Esther Ann G.

Esther Ann G.

Esther Ann’s Story

My story begins in 1940, when I was born in Saint John, New Brunswick. I lived there until I was 19 years old and I currently reside in Dartmouth, Nova Scotia. I have a fairly large family, being the eldest of nine children—six girls and three boys in total. In addition, I have four children, two girls and two boys, and six grandchildren.

The road to my acromegaly diagnosis was rather arduous. When I was in my early 50s I started to experience a frequent number of headaches; however, my doctor considered it a “change of life” event and simply passed it off as such. I also started to develop hypertension, but similarly, this condition runs in the male side of my family and was thus not considered any more serious. Soon thereafter, my hands got progressively larger, which resulted in having to get my rings cut off from my fingers. My family doctor sent me to a rheumatologist who prescribed me medication for a year but resulted in no improvement to my condition. Meanwhile, I was experiencing even more problems: continued headaches, my shoe size kept going up, excessive facial hair, excessively oily skin, my mouth and nose grew larger, and I had to get a bunion removed in 2000. I’m a pretty small person at 5′ 1 1/2″ and weighing 120 lbs, which made the growth of my hands and feet worrisome to me. What also worried me was the fact that I was having sleep problems; I started falling asleep during the day or evening for no apparent reason and would snore quite loudly.

After a family member hadn’t seen me for a few years, she was shocked to see how much my facial features had changed. She described my features to her family doctor, who in turn, checked my condition on the internet by entering the words “big hands” and “big feet”. The result suggested acromegaly and it gave a list of signs and symptoms that I could relate to. I took this list of acromegaly signs and symptoms to my family doctor who remarked “I wondered”. My doctor sent me to an endocrinology clinic in May 2007 for further tests.

Once at the endocrinology clinic, I had blood work done, an MRI, and a barrage of other tests. The lab results indicated that my IGF-1 levels were excessively high and it was discovered that I had a tumour on my pituitary gland. Soon thereafter, in June 2007, I had the tumour removed from my pituitary gland and felt an immediate improvement to my condition. The surgery also helped decrease my IGF-1 levels. I was able to stay awake all day, my hands and feet stopped growing, my skin improved, and my snoring almost stopped! Throughout my diagnosis, I knew that something was very wrong and I was delighted that someone had figured out it was acromegaly so that it could be properly treated. I told close family members, and they were worried about me because the physical changes to my body were fairly obvious and signaled that something very strange was going on. I was relieved that the tumour was found and that my condition drastically improved.

About three months after the tumour was removed, my endocrinologist prescribed me a somatostatin analogue and a dopamine agonist to keep my acromegaly under control. Recently, my IGF-1 levels started slowly climbing, which led my endocrinologist to prescribe me additional medication. These drugs are very expensive and are partly covered by insurance. My advice to those who are experiencing life with acromegaly is to keep asking questions and stay positive about achieving good results. You know there is something wrong, and part of the battle is finding out what the problem is. Seeking out a support group is a great thing to do as you can learn more from others who are experiencing a similar situation as yourself and you can lean on each other for emotional help. A support group can help you out until you feel comfortable about your situation, have all of your questions answered, and no longer feel that you are alone. I expect this to be a lifelong trip, but it is very nice to at least know what caused these strange things to happen to my body.

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Check out the true-2-me guest editorial on treatment Considerations for Acromegaly

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