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.