Hello. My name is Vanessa Pike-Russell and this is my Congenital Panhypopituitarism Diagnosis journey.
I was born with Panhypopituitarism on 17th October 1971. I was induced as I was two weeks overdue and removed via cesarian, with forceps. I presented with severe Talipes Equinovarus (also known as clubfeet) in both feet. I had a blood transfusion at birth because of jaundice.
I was constantly sick until I was diagnosed. I experienced severe chronic fatigue every day, a well as hypoglycemia. I took much longer to recover from a cold or flu. Infections lasted longer and I was sometimes resistant to antibiotics. I was three years shorter than my peers for most of my life because of Growth Hormone Deficiency. For example, when I was 13 my bone age was 10.
I wasn’t diagnosed with Panhypopituitarism until I was thirteen (13) years of age. My mother took me from doctor to doctor, lamenting that I wasn’t developing, short stature and always sick. One doctor told me to hang from the monkey bars so I could grow. Yes, you heard that correctly. After the sixth doctor, I was referred to an Endocrinologist, Dr Ray Slobodnuik. He agreed that there was something wrong and I undertook a battery of tests whilst in hospital for two weeks. Next to my name on the wall were the words ‘Addison’s Disease’. I was told that I had secondary Addison’s Disease as it was congenital Adrenal Insufficiency.
I was put on Cortisone Acetate (Cortisone / Cortisteroid) at 13 years of age. The blood tests I undertook at the Shellharbour hospital plus later blood tests showed that I woke up with no Cortisone in my system. It explained the chronic illness and fatigue that I experienced and I was lucky that I was still alive without it. I was also put on Thyroxine (thyroid replacement) at 13. Both of these medications increased my quality of life and health. At age 16 I went onto Growth Hormone injections, ceasing when I was over 19. I then went onto Oestrogen and Progesterone when in my early 20s due to the fact I didn’t produce male and female hormones.
Over the years 0-13, I went into the hospital with adrenal crisis without knowing what was happening. Once I had pain similar to appendicitis. I was put on a drip and they pressed in the area of the pain and set me up to be operated on. Before the operation was due the pain went away. They thought it was just my being afraid of the operation but I stressed to them that the pain had ceased. Luckily my mother believed me and she had the operation called off. If I had been operated on there was the chance I could have died. I was very lucky.
I had experienced hypoglycemia as a child and often felt very dizzy and disoriented when my blood sugar level was low. When I looked at the symptoms of panhypopituitarism it all made sense.
Medical Resonance Imaging (MRI) first came into use in Australia when I was in my early 20s and I was correctly diagnosed with Congenital Panhypopituitarism. My pituitary gland was only 60% of the normal size and I had a missing pituitary stalk, caused by Pituitary Stalk Interruption Syndrome due to growth hormone insufficiency. This means that my body is dependent on the corticosteroids I take every day as my body doesn’t produce any. If my body is put under stress then I need more oral cortisone medication. If I go into severe adrenal insufficiency I have to go to a hospital, be put on a drip and have an injection of cortisone 100mg. If this doesn’t happen I can go into a coma.
My endocrinologist suggested that I research my condition and listen to my body. When I am mildly sick I increase my supplements (Echinacea, Multivitamins, Sambucol, Spirulina, Vitamin C and more), boost up my intake of vegetables, buy a detox fruit and vegetable juice, and go to the General Practitioner (G.P.) doctor. I often have to take longer courses of antibiotics before an infection clears up.
When exercising or out and about I try very hard not to get a chill or become overheated as this can cause stress to my body. Dehydration is very dangerous for someone with Panhypopituitarism. I always take water with me when exercising and use Hydolyte electrolyte mix (powder and water) or ice blocks when feeling dehydrated as electrolyte balance is very important.
My body reacts poorly to physical or mental stress. I sometimes go into shock and have to be hospitalised or ‘stress dose’ with extra cortisone. A few years ago I had to pick up the back of my mobility scooter and caused my body to go into shock. I use one because of the talipes equinovarus (club feet) and also a bad neck from a fall down 23 concrete stairs, and later hitting my head on the ceiling a few times in a car accident. I can’t drive due to neck problems and poor concentration. It just isn’t safe for me to be on the road.
My neck makes a ‘click, click, click’ sound when I walk and I have pain in my neck and shoulders every day of my life. My husband and my massage therapist help to relieve some of the pain and discomfort but my chiropractor warns me not to carry any heavy shopping bags. Having a mobility scooter allows me some sense of freedom, although I am restricted to 5-10km each way and I have to take the bus to go shopping in nearby towns.
I am very fortunate that I am generally in good health when not in adrenal crisis. I have a ‘trivial’ leaky valve in my heart, which causes a slight heart murmur. My cholesterol is a little high and I have been diagnosed with fatty liver. My blood sugar level (BSL) often spikes when overindulging on sugar or when severely stressed. I take metformin and inject myself once a week with a Bidureon injection to lower my BSL. I take Avorstatin for cholesterol plus Femosten for hormone replacement therapy.
I also take Tegretol for mood stabilisation. Depression is often a symptom of panhypopituitarism and also with chronic disease. I feel more balanced when I take a mood stabiliser although I am allergic to a few. I have had clinical depression over the years and it can be crippling. I often experience insomnia and find that meditating when listening to nature sounds helps to soothe me off to sleep. If that doesn’t work then I get up and do something productive and sleep or nap during the day when required. I often use a sleeping mask to help me go into a deep sleep.
I don’t have children. I was told when I was 13 that it was very unlikely I could have children without a lot of intervention and in later years I was told that I would have to be on bed rest and could damage my health and probably not survive the pregnancy. I also have club feet and any extra weight makes my ankles even weaker.
Fortunately, I have a husband who has two sons, now in their 30s. When we first met they were in their teens. I was also very lucky to be able to help raise my sister who came along when I was 14 years of age. I was also a primary school teacher, teaching ages 5 to 12, for close to 10 years, which I loved. I also was able to help raise my sister’s son, Levi until he was 4 years of age.
So, that’s the start of my panhypopituitarism journey. I hope you will join me and share your journey on panhypopituitarism.org. Have a nice day, and stay safe.