Day 5: What I learned the hard way

When I finally got to the point that I was ready for surgery and ready to feel better, I wanted the doctors to go in and take it all out.  "Be as aggressive as possible!" I told the surgeon.   I learned the hard way, that the aggressive way comes with it's own issues.  Once the pituitary has been sliced up and the Cushings tumor is gone, what's left is a lack of functionality.  That was the one thing that I didn't read up on before my surgery.  I didn't know about, let alone understand, about being hypopituitary.  What does it entail?  Is it bad?

3 weeks postop, recouping.

Well let me explain to you what I felt like the first 6 months after 2 pituitary surgeries.  For 2 weeks, I felt great.  I was on 90mg of hydro and could only imagine if this was what my body produced (and more) to make me feel so great before surgery.  As I weaned down, the only way I could describe it was like a roller coaster.  You feel ok once you first take the lower dose. Then you go up that giant hill as the days progress on the lower dose.  You think things will be ok, then BOOM! Day 3 or 4 and you start coming down that hill. Your head hurts, your stomach hurts, you are weak and you just don't want to move! Eventually I got to a dose that I could stick to for awhile, so finally I was at an even level.  No more headaches, body aches etc, EXCEPT when I would do too much in general! So I had to still take it easy until my body got used to this dose. 

my thinning hair 3 mos postop

Three months out now and my body now is used to being on 20mg of hydro, but I still had some weird symptoms going on! My hair was falling out, my nails were brittle, and I still had muscle weakness as my joints just burned! I was depressed and having hot flashes and just felt like I was 80 years old!  The doc finally puts me on thyroid replacements first and that helps some! My hair and nails get a little better, but I still get wicked hot flashes and I learn that my memory and concentration suck! I couldn't remember my own phone number when someone asked me for it! So I go see my ob/gyn who puts me on an estrogen/progesterone patch. That definitely helps with the hot flashes and depression. 

Months go by and I still don't feel "normal."  I try to wean again, thinking maybe that's it.  The fact that I could be cushie again is always in the back of my mind.  Every symptom comes back to that.  It's hard to fight that feeling of a Cushings recurrence! But I finally get some more blood tests done, my thyroid is tweaked and the doc tells me to go back up to 20mg of hydro.  I do and I feel so much better and even lose weight doing that!  The doc finally gets back the IGF-1 test and it shows a level of 50.  VERY low.  So he finally starts me on Genotropin.  OMG what a difference!!  Even the lowest dose made a huge impact!!

I had my surgery in June and it wasn't until January that I felt even remotely normal!! I had energy, my hair was growing again and my muscles didn't hurt!  I still have to get my hormones tweaked to this day, but getting on the GH was what pulled it altogether.  That's when I realized that we really have no clue how much our body does! And how much the pituitary really affects every day life! 

I'm not sorry that I told the surgeon to be aggressive.  I have to make sure all my hormones are correctly replaced to work together and I have to be conscious that when I get sick that I have to stress dose.  But while taking all these meds sucks, I wouldn't change that for Cushings any day!!