My scary cortisol test was completed last week. I had this test done for the third time to confirm my diagnosis of Addison’s Disease. I got tested in hopes of being placed on a cortisol pump.
My test was an interesting experience. I was pulled of my normal steroid medication (Cortef) and put on dexamethasone in order to get an accurate blood serum cortisol reading. My body doesnt make cortisol, so I felt terrible and it was dangerous.
BUT I MADE IT!
I was secretly hoping for normal results….that I would be able to be taken off the steroids completely and live a normal life. (insert awkward thumbs up here) 😀
The morning of my test, I held my A.M dose and my mother drove me to the local lab testing center. I called ahead multiple times to confirm I had the earliest appointment possible due to the dangers of being off cortisol. I arrived at 7:00am with my confirmation number in hand, only to be told that I needed a totally different set of paperwork. Even though I made the appointment over the phone, the nurse informed me that this specific lab only accepted online appointments and I would be put into the system as a walk in appointment. This terrified me, the lab was already packed with a minimum of at least 20 people….all demanding to get to work on time..etc.
I explained to the nurse I had adrenal failure and tried to get my RIGHTFUL appointment that I had the confirmation number for.
I didn’t have my blood drawn until 8:30am. I was shaking and feeling terrible. I was scared to go into an adrenal crisis. Fortunately, my mother was with me (She has her masters in registered nursing) I knew she would be able to inject me with the emergency shot should something go array.
As soon as the phlebotomist took the tourniquet off my arm, I swallowed my pills. Only to have her realize she FORGOT to draw the cortisol lab……(I had a thyroid panel and CBC done as well)
OF ALL THE ONES TO FORGET….THAT ONE! After I had taken the cortef pills…..
Fortunately, she realized the mistake in time before the pills had metabolized.
I waited and waited to see the results……
They were low….bad low…..
I have addison’s disease, without a question……without a doubt. My adrenals are dead.
So what does all this mean?
I am still waiting to be placed on the pump.
BUT until then, THERE IS HOPE in the MEANTIME.
My amazing, wonderful, GOD sent, primary physician has heard my woes about how difficult it is for me to function now with the cortef…. the 90 minute half life “drop” leaves me exhausted, unable to work or drive.
He contacted a pharmacist at the local compounding pharmacy regarding this issue. Together, they created a time released cortisol pill.
I just got these today. I will start them tomorrow morning and track my progress.
Even though I am waiting on the pump, I am hoping this will give me a boost in my quality of life.
Yeah, I want to be on the pump ASAP….but for now it is nice to know there is another option that may make my life better…..
Thank GOD for Doctors with a good head on their shoulders and compassion in their hearts.
Thank you to everyone who prayed about this test. I AM SO GLAD it is OVER!
(Here’s what happened with those pills- Time Release Update- HC Pills )