acromegaly: what it feels like
7 minute read
before she was diagnosed with acromegaly, dianne sauve noticed her feet had started to grow and she had trouble losing weight.
sauve
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difficulty losing weight was what brought dianne sauve to her doctor. but it was the thing that she brushed off — an increasing shoe size — that caught the attention of an endocrinologist and led to the diagnosis of acromegaly, a rare condition in which the pituitary gland produces too much growth hormone. affecting approximately 50 to 70 people per one million, it is usually diagnosed in middle age.
people living with acromegaly may experience growth in bones and in soft tissue, such as their hands, feet, and face. in some cases, internal organs like the heart may also increase in size and can cause serious complications such as heart and respiratory failure, polyps growth, and vision loss if left untreated, according to the mayo clinic.
healthing spoke to sauve, founder of the acromegaly ottawa awareness & support network, about her experience being diagnosed and living with acromegaly.
what is acromegaly?
acromegaly is pituitary disease, most often caused by a benign or a non-cancerous tumour on the pituitary gland. when you get this disease as an adult, it is called acromegaly. if you get this as a child, it’s called gigantism.
the difference between the two is that, as a child, your bones have not melded together until you hit puberty [roughly 16 to 20 years of age]. they just keep growing and growing.
so the pituitary gland produces too much growth hormone and the bones start to grow, but internal organs can also grow and there can be soft tissue growth, as well as bone growth and all kinds of other complications. typically, acromegaly in an adult happens after the age of 50 or so.
what was your first clue something was wrong?
i was walking every day with my co-workers, and they were all dropping pant sizes, but i couldn’t. plus, i am diabetic and my sugars kept going up.
my family physician sent me to an endocrinologist to learn more about diabetes and have a baseline to follow me. at the end of the appointment, the endocrinologist asked if i had any questions. i was wondering if there was something about diabetes that would make it so difficult for me to lose weight.
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she took a good look at me and asked, “have your hands or feet grown in size?”
although my hands didn’t feel like they were bigger, my feet were and i certainly noticed that i was about a size and a half bigger in my shoe size than i’d ever been. but i had figured it was due to excess weight and age.
the endocrinologist ran a blood test for what is called igf 1 (insulin-like growth factor), a sign that my body was producing too much growth hormone. when that came back high, she did further tests to look more closely at the growth hormone which determined that i had acromegaly.
the diagnosis was a shock. the endocrinologist said that this is a disease caused by a tumour on the pituitary gland that is usually benign and the condition is treatable. since i am an optimist and i hung onto just two words — benign and treatable.
i went home and got on the internet right away to find out more.
the next day i was going on a cruise, which was kind of disturbing. i had to spend 10 days away not knowing what to do next.
i had been told that i would need an mri and, in ontario, it could take months. but i was determined to be my own advocate to ensure i got treatment quickly. i was willing to pay for an mri instead of waiting two months in the ontario hospital system. i asked my family doctor for a referral to a quebec facility, so it could be done sooner, but she managed to get me into an ottawa hospital for an mri within two days. you have to be your own advocate.
the mri didn’t show [a tumour]. i was quite an enigma — every intern had to talk to me because my condition was so intriguing. since they couldn’t find a tumour, i don’t need surgery, but i am on medication that suppresses the growth hormone so i don’t have continued growth in my heart and lungs and colon.
looking back, were there other signs that something was wrong?
i can see now there were other symptoms. it wasn’t just diabetes. i was getting a lot of skin tags because there is growth in soft tissue as well — there were a lot on my neck. i was also finding that my snoring was out of control and, although i didn’t quite have sleep apnea, i had to sleep in a different bedroom from my husband for a while. (both skin tags and a reduction of airflow to the lungs during sleep, causing snoring and sleep apnea, are common early signs of acromegaly.]
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another common symptoms of acromegaly is joint pain. i did not have joint pain, [or a lot of the things that acromegaly patients have. i was diagnosed very, very early. most of the people i’ve dealt with have had years of problems and they go from one specialist to another.
one lady in our group, she’s 80 years old and she suffered for years [before her diagnosis]. she had two knee replacements and a hip replacement and, finally, she saw an obesity doctor who thought there was something else going on and ordered the [growth hormone] blood tests. i think she was maybe 50 or 60 years old when she found out she had acromegaly, after years with symptoms.
with rare diseases like acromegaly, doctors don’t have a lot of exposure. for example, i was with my family physician for 30 years — she had never had another patient with acromegaly. they don’t see it a lot, so they don’t recognize the signs.
how has acromegaly changed your life?
when i was first diagnosed, i worried that what i looked like would change, like my jaw and forehead would grow and i would look like some of the awful pictures that are online of people who live with acromegaly.
after speaking with other acromegalics, i have found that most of us have experienced mood swings, rage, mental confusion and depression. i myself have experienced many of these things — i keep myself calm by reminding myself that the feelings pass. i also have a support system of family and the acromegaly community that help keep me strong.
you were recently part of a photo series by montreal photographer santino matrundola. can you talk a bit more about that?
when you look online to find images of acromegaly people, you’re bombarded with images that — i don’t know a polite way to say it — but, it’s not a very good-looking thing. and maybe that’s part of the reason doctors don’t recognize it until it’s further advanced, where the jaw has grown, the teeth are separating, the forehead protrudes. the portraits [in this series] show that not everyone has those characteristics.
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how did the the acromegaly ottawa awareness & support network come to be?
part of what i wanted to do is to raise awareness. if someone has experienced a lot of the symptoms of acromegaly, maybe they should mention it to their doctor. right now in ontario, the blood test to test for igf 1 is $90.
you think how 20 years back, no one knew what als was and now we all know about it. similar to cystic fibrosis, we didn’t know much about [that disease either]. we want to make acromegaly known, and get people to their doctors and advocating for themselves to get tested.
early diagnosis is important. there are some things that will happen within the body that won’t be reversible — the heart, kidneys, and lungs can grow. people can also have larger colons, and develop polyps that can become cancerous.
the [costly] medication is another thing. i get intramuscular shots of sandostatin lar administered by a nurse which costs me $4,000 every 28 days. thankfully i am part of a support program that my endocrinologist got me signed up for, so [along with my insurance and ohip] it doesn’t cost me anything. but there are people who don’t have coverage, so [paying for medication] is very much a hardship. some of the pharmaceutical companies will provide some compensation, but there’s not a lot of information about that. so if a patient can become part of a support group to learn these things, that’s good. they can learn from other patients.
i believe we are seeing the medical community now realizing that the patient perspective is vital in understanding this disease and they are wanting to hear from us which makes me very happy.
our voices are finally being heard.
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