Hi all,
I had pituitary resection surgery for an 18 x 18 x 12mm pituitary adenoma on March 19, diagnosed after I experienced worsening peripheral eyesight over a 3 month period (immediately postpartum). Both pre- and post-operatively, I tested low hormonally pretty much across the board. A few days after surgery I was sent home with brand new prescriptions for Cortef (20mg am, 10mg reducing to 5mg pm) and Levothyroxine (100mcg). Just a few days after being home, I started feeling great: I had energy, I wanted to clean, my brain was clear, communications were clear, etc., and that continued on. The only problem was pretty serious insomnia, for which I (with Dr supervision) supplemented with .5mg Xanax at bedtime. Still, aside from that complication, things were going great. I attributed much of the success to the Cortef-- don't know if that was just or not, but it seemed like I was able to manage every day matters with far more competency than prior to surgery. In short, I had my life back again.
Two days ago I started experiencing issues with my energy: I feel both wired and exhausted at the same time, my neck/upper back is sore for no reason, my eyesight if finicky (it feels a bit blurred or like I have difficulty focusing-- not the same as the tumor on the optic nerve blindness), I'm experiencing a bit of dizziness and weakness (feels perhaps blood pressure related?) and experience only an hour or two of my earlier, more consistent energetic highs (by "high", again, I mean energy to wash the dishes and sweep up, not accomplish any superhuman feat). Today even considering leaving the house feels like a huge thing to ask-- I feel, effectively, bedridden, and have had to take a small dose of my pain medication to give me even a semblance of feeling like a normal human being. Knowing very little about how any of this works, I'm still inclined to blame it on too much Levothyroxine as my symptoms more accurately match those, I think. Still, again, I know so, so little, and I was hoping to gain some insight from this community.
I'm also still experiencing transient DI symptoms (it mostly resolved before I left the hospital), which points me to the idea that maybe everything is still totally out of whack....
I don't meet with my endocrinologist again until the 23rd. Should I be calling and asking for help? At this point I feel a little scared at how wildly my symptoms have fluctuated.
Ugh. I thought this was going to be the easy part.
Thanks for your help!
Alas, it is my 10 year anniversary of my pituitary surgery this month... and I can tell you from my experience and from others I know - it is a big hurdle to get the surgery and one is much better off, but I don't know anyone back to 100% - it can vary a lot to the upper %s - but most of us lost as replacements just are not perfect.
I have to take a cortisol replacement too - and I must ask - why is the doc having you take a dose at 5pm? If you read up, most stop after 2-4pm as oh yeah - it interferes with sleep. It also sounds like your total dose may be giving you steroid induced Cushing's. So you have to work with your doc to adjust not only your total dose, but how you are taking it. Check out some of the links in adrenal insufficiency health pages to get some other ideas.
I would certainly call about the DI. That needs to be controlled and you may need to be on the meds - or some more testing. There may also be another disorder going on.
BTW don't feel so hard on yourself - surgical recovery is not so long but hormonal recovery can take a long, long time. The not wanting to leave the house sounds like your growth hormone took a tumble!!!