Agromegaly
Ken's story
After a working career as a coal miner and later a police officer in Washington DC., Ken is now retired. For more than 20 years of his working life, he suffered from headaches so severe that he vomited, experienced constant joint pain and an extreme fatigue.
A long way to the right diagnosis
Over many years Ken was given a variety of pain killers and other medications. He was told to stretch before exercising and meditate to relieve stress, but nothing helped. It took long time before someone realized what was wrong. At a visit to the dentist, it was noted his teeth had become misaligned, which became the path to his diagnosis.
“I had perfect teeth, but they started shifting. My dentist took an x-ray and thought he could see a mass on my jaw and referred me to an Ear-Nose-Throat doctor.
”An MRI scan revealed a 1.4 cm tumor on my pituitary gland – and I was told I had acromegaly.” says Ken. “I’d never heard of it. It took me two weeks to even learn how to pronounce it!”
Ken had a surgery to remove the tumor, however, it was not possible to remove it in its entirety, as it was wrapped around his carotid artery.
““This was the lowest point in my life,” he confesses. “I didn’t know what was going to happen to me. Would I ever feel like myself? Would I get my energy levels back and have less pain? I was not living, just existing.””
Ken was put on acromegaly medication for six months, but it did not work. He was then put on another medication that did work and after a few months his hormone levels were brought under control – and have remained that way ever since. But he is keen to point out that while he feels better than before, this doesn’t mean he is cured. "The medication helps, but I still feel lousy. I deal with the fatigue and joint pain. I had both my knees replaced, and my shoulders are giving me problems. My hands hurt, my tongue is enlarged, and my face is swollen.The treatments help stop you losing more years of your life, but don’t make all the symptoms go away.”
“One of the biggest things I can stress is that you are in charge. The doctor is only there to advise you with the best way to go, to get your hormones in the normal range. But there needs to be more focus on quality of life and only you know how you feel. You have to be the one to make the decisions. No one is going to be your advocate, except yourself,” he says.
Early diagnosis is key
Looking back on the decades before his diagnosis, Ken can’t help but feel frustrated. “Unfortunately, doctors aren’t taught to look for rare diseases. They tried to deal with each symptom separately – for the headaches, joint pain and the fatigue – instead of seeing the full picture. With acromegaly it is so important to get diagnosed early, before getting permanent manifestations. The smaller the tumor, the more chance of being better. Unfortunately, average time to diagnosis is 12 years – and with me it was almost 20.”
“Acromegaly has taught me one thing: Do not sweat the small stuff. Whether it is work, your car, house, whatever. The most important thing is your health. Getting upset is not going to change anything or make it better,” Ken points out.
Symptoms
- Enlarged hands and feet
- Altered facial features
- Joint problems
- Muscle weakness and fatigue
- Anxiety and depression
- Headaches
- Soft tissue swelling
- Excessive sweating
- Sleep apnea
- Visual disturbances
Diagnosis
Diagnosis is usually made by an endocrinologist, often a pituitary specialist (neuroendocrinologist), although referral may be made by doctors from a range of medical specialties. In patients with symptoms of acromegaly, diagnosis includes the measurement of growth hormone levels and magnetic resonance imaging (MRI) to detect a tumor in the pituitary gland.
Management
Surgery and/or medical treatment, sometimes in combination with radiotherapy.
Explore more
Learn more about acromegaly.