Sexual Dysfunction Sexual Dysfunction Pituitary tumors that cause acromegaly can also signal your testicles or ovaries to release little to no hormones. This change can cause erectile dysfunction in men, vaginal dryness and menstrual changes in women, and low sex drive for both.e60dc2a1-f33c-4a05-9b50-8e3e8e597629d3933d73-712c-4e38-abc5-083ee22b0e66e60dc2a1-f33c-4a05-9b50-8e3e8e597629388b8d7e-44c2-47ec-9bf0-45c331ff6a9c “This is one of the least talked about, but very real, symptoms,” says August. Besides hormone changes, acromegaly can change the way you feel about your body, which may make you want to avoid physical intimacy.e60dc2a1-f33c-4a05-9b50-8e3e8e597629388b8d7e-44c2-47ec-9bf0-45c331ff6a9c Because people with acromegaly have so many other symptoms, they may not feel like they have the time or energy to get help for sexual dysfunction, says Kargi. “However, there are many treatment options available, and I would recommend they seek medical advice for these issues.” You can ask your endocrinologist about sexual symptoms. Most of these specialists have some experience with assessing reproductive hormones and sexual dysfunction, says Kargi. “Some patients may also benefit from seeing a urologist (for males) and a gynecologist (for women).” If your symptoms are related to low hormone levels, your doctor may recommend hormone replacement with testosterone in men and estrogen or progesterone in women, says Balasubramanian. August also suggests these tips: Talk openly with your doctor, remembering this is a medical condition, not a personal failure. Be patient with yourself and your body — it’s going through something complex.
Brain Fog and Mental Health Challenges Brain Fog Acromegaly can make it hard to think and concentrate — a phenomenon often called “ brain fog .” Experts think this may happen because of:e60dc2a1-f33c-4a05-9b50-8e3e8e5976292102e5bc-a0e1-4ba3-a998-a8bac7b346ab Brain structure changes High levels of growth hormones Decreased fluid around the brain and spinal cord Disruptions in brain-cell messaging pathways Difficulty concentrating and memory lapses with acromegaly can have a real impact on daily life, says August. “Once you add in medications, sleep issues, and the stress of navigating this disease, the struggle with focus and spaciness can get worse.” Beyond brain function, acromegaly can also affect your mental health. In one study of 261 people with this disorder, over half reported chronic stress, anxiety, and low self-esteem. And 43 percent reported feelings of embarrassment and depression.e60dc2a1-f33c-4a05-9b50-8e3e8e59762966dce730-1877-4c92-b3b6-740191a3a1c1 But your healthcare providers can help you. “Having a continued relationship with the endocrinologist and many other members of the healthcare team to continue to work on these symptoms will help,” says Kargi, who adds that many people may benefit from seeing a psychologist or therapist. A mental health professional may offer cognitive behavioral therapy (CBT), which can help you retrain your thought patterns to accept appearance changes and boost your quality of life.e60dc2a1-f33c-4a05-9b50-8e3e8e597629727f6513-3b30-4c61-91e8-f5706775ad03
The Takeaway Acromegaly causes visible changes to your appearance, but sometimes the invisible symptoms of this disorder can feel even more life-changing. Silent symptoms of acromegaly include joint pain, fatigue, headaches, sexual dysfunction, and mental health challenges. You can manage these symptoms and improve your quality of life by working with your endocrinologist to treat acromegaly and its symptoms.
