Well, well, well...I just flew back from Bethesda and boy are my arms tired!
It was another fun filled stay back at the NIH Clinical Center in Bethesda last week. I got drained of blood, injected with contrast dye and radioactive who-knows-what, poked, prodded, and scanned from stem to stern. I was also "after" photographed for posterity to go along with my "before" pics from last year. There was much hoopla over how good I looked. I consider it more "back to normal" than good, but I'll take whatever compliments that come my way! Even the security guard at the front gate had to take a second and third look at me compared to my ID badge that has a picture of me at the worst point of my Cushing's condition. I suppose that I look relatively harmless either way, so he let me in.
Bottom line, there were three major outcomes from the week:
1) The scans did not find a tumor. So basically the time spent in the CT, MRI and Octreotide scan machines was glorified nap time. Good thing I'm not claustrophobic!
B) I totally failed my glucose tolerance test indicating that I'm diabetic. As it usually goes with me, this result does not correlate with my blood sugar tests and my ability to metabolize food. In fact it kind of contradicts it. So my gaggle put their heads together and came up with the following conclusion: I eat too well. Huh? I know! I didn't know that was possible! But I may have proven that it is. The theory is that I don't eat enough carbs to give my pancreas enough practice in metabolizing large amounts of sugar. Since the glucose tolerance test involves drinking a bottle of glucose liquid (FYI, never choose the cola flavored - I go with fruit punch myself) and then taking blood at intervals after, my body couldn't handle it. It kind of freaked out and didn't know what to do. So, my assignment to test my gaggle's theory is to eat more carbs this week and retake the test here in a week. Lucky for me, Shanna the dietitian was able to help me out with how to do this. I seem to have gotten scared of eating sugar and carbs, but my body needs them anyway. GAH! It's all so confusing! So I came home with lists of carbs, goals for daily eating, and sample meal plans. Basically she told me to lighten up and eating a little of anything isn't bad.
iii) Here's the big find (and most confusing) for the week: My cortisol level is low. Way low. Below normal low. Below acceptable low. How the hell did that happen? Cushing's is over production of cortisol and I have always been WAY astronomically high in my cortisol levels. At first glance, you may say "this is good, isn't it?" In a word, NO. Not good. I am still over producing the stuff that is supposed to tell the adrenals to produce cortisol, but they're not producing it. You now may ask "doesn't that mean Muffy is working?" Again, in a word, NO. Muffy isn't supposed to effect cortisol levels or production. It's supposed to only effect the receptors of the cortisol. So I can still produce cortisol 24/7, but it isn't used by my body. So basically there is absolutely no reason for my cortisol level to drop. The only thing my gaggle can figure is that Muffy is somehow doing something to effect my adrenals. I'm off Muffy now, and in a week, when I go in for my glucose tolerance re-test, we'll also test for cortisol level. If their theory is correct, my cortisol level should have shot way up. If not, then we all scratch our heads, regroup, and I'll start taking steroids to replace the cortisol that my body isn't producing. Ironic, huh? No one should be surprised here. It's par for my course. It is a little scary because I don't know what my body is going to do, how I'm going to feel and how I can keep it under control. But at this point, I'm not really getting my knickers in a knot over it. I'll just keep doing what I'm doing and we'll figure it out. It may be on a weekly basis, but we'll figure it out.
The bad news is that this blog won't end anytime soon. The good news is that this blog won't end anytime soon! Again, I'm a lucky girl to have the staff at NIH working on me, and my doctor and his staff here in KC are fabulous as well. There are many people out there that are sicker than I am and don't have the means to deal with it. I have nothing to complain about!!
No comments:
Post a Comment