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!

So much for the "final" wean! LOL!

Well, it caught up with me! I got my shower to get ready to go to the doctor, and I couldn't get dressed! I kept feeling like passing out. I took my bp and it was 96/69, and I didn't take my bp meds. I knew with dropping my hydro my bp would drop too. At least I didn't take the meds on top of it! Anyway, I had to end up taking 5 mg. just so I could get to the doctor. That was enough to perk me up and raise my bp! She was kind of upset, not majorly, but she was going to test me again today. She couldn't do it since I'd taken the medicine. Oh well. I told her I had to, just so I could get dressed and get there! She wasn't mean about it. She is really nice!

All of my labs from the previous week looked good. She tested my thyroid again. She just wants to keep an eye on it to see if it goes whacky since it can after surgery. Right now, everything looks good. Since I had to go back on my hydro, she said, "Ok, you go back on it, and take it for a while, but try to wean off soon if you can. Then get back in here for another stim test." Then she said, "I don't usually let patients do that, so you should feel privileged." LOL! She was laughing. I really like her. She said she knew I was listening to my body and I'd been doing a good job weaning and I've made so much progress already, that she is happy with that.

My stim test was an ACTH stim test, not the CRH. I asked her how she knew my pituitary was giving the signal to my adrenals when we didn't do the CRH. I don't think she quite followed me, but she mentioned the fact that my ACTH before the stim test was 14. That is in range, and it does show that my pituitary is working again. She said that by taking the hydro, it is suppressing my adrenals. I see her point, but I also know that if it is not going to work, you can't force it either. She seems to think you can kind of force it to wake up and work. I really do like her. All I have to say is, she has never lived in an adrenally insufficient body. I don't care what any text book says, my body feels things that the text book doesn't tell you about. I'm all for getting off of the hydro. I don't like it, but I also don't want to end up in the ER with a crisis. Slow and steady wins the race!

So, I'm back on 5 mg. I felt good on that. I'll stay there for a week or so, then go down to 2.5 for a while before I go totally off of it again. Today is 10 weeks post op! Yay! I'm a Cushing's survivor!

I'm off of all Hydro!

Monday was my last day of taking hydro. So far, so good. I'm just sore and tired. I always get tired when I do a wean. I don't usually get sore. It's funny how each wean has been different. I usually get one or two symptoms of a low, but not all of them all at once, and they don't last long. With the next wean, I get different symptoms. It's weird how they rotate.

I'm going in to see my local endo later today. I hope it's a good report, that all of my other hormones are in line, and not out of whack. I'm looking forward to just getting stronger, and living a Cushing's free life. I'll post what I find out at the Dr. later today.

Woo hoo! Dr. says go off of all steroids!

I'm excited to hear this news from the local doctor. Although, they seem to think I can just magically quit taking them and be OK. I know better. You have to wean, not quit cold turkey. The good news is, I can wean faster than I have been. I did a stim test and stimmed to almost 20 so they say to get off of the steroids now. That means I'll lose weight faster now, and hopefully get my blood pressure back to normal, discontinue meds for that and other things along the way. I feel like I'm getting my life back, slowly but surely.

My worst day post op is much better than my best day with Cushing's! This feeling is so exciting! I still don't feel 100%. I still wear out easily and require a lot of sleep, but that is becoming less and less too. All good signs!

So, for recording purposes, my baseline cortisol was 7.49. After stimulation it was 19.35. I have currently been at 12.5 mg. I'm going to take 10 mg. each day for the next 3 days, and if I feel good enough, go down to 5 mg. for 3 days, then totally off. If I feel too sick, I won't do it that fast, and I'll just tell my endo I have to take it slower. Hopefully next time I post, I will be steroid free, and on my way to total recovery! Yay! They said I have to do the stim test again in 4 weeks. I guess to see how well I'm still doing without the steroids. I'm not sure.