality, many patients continue to struggle with fatigue, joint pain, limitations in physical function, or emotional distress despite having normal growth hormone and IGF-1 levels.”
How to Manage Ongoing Symptoms How to Manage Ongoing Symptoms For people with ongoing symptoms related to acromegaly, the first step is to confirm that IGF-1 is normal and, if not, prescribe medications that reduce or blunt the effects of growth hormone, says Dr. Stamatiades. Once normal hormone levels are confirmed, “The next step is to systematically evaluate for other contributors, including sleep apnea, joint disease, carpal tunnel syndrome , hypopituitarism [loss of pituitary function], diabetes, cardiovascular disease, depression, anxiety, or medication-related side effects,” says Stamatiades. Fleseriu says that it’s common to refer patients to other specialists, including to treat joint problems, sleep difficulties, or mental health issues . “The ultimate treatment goal is not only biochemical remission, but also improvement in how patients feel and function in daily life,” she says. You may be referred to any of the following specialists, according to Stamatiades: Sleep medicine specialist Physical therapist Pain management specialist Rheumatologist or orthopedic specialist Mental health specialist Generally, health issues related to acromegaly are treated the same as for anyone with arthritis, diabetes, or high blood pressure, according to Blevins. Coordinating this care often falls to a patient’s primary care doctor, he says. “It requires good communication between the endocrinologist and primary care doctor to make sure these patients get the healthcare they need.” But ruling out elevated growth hormone production as a cause of ongoing symptoms is critical, Blevins says — even for people with IGF-1 levels that fall in the higher end of the normal range. “It may be that you have mild active disease,” he says. “A ‘normal result’ may not be entirely normal.”