Today was a bad day filled with just all kinds of bad news. :(
I went to my appointment with Dr. L today and of course we went over my test results. First let me say that the lab screwed up two of my tests AGAIN!!! Even though I told them to make sure they didn't screw up. I am so mad and disgusted right now but at the same time the one time I tried to go to another lab it was disgusting and they had even less of a clue what they were doing. How can they keep screwing up the same stinking test over and over? This is the second or third time they have screwed up my calcitonin test and then of course they screwed up the kids' too. :(
Anyway- she told me that the stim test (adrenal function) of course came back flat but that the aldosterone got higher with each blood draw meaning that we could have a small smidge of hope. She's going to retest later after we wean me down on the steriods some more. We're not holding our breath but we're not completely giving up either.
My calcium came back slightly elevated which it has been the whole time. It just means I have hyperparathyroidism which we already knew of course. Tests showed that I'm doing okay as far as the Florinef goes and we can start cutting that back to 0.5mg a day instead of 1mg.
More bad news was that Dr. R says he won't do the kids' surgeries because he doesn't feel comfortable doing them. So we are being referred to Atlanta which most likely means the kids won't get to have their surgeries by Spring Break and they will have to miss more school. :( They are both upset because they wanted to stay close to home but I did the best I could. The "joys" of living in a stupid small sucky Southern town that is 3 hours from everywhere! Ugh, I hate this place!
On top of that I found out that yes, I was heading towards and adrenal crisis. She even noticed I didn't look too well when she first came in. Dr L told me to triple my Prednisone today, drop it down some tomorrow, and then try going back to 10mg a day the next day and see how I feel. If I feel bad then call her. She says that all the symptoms I told her about are signs that my steriod dose is too low. Darnit! Once I came home and took more of the Prednisone I started feeling better and the headache is just a dull ache tonight which is a nice change.
Dr. L said that I tested negative for pheos which means we very likely got them with the adrenalectomy and I also tested negative for carcinoid which leaves us back to wondering what the heck is in my liver and small intestine. Actually it just puts us back at figuring that it's most likely the medullary cancer there and I'm pretty much screwed. Again I was stupid and let myself hope that the medullary cancer hadn't spread and maybe this would all go away. I don't know why I do that because it just makes it even harder when I fall.
She also called me later on and told me that she was going over the list of symptoms I gave her and noticed excessive thirst, frequent urination, and flank pain. We are now having to test me for stinking DIABETES on top of everything else. This just plain sucks so bad. :( I'm really just about ready to have a breakdown I swear. Okay so I seem to be one of those people who is it impossible for to have a breakdown but dangit I want one and I've earned one!
I have to go to the lab AGAIN tomorrow to have more blood drawn and give urine so I can get the calcitonin test again, seratonin again, test for diabetes, and a few other things she wants to check. I also got a new prescription for my Florinef and some pain killers FINALLY!!! I told her I didn't want Vicodin again because all it does is worsen the headaches and that I had used 1/2 a Loratab before and it took the edge off and I was okay with that. I haven't been pain free in almost a year but I can handle it if the edge is off some. She told me there is another drug that is nonaddictive and asked if I wanted to try that. I told her that would be great because getting hooked on pain killers is not my idea of fun. So starting tomorrow night hopefully I won't be in pain anymore especially at night and can sleep in peace.
So tomorrow is labwork and pick up meds. In two weeks is the Octreotide scan and liver biopsy. Hopefully somewhere in there is an appointment with a surgeon for the kids. I'm so tired of setbacks where they are concerned.
I really hope I don't have diabetes. If I do it is most likely secondary diabetes mellitus which is usually caused by medications or medical conditions. I just can't believe this. After all the other crap I have to go through this might be thrown in there too.
I must have REALLY sucked in one of my past lives! Ugh