Thursday, April 30, 2015

Why I Think I'm in Remission, and why this isn't the end.

A friend of mine requested I write this post. This is a question everyone asks, and often repeatedly: "Am I in remission?" or "Is this symptom I'm experiencing the start of Cushing's coming back?"  I mean, lets face it: this disease is a mess from start to finish.  Nothing about it is easy.  Nothing is straight forward.  Nothing is black and white and nothing is clear and obvious.  Heck, I sat in a conference room full of Cushing's Patients a year ago and listened to a top endocrinologist in the Cushing's world tell us that one of his doctor-friends had recently said to him "If I had to deal with Cushing's all day every day, I'd kill myself."  Now, this was said somewhat jokingly and we all laughed, so don't take that the wrong way.  He was discussing the ins- and outs- of testing and how complex it is, with high recurrence rates to boot, and that it is complicated for the doctors and confuses them too.

I am pretty sure I'm in remission.  I see more and more signs of that for sure and very few signs of Cushing's now, even though I struggle every minute with the damage it has done.  My life is still a mess.  My health is still a mess.  My symptoms and labs STILL confuse my doctors constantly.  I'm still confused daily by what my body is doing.  No two days are alike, and yet the symptoms caused by various hormone imbalances are...and trying to tease out which hormone is causing which symptom, and whether it is high or low, is just a blast.  A blast, I tell ya.  I still have to watch for whether Cushing's will come back and I am still walking my "tight rope" but it does look like I am in recovery from Cushing's itself.

There is not one diagnostic test nor one symptom by which to judge.  It is not that simple.  Again, it's a weight scale like that of diagnosis.  Even the specialists are informed by the tests, but rely heavily on what *we* report for signs and symptoms, almost more than the testing. So, I'll go through some of what has informed my opinion on the matter for my own remission:

Sleep/Insomnia  I am able to sleep now.  I think I could even nap during the day if I didn't have 6 kids running around.  Before I started my growth hormone replacement, I still had issues with sleep, woke up frequently, didn't feel rested when I woke in the morning, and I had difficulty falling asleep, but it just had a different flavor to it.  I was tired but couldn't sleep instead of wired and couldn't sleep.  It wasn't like I was "bouncing off the walls" with racing thoughts, etc and signs of high cortisol, I simply couldn't sleep well.  Luckily, once we diagnosed my AGHD and replaced that hormone, I started sleeping better from day 1.  Now I have no insomnia or sleep issues.  I can fall asleep at a reasonable time (that adjusted gradually), and I wake up at a reasonable time...kind of.  lol  I'm still tired a lot, but that's recovery.

Appetite/Craving  I can skip multiple meals a day.  I shouldn't, because it messes with my blood sugar which messes with my liver, growth hormone/IGF-1, and can cause some adrenal insufficiency if I'm on the edge, but I have to actively remind myself to eat most days.  I also can't eat even half as much as I used to.  I didn't think I ate too much quantity before, but now some days I have difficulty finishing a small home-made burger (and I do mean small) or I can only eat half of a sandwich.  I'm full.  It is like my stomach has shrunk, except it didn't have a chance to do's literally that my cortisol is lower so my appetite is lower.  It's that direct of a connection.  I also crave carbs and sweets a lot less.  I wasn't a huge carb eater before because my body always seemed to have a greater need for protein and vegetables, but I did crave them sometimes.  Now I can't even eat any form.  I have a hard time eating bread, even freshly homemade bread straight from the oven.  That too was a gradual change, but it's a pretty obvious one.  I can skip the icecream even when others around me are eating it, and I don't feel like I'm missing out.  It just doesn't interest me.  I'm still a chocolate fiend, that hasn't changed.  But you know what I crave these days?  The only thing?  Melted, salty, fatty cheese.  I mean, I liked it before, and loved Pizza, etc...but this is constant.  Weird, eh?  I know my body needs the salt, but perhaps it's my body's way of saying I need the fat too.  Time will tell.

