Teagan’s Journey

Panhypopituitarism

My name is Teagan, and it was 27 years ago that I was diagnosed with Panhypopituitarism, just four days after I was born in 1996. If it wasn’t for my mum and an extraordinary Endocrinologist I don’t know how I would have survived.

I am the youngest of three, I was 10-pound born and had talipes and dislocated hips, so when mum tried to tell the medical team she thought something else was wrong, they told her she was overly worried and that I was just tired from a rough delivery. I would cry a little but then be asleep again before I was even comforted. I would also only feed a little and then go quiet and sleep for long hours. Mum even tried cold water washes with no reaction from me.

After some time, Mum took me to the Nurse’s station and told them that she wouldn’t leave until they checked my Blood Glucose Level, which they eventually did and discovered that my blood sugar was 1.3. I was immediately rushed to NICU. While in NICU, many blood tests, X-rays, scans and ultrasounds were done; within 12 hrs, I had a staph infection; on day 1, my bilirubin levels were sky high, and on day 2, my adrenal glands were scanned. Later that evening, I had an adrenal crisis as my drip had not been reconnected. It was at this point that the Endocrine team decided to start me on Hydrocortisone and Thyroxine as they suspected that I may have Hypopituitarism.

Within a few months, an MRI was performed, which revealed my Anterior Pituitary Gland was missing and the posterior was an irregular shape. My Hormone replacement medication was adjusted to ensure I was on the correct doses, and Growth Hormone was introduced. At 16 – 18 months, I was also diagnosed with Bilateral Sensory Neural Deafness, for which we also had no real explanation.

My childhood was quite an adventure, in and out of the hospital, with simple colds, viruses, UTIs or something I picked up while there. My immune system wasn’t very strong, but I didn’t know any different as it was all normal for me. I just needed to understand the basic warning signs for me which would typically indicate I may be at risk of an adrenal crisis:

  • My ghostly pale skin
  • Feeling deficient in energy
  • Any type of vomiting
  • Losing consciousness

None of this ever put a damper on my life. The hospital was like a second home for me, and I was a mischievous kid when I got my energy back. I will never forget when my mum taught me at a very young age about self-advocating and speaking up if something wasn’t right, as I knew my body best as the person living with this medical condition.

I am now 27 years old and work as a program support worker and volunteer at a children’s charity. I have learned to live with and manage my Panhypopituitarism. This includes understanding my warning signs when I am unwell and how to respond, know when my emergency injection is needed, and when to ring 000 (which hasn’t been very often, luckily!).

Thanks to my mum, I’ve learnt to self-advocate if I feel unwell or if my medical information is incorrectly explained. But mum still steps in when I can’t advocate for myself. Hats off to all the parents and carers who support children with a medical condition, because being a carer and a strong advocate can be challenging. Children like me can grow up to live reasonably normal everyday lives because we have someone in our corner looking out for us!