I’ve been a little bit slow on the blog front lately, I just haven’t had the energy since being back to work properly. Who knew being sat at your bedroom desk all day could be so tiring?? So bear with me, this may take a few days…
Let’s rewind back to Christmas, I’d just had the biopsy 16th of December and was home 4 days later on the 20th. Like most, Christmas is my favourite time of the year and I was always one for those big family get together’s. During the day we went to my Nan’s for Christmas dinner, I had a HUGE plate of food, as you do though right?? Only this time round I was hungry again 5 minutes later, so hungry that I managed 5 Yorkshire puddings that day- And that was just the main course, there was still room for dessert!
That year I was determined to have all the family together, the day had exhausted me already, but of course I was just so happy to have everyone in the same room after the year we had been through the buzz kept me going. However, as the evening went on, the sounds started to overwhelm me, just the slightest laugh or movement of a chair was that much more heightened, it was painful. I had to finally give in and take myself upstairs. It broke my heart that I wasn’t able to join in with the games, crack jokes and just have a laugh. I had no energy left that evening at all.
Where is it?
As I’ve mentioned previously, the tumour is located in the suprasellar region of my brain. In between the hypothalamus and the pituatry gland. I have inserted a diagram to help with this.
I was as puzzled as ever when first told the location of the tumour, but as they say knowledge is power, and I’m learning so much on this journey. There’s never a day off, from the moment that 6am alarm wakes me it’s time for the first medication of the day, this enables my body to wake up, and ultimately what keeps me alive. I’ve always got to to be on the ball with my meds, lose one on the floor and it’s a guessing game. Have I just put myself at risk of a seizure? Am I going to want to down an ice cold drink and go to the toilet every 10 minutes? Or maybe it was a steroid and I’m now at risk of an adrenal crisis. As I’ve become more confident in my understanding of the Endocrine system and the health conditions that I have, I’ve been able to manage my daily lifestyle much better and my general health has been great over the past couple of years.
For such a small thing, the pituitary gland plays an extremely important role in regulating hormone glands around our body, these are; the thyroid, adrenals, ovaries and testicles. Unfortunately my pituitary gland is not producing the sufficient levels of hormones to enable my thyroid, adrenals and ovaries to work correctly anymore because of the damage the tumour has done. The pituatry produces a steroid hormone called cortisol which makes the adrenal glands work, In my case I take replacement steroids (have to be quiet when I say that in the gym because they’ll all want some. Imagine if they heard about the boxes of growth hormone in my fridge too). The pituatry is also where the sex hormones are stimulated, gonadotrophins as well as prolactin, milk production. We then have the thyroid hormone which is sadly a gonna in my case too. And last but not least, the anti-diuretic hormone, aka vasopressin. This hormone controls water balance and blood pressure. The loss of all these hormones together is called panhypopituitarism.
The main function of the hypothalamus is to keep the body in a stable, constant condition. Heard that before in science? Takes me back to learning about homeostasis. It controls the function of temperature regulation, food intake, thirst and fluid intake, sleep and wake patterns, emotional behaviour and memory. As you can imagine, with my hypothalamus now being damaged, these parts of my life have been affected in a major way, It’s the little things that I took for granted before like being able to feel full after meals and getting a correct temperature reading when I’m ill. After official diagnosis things that I had been living with all my life that I never considered to be abnormal were brought to light.
How were they diagnosed?
Before the official diagnosis, I had tests that confirmed I did not produce the female hormones, hence the reason for not starting my periods. The doctor prescribed Oestrogen to help my body slowly develop to where it needed to be. After surgery It was then discovered that my thyroid had not been working and I was given medication to replace this too. At the time of surgery I was taking lots of steroids, as you do in preparation for something like that- but now I take steroids daily to replace my bodies natural stress hormone. Back in March, 16 I went to Addenbrookes Woolfson Clinic for an Insulin Tolerance Test. The insulin was given to me through a canula which caused my blood sugar levels to drop, stimulating growth hormone and cortisol in my body. Although this test didn’t quite go to plan on the day as I was proving no signs of dropping or weakness, (thanks Grandad for that Scottish blood) my levels of cortisol were extremely low, my growth hormone readings were almost non existent and my osmolality results showed I had diabetes insipidus.
I figured that this blog has probably been the hardest to write so far as it was one of the toughest parts of the journey. Although we had the good news and life could somehow now resume, from that moment on it felt like the guidance we had was taken away and we were back to walking in the dark. I remember one of my last appointments at Addenbrookes, I was shown how to use my growth hormone needle, which I now have to inject every night. My mum was shown how to administer my emergency cortisol injection, we were handed leaflets on Diabetes Insipidus and then we set off to see how hard it could be, to manage all of the drama the blueberry has caused. It was just so daunting, having your whole life turned upside down for the past year then having to go back to what little reality was left; school, friends and pass your GCSE’s whilst feeling like a whole new person.
But what’s more daunting is looking back and realising how many years ago that was now and how old I’m getting!! Thankfully I passed Maths, I couldn’t have done that for another year. Jokes aside, school was incredibly hard for me when I returned and I think it’s important to highlight that in a separate blog. But there was no better feeling than results day knowing all my hard work had paid off and I can never thank the people who helped me through that time enough💓
Read more on panhypopituitarism here: https://www.chop.edu/conditions-diseases/panhypopituitarism-children
Read more from the Pituatry Foundation here: https://www.pituitary.org.uk/information/what-is-the-pituitary-gland/