Most doctors I've seen do not think I have the clinical appearance of an acromegalic. The neurosurgeon I met with after the discovery of my pituitary tumor believed the mass was either a prolactinoma or nonhormone-secreting macroadenoma. His description of an acromegalic's appearance was exaggerated and not wholly accurate. He had no idea a patient with this disease was sitting in front of him. The next doctor I saw, an endocrinologist, ordered blood work as a matter of procedure - not because he believed I had acromegaly. He was surprised when my lab results returned positive and said I was the second acromegalic he'd met in his entire career.
One of the many changes seen in a person with acromegaly is an enlargement of the nose. I thought this was evident in my case, and my endocrinologist at MD Anderson agreed. A couple of years ago he sent me a copy of a letter addressed to my neurosurgeon. In it, he mentions, "The patient did supply me with some pictures between 1994 and the time of her surgery, there is perhaps more prominence of her nose, which can be seen on serial images..."
As you can see from the photos above, the tip of my nose did change shape. It was such a subtle change over time that I did not take notice of this until I was diagnosed with acromegaly in 2005. Fortunately, that's all that is noticeably different. My IGF-1 hormone levels were barely elevated (as documented in my lab work), and because of this my appearance is mildly altered. Most patients with acromegaly have an enormous amount of growth hormone circulating in their system, and the effects are devastating if it is not controlled.
Here are some of the physical signs and symptoms of acromegaly:Enlarged hands and feet
* Larger and broader facial features
Enlarged liver, heart, kidneys, spleen and other organs
Increased chest size (barrel chest)
Jaw protrusion
* Thickened, oily skin
* Excessive sweating
Skin Tags
Fatigue and muscle weakness
A deepened, husky voice
Severe snoring or sleep apnea
Impaired vision
* Headaches
Enlarged tongue
Back pain
Pain and limited mobility in joints
* Menstrual cycle irregularities in women
* Symptoms I noticed when diagnosed in 2005.
An important step in early intervention is not just looking for the disease outwardly, but having blood work done to rule it out. If doctors excuse the possibility of acromegaly based on the appearance of a patient - it can easily be missed and diagnosis is delayed. This is a common problem, especially among younger acromegalics. If acromegaly is not found early enough, a person's appearance will change and their health can be compromised as a result of excess hormone excretion. Many patients who manifest the clinical appearance of acromegaly talk about how they told their doctors for years the physical changes they experienced, but their complaints were either dismissed or ignored. I suspect this is probably due to a lack of exposure to patients living with this rare disease.
