Monday, April 16, 2012

Day sixteen of Cushing's awareness: Remission?

Everyone who goes through this Cushing's experience and has tumors removed wants to know if they are in remission.  That is the whole purpose of going through surgery.  Getting those evil ACTH producing devils out so that our bodies can begin to recover and learn to function as it was intended.  I noticed changes in my body immediately after surgery.  My skin started clearing up, my face was starting to look thinner, my eyes weren't nearly as swollen and puffy.  I felt like I was molting and all the toxic hormones that had been in excess were leaving my body.  I was starting to fall asleep at an earlier hour and I noticed my body didn't hurt as much as it did before when I was laying down.  I used to just lay there in so much pain that I often couldn't sleep even if I wanted to. Things were looking good.  I had dropped 19.5 lbs in less than two weeks.  I was afraid to get excited though. I know all too well that remission with this disease can be all too short.

Within days of my artery bleed I started to notice things changing again.  I was starting to stay up later and not able to sleep again.  I noticed the rash that had gone away immediately following my surgery was starting to flare back up on my left arm and scalp.  I was still very hopeful that it was just my body adjusting to the lower levels of ACTH and cortisol in my system.  After being released from the hospital for my artery bleed my pathology report came back on my tumors.

This pathology proves without a doubt that I had/have Cushing's Disease.  It also shows that my tumors were not well defined which leaves the question of remission.  I'm pretty sure that I'm one of the lucky ones who has pituitary hyperplasia, but for now I will just continue letting my body heal and wean off the steroids to see what is really going on.

Towards the end of February I had my first phone appointment with my Endocrinologist in Los Angeles, Dr. Friedman.  We went over my blood work in which I withheld my hydro and also my post op numbers and the pathology report.  At the time of this conversation he felt that I was in remission from Cushing's.  My Cortisol was higher than it had ever been in the morning, but since I was cyclical I always had bottomed out numbers during the morning.  My ACTH was also well within normal range too.  He felt that because I was having adrenal insufficiency and needing my hydro that it backed up that hypothesis.  However, he did agree that an infection could also be causing me to dip low.  I was extremely excited, but I also felt like it was entirely too soon to tell.  I did mention that I was having issues sleeping at night.  He wanted me to up my hydro and perhaps try a very small dose at bedtime to see if it would help me sleep better at night.  I never upped the hydro as I was deathly afraid of keeping myself sick with Cushing's.  Plus, I never really felt I was dipping so low that I needed to keep taking more.  I only stress dosed when necessary.  The conversation ended with hope of remission and a possible cure.  I was set to have 6 vials of blood taken in roughly six weeks to check all my levels again.

During this time I felt like my sleeping habits were once again returning back to my Cushing's days.  I also noticed periods where my striae (stretch marks) were starting to change color late at night again.   Fluctuating hormones, right?  

I waited the six weeks and withheld my hydro again and did all my blood work.  I got an email from Dr. Friedman's assistant and said that Dr. Friedman thinks I have a growth hormone deficiency.  I was aware that my numbers were low when I went and saw him in June of 2011, but since my surgery they had bottomed out even more.  Growth hormone levels for my age group should be between 106 - 368, mine was 118.  I had some other concerns with my numbers and also my symptoms so I set up another phone appointment with Dr. Friedman.

Information provided from the The Magic Foundation Website

Where Does Growth Hormone Come From?
Growth Hormone is a chemical substance  produced by the pituitary gland, a small dime sized gland that extends from the base of the center of the brain located right behind the eyes. A number of important hormones are produced by the pituitary, including growth hormone. part of the brain just above the pituitary called the hypothalamus controls the amount of growth hormone released by the pituitary.
The amount of growth hormone released by the pituitary over our lifetime changes with higher amounts during childhood, especially during the pubertal growth spurts, and declining amounts as we get older.
Growth hormone is produced by the pituitary gland, which, in turn, deposits this hormone into the bloodstream.
This hormone can be measured in blood by taking a blood sample. The hormone normally leaves the bloodstream and enters into the tissues of the body to exert an effect. Growth hormone affects many of the tissues of the body, including bone, fat and muscles, to name a few. We need growth hormone all of our lives to maintain these tissues in proper balance.

What Does Growth Hormone Do?
Growth hormone maintains muscle, bone and fat tissues in healthy balance. Without growth hormone, these tissues get out of balance. Deficiency of growth hormone in children is easy to recognize. Children with low levels of growth hormone grow poorly and remain short. In adults, growth hormone deficiency is not easy to spot since adults have achieved adult height and have used their bones, thereby preventing further growth. The deficiency of growth hormone in adults can be appreciated by looking at body composition. Since growth hormone maintains a proper amount of fat, muscle and bone, these important parts of our bodies are not nurtured properly and change in an unhealthy direction. With this deficiency, fat is deposited more easily, especially around the middle of the abdomen, what doctors call visceral or abdominal fat. Since growth hormone affects muscles, they also change for the worse, which means there is less muscle and less ability to exercise. Bones, too, participate in the deficiency by becoming weaker (but not shorter). We call this weakening osteoporosis. This combination of more fat, less muscle and less bone structure represents the body composition changes as the result of growth hormone deficiency in adults.
Adults experience an additional problem with growth hormone deficiency. Since growth hormone controls fat metabolism, adults with growth hormone deficiency will have a change in their blood fats referred to as cholesterol. These changes result in a higher overall cholesterol level in blood, which is undesirable. The “good” cholesterol level to be as high as possible. This good cholesterol (also referred to as HDL cholesterol) changes to a lower level as the result of growth hormone deficiency, which is the opposite of what we want to be healthy.
What are some of the Symptoms of Growth Hormone Deficiency in Adults?
Adults who develop growth hormone deficiency often do not feel their usual selves. Most notice a decrease in their energy level and endurance for exercise. Some may avoid social contact or avoid meeting with or talking to their friends. Others will have deficient interest in sexual activity. Other people with growth hormone deficiency think they feel normal, but do not remember the way they felt before they developed the deficiency. These people may feel a dramatic improvement only after growth hormone therapy is started.
Causes of Growth Hormone Deficiency in Adults
Most children who develop growth hormone deficiency do so because the hypothalamus, for unknown reasons, fails to function and does not stimulate the pituitary gland to release growth hormone. There is not a visible cause of pituitary injury in most children with growth hormone deficiency. Adults, however, who develop growth hormone deficiency usually do so because of some damage to the pituitary gland. This damage results in an inability to make growth hormone in sufficient quantities. The most common cause of pituitary damage in adults is a pituitary tumor. Either the tumor itself, or surgery to remove the tumor or radiation therapy of the tumor, can result in damage to the pituitary and an inability to produce growth hormone. Less commonly, pituitary underproduction of growth hormone may result from head injury or irradiation to the head for treatment of a brain tumor. Some adults may also have under active thypothalamic drive (activity) as a cause of growth hormone deficiency similar to the most common reason for children to develop low growth hormone, but this is rare.

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