Jo's Chat With The Endo

So I didn't really have an appointment with my endo but she discussed some stuff with me. I told her the Cortef is working great and I am feeling ALOT better to which she was glad and said we'd just keep me on that. I told her I'm taking 25mg instead of 30mg and hope to work my way lower for obvious reasons. She told me just to let her know before I do it so we can make sure I'm not running any risk of adrenal crisis. Then we talked about the fact that my pain has gotten worse and I told her that I found out from other medullary patients that sometimes even a few years before bone mets show up they had the same kind of pain.

I also told her that Dr. BC seems to think it's because of the hyperparathyroidism and as soon as that is taken care of it will be all gone. Dr. L just rolled her eyes with me because we both know that my calcium levels are fine and so is everything else so there is no reason why the hyperparathyroidism would be causing me pain. I think we both have come to the conclusion that he's not the surgeon for me. *sigh* Anyway- she changed my pain meds to Neurontin once a day at bedtime in hopes that would help me. We're also going to do a bone scan to see if we can see anything as far as tumors go on the bones yet. We're hoping not but better safe than sorry.

After that I told her that the other surgeon in Tampa wants me to get a CT scan of my throat even though I already had one in October so I told her just to add the abdominal scan we were going to do as well. So we'll do that one to make sure that I don't have an abcess or internal bleeding around my liver and kidneys. If it comes back negative for both of those then we will know that it's scar tissue and just make sure I have good pain meds until it finally gets better.

The CT scan WITH Barium shakes and IV contrast will be on Friday at 8:45am and the Bone Scan will be on Monday, the 24th at 9:30am. I'm so nervous about the CT scan after how horrible the last one went. Supposedly the last one was so bad because of the pheos but that doesn't make the anxiety any less. As for the bone scan, I've never had one so I don't even know what to expect with that.

We also took some blood to run some tests. Basic tests are things like TSH since we haven't done one since September, PTH, and so on. The not basic would be the blood tests for rheumatoid arthritis. We're just checking because of the pain I have but if they come back positive then I will have to add yet ANOTHER doctor to my entourage and start seeing them as well as being on even MORE meds. NOT my idea of fun!

Sad thing is I don't know whether to hope it's rheumatoid arthritis or bone mets causing the pain. Either one sucks and no matter what I lose you know? Damned if I do and damned if I don't! LOL.

So now we just wait and see what happens. I will follow up with her after my surgery and go from there as far as my regular stuff goes.

Oh and did I mention I might talk to another surgeon because I'm not feeling comfortable with Dr. BC? If not...yeah I am. He still hasn't answered my email with my surgery questions in it and I'm not in the mood to be part of some "berry picking" experiment on his part. I'm actually calling the other surgeon tomorrow and seeing when I can get in to see him. I've got nothing to lose at this point and everything to gain so it can't hurt.