Monday, November 14, 2005

Note To Self: MEN2a + Long Move = VERY Sick Me.

That pretty much covers it doesn't it? I always thought long moves were hard before but this was my first one since diagnosis and surgeries. I think I want my adrenal glands back thank you very much. ;) WOW, talk about feeling wiped out! It took me a full week to recover and even know I spend most days with a migraine.

Before we moved I had Dr. L order labs for me so I would have fresh results to bring to the new doctors here. I wanted something current to go off of and wasn't sure how long it would take to get things rolling here with a whole new support system. Well, I received both good and bad news.

The good news was that my calcitonin levels are currently at 17. Yes that's a ONE and a SEVEN! I couldn't believe it! As sick as I've been the last few months I honestly expected it to have started climbing again. So what that means is that if it will just stay at 17 and not go any higher then there is that very slim chance that I could be cured of the medullary cancer. It's not something I'm getting my hopes up over but it's a nice surprise that I am enjoying right now. Also, my thyroid levels are stable and doing well.

The bad news was that my parathyroid levels (intact PTH) were very high. I went from the 515 to 1035 since July. This of course means something is VERY wrong. I probably should have run back down to Tampa and had it taken out but I can't help but feel like that would be a bad idea. The bottom line is that they screwed up BIG TIME! They put an supposed adenoma (and I say supposed because I'm wondering if they even tested it) in my forearm. Just let me say- an adenoma is a benign TUMOR okay? So they took out two bad parathyroid, left one good one in, and the proceeded to chop up this TUMOR and stick it back in my arm. Adenomas are usually the primary cause of primary hyperparathyroidism. So all they did is take the culprit out of my neck and give it new housing in my arm. WHAT KIND OF IDIOT DOES SOMETHING LIKE THIS??? Ugh!

So anyway- things are getting worse and I can't help but wonder if they stuck parathyroid cancer in my arm. I am going to have the doctors here take it out of my arm hopefully VERY soon then what will happen is one of two things. One- it will just test as an adenoma, it will be out, and my levels will drop. Two- they will take it out and test it and it will be cancer which will mean I will need chemo and rad therapy. It will also mean I will be suing because that would just be beyond disgusting. I'm not a sue happy person by the way I just don't think others should have to suffer from something like this again.

Tomorrow I have an appointment with the new endocrinologists. I had an appt set up with one I had emailed with but he is not on our new insurance so I hope beyond hope that this other practice knows what they are doing. If not of course I have the option here of looking for someone else. I promise to post afterwards and tell how that goes. The kids also have an appt next month with a ped endo BUT she isn't on the insurance so I have to start over. *sigh*

I also just want to thank "W" from Australia for posting a comment on my last post and letting me know that people are reading. It honestly means so much and I will try harder to keep this updated.

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