Panhypopituitarism, Hormones and Me

Hi I’m Ren, and the pituitary gland in my brain is purely there for decoration! While that’s a little humour I like to use, living with Panhypopituitarism is a bit more serious.

A bit of background

I was born in early May 1982, a little ahead of schedule, but otherwise a good birth. Big shout out: I’m honestly so fortunate to have a wonderful mum, who has gone above and beyond to look after me from that day 1.

After my birth, it wasn’t long before I was showing symptoms of my pituitary gland not working. I’m not sure why it never worked, it didn’t have a tumour on it which can be a reason, I just figure the engine didn’t start! 😂

For the first year of my life, Mum felt like something was not quite right and just monitored me, and take me to the doctors when needed. Finally at 18 months old, a diagnosis was made:

(congenital) panhypopituitarism (CPHP)  [pan-hī-pō-pə-ˈtü-ə-tə-ˌri-zəm]

Congenital: ‘by birth’
Pan: ‘all’
Hypo: ‘less or absent’
A rare condition where there is deficient production of hormones by the pituitary gland, also known as the ‘master gland’.

For something that is only pea-sized, a working one does a lot. The pituitary monitors and regulates many bodily functions through the hormones that it produces.  They are; growth hormone (GH), cortisol hormone (ACTH), thyroid hormone (TSH), reproductive hormones (LH/FSH), melanin hormone (MSH), water hormone (ADH), oxytocin and prolactin.

The severity of CPHP (I’m just going to use the abbreviation!), vary depending on the age of onset, the extent of hormone deficiency, and other health issues if present.  Signs or symptoms can include growth problems (in children), obesity (in adults), hair loss, slow heart rate, low blood sugar, low blood pressure, fatigue, and reproduction issues. 

In my case, I have an overall hormone deficiency that affects my growth, metabolism, and reproductive system.

Forgetting the latter for the moment, I was put on daily growth hormone injections, to help with the lack of growing I did past age 1. I also took daily steroid and thyroxine pills as a metabolic replacement.

The Daily Meds

Throughout my childhood, I had 3 monthly blood tests and check-ups with my paediatric specialist, to monitor my hormone levels and adjust my medication if needed.

I was nearly always the shortest in my class, but the daily growth hormone injections thankfully got me to the 153cm/5ft frame I’m in.

Honestly, I hated doing the injections back then. They were a threatening length of around 1 inch, that I would need to inject in my thigh. I learned to self-inject at age 4, as mum was normally working around that time of day, and my nana didn’t want to do it and hurt me. Nowadays the needles are a lot smaller – 4mm.

The only time I didn’t really mind the injections, was if I went on marching trips away and my friends would like watching it! 🙈😂

I haven’t always been the best version of myself when its come to my medication. A nice healthy side of denial and rebelliousness has shadowed me. Some days when I was around 12, I secretly squirted the solution out my bedroom window into the garden. My growth basically plateaued that year – I don’t remember how the plants did!

It must have been shortly after a regular specialist appointment, that the guilt may have finally hit me. I came clean to mum, and she couldn’t even speak to me.

My growth chart plateaued again at age 16, but naturally that time! Sometimes you just don’t get the gravity of things you do when you’re younger, than when you’re an adult! I wish I had the knowledge then, that I have now.

Coming back to the reproductive side of things, I was 13 years old when I started taking those hormone-replacement pills. The Provera and Trisequins pills needed to be taken daily to mimic the hormones that I don’t naturally secrete.

And again honestly, I haven’t been amazing at taking what I call the ‘period pills’ regularly either. After all, skipping a period was great, so there have been large gaps between periods.

Secondary Issues

Congenital Panhypopituitarism has led to a treasure trove of secondary conditions for me, including adrenal insufficiency, osteoporosis, but by far the hardest challenge is complete infertility due to ovarian failure. It’s been a battle that I will go into and write more on soon.

Secondary adrenal insufficiency (SAI) is a lack of the adrenocorticotropic hormone (ACTH), that controls your cortisol levels. A crisis can occur when cortisol levels become dangerously low, and can be life threatening. I have suffered through a few dozen of these, some more serious than others.  Most of the signs of a crisis that I get is stomach cramps, major hot fever flushes, weakness, vomiting and collapsing only occasionally.

The most serious crisis was when I was five years old, and resulted in a febrile fit. Gratefully, febrile fits under seven years old, mostly don’t have long term brain effects. 

The most recent was July 2022, when I was burned out from the stress of a new job, the internal pressure to do well in it, and be a great attentive mum to Kaydence. After being on some flu pills, and being crook one day, it led me to have a really low heart rate (thanks Apple Watch!). I went to hospital that evening when feeling really faint, and I almost arrested as I was bradycardic. Thankfully the high stress dose of hydrocortisone they gave me, kicked into action before they had to resus me or give adrenaline! A year on, I still get pretty shocked that my body can just fall victim to these situations, hence why I try to do better for me and my 1yo daughter.

The Osteoporosis segment is probably largely attributed to me not taking the period pills. Nowadays, I’m prescribed on Provera and Progynova pills. Other than overall womanly health, as I don’t secrete the hormone estradiol, it also prevents bone loss. It’s meant that I’ve gone through early menopause, as I don’t get periods naturally, and only get them synthetically. Because I neglect taking the period pills for short-term gain, it hurts my bones in the long run. I’ve recently been confirmed that I have Osteoporosis after been in the Osteopenia waiting room for over 10 years.

After being in such a selfish ‘short-term’ gain mindset for some time, my daughter is helping to shift that, as I want to be in her life for as long as possible. 

While I am good at taking my metabolic pills, Hydrocortisone and Thyroxine, because of a phone reminder prompt I’ve set every morning. I need to make another one to do the period pills, so I get the push to take them.

The wrap-up

I am a sharer, and while not proud of my shortcomings, they are part of my story and what makes me me.

There aren’t many people out there with what I have, so if this post brings some hope and information to one person in a similar position, then that’s awesome! Otherwise, it’s great to advocate and bring awareness to the condition.

My inbox is always open, and while my first priority is always my daughter, I will endeavour to reply as soon as I can. ♥️

FAQ’s

How common is panhypopituitarism?
Panhypopituitarism is rare. There are approximately four cases of panhypopituitarism per 100,000 people across the globe per year.

Is panhypopituitarism life-threatening?
Yes, panhypopituitarism can be life-threatening, especially if you have a significant deficiency of adrenocorticotropic hormone (ACTH or corticotropin).