Hey everyone! I've missed you all. It's not that I haven't. I just haven't even able to keep up on posting like I wish I could. I hope you will always understand why and forgive me.
Today, I'm back with a big update.
I now walk the final steps towards BLA and a cure from Cushing's.
After two non-curative transsphenoidal pituitary surgeries, I spent many months wondering what to do and just trying to manage my symptoms. That has become increasing difficult and almost impossible for me as the days and months wore on.
I started ketoconazole in August 2012 with mixed results. I slept well sometimes but still would wake up at 4:00 am, a Cushie's witching hour. I felt good at the beginning but it started to wear off. I spent some hours in the ER on 10/10/12 as I faced severe symptoms of adrenal insufficiency. I needed IV saline and IV hydrocortisone when the injection of 100 mg of Solu-cortef my husband gave me at home wasn't working. I lost 23 pounds but I felt weak, unfocused, irritable, and overwhelmed. My daytime drowsiness was worse than ever. I complained to Dr F in June 2013 that I had narcolepsy; I would sit on the couch for only a few moments in the late morning or afternoon, and I would fall asleep instantly. This is after having sleeping six to eight hours. I would just pass out.
In the past few months, I've taken Ritalin at Dr F's suggestion, and it has worked to keep me awake during the day. I take a long-acting dose in the am and a short acting dose in the early pm.
I dropped the ketoconazole and a week later, I saw Dr F for an office visit last Monday. He said he needed recent tests before he could clear me for surgery. I tested every day and night until the early hours of Sunday morning.
Midnight cortisol serums
normal is less than 5
diagnostic is greater than 7.5
My results six nights in a row:
5.2, 16.1, 15.4, 8.8, 19.4, 10.8
I am pretty astonished. I had no idea I was high, much less this high. My high test value before was 12.8. My cortisol has been so high at night that my body is producing zero cortisol during the day. In the past, before testing, my body has been getting only the 20 mg of morning Cortef that I took while I was on Keto and it wasn't enough. My body was unhappy probably because it had become accustomed to such high levels of cortisol. Any drop have me symptoms of adrenal insufficiency: nausea, diarrhea, loss of appetite, extreme fatigue, muscle pain, joint point, grouchiness.
Now, I am pretty happy to have these test feathers in my rediagnosis cap. I am waiting for results on four UFCs w/ 17OHS and five salivas taken during the same time period as the high midnight cortisol serums. I feel good that some will be high.
I hope to be cleared for BLA within the week. There is no visible tumor on my pituitary. Even an exploratory third surgery is not wise, since my second neurosurgeon said surgery would "result in a guaranteed cerebrospinal fluid leak" based on the post operative tissue's location at the bottom of the gland. My doctor and I know that I am not a good fit for other medical therapies. It's BLA time. I plan on having a BLA before the end of the year, since insurance pays 100% now.
I have done everything I can in the last six years as a Cushing's patient. I have done everything the medical community has required of me, and many things that should not be required: guessing when to test, knowing what my body was feeling at every moment and what medication would best treat it, watching over every lab technician like a hawk, feeling guilty after outbursts of emotion towards my family and every time I missed family time so I could nap, even keeping up on refills of 15 medications and organizing a 31-day pill case, even when I wasn't sure I was feeling better from any of it. I have suffered in countless MRI machines that could barely hold my large frame but I made it through the hour with some anti-anxiety pills, pain meds, and a one moment at a time attitude.
This is my road. This is my path. I accept it. I feel relief and confidence. I am feeling peaceful and hopeful.
Stay tuned as a march my way towards my cure from the cortisol beast. Thanks for sticking with me.