Debilitating Fatigue and Sleep Issues Fatigue and Sleep Issues About half of everyone with acromegaly reports fatigue that affects their quality of life.e60dc2a1-f33c-4a05-9b50-8e3e8e597629020d8cdd-0daa-43fb-9b7e-b4d541017c39 “Fatigue is a very common consequence of high growth hormone levels,” says Kargi, who adds that the reasons behind this symptom are complex. Fatigue doesn’t mean “feeling tired.” It’s severe exhaustion, weakness, and trouble thinking that doesn’t go away, even after plenty of rest or sleep. In acromegaly, fatigue can be caused by: Inflammation Depression Disrupted sleep Blood vessel damage Weakened muscles Another factor is insulin resistance. Your body gets energy when insulin moves sugar from your blood into your cells. But excess GH and IGF-1 in acromegaly prevents insulin from doing its job well, contributing to fatigue.e60dc2a1-f33c-4a05-9b50-8e3e8e597629a955bfbd-93e1-4432-8238-a36de74ef512e60dc2a1-f33c-4a05-9b50-8e3e8e597629eb720ac4-e4bc-42f7-bdf3-f34a7ec6b679 Obstructive sleep apnea — a common acromegaly complication — can also cause fatigue. Excess IGF-1 can lead to soft tissue overgrowth that obstructs your airway, says Balasubramanian. High GH can also cause central sleep apnea by affecting brain messages that control your breathing while you sleep.e60dc2a1-f33c-4a05-9b50-8e3e8e597629862b8a13-5c69-4f05-b9e0-384c88ddd41d Kargi recommends a sleep study for almost all patients with acromegaly once their IGF-1 levels are controlled, to diagnose the condition and direct treatment. In addition to medical treatment, you can get better sleep and conserve energy with these tips:e60dc2a1-f33c-4a05-9b50-8e3e8e597629020d8cdd-0daa-43fb-9b7e-b4d541017c39e60dc2a1-f33c-4a05-9b50-8e3e8e5976291a541dec-2824-4014-97e3-844cf844d2ad Ask about physical therapy to guide aerobic exercise , which can reduce fatigue. Consider trying cognitive behavioral therapy (CBT) with a licensed provider, which improves energy, sleep, and mood by retraining thought patterns. Practice mindfulness with deep breathing, walking, meditation, or yoga. “Also, give yourself permission to rest,” says August.
While the most obvious signs of acromegaly are changes to your facial features and unusual growth in your hands and feet, it also has effects no one else can see. This rare disease is caused by an overproduction of growth hormone (GH), most commonly by a pituitary tumor. GH acts at the liver to produce a hormone called IGF-1, which causes bony and soft tissue changes throughout the body as well as many metabolic problems. Acromegaly is usually treated with surgery to remove the tumor, but that isn’t always a cure, and many people still need to take medications that may only control some of the symptoms.e60dc2a1-f33c-4a05-9b50-8e3e8e5976297e990e68-f500-4844-a24c-3b9a29ed8319 “Living with acromegaly can feel isolating, especially when symptoms are invisible or misunderstood,” says Risa August , who was diagnosed with acromegaly in 2018 and currently lives in Golden, Colorado. The silent symptoms of acromegaly include painful joints, severe fatigue, frequent headaches, and more — all of which can have a major effect on your quality of life. But you can help yourself feel better.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c2a5e14c-65d8-4a9d-914c-f0c8e7b44a41
Chronic Joint Pain Joint Pain When growth hormone levels get too high, the cartilage between your joints can get thicker, widening them, says Priyadarshini Balasubramanian, MD , an endocrinologist at Yale Medicine in New Haven, Connecticut. That can cause joint pain, stiffness, and trouble moving around.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c16ddde8-d3d2-4e4e-aa03-1ddf94aac30a These joint changes can also lead to carpal tunnel syndrome , with symptoms like hand and wrist numbness, tingling, weakness, and pain.e60dc2a1-f33c-4a05-9b50-8e3e8e59762983fb70d8-0db8-410f-9e75-3a54aa811c33 And bone structure and quality often become abnormal, particularly at the spine, increasing the risk of fractures.e60dc2a1-f33c-4a05-9b50-8e3e8e597629d290ac90-ad8e-40c4-9a8c-a4d9a2ea6f34 “From a patient perspective, the joint pain can feel like accelerated aging, stiffness, swelling, and deep aching, especially in the knees, hips, and hands — any joint really,” says August. “It can limit mobility and make simple activities feel exhausting and painful.” Getting treated for acromegaly is the most important starting point in managing joint pain, says Atil Kargi, MD , an endocrinologist specializing in acromegaly at UNC Health in Chapel Hill, North Carolina. Dr. Kargi also recommends physical therapy and standard pain medications like ibuprofen. But be sure to check with your healthcare provider before you try any new over-the-counter medication. You may be able to reverse some joint changes if you can lower IGF-1 levels early in the course of the disease, says Dr. Balasubramanian. But if changes become permanent, you can ask about steroid or gel injections, she says. “In severe cases, joint replacement might be needed.” Apart from medical treatments, August has found these tips have helped her and others with acromegaly joint pain: Gentle, consistent, non-weight-bearing movement, like cycling and stretching Strength training to support joints when possible Anti-inflammatory nutrition choices Listening to your body instead of pushing through pain “Most importantly, I’d say: Don’t normalize the pain,” says August, who urges people with acromegaly joint pain to advocate for imaging, exploration, and treatment options.
