I had a phone appt. with Dr. F. last night

WELL.... I think it was a productive appt. I'll be having surgery again at some point. I don't know when yet. He didn't clear me for surgery, but agrees I'm having what they call a "recurrance". He told me to do some more testing, and to get another MRI, to see if there is any tumor regrowth showing up.

We discussed the pros and cons of BLA and Pituitary surgery. I'm still leaning toward the BLA, but in reality, there are no easy answers. If I still have some pituitary tumor left, and I have the BLA, it can cause the tumor to start growing rapidly and you still have to do something about it, like gamma knife radiation. It can cause you to have Nelson's. I don't care about the Nelson's. That's not an issue for me. Gamma knife would most likely kill large portions or all of my pituitary. I'd lose some or all hormone function.

If I have another Pituitary surgery, I could lose some or all of my pit function. Dr. F. feels that being panhypopituitary is better than having your adrenals out. That surprised me. I don't feel that way at all. I'd much rather balance taking hydrocortisone and florinef for the rest of my life, than trying to balance many, or all of my hormones for the rest of my life. Having hormones messed up makes you feel AWFUL, and it is hard to balance. I've watched people do it over and over. You adjust one hormone, and it throws another out of whack. You get it right, and something else goes whacky. It's too hard, if you ask me. There is a CHANCE I could be cured with one more pituitary surgery, but there is no guarantee. That would mean I could eventually be off of all hydro and be done with it. BUT, there is also the chance they wouldn't get it all, and I could still be facing more surgery. That seems to be more often than not from what I've seen. I've even seen people who were cured, come back after 5 yrs. or so with a recurrance. I'm not thrilled at that prospect at all.

His game plan is to see what the MRI says. If I have another pituitary tumor growing, he said he would recommend another pit surgery. If there is no tumor showing, then a BLA. He knows I prefer the BLA over pit surgery, and he understands why. He's basically leaving it up to me. He said to think about it for a while, do some more testing, and then we will see where we are once we get some more results back and whether there is a pit tumor or not.

So, that's where I'm at. It looks like 2009 is going to be another expensive year! Yay! NOT! I want to be done with this! The other thing with having another pit surgery is that if it doesn't cure me, I'll have to wait until I wean again, see where I'm at, do some testing if I feel I still have it, and then face ANOTHER surgery! I don't want to sign up for that program, thank you very much! It seems that there are no easy answers with this disease! I'm just glad that he sees what I see, and agrees it's a recurrance.

Almost 17 weeks post op

Last Thursday, I went to see my local endo again. I ran out of gas going up the exit ramp! What a mess! I got out and started walking, and some nice lady picked me up and took me to my doctor's appt. She lived close to my doctor. I was so thankful that she stopped. It was cold outside!

My doctor seemed a bit baffled. All of my lab stuff looks good, so we can't blame anything on thyroid (she says) or any of my other hormones. My face and neck was getting really red while I was there. I told her to feel it, as it is hot to the touch. She asked if anyone had ever checked me for a carcinoid tumor before. I said no, so she wants that checked. It can be an ectopic source for Cushing's. It also goes along with MEN1. I'm doing a UFC for that test right now, and I'll do a blood draw for it tomorrow. I don't think that's what is going on. I sure hope not anyway! I don't want to have to go through Chemo! So, I'm hoping it just rules that right out, and I'll just be looking at dealing with regular ole Cushing's. It's bad enough by itself!

I've had a headache all day. A dull headache, that just bugs you. I hate it that I can't sleep right. I go to sleep, and get up off and on all night. When it gets closer to morning, I can sleep real good and stay in bed for hours without waking up then.

I have a phone appt. coming up on Saturday night with Dr. F. I'm wondering if some of my labs caught his attention. I had the ACTH stim test done twice. It was the low dose stim test. My cortisol almost quadrupled from the baseline number, the second time I had it done. The first time was more than double. I've read that a normal response is double. If it is higher than that, it indicates Cushing's. I think my quadruple response would indicate that I still have Cushing's!

I hope we can get it all figured out quick and just move on. I still feel better than I did before surgery, but not as good as I did after surgery. I'm feeling worse all the time. I dread going back to that place! I was almost in tears tonight, just because I've been feeling so bad, and I don't want to feel like this. I've had indigestion so bad, I've had to sleep sitting up on the couch! I just want to be normal and feel good. I can't wait to hear what Dr. F. has to say on Saturday!

Almost 15 weeks post op update

I'm going to be 15 weeks post op tomorrow. I went to the ENT and got my scar tissue shaved out of my nose. It wasn't bad, but I'm glad it's behind me!

I called my PCP's office today, and talked to the nurse. I told her I wanted some orders to do some midnight blood draws and some 24 hr. UFC's with 17-OHCS in them. She said unless they called back and told me otherwise, the orders would be sent over to the hospital where I get the draws done. I never heard back, so I'm assuming they are there. Back to testing for me!

