Hi everyone, my name is Vanessa Pike-Russell. I’m a 50-year-old woman from Australia. I have a very rare disease called congenital panhypopituitarism.
I was born with growth hormone and adrenal insufficiency, chronic fatigue and many other health problems I’ll list later
I wasn’t diagnosed until the age of 13. My pituitary gland does not produce cortisol when I sleep, when I do a blood test in the morning The reading is zero. So for 13 years I was without life sustaining medication and untreated.
This was very dangerous, as an untreated adrenal crisis can mean death. Fortunately I had a determined mother, who When I was 13 I was not developing and was at the height and development of a 10-year-old.
My mother Yvonne took me to General practitioner Doctor after Doctor until someone finally listened to sense and sent me to an endochronologist. An endocrinologist is a specialist in the pituitary gland and endocrine system.
Dr Ray Slobodbnuik referred me to Wollongong hospital in New South Wales for two weeks battery of tests, including blood tests every half an hour.
After which, he diagnosed me with secondary Addison’s disease. It wasn’t until I was 20 and had an MRI that I had the diagnosis of panhypopituitarism due to an undeveloped pituitary gland and an absent Pituitary stalk.
My Pituitary gland Was under developed at birth, being only 40% the size of a normal pituitary gland. This is because of Growth hormone sufficiency and another factors Relating to my pregnancy.
Barrow Neurological Institute:
About the Pituitary Gland
“What is the pituitary gland?
Your pituitary (hypophysis) is a pea-sized endocrine gland at the base of your brain, behind the bridge of your nose and directly below your hypothalamus. It sits in an indent in the sphenoid bone called the sella turcica. The pituitary gland is one of eight interrelated major endocrine glands:
o Pineal gland
o Pituitary gland
o Thyroid gland
o Adrenal gland
o Ovary (women only)
o Testis (men only)
The pituitary is often referred to as the “master gland” because it not only secretes its own hormones, it tells other glands to produce hormones.
Your pituitary gland is divided into two main sections: the front (anterior) lobe and the back (posterior) lobe. Connecting the hypothalamus and pituitary gland is a stalk of blood vessels and nerves.
Through that stalk, the hypothalamus communicates with the anterior lobe via hormones and the posterior through nerve impulses.
The hypothalamus, which is above your pituitary gland, is the control center of some of your body’s basic operations.
It sends messages to your body’s autonomic nervous system, which controls things like blood pressure, heart rate, respiration, body temperature, sleep-wake cycle and digestion. The hypothalamus also tells the pituitary gland to produce and release hormones.
What does the pituitary gland do?
Glands are organs that secrete hormones — the “chemical messengers” of the body — that travel through your bloodstream to different cells, telling them what to do. The major hormones produced by the pituitary gland are:
ACTH: Adrenocorticotrophic hormone. Stimulates the production of cortisol, a “stress hormone” that maintains blood pressure and blood sugar levels.
FSH: Follicle-stimulating hormone. Promotes sperm production and stimulates the ovaries to produce estrogen.
LH: Luteinizing hormone. Stimulates ovulation in women and testosterone production in men.
GH: Growth hormone. Helps maintain healthy muscles and bones and manage fat distribution
PRL: Prolactin. Causes breast milk to be produced after childbirth. It also affects hormones that control the ovaries and testes, which can affect menstrual periods, sexual functions and fertility.
TSH: Thyroid-stimulating hormone. Stimulates the thyroid gland, which regulates metabolism, energy and the nervous system.
Oxytocin: Helps labor to progress, causes breast milk to flow, affects labor, breastfeeding, behavior and social interaction and the bonding between a mother and child.
ADH: Anti-diuretic hormone, or vasopressin. Regulates water balance and sodium levels.
Hormones are not released from the pituitary gland in a steady stream. They come in bursts, every one to three hours, and alternate between periods of activity and periods of inactivity.
What happens when the pituitary gland doesn’t work properly?
Your pituitary gland plays such an important role that a lot can go wrong if it overproduces hormones (hyperpituitarism) or under-produces hormones (hypopituitarism).
Overproduction or underproduction can affect metabolism, growth, blood pressure, sex functions and more.
Due to growth hormone, I was also born with Talipes equinovarus. The bones in my feet didn’t develop properly in womb and stayed turned inwards instead of developing and straightening out (clubbed feet 👣).
Talipes equinovarus: The common (“classic”) form of clubfoot. Talipes is made up of the Latin talus(ankle) + pes (foot). Equino- indicates the heel is elevated (like a horse’s) and -varus indicates it is turned inward. With this type of clubfoot, the foot is turned in sharply and the person seems to be walking on their ankle.