Acne  I still have acne issues.  It's still obnoxious.  I have scars everywhere and I still get big, cystic acne, but I think it is slowly, very slowly fading.  Maybe that just takes time (it's been about 6 months since I switched from symptoms of failed surgery to symptoms of remission), or maybe the growth hormone replacement is helping with that too (when I became hypopit at 6 months post-op, I lost 100% of my GH production).  I can say that the cystic acne doesn't show up at specific times in my maybe it is just working it's way out of my system.  The acne I get that is related to my cycle is MUCH more normal.  I've not experienced it in so long it is weird, but I simply get more blackheads or little whiteheads around PMS time and they disappear quickly without becoming massive and cystic.  It's crazy.  Hopefully the trend of the cystic acne dissipating will continue.

Weight Gain/Loss  I've mentioned before that in my high cortisol cycles I could gain around .5-2 pounds in a day, and in a low cycle I could lose .25-1 pound in a day (something like that?) without any changes to my diet or activity, it was pure hormones.  So, I would go up and down over the course of a month, but I gained faster than I lost and it was an obviously upward trend.  Now I still have some ups and downs in the weight when I increase my GH dose and that causes swelling, or when we went on our trip to Seattle/OR a few weeks ago and ate lots of yummy food, or my fondu-birthday gift we indulged in for a few days, or when my period starts...but I'm on a definite losing trend.  I'm down 19+ pounds from my highest weight, again without any changes to my diet or activity level.  I'm still pretty much chair-bound (one step up from bedridden), and my appetite has changed as stated above, but I still eat the same basic foods and still indulge in my chocolate cravings.  I'm at the point where I desperately wish I could physically cook and exercise (or simply be active) like I once did.  I bet the muscle would pile on and the weight would fall off.  I think I've gained just enough energy in my 3 months on GH to *want* to be active and do things even though I still can't, whereas just 2-3 months ago I was so physically exhausted I didn't even consider it an option, so it is actually a bit more irritating and depressing right now!  lol  Talk about an odd turn of events.

Tests  My post-op cortisol testing was too high, but wasn't horribly convincing.  The neurosurgeon had obviously removed the bulk of the problem, but there was still some residual something going on.  I went on cortisol lowering medication, which I couldn't seem to get stable on (despite having taken it before surgery and doing relatively well on it).  All in one month, we found out that medication was causing me liver damage (it's a known problem, thus the reason I was being screened...but this was the least problematic of the possible medication options), an MRI showed that I had developed empty sella (my pituitary was being smushed by CSF coming from the space surrounding my brain above --this can cause a loss of pituitary hormone production), and my IGF-1 (a marker for growth hormone deficiency/excess) had suddenly dropped by about half, to below range.  I left that appointment with a lot of lab work to do.  I was still testing for Cushing's Disease re-diagnosis, and also adding in more pituitary hormone labs to see if and how the empty sella was affecting my hormone levels.  As it turned out, from a GH stim a few months later, I had severe adult growth hormone deficiency (my body failed to stim at all), and we then began watching the other pituitary hormones to see if they would follow suit.  The jury is still out on that one.  I have "low-normal" results on various hormones, with accompanying symptoms, so only more time and tests will tell.  But, I dutifully did a few more of my Cushing's tests, but then stopped about half way through those (again, it was a good 8-12 total serial tests, so it takes a while).  I just didn't feel "high" when I should have, so stopped testing.  My endocrinologist didn't require me to keep testing to confirm it was gone, he trusted that I knew what I was talking about.  (I *may* need to retest when the AGHD is fully treated, but I doubt it at this point.)

Vitamin D and Ferritin  These were surprising and unexpected.  Some of it may be due to the liver damage (that can affect these results), but after over 3 years of high-dose replacement with 50K iu's of D3/week and 6 ironsorbs/day not getting me into the "normal range", those results suddenly were fine.  I backed off on my D3 and iron per my endocrinologist's request, and the D did fall somewhat, so I'll stay on that (I mean, I DO live in a rainforest in Alaska, and sit indoors in my chair all day!), the replacements work!  My iron has been stable since, despite my ferritin having been at a 4.8 when I started - ie, I needed infusions...and badly.  I think this is another sign that the excess cortisol has left my body.  I may not be suddenly "cured" from these deficits, but the replacements for them actually do what they're supposed to.