Navigating the Workplace with Acromegaly Navigating the Workplace Working with a chronic condition can pose unique challenges, but you have the right to request workplace accommodations through the Americans with Disabilities Act (ADA).e60dc2a1-f33c-4a05-9b50-8e3e8e5976299cd4d3d6-139e-4aca-b657-b8dfb33f9500 At ada.gov , you can learn about your rights, what you can ask for, and how to ask for what you need. Accommodations that could help you at work include:e60dc2a1-f33c-4a05-9b50-8e3e8e597629763433f2-8daa-4a88-bbe3-cb00db2f64af Access to a quieter workspace Time off for appointments or treatment Ergonomic desk setups
Resources We Trust Mayo Clinic: Acromegaly: Symptoms and Causes Cleveland Clinic: Acromegaly National Institute of Diabetes and Digestive and Kidney Diseases: Acromegaly Acromegaly Community: Patient Support Endocrine Society: Acromegaly
Persistent Headaches Headaches Acromegaly commonly causes headaches : One study review found that 59 percent of people with the disorder reported this symptom.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ff589fe6-b55b-4693-9e69-d50eedcfa976 These headaches typically start at the lower back of the head on one side and spread around the skull and behind the eyes.e60dc2a1-f33c-4a05-9b50-8e3e8e59762990f97f84-1ab8-47e9-9fa6-c694ca3b6c4b Headaches in acromegaly may be caused by:e60dc2a1-f33c-4a05-9b50-8e3e8e597629c5ca2266-7492-4904-ab3a-0429af99a8bde60dc2a1-f33c-4a05-9b50-8e3e8e5976299ed92a58-01fd-4b10-942c-df92b1b16aa7 Pituitary gland tumor pushing against nerves in your brain Inflammation after surgical treatment Stretching of the outer layer of your brain Increased pressure in your brain Painful neck joints The disruption of several hormones managed by the pituitary gland — like estrogen, progesterone, and thyroid-stimulating hormone — can also cause headaches.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c5ca2266-7492-4904-ab3a-0429af99a8bd Experts also think that high GH levels by themselves can cause headaches, partly because medications used to reduct them often improve the headaches, says Kargi. “But the exact mechanisms by which high GH causes headache are not entirely understood.” “The management of the tumor will ease headaches,” says Balasubramanian, who recommends acetaminophen to her patients for temporary relief. These tips help August deal with headaches: Stay hydrated. Track your headache triggers. Ask your doctor about pain management options. Work with your doctor to understand other possible underlying causes. Some acromegaly headaches respond well to medications used for migraine, like tricyclic antidepressants and verapamil (Calan, Verelan), but it may take six weeks or more to notice an improvement.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c5ca2266-7492-4904-ab3a-0429af99a8bd
Lifestyle Changes for Better Quality of Life Improving Your Quality of Life Beyond the tools above, August recommends these tips to maximize your quality of life with acromegaly: Joining a community or an acromegaly support group, so you can connect with people experiencing the same journey Practicing self-compassion instead of self-judgment Reframing limitations into the question, “What CAN I do?” “Mindset shift and linguistic framing can be life-changing,” says August.