The symptoms of acromegaly may occur subtly over a period of years, but they can be quite alarming.
Imagine how terrifying it would be if your hands, feet, forehead, and jaw started to grow out of control!
Froggy, 38, a radio personality on the syndicated Elvis Duran and the Morning Show, had these and many other symptoms. But, because the changes were so gradual, it wasn’t until ten years after the symptoms began that he sought a diagnosis.
In 2010, Froggy learned he had acromegaly, commonly known as pituitary adenoma. The name “acromegaly” comes from the Greek words for “extremities” (acro) and “great” (megaly). Acromegaly affects just 50 to 70 people per million.
In acromegaly, a benign tumor grows on a person’s pituitary gland, causing the gland to release excess growth hormone. In children, the condition is called gigantism and leads to a dramatic increase in height.
Froggy sat down with Healthline to talk about his strange experience.
“I got married in 2002, and over a six-year period my hands grew so much I had to replace my wedding band four times. My shoe size changed from a ten to a 14. My speech had changed pretty drastically and also very slowly … This was due to my jaw growing. My lower jaw continued to grow when my upper jaw did not. At one point my upper jaw was sitting inside of my lower jaw,” said Froggy.
Froggy often felt tired, sweated profusely, had painful headaches, experienced problems with his vision, and would sometimes get dizzy and lose his balance.
After substantial weight gain that he originally attributed to getting older, around Thanksgiving 2009, Froggy went online to do research. “I typed in ‘hands, feet, face was growing,’” said Froggy.
The word acromegaly appeared on the screen. “I had never seen that word before,” Froggy said. “Then I found acromegalyinfo.com. It was a one-stop place where I could read everything about it, understand what it was, and learn what the treatments were. There was a list of ten symptoms and I had nine of them.
“I saw that the initial deal was brain surgery, where they go through your nose because the disease is caused by a tumor that sits on your pituitary gland. I saw that was the fix and thought I didn’t want to do that. I closed the browser and walked away,” he said.
It wasn’t until 2010, when Froggy’s mom was watching an episode of “Jeopardy!”, that Froggy decided to be more proactive. The question was, “A disease that causes enlargement of feet, hands, forehead, and jaw,” and the answer was, “what is acromegaly?” Froggy’s mom asked if he had ever heard the word acromegaly.
“I played dumb and said no. I had never spoken to my mom about it, but she was able to tell what was going on. I knew I had to do something. Four days later I went to see my primary care physician in South Florida,” Froggy said.
Froggy’s primary care doctor didn’t think he had the disease, but she sent him for a blood test. “Everything came back perfect. She said, ‘We can send you to an endocrinologist who can suggest an IGF-1 test to test your insulin growth factor and your growth hormone.’ That number is supposed to be 200 to 300. Mine was over 1200,” said Froggy.
What was Froggy’s reaction when he heard the diagnosis of acromegaly?
“It wasn’t fear; it was relief, because after dealing with all the changes — to finally know there is a problem and now we can fix it,” Froggy said. “It’s like if your car doesn’t work and every time you go to the mechanic it works fine, yet when you drive it down the road it breaks. The day it breaks at the mechanic, you’re happy. ‘Hey, finally, you can figure out what’s wrong.’”
Why hadn’t his family, his primary care doctor, or his coworkers ever expressed concern about his physical changes? Froggy said the changes were so gradual they went undetected. The only one who mentioned it was a former colleague whom he hadn’t seen for many years.
Dr. Steven Roper at Shands Hospital in Gainesville, Florida, gave Froggy his diagnosis and performed surgery to remove the pituitary tumor in June 2010. A year after his brain surgery, Froggy also had his jaw completely reconstructed.
Froggy is now 163 pounds, down from 205. “Now, post brain surgery and post two other operations due to acromegaly, I couldn’t be happier that I did it. The technology and the doctor I had were so good. I feel so much better now. My [growth hormone] levels are monitored,” Froggy said. “I feel better now at 38 than I did at 28.”
He added, ”I’m back to wearing the wedding ring my wife gave me the day I got married. I can’t remember the last time I had a headache. Now my shoe size is a 10 and a half. Last week I put a hat on that I hadn’t worn since ’09, and it fell down over my eyes.”
What makes Froggy so willing to talk openly his disease and the unusual symptoms he suffered?
“Being that I’m on a radio show, I feel I not only have the ability but I should help as many people as I possibly can. The day I was diagnosed, I called Elvis and said I wanted to talk about this on the air. He said, are you sure? I said yes, because if I can help one person who is feeling the way I felt for the last ten years … but doesn’t know what to do and hears this, then they can go to see an endocrinologist or visit acromegalyinfo.com and get information.”
Another of Froggy’s doctors, Dr. Laurence Kennedy, chairman of the endocrinology department at the Cleveland Clinic, told Healthline that acromegaly is easy to confirm in most cases by simply measuring levels of IGF-1 (insulin like growth factor-1), which are elevated in patients with the disease.
When the diagnosis is confirmed, the usual treatment is pituitary surgery. “In a few patients, if the pituitary tumor is in a certain location, we would recommend radiation to the pituitary,” he said.
Surgery sometimes returns growth hormone and IGF-1 levels to normal, explained Kennedy. He added, “But often it doesn’t. It will greatly decrease the levels, but they may still be elevated.”
The key to long-term success is getting IGF-1 levels back in the normal range. Kennedy said there are drugs that can successfully reduce growth hormone levels or block the action of growth hormone.
If the disease occurs before a person has finished puberty, it leads to an increased height of up to 9 feet tall.
“If the pituitary adenoma doesn’t develop until after the pubertal growth spurt is completed, then you can’t gain any more height. The growth excess goes into broadening the hands, feet, and other soft tissue changes,” Kennedy said.
The disease can occur in people of any race, ethnicity, or sex. Most cases are diagnosed when people are in middle age, but Kennedy said it can occur at any age. “I’ve seen children and adolescents with it,” he said. “The oldest I’ve seen is a woman in her mid-80s.”
Finally, Kennedy said that growth hormone also affects the metabolism of blood sugar, proteins, and fat, and it also has an effect on blood pressure.
“People with this condition have a greatly increased risk of diabetes and hypertension, which increases the risk of cardiovascular disease and premature death if the condition is not recognized and treated successfully,” Kennedy said.