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Jeff's story

Jeff recently retired from work, but he was a coal miner for about 15 years, before changing career to become a police officer. For over 20 years of his working life, starting in the 90s, Jeff suffered with headaches so severe he vomited, disabling joint pain and extreme fatigue.

Being your own advocate

Over the years he was given a variety of medications and pain killers, told to stretch before exercising and meditate to relieve stress. But nothing helped. It wasn’t until he went to see his dentist, because his teeth had become misaligned, that Jeff finally got on the right path to being diagnosed with acromegaly.

“I had perfect teeth, but they started shifting. My dentist took an x-ray and thought he could see a mass on my jaw, so referred me to an ENT [Ear, Nose and Throat] doctor.

 I had more tests, and an MRI scan revealed a 1.4cm tumor on my pituitary gland – and I was told I had acromegaly.” says Jeff. “I’d never heard of it. Hell, it took me 2 weeks to learn how to pronounce it!”

Jeff was given very little information about his condition by the doctor who diagnosed him, so while waiting to see an endocrinologist, he looked it up on the internet. “You get diagnosed and they tell you it is a rare disease and the first thing I thought was 'am I going to die?' I got on the computer and started reading all this bad stuff. One of the worst things is how long it takes to see a specialist. I was being tormented with all these thoughts until I could talk to the endocrinologist.”

In November 2013, Jeff had an operation to remove the tumor. Unfortunately, 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 or have less joint pain? I wasn’t living, just existing.”

Jeff 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, for sure. But you know, I still feel lousy. I still deal with the fatigue, with the joint pain. I had to have both my knees replaced, and my shoulders are giving me a lot of problems right now. My hands still hurt all the time, 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. So that is where I am at today.”

“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, Jeff can’t help but feel frustrated.  “Unfortunately, doctors aren’t taught to look for rare diseases. They tried to deal with each of my symptoms separately – you know, looking for a remedy for my headaches, then a remedy for the joint pain, a separate remedy for my fatigue – instead of putting all the symptoms together and seeing where that led. With acromegaly it is so important to get diagnosed early – the earlier the better. Because the smaller the tumor, the more chance of being cured. But on average it takes 12 years to be diagnosed – and with me it was almost 20.”

“But acromegaly has taught me one thing: Do not sweat the small stuff. Whether it is work, your car, house, whatever, it does not matter. As long as it doesn’t have anything to do with your health, it is fixable. I take a lot of things easier nowadays. Getting upset is not going to change anything or make it better,” Jeff points out.


  • Enlarged hands and feet 
  • Altered facial features
  • Joint problems
  • Muscle weakness and fatigue
  • Anxiety and depression
  • Headaches
  • Soft tissue swelling
  • Excessive sweating
  • Sleep apnea
  • Loss of vision


Diagnosis is usually done by an endocrinologist, typically a pituitary specialist (neuro-endocrinologist), even though referral may come from physicians from a range of medical specialties. Diagnosis often starts with laboratory assessment, such as the measuring of growth hormone level, with MRI scanning as a second step. 


Surgery and/or medical treatment, sometimes in combination with radiotherapy.

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Learn more about acromegaly.

See disease overview