Hearing that others have lost 30 lbs. while still on 20 mg. of hydro, and I'm totally off of hydro and not losing anything, makes me think I'm not cured. I'm not jealous at all. I'm thrilled for them! We all have such a battle with this rotten disease, and any good news from any of us is something to celebrate about. I quit the hydro shortly after my 13 week mark. According to my doctor, and I've seen the labs too, all of my hormones are good.

The return of symptoms just keeps adding up. At first, they were more subtle and not very worrisome. Now, they are things I just can't ignore. More symptoms started popping up just in the last few days. My brown spots are getting very dark again. That tells me that my ACTH is high. They had pretty much faded after surgery. I had not really noticd them for a while, and yesterday when I looked in the mirror I about flipped! The one on my lip stood out like a sore thumb!

I hate Cushing's! I had high hopes that I was cured after surgery when I crashed so low. The lack of progress has sunk those hopes. I suppose there is still a slight chance that I do have a cure, but I'm not seeing it right now. I feel like I'm slipping back in time and I want out of this time warp! I really felt cured for a while! It was great while it lasted. I want to feel that again. So, I'll keep pressing on. Maybe my tests will be low, but I have a feeling I will see something otherwise. Time will tell. If I still have Cushing's, I hope I get highs off the bat!

13 weeks post op?

I'm losing track of time now. I forget how long it's been since surgery. I think 13 weeks. I have not updated because there is nothing to really update. Everything is still pretty much the same. The only thing different is that now I'm swollen and sore everywhere. I'm not sure why. I am going to have to go off of several meds and see if that makes it better. I'm wondering if I have a build up of something I'm taking, that is causing this joint and muscle pain. I've been at 2.5 mg. of hydro for a while, and I've been just fine on it. In fact, I was due for a wean again, but I can't do it just yet. I'm going to alternate not taking anything, and the 2.5, every other day for this coming week. Then, I hope to be totally off of hydro the week after Thanksgiving.

I've been busy getting my house organized. It's so great to get things cleaned up and in order again. I can't wait until it is totally done! I still have to dig out all of the winter clothes for everyone. We've been digging through boxes as needed.

I still look about the same as I have been lately. Nothing much has changed that way. Once I'm totally off of all hydro, I think my doctor is going to put me on thyroid meds. She said if she gave it to me now, it could make me have an AI episode, and she didn't want to do that to me. She wants me off of all hydro first. Here are my most recent pictures.

11 weeks post op

I'm a bit late posting for 11 weeks post op. Oh well! After my last attempt to totally wean, I went back on the hydro. I went to 10 mg. and that was too high. I went down to 7.5 mg. and stayed there around a week. I went to 5 mg. on Thursday. I'm doing good. I had that whole episode with the "low" feeling the day I had to go back to see my endo, but I later figured out a huge part of my problem was that I was having a reaction to the Levaquin. It took me a long time to have a reaction. The first 2 weeks were fine. Starting the 3rd week, (also when I weaned) I started having pain. I thought it was all because of the wean, but it wasn't. Going back on the hydro didn't take the pain away. It was the Levaquin! Going off of it took the pain away! So, I took all but 4 pills of Levaquin, which helped my sinus infection tremendously!

I have to go back in Dec. to get some scar tissue shaved down in my nose. It's part of the reason I have a sinus infection problem. My nasal washes are not reaching it good.

I haven't heard the latest lab results yet. I do know my endo is watching my T4, as it was really low in the normal range. I'm almost hypothyroid. She is watching that, but she said giving me thyroid meds while I'm still on the hydro could make me have an AI episode, and she didn't want to do that to me. So, she tested my TSH and T4 again last time I was in there. She told me to get back into the office as soon as I weaned totally, so she can do another adrenal stim test. What do you want to bet that my adrenals will stimulate after that big dose of ACTH? LOL! They did last time, so I don't see why they wouldn't this time too! Anyway....

I'm doing pretty good. Just the same old stuff. I had a headache today, and some diarrhea, feeling pukey... all that normal weaning stuff. It makes you feel yucky, but it is not intollerable. I also sleep alot in these times. I was in bed most of the day. I'll be so glad when I am totally off of hydro!

I really don't look any different than in my last pictures (I don't think). I haven't lost more weight, and that won't happen until I'm off of the hydro and get my thyroid straightened out. That's ok, I'm pretty patient. I'm just happy that I feel better. I feel consistant. Losing the fluctuations in blood pressure, and losing the heart palpitations were worth the surgery, even if I never had any other improvements! But I do! Ha! My fingernails are still going strong, and that is just unbelieveable! I've never had nails like this in my life! I've whacked them on all kinds of stuff, and they have not broken off! I'll have to take a picture of them before one of them breaks because all 10 of them are LONG! I'm kind of letting them go to see how long they will get before they break. LOL! I might just have to break down and shorten them though. My hair that is closer to my scalp is so much more healthy! It' soft, silky and shiney! I also have lots of little hairs coming in. It has gotten thicker. I have to use bigger hair barrettes than the itty bitty ones I use to use. I'll try to update with some new pictures soon!