Today, I had a cortisol profile test, which is used to assess the cortisol hormone levels throughout the morning and to ensure that the current dosage of hydrocortisone is the correct one for me.
The cortisol hormone is controlled by the pituitary gland that sits right at the base of the brain and has been compared to the size of a little pea. It is basically the master of all glands controlling all the vital hormones in your body. My meningioma sat right next to this little pea and touched on it a little. It is very sensitive and the slightest touch or disturbance could cause some disruption in hormone productions. There are naturally various different hormones controlled by the pituitary gland, and the one that didn’t quite work for me after the surgery was the cortisol hormone. Now, that is not to say that it may never recover, but, you know, brain surgery takes a while to recover from and I’m roughly 6 months in.
Cortisol is also known as the stress hormone, and it is indispensable. It is needed for fat metabolism (side note: it is nearly unavoidable to gain weight when on steroids and/or hydrocortisone), nervous and muscle function, immune responses and for glucose usage and storage in the body.
I did a test back in November (you have to wait 6 to 8 weeks after the surgery to even test hormonal functions because of the swelling and healing). It essentially showed that all hormones except, curiously, the cortisol hormone, were working properly again. So since then, I’ve been prescribed a cortisol replacement which is hydrocortisone, 20mg a day, distributed over morning, lunch and afternoon.
With it come fancy medical information and steroid treatment cards to carry with me at all times as well as a medical exemption card. I was also given a hydrocortisone emergency kit in case of, you guessed it, an emergency (aka an adrenal crisis), where my body should be producing more than the average cortisol but isn’t. This could be in case of severe physical/emotional shock (accident/bereavement) or a severe infection or illness. Touch wood, I haven’t had to use it yet. The first time I had to take the emergency kit (needle and all) through airport security, I felt so nervous they wouldn’t let me through, I probably needed an extra dose of hydrocortisone. Ha! The irony.
The test I did today involved two blood draws. The first one was at 9am and tests the cortisol level without hydrocortisone since yesterday afternoon. Then I took the morning tablet and four hours later, another blood sample was taken to be able to compare it to the first one. Next week, I will meet my endocrinologist and she’ll share the results of today’s test. Fingers crossed, my cortisol level these days is higher than last time, which was non-existent, so that I can lower the current dosage and not feel panic creep up every time I forget to take a tablet on time (which probably also doesn’t help due to the lack of natural cortisol production).
At the beginning I was in denial and apprehensive about taking hydrocortisone. I was and sometimes still am unsure what my body is telling me. I always considered myself as being quite self-aware and was also able to push my body physically in a good way. I felt robbed of this certainty and I’ve had to relearn to trust my body again. There are still times when paranoia sets in and I can’t identify whether I’m shaking because I’ve done an intense workout or whether my cortisol is too low, or whether I feel sick because I’m getting sick or because I need an extra pill to free up more glucose, or whether I am simply tired because I didn’t sleep well the night before and therefore my energy levels are low. I’m still struggling to accept that I might have to take a cortisol replacement for the rest of my life, but am also extremely grateful that medicine found a replacement tablet for a hormone so vital to life.
Considering everything that my body went through, it’s mind-boggling that I “only” have to take hydrocortisone. And I am still not at the end of my recovery, so who knows how this will end.