A clubfoot, also known as club foot, congenital talipes equinovarus (CTEV) is a congenital deformity (present at birth) in which the affected foot appears rotated internally at the ankle – the foot points down and inwards and the soles of the feet face each other.“
It was very painful and left me with constant pain and tightness, inflexible tendons and difficulty sitting on the floor for more than a few minutes due to poor circulation and other factors.
When I was put on cortisone replacement therapy, my quality of life improved greatly. Chronic fatigue that I was born with lessened, although it is still very much there. I have had three adrenal crisis situations since then and have had several hospital visits where I was put on a saline drip, and given 100 mg of Solucortef (Cortisone).
From the ages of 16 to 19, I was put on growth hormone (GH) injections to help me grow to 5ft 1 1/2. When I was 16 My bone age and height was that of a 13-year-old.
At the age of 49 years old I was given the green light to start on Growth Hormone replacement therapy again, under the Australian pharmaceutical benefits scheme( PBS) for $6 per Norditropin growth hormone pen, which provides me with a better quality of life, more energy, better metabolism, weight loss, benefiting heart function and more.
I couldn’t be more grateful to Sunny Ammerman and some of the ladies in an online group I’m in that talked about the benefits of growth hormone for their health and well-being. Ever since I restarted taking it I’ve had more energy and I am starting to enjoy my life more.
I had a boots and bar bar between them as a toddler to straighten my feet out on a regular basis. I had several operations to correct the club feet, including Achilles Tenotomy and foot reconstruction.
Gillette Children’s Specialty Healthcare:
“The Achilles tendon attaches the two calf muscles in the lower leg to the heel (calcaneus) bone. In clubfoot, the calf muscles and Achilles tendon are very tight.
This tightness limits the amount of flexibility in the ankle and pulls the heel up in the back into a non-functional position. More than 90% of children with clubfoot benefit from an Achilles tendon lengthening.
The surgery improves the foot’s position and flexibility and helps prevent the recurrence of clubfoot… After this, a final Ponseti cast is placed on the leg with the ankle flexed up. This cast remains in place for three weeks” 
At the age of nine, I had an operation, a full reconstruction surgery of both feet. They broke the bone of my feet, Chiselled them, reset them with a surgical staple, and plastered from my toes to my hips. After the operation recovery I had to learn to walk again.
It’s because of that surgery that I can walk without pigeon toe and wear Boots such as Doc Martens that the support the heel and allow me to stand, walk and function.
I often roll my ankle, causing great pain and soft tissue damage. I’ll go into greater detail in another article.
Living with pan hypopituitarism and adrenal insufficiency comes with challenges. It can be fatal if you go into adrenal crisis due to stress (physical or emotional), dehydration, illness and other factors.
Sometimes I have to stress dose, taking 2 to 4 times my normal dose. When a normal person gets sick, their cortisol level rises. When someone with pan hypopituitarism get sick, it dropped significantly which can cause coma and perhaps death
With correct medications, medical treatment from Endocrinologist and General practitioners (GPs) the life expectancy is quite good.
I’m relatively healthy. It is important to be in tune with your body and where needed, adjust the Cortisone level accordingly. I do my best to reduce the risk of dehydration, cold and flu, and take longer to recover from infection.
I have lived to the age of 50, thanks to the help of my aunt who helped to diagnose me, one GP and the four endocrinologists That we were able to request blood tests results to adjust my Cortizone and thyroid medication.
I am just so thankful that I was diagnosed and have survived. A fortunate life, And I’m grateful to the doctors, nurses and paramedics who are responsible for keeping me alive when in adrenal crisis. I am also very thankful for the Medicare in Australia, which includes free healthcare for people with a Medicare card.
I see my endocrinologist through a local hospital, for free, and all blood tests are also without charge. The hospital visits are free, I could not have afforded to go otherwise if I was in the USA or other country.
One day I hope to get medical insurance, whoever at the present moment that is not available to me due to financial restrictions.
I am being referred to see an orthopaedic surgeon, I first since the age of nine, towards having reconstruction surgery of my heels so that I can be in less pain and discomfort and hopefully be able to wear normal shoes for the first time ever.
Thanks for making it this far, I really appreciate your time and attention. I’m not saying any of this to get sympathy, empathy would be great however I’m trying to raise awareness of a very rare condition and some of the ways that it affects my life and those around me. Please visit our website
1 image – Hypopituitarism. Osmosis from Elserver. Accessed 22nd of March 2022.
2 About the Pituitary Gland Barrow Neurological Institute”. Accessed 22nd of March 2022. https://www.barrowneuro.org/centers-programs/pituitary-and-neuroendocrine-disease/resources/about-the-pituitary-gland/
3 Definition of Clubfoot. RxList.com – Owned and Operated by WebMD and part of the WebMD network. https://www.rxlist.com/clubfoot/definition.htm
4 Clubfoot Treatment Achilles Tenotomy. Gillette Children’s Specialty Healthcare. Accessed 22nd of March 2022