Buffalo Hump  This one I didn't notice until my husband pointed it out.  He was rubbing my neck one night, about 5 months ago, and said that my hump was suddenly soft and squishy instead of hard and solid.  My hump had always been a smaller one, but it was there.  Now, a few months later, I just have regular fat skin there.  It may always have a slight hump-like appearance, or it may fade as I lose weight, I don't know...but I'm happy.

High/Low Cycling  This is the biggy.  I still feel like total crap during my period...I still have lower cortisol then, but I don't get highs any more.  There were two days total at some point about 2 months ago where I was able to do more, but it still didn't feel "high", I just felt kinda human again.  And it never came back.  Instead I feel pretty low most of the time, to the point that we are watching me for adrenal insufficiency.  I stray into the "may need a cortisol stim test" range some times, and will continue testing that every so often.  I don't seem to have any adrenal reserve at this point, and when I do much of anything (and I mean anything), I start developing symptoms of adrenal insufficiency.  When I started my GH replacement shots, I had a nasty reaction that my endocrinologist feels was due to the GH catabolizing cortisol, making my cortisol levels drop too low.  Luckily I didn't go into crisis, but it did mean it took me 3 months to get onto the dose my endo wanted me to start at with GH.  We don't know how much I'll need in the end, but I have to be very careful increasing my dosage now because it will lower my cortisol further each time.  I have the feeling I will be panhypopit eventually (lose more pituitary hormone production), thanks to the empty sella, but you never I'm trying to be very careful and not take hc unless I absolutely need it (when I go AI) in case there is a chance my pituitary and adrenals will recover.  I appear to have no adrenal reserve (just enough to get by if I don't do anything, but not enough if I exert myself, am ill, go through a period of stress, etc) and have been trying not to surpass my limits which really is a bit of a crap shoot, to be honest.  (Again, the tight rope analogy from earlier this month.)  But, back to the cycling.  I'm not cycling.  I'm not high.  This is THE most clear reason I don't think I'm dealing with active cushing's any longer.

All that said, being in remission from Cushing's is obviously not the end.  Do I sound like I'm healthy?  I still can't be active.  I still feel ill in one way or another most days.  I've traded Cushing's for hypopituitarism.  And, frankly, I'm good with that.  It is still obnoxious and complicated, but it is far more treatable (if/when my hormones stabilize and we are able to figure out precisely which I need to replace and how much).

Who would have thought that some measly CS fluid would have killed off what was left of my Cushing's?  It's a major blessing; a totally unexpected and unusual one.  The rest of the damage that has caused (or is still causing) will still be a lifelong struggle, but hopefully I'll get some stability and some semblance of a life back, becoming active and relatively healthy again.  I will always have to keep an eye out for the signs and symptoms of Cushing's to return, and many live in fear of that with each symptom that pops up.  I will worry about that when I have reason to worry, but right now I am enjoying that I no longer have to fight that battle. 

I've not experienced a return to what and where I was before, that rarely happens, what I am experiencing is a new body, with different needs, limitations, etc.  It is a new day and I will be a new me. 
Now my job is to learn about this new body, to help it recover and be healthy in it's unique challenges, and to make the best of it.  It'll take some time.  It's intimidating, daunting, and tiring, but I think I've moved through the grieving process to an acceptance that that previous life and previous me is gone.  I've buried her and mourned her loss.  Like any other loss, grief can return unexpectedly, but it is generally momentary.  I know she's gone and won't be coming back, and I can be grateful for what she taught me and enjoy the memories.  What I have now is discovery.  Who is this Cushing's-Free Catherine?  What are her limitations?  Her strengths?  Her abilities?  What brings her joy?  I look forward to meeting this new Catherine, and learning all about her.  It makes me nervous because it's all new, but it is also exciting.

1 comment:

  1. This was very helpful, i my self had surgery on May 3rd, 2016. I have lost over 30lbs and i feel great no longer tired all the time and my mood is much better. however the past week i started back the gym and now i noticed i have gained 4lbs in two days so now am scared again. although my doctor keeps saying my crushing is CURED, don't see how when every where i read people say theirs came back. i just don't know if i can deal with it a second time around.