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Update From My Endo Appointment ...

Posted Oct 01 2008 9:53pm
Update From My Endo Appointment

Well first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to 88mcg of Synthroid and Big B up to 125mcg of Synthroid which by the way is what I'M taking! They were only slightly on the low side with the thyroid levels though so we will redo their bloodwork in about 4 weeks and see how they are doing again.

Last Thursday I found out that I only have one optic nerve in each eye. LOL. After what I had heard about some people with MEN2a having extra optic nerves I had wondered but nope that is at least one thing I am normal on. :) I did however need glasses and got to pick those up yesterday. I can't see worth a darn but the doctor says that is most likely because my eyes spent so long trying to compensate for my bad eyesight that now they are fighting the corrective lenses. So we'll give it some time and go from there. I'm sure I will adjust though.

On Tuesday I went to my appointment with Dr L. It was odd because I was in the room that she first told me the results of my biopsy in. As I sat there waiting for her I just kind of reflected on all that's gone on the last 9 1/2 months. Man, you never realize what a roller coaster ride it's been until you sit and think about it all. I will honestly say it brought tears to my eyes reliving the day she said the words "Your biopsy results came back abnormal for being abnormal" in my head. It's true what they say about your life changing in an instant.

Anyway- she noticed that I've gained weight and said that it is most likely the high dosage of Dexamethasone they had me on after the surgery. She also told me that it's not likely I will lose the weight which honestly almost sent me into a state of instant depression so deep I would have needed some REALLY REALLY good drugs to get back. :( I have gone from weighing 157lbs last September (which looked nice on my 6' tall frame) to now weighing 180lbs and 13lbs of that was gained in between June 2nd and June 11th.

I feel like everything has been taken from me and I know I shouldn't feel that way because I'm still alive, my children are still alive, and things could be so much worse but I can't help but feel cheated and angry. It's just the human side of me I suppose. I will never be considered pretty again as it is thanks to the scar on my neck and the scars on my stomach but now I have to live in this heavy body that isn't me. I feel like I'm trapped inside a bubble and I can't get out. I may end up needing those anti-depressants after all if this weight isn't going anywhere. Isn't it sad that I made it through cancer and everything else but may end up with depression over weight?

Back on track- so she went over the weight thing, we discussed my lab results, she told me that I can exercise just like anyone else and all I have to do is stay out of the heat, and she said I might want to cut back on carbs and up my proteins to help with the weight thing. She also gave me a sheet of paper to give the Emergency Room in case I ever have to go in again with adrenal crisis. It's to help insure we don't have problems like we did the last time. Supposedly all I have to do is give them that piece of paper and they will treat my adrenal insufficiency like they are suppose to. Here's hoping anyway eh?

I told her about the fiasco with the ped endo in Lake City and she said keeping track of the kids until we hopefully move in January shouldn't be a problem. I was so thankful and so relieved that she agreed. She's not a ped endo and doesn't have to do any of this so it's really wonderful of her to be willing to. No more searching for creepy endos for the kids. YAY!!

Now on to some of my lab results. My calcitonin levels pre-surgery were 16,660 (give or take) and as of my last blood draw my levels were 36. This is VERY good. We're hoping it drops more of course but as long as it doesn't start going back up again then we can hold out hope. My calcium level has stayed between 9.0 - 9.6 which is normal and good. It means my parathyroid is working fine as far as that goes. My thyroid panel came back as slightly hyPERthyroid so Dr L dropped my Synthroid from 125 to 112 which means my 14yo son is on a higher dose than I am. I don't get that but okay.

And now for the one bad result- my intact PTH which measures the parathyroid hormone in your system. Pre-surgery this level was around 92 which was elevated but not a HUGE deal. Now it is at 515 which is VERY bad. The doctors in Tampa seem to be scrambling and trying to backpeddle now. They are basically hoping that by removing the adenoma they put into my right forearm my PTH levels will go down to normal. If not then it means they screwed up and we may be looking at parathyroid cancer.

Keep your fingers crossed for me that removing this stupid thing in my arm fixes things because parathyroid cancer means chemo and rad therapy. Not something I'm looking forward to and it would really suck to make it through the other cancers just to end up at this same crossroad anyway.

I was suppose to go down to Tampa on Monday (July 25th) but they decided to schedule the procedure at 4pm which would put us getting back home around 11pm at night. That is just too hard on everyone so I cancelled and will be emailing Dr BC this weekend to see what kind of doctor I need to look for here to remove it and also what doctor I need to see around here for the tumor still left in my intestine. At this point I'm guessing they think it is benign so no reason for me to go back down there to that craphole again.

So that's it- those are the test results, we'll hopefully find someone to get this thing out of my arm, we'll move on to the tumor in my intestine, Synthroid level was dropped, the kids have blood draws in 4 weeks, I have a blood draw in 6 weeks, and we don't have to see her again until December.
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