Friday's News

Update again(most recent on top): The 256 was a 24-hour urinary free cortisol (UFC), so the pre-op serum level is still not known. I apologize for the misleading information.

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...I posted the following last week. I'm moving it up to update it. We now know that Mike had a pre-op serum cortisol of 256. I cannot "say" that calmly. 256!!! Suzy had a tough time tracking that down. Too tough of a time. Someone needed to know that in the hospital. She says they want to do a bilateral adrenalectomy (otherwise known as a BLA and pronounced "blah" in jest/fun...) and radiation on the remaining tumor area.

Mike is in trouble:

My name is Susan and I am writing this bio for my husband Michael. He had a lot of health issues that were misdiagnosed and unanswered for several years. He developed osteoparosis, diabetes, high blood pressure and other problems over night it seems. He also had several features of cushings such as the moon face and buffalo hump.

He was finally diagnosed with Cushing's about three months ago. November 2007 he went into the hospital with backpain and he was unable to stand. Within days of being admitted I was told he had a compression fracture that paralyzed him from the waist down. [Robin's note: high cortisol from Cushing's Disease causes osteoporosis]

He had transphenoidal pituitary surgery June 23. The tumor was approximately 20 cm which had doubled in size since November. Only part of it was removed because it was in the nerve center of brain and "wrapped" around carotid artery. Neurosurgeon was able to remove more than thought, but he might need another surgery or radiation treatment.

Robin's Note: Since this was posted on the cushings-help.com website, Mike has had a turn for the worse. Gracie, who has been in touch with Suzy, writes:

I was in chat with a new member the other night ... Her name is Suzy...and her husband's name is Mike. She told me that Mike had pituitary surgery about 11 days ago. He is in a hospital in Philadelphia, PA. Mike is in serious condition! He is on a ventilator, and it had to be turned back up to 100% last night. He is paralysed from the waist down (I'm not sure if this was before or after surgery), when his PICC line was removed, a blood clot shot straight to one of his lungs. The other lung is in threat of collapse. The list goes on and on.

...I asked Suzy which type of replacement [hormone] he was on, and how much. She said he is not on ANY!!!! I asked why and the doctor told her he is more concerned with his breathing problem right now!! ...I explained the whole replacement thing to her and how this is crucial for life. His tumor was around an inch in size. It was rapidly growing, and it was wrapped around his artery, so they did not get all of it with that surgery. I truely believe that is the only thing still giving him enough cortisol to keep him out of a coma right now.

For those of you who don't know, if the body is used to high levels of cortisol, it goes into shock when those levels are rapidly dropped even if some is being produced. Updates as I get them.

It's not just apples and oranges.....

Oh, I know you've heard it before. "She's just depressed." As if anyone can be "just" depressed. And it's said like it's all just a mental thing. (Around here you'd hear that pronounced "thang". It sorta works with this topic.)

Well, the problem is, with those of us who have had our pituitaries sliced and diced after they were first suppressed with a "tumah" of varying proportions, it isn't "just depression". In the article "Apathy and Pituitary Disease: It Has Nothing to Do with Depression" the authors make some very valid points.

Of course, when I read the following, I just about got depressed. After all, they are describing me!

Patients who are diagnosed with pituitary disease experience many physical changes that have been well documented in the literature. These patients may have significant fluctuations in their weight as well as changes in their physical appearance, as seen in patients with adrenocorticotropic hormone-producing adenomas (ACTHomas), prolactinomas, and growth hormone-producing adenomas (GHomas). They may also experience changes in their sexual and reproductive functioning, such as amenorrhea, impotence, and impaired orgasm. Many patients with pituitary disease develop comorbid medical illnesses as a result of their pituitary dysfunction. The development of diabetes mellitus, hypertension, and coronary artery disease are a few examples.

They go on to talk about the problems of "lethargy, increased sleepiness, cyclic mood instability, impaired cognitive function (i.e., deficits in concentration and memory), and personality change" which occur with Cushing's Disease. Although I'm skipping a lot, basically they studied numerous patients who had pituitary surgery, and summarized with "apathy is an emerging concept in neuropsychiatry, and major depressive disorder and chronic fatigue syndrome are important syndromes from which apathy must be differentiated.... these patients with pituitary disease appeared to be suffering from depression, given their constricted affect. However, when asked about their mood, all stated that they were not depressed but, instead, stated that they had chronic fatigue and lack of motivation." Apathy, not depression, was a major factor in the quality of life for these patients.

The pituitary gland is a very tiny gland, actually, at the base of the brain. It is often described as "pea-sized" or "lima-bean" shaped. It is divided, basically, into anterior and posterior sections. Each part of the pituitary is responsible for multiple hormones.

Since adenomas (tumors) of the pituitary are typically measured in millimeters, it becomes obvious that size does not matter here. Adenomas under 10 mm in diameter are called microadenomas, while those 10 mm and larger are termed macroadenomas. In other words, one centimeter is LARGE in the pituitary world. Placement, size, and cell type(s) all vary so greatly that there really is not one, or two, or even three standard outcomes with these tumors.

Many adenomas/tumors suppress the pituitary so it cannot produce multiple hormones while the tumor overproduces one or more hormones. (Another topic for another day.) The point I'm trying to make is that we know what happens to the body with just one hormone problem. Think in terms of multiples and it obvious that what is seen as depression is often a by-product of pituitary malfunction.

Growth Hormone (GH) is a powerful brain hormone that is believed to play an important role in stimulating and controlling areas of the brain that regulate moods and emotions. It is not just important in growth. Certain chemicals in the brain, called neurotransmitters are dependent on the effects of GH to help them carry their messages between brain centers. If GH is not available, these functions may not occur appropriately and the result can be uncontrolled changes in psychological functioning. It can cause anxiety, depression or worry for no apparent reason when this happens, and this may cause changes in behavior or decline in social functioning. Negative and sad feeling often dominate the deficient person's mood, and positive or joyful feelings can be dampened. An affected individual could feel unable to enjoy life and lack the motivation to make change in their circumstance.

I am GH deficient. I have probably been GH deficient (as well as thyroid deficient) for over 20 years, and maybe 30 years. Since I don't have access to any records that far back, it's hard to tell. When I had the Arginine GHRH Stimulation test at the University of North Carolina back in the spring, I only stimmed to 0.13 ng/ml. I started out at 0.02 ng/ml. When normal is around 10 ng/ml, that's mighty low. I have been on GH (Genotropin) for about 2 months and can tell a huge difference in my attitude and fortitude. Ok...I now have 'tude!! Seriously, I have less apathy, much more social presence, and I'm not hiding in my den so much. I see a return of the "old Robin" in many ways. Yes, less apathy.

Back to the apples and oranges....depression is not the same as apathy. Sliced or diced.....still two different fruits.