Day seventeen of Cushing's Awareness: Weaning from Hyrdocortisone

I had my next phone appointment with Dr. Friedman in March to discuss my newest test results.  My cortisol had risen a few points and so had my ACTH.  A few of my thyroid numbers looked wonky, but in the grand scheme of things Dr. Friedman thinks for now that my thyroid is okay.  He wants me to have a glucagon growth hormone stimulation test done so that we can be 100% sure of how deficient I am with my growth hormone levels.  If I fail the test, then I will start taking growth hormone injections.  I explained that I'm still weaning down as much as possible on my steroids, but that I am not sleeping well at all.  He feels that I am still in remission, but he is concerned about the lack of being able to sleep at night and the fact that I am noticing very specific changes at night that only can be pinpointed to a cortisol surge.  At the time of this phone appointment I was still on around 20 mg of hydrocortisone, but have since weaned down to 13.75 mg.  I am set to give roughly ten vials of blood on day three of my next menstrual cycle.  Now to figure out when that will happen.  Nothing has been very regular since my pituitary surgery.

Weaning is a very, very difficult process for me.  I've heard the horror stories for years about how hard it is and  unless you have lived it you can honestly never truly understand how difficult it can be.  It doesn't seem like it would be hard because our bodies are already used to excessive amounts of cortisol, but even when you take away the smallest amounts it's like every pain receptor in your body wakes up and starts screaming.  I initially was doing 2.5mg weans every week to ten days.  Within 24 hours of the wean I would start hurting all over.  It has been likened to what a person feels like in withdrawal from heroin.  I can't say for sure as I've never been a heroin addict, but it literally feels like something that would have no sensation such as your hair is capable of hurting during a wean.  I feel like my bones are going to crumble, my joints will ache so badly as if there is absolutely nothing in my body lubricating them when I move.  So that's the first 24 hours, then on day two I experience all of this and then get hit with nausea.  Everything makes me feel like I am going to heave, but I never do.  If I feel that close to throwing up I take a Zofran and lay as still as possible in bed in hopes that it will pass.  Diarrhea usually accompanies all of the other symptoms and let's not forget the lovely headaches.  Weaning feels like adrenal insufficiency, but as long as I am not throwing up I just try to survive it.  Day three of a wean feels like a semi smashed into my body.  I am exhausted, achy, still nauseous and ready for my body to start adjusting.  Usually during those first three days I am able to sleep up to eight hours, but only during the day.  I count on my wean days being the only days I actually get sleep during the week.

Once I got down to 15 mg from a starting amount of 25mg, I decided to start weaning in increments of 1.25 mg instead of 2.5.  2.5 mg was starting to really take a toll on me and I think the lower I get the harder it will be for me to take that big of a chunk away.  I tested this theory out this week and definitely feel that I was able to work through a 1.25 mg wean a lot easier than a 2.5.  However, I am still experiencing all the usual side effects, but maybe toned down a smidgen.

They say to take baby steps when weaning so that your body can gradually adjust.  If I truly felt I was in remission I might not be pushing myself so hard to get weaned down.  Dr. Friedman doesn't want me weaning any more frequently than once a week, so I will adhere to that.  I honestly do not feel that I am in remission.  Every night I am up ALL night long again.  I look in the mirror and I see that red face coming back.  I honestly believe it looks more red than it ever has.  Even my stretch marks are more red and angry than before my surgery.  Every wean I keep thinking that I will start to notice a little change for the better, but I don't.  It's really, really frustrating to me.  I just want this nightmare to be over with.  I want to get better so that I can enjoy my life and be the mom to my kids that I want to be.  I want to go on bike rides with them, take them swimming, run along side them, but instead every single day I struggle to just take a shower.  This disease is very depressing and it's one that takes a huge toll on you physically and mentally.

I have days where I just look in the mirror and start crying.  I know that the Cushing's is still there, but then a dear friend will tell me to hang on to hope and just wait until I am off the steroids completely to see what happens.  Maybe my pituitary is awake again and everything is just extra and keeping me sick.  Every day I question myself.  Is it here, is it gone, will it ever get better?  What will my next MRI show?  If it shows tumor regrowth, will I have surgery again?  Will I be one of the people who has to have their adrenal glands taken out in order to finally be rid of the Cushing's monster?  So many unanswered questions.  For now, it's time to wean down then start testing for Cushing's again.

I really, really hope I am wrong this time.  If it is indeed back, I will put those boxing gloves back on and kick it's booty!  I've got a lot to fight for and I may have my bad days, but I am not going down without one hell of a fight.

Here is a video about Cushing's that was done with my Endocrinologist, Dr. Theodore Friedman and a friend I had the honor of meeting online.  She is a true Cushing's warrior!  I saw this episode on the National Geographic Channel years and years ago and immediately started crying.  I saw myself in this video and I remember looking up Dr. Friedman and feeling sad that he wasn't nearby.  I only wish I would have found a way to get to him sooner.  He truly is a genius in this field.  I hope he gets cloned because without his expertise and research I would still be wandering around looking for help.  I wonder how many others out there are suffering the same way I did because of the lack of understanding of this disease by the people who are supposed to be "the experts?"