Acromegaly: My Ups and Downs
Last updated: March 2023
The year my son Tyler entered kindergarten, I started the school year active and involved in Tyler’s classroom. But, by December I didn’t have the energy to make it to the school anymore. The fatigue was so debilitating, I felt like I hit a figurative brick wall.
A winding diagnosis journey
A year prior, I saw my doctor due to severe fatigue and blood work showed that my thyroid levels were low. He referred me to an endocrinologist who put me on medication and I was relieved to have a solution. But after a month or two of treatment, I never felt my energy return. The endocrinologist sent me to a rheumatologist who diagnosed me with fibromyalgia. I tried a cocktail of medications to treat my symptoms, but nothing worked for long. It wasn’t until I started lactating spontaneously later that year, along with the return of the debilitating fatigue, that my gynecologist associated my symptoms with a potential pituitary condition. She ordered an MRI, which – surprise! – revealed a pituitary tumor. More blood work confirmed a diagnosis of acromegaly.
What is the average time it takes to get accurately diagnosed with a rare disease?
Best laid plans
I have a Master’s in Public Health in Health Promotion and Education, so the first thing on my mind at diagnosis was: “Fix it, advocate it, do it.” I immediately started researching my options for surgery to remove the tumor and I quickly realized I needed to go to a nationally recognized pituitary center. I was lucky that my insurance let me go out of state, so I chose to go to Emory University in Atlanta, GA.
My game plan was to get the tumor out as quickly as possible, take medication if needed after surgery, and then go back to life as normal. The neurosurgeon at Emory told me that because of its size, there was a high chance they wouldn’t be able to completely remove the tumor. But I thought that even with residual tumor, I could manage any issues with medication and everything would go back to normal.
A disappointing reality
I had surgery six short weeks after my diagnosis. As expected, the doctors weren’t able to get the entire tumor. They left behind a nickel-sized piece in an area too close to the carotid artery in my brain. My endocrinologist said I would need to continue on medication to maintain my growth hormone levels. I appreciated that she explained to me all my treatment options so I could be part of the decision-making. Yet, despite the surgery and medication, I didn’t notice any improvement to my health at all, and my endocrinologist didn’t know how to help me since my growth hormone and IGF-1 levels were in the normal range.
I had a rude awakening, discovering that I was a totally different person. My personality went from a “Type A” to a “Type Z” and I isolated myself from friends and family so I wouldn’t “bring them down.” Eventually, I realized that I must advocate for myself and explore multiple treatment paths. For four long years, I researched possible reasons for my continued fatigue and made appointments with various specialists to rule out other issues such as chronic fatigue and sleep disorders. The fatigue and subsequent depression caused a vicious cycle of eating to try and get energy, and then eating because I was depressed I wasn’t feeling better.
Finding life-changing support
Finally, I stumbled upon two places that became an absolute God-send in regard to managing my acromegaly. First was finding the online group, Acromegaly Community. Talking to others with acromegaly took away the loneliness of having such a unique disease. My “acro friends” helped with the psychological issues that come with this disease. They helped me keep things in perspective and ultimately brought back my positive attitude that was lost after the diagnosis.
The second was finding a medical practice that specializes in hormone and metabolic health. The physician suggested some hormone treatments that might balance out my levels and alleviate my fatigue, as well as ways to lose the excess weight. Only then did I start to experience significant progress. It’s still an uphill battle some days, but I’ve made leaps and bounds since taking hormone therapy and I’m thankful for the progress. I’m in constant dialogue with my doctor about balancing my hormones and managing my health.
Return to a new normal
I’m back in the game, which is a big relief. I’m spending more time with my friends, working on projects as an asthma educator, making wreaths for friends and family, getting involved with church as much as possible and our adventure of adopting a now 13 year old girl. I’ve learned to listen to my body, pace myself and be upfront with people about my limits. In a surprising way, I’ve come to appreciate how living with acromegaly has made me slow down and value the simple things in life. I don’t have a love-hate relationship with the disease and my treatment like I used to.
Based on conversations I’ve had with other people with acromegaly, I know I’m not alone. Everybody is different, but quite a few of us have experienced frustration with breakthrough symptoms after surgery. I encourage other people with acromegaly to find a doctor who digs deeper, who looks beyond the “numbers” and asks how you’re doing and truly listens. They may not have all the answers, but when you have someone on your team who is willing to ask questions, they can open the doors you need to other physicians or specialists who can offer a fresh perspective.
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