I am 27 days post op for my second pituitary surgery. I had blood work done on post op day 16 after withholding for 24 hours, aka skipping my afternoon dose of hydrocortisone the day before. Late last Friday, I received some terrible news from my lab results. My body is making too much cortisol and ACTH so soon after pituitary surgery.
04/24/2011 post op day 5 @ 8 am (withheld pm dose on previous day)
cortisol 13.6 (4-22)
acth 24 (5-27)
glucose 96 (65-99)
sodium 142 (135-146)
05/06/2011 post op day 16 @ 8 am (withheld pm dose on previous day)
cortisol 17.1 (4-22)
acth 59 (5-27)
glucose 102 (65-99)
sodium 142 (135-146)
My cortisol increased to 17.1 in the am, and ACTH is more than twice normal. I did capture some high ACTH values prior to my first pituitary surgery, with one high ACTH during the day, and that was 125 baseline for IPSS. Some daytime values were in the high 20s but not like this. My 4 am ACTH in 2007 were 78 and 105.
** ** ** ** ** ** ** **
My friend Debra reminded me that a cure for Cyclical Cushing’s is very uncertain, often as low as 30% for the first pituitary surgery. She reviewed the medical literature and read every single study she could find on remission after pituitary surgery for Cushing’s. The highest cortisol value she could find that indicated remission was 14 (post op day 5 cortisol level while withholding HC dose for 24 hours). Mine are 13.6 and 17.1. Debra pointed to this European Journal of Endocrinology article entitled The Prevalence and Characteristic Features of Cyclicity and Variability in Cushing's Disease, which was published in 2009.
The second pituitary surgery did not cure my Cushing's. There is no other conclusion. I am just heartbroken and devastated about this medical development, even though I have known it was a possibility since 2007.
Cushing’s patients whose bodies will not stop producing cortisol must remove both adrenal glands in order to ultimately stop all cortisol production at the source. Since high cortisol breaks down many body systems, it just not an option to let Cushing’s keep going. So, we trade Cushing’s and high cortisol for Addison’s and low cortisol. REPEAT: I will trade the terribly relentless and rollercoaster cortisol levels of Cyclical Cushing's disease for the unpredictable make-no-cortisol-at-all and hope-there-is-no-emergency-or-trauma Addison's. I am now making plans to have both adrenal glands removed in a procedure called a bilateral adrenalectomy (BLA). NYU’s Department of Surgery posted information on the adrenalectomy procedure.
Last month, I posted a list of Cushie Warriors – 50 people from around the world who have had to have multiple surgeries in an attempt to rid themselves of Cushing’s. I wish we could get a restraining order for this Cushing’s menace.
My current dose of hydrocortisone is 15 mg at 8 am and 5 mg at 1 pm. I will taper that dose responsibly but quickly after speaking to my Cushing’s endocrinologist this Wednesday.
That’s all I have to say about that.
Melissa
04/24/2011 post op day 5 @ 8 am (withheld pm dose on previous day)
cortisol 13.6 (4-22)
acth 24 (5-27)
glucose 96 (65-99)
sodium 142 (135-146)
05/06/2011 post op day 16 @ 8 am (withheld pm dose on previous day)
cortisol 17.1 (4-22)
acth 59 (5-27)
glucose 102 (65-99)
sodium 142 (135-146)
My cortisol increased to 17.1 in the am, and ACTH is more than twice normal. I did capture some high ACTH values prior to my first pituitary surgery, with one high ACTH during the day, and that was 125 baseline for IPSS. Some daytime values were in the high 20s but not like this. My 4 am ACTH in 2007 were 78 and 105.
** ** ** ** ** ** ** **
My friend Debra reminded me that a cure for Cyclical Cushing’s is very uncertain, often as low as 30% for the first pituitary surgery. She reviewed the medical literature and read every single study she could find on remission after pituitary surgery for Cushing’s. The highest cortisol value she could find that indicated remission was 14 (post op day 5 cortisol level while withholding HC dose for 24 hours). Mine are 13.6 and 17.1. Debra pointed to this European Journal of Endocrinology article entitled The Prevalence and Characteristic Features of Cyclicity and Variability in Cushing's Disease, which was published in 2009.
The second pituitary surgery did not cure my Cushing's. There is no other conclusion. I am just heartbroken and devastated about this medical development, even though I have known it was a possibility since 2007.
Cushing’s patients whose bodies will not stop producing cortisol must remove both adrenal glands in order to ultimately stop all cortisol production at the source. Since high cortisol breaks down many body systems, it just not an option to let Cushing’s keep going. So, we trade Cushing’s and high cortisol for Addison’s and low cortisol. REPEAT: I will trade the terribly relentless and rollercoaster cortisol levels of Cyclical Cushing's disease for the unpredictable make-no-cortisol-at-all and hope-there-is-no-emergency-or-trauma Addison's. I am now making plans to have both adrenal glands removed in a procedure called a bilateral adrenalectomy (BLA). NYU’s Department of Surgery posted information on the adrenalectomy procedure.
Last month, I posted a list of Cushie Warriors – 50 people from around the world who have had to have multiple surgeries in an attempt to rid themselves of Cushing’s. I wish we could get a restraining order for this Cushing’s menace.
My current dose of hydrocortisone is 15 mg at 8 am and 5 mg at 1 pm. I will taper that dose responsibly but quickly after speaking to my Cushing’s endocrinologist this Wednesday.
That’s all I have to say about that.
Melissa
Melissa, my heart just aches and breaks for you, my prayers continue to be with you and your family. Stay strong and always know that your sharing your experiences and what you have learned will make a huge impact on those traveling down the Cushing's road after you.
ReplyDeleteMolli
monarchmomx2