Patient Perspective

One patient’s perspective:

Being diagnosed with acromegaly…shock…disbelief, then eventually a huge sense of relief…

I am a registered nurse and work in Diabetes Research. I’m also an avid athlete and compete in triathlons (which involves swimming, biking and running). Almost four years ago, I was diagnosed with acromegaly. Like most people with acromegaly, my process of becoming diagnosed was a long and sometimes frustrating one.

For years I complained to my family doctor about my constant tiredness, joint pain, skin problems, diabetes and my menstrual cycle issues. I visited with dermatologists, podiatrists, gynecologists, endocrinologists, dentists and rheumatologists. All of these specialists sent me home with a medication or a cream, even a suggestion to buy men’s shoes (my feet no longer fit into the largest woman’s size). No one put the whole picture together.

I was starting to believe that I was a hypochondriac and that all of these ailments were “in my head.” Then, one day I experienced a sharp pain in my head and went to the emergency department of the hospital I work in. The doctor that assessed me ran a number of blood tests, x-rays, and a CT scan. After many hours, he returned to explain that I had a tumour on my pituitary gland and that I would need more tests. He said it would probably explain all of my ailments.

My initial feeling was that of shock and disbelief with some anger, but eventually a huge sense of relief. Finally, someone was taking me seriously and I really did have something wrong with me! And I was reassured that this was a condition that could be treated. I decided that my energy and effort should be on getting better and not spent on being angry about the time it took to be diagnosed.

I was referred to an endocrinologist who specializes in pituitary disorders. In my case, surgery was my best option and I was referred to a neurosurgeon. While I waited for the surgery, my endocrinologist prescribed a medication that helps to slow down the production of growth hormone. This medication is given by injection. The nurse specialist showed me how to give needles to myself and even though I had been giving injections to my patients for more than 20 years, I found it emotionally challenging to give myself injections. I actually enlisted the help of my husband, a few friends and co-workers to help administer the needles!

Within a few weeks, the medication started to help with some of my symptoms. I noticed changes to my skin and my sleep got better. Eventually, I had my surgery, which improved my energy and reduced the pain in my hands, feet and jaw. I lost weight and even found my old shoes were fitting again! The idea of brain surgery was terrifying for me, but I can honestly say the experience was quite fine. Together, both the medication and surgery helped tremendously!

My follow-up test, which took place two months after my surgery, revealed that my sleep apnea was gone and my growth hormone had normalized. After six months I was no longer diabetic. I feel better now than I have for many years. My quality of life has improved greatly. I consider myself very fortunate to be able to continue to work as a nurse and to participate in the sports that I really enjoy.

I have had the pleasure of meeting a number of fellow acromegaly patients and most have reported positive improvements in their overall health and well-being following treatment.

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


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