My Long Journey to Being Diagnosed with Acromegaly

My name is Dan Biocchi and my journey began in 1996. I had gained a lot of weight, but lost the weight just as quickly and didn’t feel well. The doctor confirmed my suspicion—my fear—that I had Type 2 diabetes—one of the common symptoms of acromegaly.

Being an Olympic athlete and knowing the best way to fight this disease, I took the task of getting fitter. I cycled every morning. I ate a diabetic diet. I did everything one should do to control the diabetes.

Over the next few years, my diabetes became more acute, controlled through diet to light medication, including Metformin. There were signs that things were a bit different. I had mood swings, anxiety, excruciating joint pain, sleep apnea and hypertension.

In 2004, I was hospitalized for ketoacidosis and was now insulin dependent. After this ordeal, we thought life would become somewhat normal again.

In 2005, we lost our family doctor and started our search for a new one. In our patient-doctor interview, the doctor immediately advised me that I would be referred to a specialist, an internist who specialized in diabetes. In 2006, I finally met with the specialist and was referred to a comprehensive program at the hospital—an inclusive team approach to help diabetics. This team included a doctor of internal medicine, a dietician, physical activity trainer, nurse practitioner and a psychologist, plus had a supervised exercise program that I attended three times a week. Even through exercise and diet, the nurse practitioner could not understand the instability of my sugars and the insulin required to keep my sugars at a normal level. It seemed that my body was resisting the insulin.

I met with the internist every three to four months to review my chart and check my insulin and medication. I would tell him about the sugar highs and lows, and how painful my joints were. I once told the internist, “I feel like I’m growing.” And yet, there was no reaction from the specialist who knew from test results that I also had an enlarged heart, high blood pressure and hypertension—all key signs for acromegaly.

Between 2006 to early 2008, I was still not doing well—I still had high sugar levels and drastic sugar lows of 2.5 or lower.

In February 2008, I asked my family doctor to be referred to an endocrinologist for a second opinion.

In November 2009, I finally met with the endocrinologist. I talked about my diabetes, and the endocrinologist asked if my hands and feet had always been so large. I advised her that my shoe size was now a size and a half larger and my hands were so big that I had issues getting gloves to fit properly.

On December 2, 2009, I was finally diagnosed with acromegaly, and a few weeks later, it was confirmed that I had a brain tumour. I was advised that surgery was required.

The first Endoscopic Endonasal Approach brain surgery (EEA) took place in March 2010, followed by a second in October 2010; both were unsuccessful. Then in July 2011, I went through a round of radiation using CyberKnife—a robotic radiosurgery system. Unfortunately, the tumour is still intact and still producing growth hormones.

I am stable now but suffer from Acquired Brain Injury (ABI), which manifests itself with short-term memory issues and sometimes lack of filter. I also suffer from free-flowing anxiety and depression. I continue to suffer from fatigue, high blood pressure and diabetes, and I no longer produce my own testosterone or natural cortisol. I take numerous medications including a monthly injection, “Sandostatin”, to help regulate the growth hormones.

My wife and I have lived this journey together. When we started our journey there was no support for acromegaly patients in this area. We are both so appreciative of Dianne Sauve for founding Acromegaly Ottawa Awareness and Support Network.

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