Cushings Disease Update

I recently had a follow up with my endocrinologist here. So my cushings disease has really been on my mind lately and really how much impact it has on my life. It has affected me in every way- emotionally, spiritually, financially, and physically. I know I will have it for life- surgery, and drug therapy only put it into remission-it's never gone. This July my doctor said mine was out of remission after just having surgery in April of 2008. BUT-during my follow up visit it was determined that my levels were actually decreasing again. Cortisol is a very funny thing- It's vital for the body- it maintains blood pressure, cardiovascular function, balances the effects of insulin but really its most important job is helping your body respond to stress. That is why blood work is so tricky. So for now- no new tumor visible- levels not normal but acceptable, still no weight gain(most important to me- I know it's crazy!) I've decided to put down my whole story with cushings so far. I hope by reading this(Be prepared, its a 3 part series and this is only part 1) it will help you to understand this disease, to support the cause in research and to understand me a little better. Part 1 of my story is an e mail I sent out on July 31, 2008. I will write it here again. Please know during the writing of this original e mail, I looked to a lot of cushing survivors so I could get the details right. One post on a Cushings board was from a lady named Katie, for whom explained cushings the best her post really helped in drafting this e mail

July,31,2008

Dear Family and Friends,

The power of prayer is evident as I sit here and write this letter to all of you. I have just returned for the Mayo Clinic where I had my follow up with my endocrinologist and neurologist and it is official, the tumor is gone They saw no signs of residual tumor and from all physical and medical tests, it appears I am cured of my Cushings disease! Although the re occurrence rate is 10-20% I am confident, I have beat this ugly disease.

This has been such a long and difficult process for both me and my family, we simply could not have done it without your continued support and prayers. We have had so many people praying for us we could feel God's love surrounding us everyday.

Let me do a recap of our journey with Cushings. In 2007 it was discovered I had an 8mm tumor on my pituitary gland. This, along with a mild elevation of my ACTH sent me to the Mayo Clinic in Rochester MN. After receiving news of the tumor and setting up that appointment, I, of course, googled my symptoms into the computer. What kept appearing was Cushings disease. Cushings disease is a rarely diagnosed endocrine disorder, characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands and it is vital to regulate the bodies cardiovascular functions and metabolism and to boost the immune system. But its most important job is to help the body respond to stress. People with Cushings Disease live life with too much cortisol for their bodies as a result of a hormone secreting tumor. Mine was located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of fight or flight which ravages the body and tears down the body's major systems including muscoluskeletal, endocrine, etc.

During my initial visit to the Mayo, they decided to take a wait and see approach- to see if new symptoms appear or if the tumor grows That was July of 2007.

By February of 2008, I was miserable. Imagine that in the space of a year, you become unrecognizable to this around you and even to yourself. I was dealing with Crushing fatigue, MAJOR weight gain and muscle weakness just to name a few. I just no longer felt myself with regards to energy.

I returned to the Mayo Clinic in April of 2008. They decided I would undergo transsphenoidal surgery to remove the tumor. At this point my endocrinologist said he would be very shocked if I had Cushings Disease. They removed the tumor on April 9th and after ONE night in the neuro intensive care unit, they let me go back to my hotel.

The recovery has been long and hard. I developed diabetes insipidus post-op which resolved on its own but the most difficult part of the recovery has been my bodies "withdrawal" from hydrocotisone. Cushings Disease causes a tearing down of muscles and bones. When there was an over-abundance of cortisol in my body(as a result of the tumor) I could not feel the effects of the muscle wasting and bone deterioration, because of the anti-inflammatory action of cortisol. Upon "weaning," these become painfully evident. The physical pain while weaning from cortisol has been described as worse than weaning from heroin. When cortisol leaves the body, you experience symptoms akin to a really bad flu including sever fatigue, headaches, and vomiting. Some people need supplemental cortisol. My doctors had me go "cold turkey" which now that it is done, I am thankful for.

I just returned from the Mayo clinic Tuesday. The diagnoses, Cushings Disease that has resolved due to the removal of the tumor. My endocrinologist, who said he didn't think I had Cushings said my case disturbed him greatly. Although I showed most physical characteristics of a cushings patient, my blood work was not showing the typical markers. He said he was shocked when my tumor stained positive for ACTH(the hallmark sign of Cushings Disease). My neurologist, who I credit for giving me my life back, said, "Mary, you have humbled the chairman for the division of endocrinology at the Mayo clinic, which is not something that is easily done."

Your prayers have been felt by my family and myself.

It continues to be a journey full of obstacles. I feel like that letter only showed a little bit into my ordeal. Part 2- Tomorrow- The Power of Prayer