This is my experience with Addison’s Disease since 1982 when I was first diagnosed. I have had several Addisonian Crisis incidences and I’ll share those experiences below. I hope that by sharing this it will help and encourage someone who also has Addison’s Disease.
When I was four years old (in 1982) my parents noticed something was not quit right when I started to gain a lot of weight and was always hungry. At four years old I could eat as much as my father and still be hungry. The other noticeable change was that I was very strong for my age. My grand-father use to tell stories of me carrying heavy rocks on the beach like they were nothing. Everyone in my family was amazed by my “super” strength. Just to be clear, before any of these symptoms began showing up, life was completely normal. When my mom first took me to see a doctor she was told to put me on a diet. It broke her heart when I’d be asking for more food. My condition kept worsening so she took me back to the doctor. This time I was sent to see a local pediatrician. As soon as the pediatrician took a look at me he told my parents to pack their bags because he was sending me to the IWK hospital in Halifax, Nova Scotia. It was here that the doctors determined the issue was with my pituitary gland, diagnosing me with Cushing’s Disease (over production of cortisol). You see, my pituitary gland was telling my adrenal glands to produce too much cortisol.
The medical staff decided that it was best to remove my adrenal glands (even though they were healthy) because there wasn’t much that could have been done with the pituitary gland at the time. After my adrenal glands were removed my diagnosis went from CUSHING’S DISEASE (over production of cortisol from the adrenal) to ADDISON’S DISEASE (under production of cortisol from the adrenals). Some people are diagnosed with Addison’s Disease because their adrenal glands are under producing cortisol at some level (also know as Secondary adrenal insufficiency). Since my adrenal glands were completely removed, I have no production of cortisol from the adrenals at all (also know as Primary adrenal insufficiency). After a two month stay at the IWK hospital I was finally discharged for home.
To compensate for the lack of cortisol that would be normally produced by my adrenal glands, I was put on Florinef and Cortef tablets. Over the next few weeks that followed my weight gain began to come off and I started to look more like I did before the Cushing’s symptoms began. Today, I’m on 0.1 mg of Florinef per day (in the morning) and 7.5 mg of prednisone per day (5 mg in the morning and 2.5 mg in the evening). I also have on hand 100 mg vials of SOLU-CORTEF (hydrocortisone sodium succinate) that is to be used in emergency situations and injected into the quadricep muscle of my upper leg.
ADDISONIAN CRISIS (Adrenal Crisis)
I’m going to share two incidences I had with Addisonian Crisis starting with the one that happened in 2009 and ending with the most recent, yesterday, March 28, 2018.
In 2009, I was asked to join a team of researchers whose purpose was to visit an indigenous tribe on the island of Mindor in the Philippines and visually document their existence and extreme living conditions. I tried to prepare myself for what I was told was ahead in our journey, but I never expected it to be so difficult. We left at 5:00 am, hiking with backpacks full of supplies and video equipment in forty degrees’ heat with very little water and shelter from the direct sun. Every step I took felt like it would be my last as I struggled to get enough energy for the next. Approximately 14 hours after leaving our camp in the valley, we reached the Mt. Halcan Mangyan village. It was almost dark and we quickly setup our tents for the night and much needed sleep. At 5 am the next morning I woke and I could hardly sit up. I was feeling extremely exhausted and sick. Not sick like I had the flu, it was a different type of sick feeling. I began to feel weak and light headed. The first thought that came to my mind was, “I’m never going to be able to get down off this mountain like this.” I crawled out of my tent and laid on a bamboo platform outside. I started to remember some of the information I was reading about Addisonian Crisis before I left for my trip. Luckily, I had packed several vials of SOLU-CORTEF. I called to my friend who was with me to grab my SOLU-CORTEF injection from my pack. I managed to inject it into my leg and approximately 30 mins later I felt almost back to normal. I was still a bit tired but considering the 14 hour hike we had the day before that was to be expected. The severity of the hike, lack of water, and extreme temperatures is what I believe caused the Addisonian Crisis. The next day we hiked back down the mountain. It’s possible I might not have made it down off that mountain alive if I hadn’t had the SOLU-CORTEF injection.
Yesterday, March 28, 2018 I had an inguinal hernia repair done by open incision. The surgery went well and I was brought to the recovery room to be monitored for the day. When the spinal anesthetic began to wear off I started to feel a lot of pain from the surgery. I had not been given any pain meds up to this point. The pain was gradually getting worse so I asked the nurse for medicine to ease the pain. All of a sudden, at approximately four hours after the surgery and before I was given any pain medicine, I started to feel sick to my stomach and extremely warm. My wife grabbed a bin for me to throw-up in and she called for the nurse. They set me up in bed and as soon as I vomited I felt myself fading away. The only words I could get out was, “I’m going to faint.” My wife tells me that I went completely grey and was out for about 45 seconds. She said during this time I was convulsing like I was having a seizure. My wife and the nurse were both trying to hold me down so I didn’t hurt myself and rip out my stitches. When I came to it was only long enough to vomit again, say to the nurse, “I feel exhausted,” and then I fainted for a second time. My wife tells me I was dripping wet with sweat. The next time I came to I could hear someone say, “Just breath, just breath. Good, Good.” I opened my eyes and the only thing I could get out was, “I think I need SOLU-CORTEF,” then I vomited and fainted for a third time. While I was out this time the doctor came rushing in and ordered one of the nurses to get pain medication and the crash cart because my heart rate had dropped to 30 bpm and my blood pressure was plummeting. The third time I came to I woke to eight nurses and doctors around my bed. Fear was in everyones eyes. Another nurse was giving me an injection for pain in my leg while another was loading the SOLU-CORTEF into my IV. Amazingly, at approximately 20 minutes after the Solu-Cortef started to get into my body I felt almost back to myself again. I feel that if it wasn’t for the Solu-Cortef I may have died from lack of cortisol in my body. The trauma from the surgery and the post surgery pain without any additional cortisol added to my body is what caused the Addisonian crisis.
For the most part I’ve been able to manage a normal active life for the past 36 years. I work out at the gym and jog 5 kms on a regular basis. I’m still learning to recognize the symptoms of Addison’s Disease in my own life and sometimes double or triple my daily dose of prednisone when needed. I’ll continue to keep a few doses of Solu-Cortef on hand and hope that I never have to use it again.