Saturday, May 30, 2015

HOPE! A recap of where things stand plus an update

After more than a decade of Cushing's Disease taking a heavy (har har) toll on my body, I had brain surgery last February at MD Anderson Cancer Center in Texas.  They definitely got the tumor, but pathology said it was "hyperplasia" meaning spread out, random cells throughout my pituitary were slightly overgrown (think buckshot), instead of a solid, encapsulated tumor...these had just had long enough to grow together into a visible clump.  Surgery didn't fully resolve my Cushing's Disease symptoms or test results, but it all appears to have gone away when I developed empty sella about 9 months later (ie, my pituitary is now being smushed by the CSF that surrounds my brain).

That empty sella both killed off what was left of my Cushing's, and some of my pituitary's own function.  I can no longer produce growth hormone (bit of a misnomer) and that deficiency made me feel almost as bad as Cushing's did.  I have been replacing growth hormone with a nightly injection for about 4 months now, and am getting close to what will likely be my ultimate required dose (titrating up also made me ill as it catabolizes cortisol and my body's HPA axis is still trying to recover from Cushing's).  I am on the low end of normal for the next hormones that generally are affected following pituitary damage, which affect the female hormones.  I will be starting transdermal estrogen soon (insurance doesn't want to pay for the brand my Endo specified in the rx).  I also started oxytocin (a posterior pituitary hormone) a little over a week ago.

I am once again back on fludrocortisone too.  Aldosterone (that fludro replaces) is another adrenal hormone that regulates sodium and fluid balance in the body.  Aldosterone deficiency has some pretty nasty symptoms and signs, such as nausea, dizziness, loss of appetite, headaches, low blood pressure, high pulse, etc.  BUT, very long story short, we found out I was on too much sodium and not enough of the hormone to help me retain it.  I was adding an extra 2,500-5000+ mg/day on top of what I ate to keep my blood pressure high enough.  And, guess what, it doesn't work as well as enough hormone with just a touch of extra salt dose.  So, I went off the sodium for a few days to try to flush it out of my system before upping my dose.  That was nasty, but with the first dose of fludro my symptoms disappeared.  I'm now taking 1/2 of a fludro twice daily, eat normally, and at most have to add in one or two grains of coarse sea salt (but almost never).

We'll keep testing every month or two to make sure my current hormone replacement is appropriate, and to watch for further losses in pituitary function.  The next hormones in line are generally thyroid (TSH) and cortisol (ACTH).  But so far my thyroid is holding out.  Don't ask me how since I already have hashimoto's?!  But, I haven't even needed thyroid replacement for a couple years.  Most of the hormone replacements I'm on increase your need for cortisol, so we're watching that closely and I have a very low-dose hydrocortisone prescription to use with dosage increases so that I avoid adrenal crisis.

All that medical mumbojumbo said (I swear that was the condensed version), I think we've finally figured out my roadblocks!  As I keep telling people this week, I went from "sick and tired" two weeks ago, to "plain old tired."  I mean, I'm still hypopit, and hormone replacements aren't perfect.  I still have to adjust doses depending on temperature (fludro is a PITA), exertion, stressors, etc.  And I still have to recover from Cushings' extensive damage, but I FINALLY feel like that is actually possible!  

Since the fludro/salt changes, I've been able to do more during the day and not be deathly ill by nighttime.  Yesterday I even did "Easy Yoga for Beginners" from amazon prime streaming.  It was basically stretching, and probably 75% of it was on the floor.  I couldn't even hold my arms up straight for the warrior pose when we got to it, which was a bit disheartening.  Yes, Cushing's and AGHD did THAT much damage.  

I did have to stress dose by taking some hydrocortisone late last night (but that's as much about the GH dose increase I'm adjusting to as the extra exertion).  I didn't feel sick exactly, but my bp was low, my limbs felt like lead, and it felt like I didn't have the physical energy to breathe...rather literally.  I took the hc to be safe.  My BP didn't even hit 120/70 with it and I slept great so it appears that was a wise choice.  

I'm SO sore today, so I'm not going to let my muscles rest a bit, lest I injure myself, but hopefully tomorrow I can do it again.  I really want to get back to an active lifestyle.  I WANT to be able to cook and clean.  I want to be able to turn on music and dance around the living room with my kids, or go on a walk, go shopping, meet up with friends, etc.  I still have to be a bit careful, but things are looking up.  I am really hoping that my muscle, stamina, and energy increase quickly.  Exponentially would be great!  ;)  

Saturday, May 2, 2015

The Magic Foundation Adult Convention

The adult program and registration details are now available here!  

I'm so excited!  I'm planning to attend.  My endocrinologist is speaking Sunday, and some of the topics I look forward to most right now are things like dealing with insurance, oxytocin replacement, how hormones interact, hormone testing and replacement in hypopituitarism, and solu-cortef pumps!  YAY!