Stories

 

Acromegaly Patient Stories

Due to the relative low incidence of acromegaly, patients diagnosed with this disease often feel isolated. They also expressed feelings of frustration and anger that it seemed to take so long for a diagnosis. One such patient wondered about a support group and from there our clinic assisted them in setting up a time and place and spreading the word. The Atlantic Acromegaly Support Group (AASG) meets twice a year.

 

We took it a step further and suggested anyone who wanted to do so could share his or her journey to diagnosis and treatment in the way of a patient narrative booklet. There are 13 stories in the booklet which have been included on this website, in addition to a glossary of terms.

 

Stories from those with Acromegaly:

 

What is Normal? Is this Normal?
Out of Character Behavior
A Slow and Sneaky Onset
Lovely Shoes
The Walls are Crooked
A Change of Life Event
How Long have I had This Tumour?
A Great Imagination
Off to the Doctor
My Journey Began
Living with Acromegaly requires a Good Friend
This ones for Wayne
Support of Loved Ones

 

Many people supported and contributed to this worthwhile project. We would like to acknowledge them. Lisa Tramble and Paula Sinclair, Endocrinology clinic nurses; Angela Luciano, Halifax Neuropituitary Program Coordinator; Dr. Dale Clayton, Endocrinologist; Adrian Dauphinee, graphic designer.

 

The Halifax Neuropituitary Program Team, which includes Dr. Ali Imran, Endocrinologist; Dr. Dale Clayton, Endocrinologist; Dr David Clarke, Neurosurgeon, Linda Clarke Neurosurgery Research Coordinator and nurse; Dr Ian Fleetwood, Neurosurgon; Dr. Liam Mulroy, Radiation Oncologist; Dr. Emad Massoud, Otolaryngologist.

 

The story contributors include: William Jones, Ed Young, Ashley Paquet, MacDonald Bruce Smith (Oz), Nancy Doane, Michelle LeCouteur, Peggy MacDonald, Charles Welton, Catherine Patterson, Esther Ann Gregory, Kim Sederquest, and Marlene Turner.

 

 

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, competing in triathlons (which involve swimming, biking and running). Almost 4 years ago I was diagnosed with acromegaly. As with most people with acromegaly my process of being 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 menstrual cycle issues. I visited with dermatologists, podiatrists, dentists, gynecologists, endocrinologists, dentists and rheumatologists, all of these specialists sent me home with a medication or a cream, and 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!” until the 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 of my head. After many hours he returned to explain that I had a "tumour" on my pituitary gland and that I would have to have more tests but this would probably explain all of my ailments.

 

My initial feeling was that of shock and disbelief and I did feel some anger, but eventually a huge sense ofreliefnfinally 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 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 “Sandostatin" a medication that helps to slow down the production of growth hormone. This medication was given by injection. The nurse specialist showed me how to give the needles to myself and even though I have been giving injections to my patients for more than 20 years I really found it emotionally challenging giving the injections to myself 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 also improved. The idea of brain surgery for me was terrifying, but I can honestly say the experience was really quite fine. The surgery was relatively minor and the recovery was quite rapid.

 

Within a few weeks of my surgery I had more energy, I was sleeping well, my pain in my hands, feet and jaw had reduced dramatically I had lost weight and even found that my old shoes were fitting me again!

 

Follow-up testing 2 months after my surgery revealed that my sleep apnea was gone and my growth hormone had normalized. After 6 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. 

 

 

Glossary of terms you may see in the stories:

 

The following is a list of terms your doctor may use when he or she discusses your pituitary tumour:

 

Adenoma - A benign tumour i.e. not cancerous.

 

Apnea - Cessation of breathing, such as sleep apnea.

 

Bromocriptine - An example of a dopamine agonist given orally to treat acromegaly.

 

CT or Cat Scan - A type of x-ray that displays detailed pictures or cross sections of the body.

 

Chronic - Persisting over a long period of time.

 

Cortisol - A hormone excreted by the adrenal glands ( located on top of the kidneys).  Cortisol helps the body use sugar and protein for energy and enables the body to recover from infections and stress. It is essential for life.

 

Diabetes mellitus - Too much sugar in the bloodstream. The body does not produce enough or properly respond to insulin (hormone produced in the pancreas). Insulin is the hormone that helps the body to use sugar to produce energy.

 

Diabetes Insipidis (DI) - A rare disorder of water balance caused by a deficiency of antidiuretic hormone (ADH). The kidneys are unable to reabsorb water, so large amounts of fluid are lost in the urine. Dehydration is the main concern of this condition.

 

Endocrine Glands - Produce and release hormones. The study of endocrine glands and the hormones they produce is called endocrinology. A doctor that specializes in hormone conditions is called an endocrinologist.

 

Glucose Tolerance Test - Testing body response to high blood glucose.

 

Growth Hormone - Is produced by the pituitary gland. It regulates growth in children and affects protein, sugar and fat metabolism in children and adults. Excess growth hormones causes acromegaly in adults.

 

Hypertension - High blood pressure.

 

Hypopituitarism - A deficiency of one or more hormones produced by the pituitary.

 

Insulin- like growth factor ( IGF-1) - IGF-1 can be measured in the blood and is used as a screening test for growth hormone deficiency and GH excess.

 

Lanreotide - A long acting analogue of somatostatin.

 

MRI (magnetic resonance imaging) - An imaging method using a magnetic field, radio waves and a computer to form a picture that is used to identify normal and diseased tissue.

 

Metabolism - Chemical process within the body by which energy is produced.

 

Octreotide - Somatostatin analogue available in short and long acting formalation.