Basically, the nurse announced that my cortisol was back up to 400 but all my other hormones have tanked! That's right, all the other hormones controlled by the pituitary e.g. Growth, thyroid, etc... Are so low the nurse even wants me to redo it because she's wondering if it's a lab error.
To give you a rough idea, the thyroid one is suppose to be between 12-22 and mine was 0.3. That's the sort of results I got on Wednesday. Needless to say I was VERY upset. I knew this was a possibility but I was hoping if I became panhypopit (the term used to describe when your pituitary functions all drop) it would be worth it because I would also see a drop in my cortisol. But no... I should be so lucky!
So what does that mean? Well the nurse says I should leave it at least 6 weeks because these things can take time to settle down but basically I'm gonna have to start HRT (hormone replacement therapy) for all these other hormones and I STILL have Cushing's. Sorry but life's a b*tch!!!
I'm not normally the "Why me!?" kind of person. For those of you who read my blog or watch my videos, you'll know that I'm usually pretty optimistic and positive. But I have to be honest, I'm started to feel worn out. I've always been better at sprinting and this feels like the longest marathon ever. I've been battling with Cushing's symptoms for nearly 10 years now and been actively trying to diagnose and cure it for the last 3 years. I've been through countless painful tests, blood draws, MRIs, CT scans, 3 neurosurgeries and I'm still no closer to being rid of this monster of a disease.
On this present day, 15th of February 2013 all I have to show for everything I've endured so far is a lot of bruises and a f*cked up endocrine system! The nurse says it's so surprising that all my hormones went down except the cortisol, she said: "wow, you really are a special and rare case". But as my blog tagline clearly states: I always wanted to be special but having a rare disease wasn't what I had in mind...
But you know what? I refuse to let this bring me down! I'm not quite ready to give up yet and I'll tell you why. I kinda lied in the paragraph just before when I said all I had gained was bruises and bad hormonal function. I made some amazing supportive friends along the way and from the feedback I've received through my blog and videos, it seems I've also managed to inspire a few people too. During my stay in the hospital, if I was feeling low, day or night I could go on my facebook and see a new comment one of my friends (or family) would have posted, telling me to stay strong and that they were thinking about me. So many people who know of my struggle through my mother sharing the news with her friends, have come forward sending prayers and encouragement. I am truly touched by the kindness of all these people, some of whom either only met me once or only know of me through my parents.
Do I feel wonderful and happy and ready to fight again? Not quite, but I sure as hell ain't ready to let this take the best of me. NO WAY!!! I've already come this far.
I have another blood test on Monday and will be reviewing the results with my endocrinologist this time on Tuesday. I'm hoping things will improve by then but if not, well at least we'll be able to discuss what needs to be done and start making a plan about my treatment and care in the present.
This is my big thing right now. Living for and in the present! Sure we say it all the time and it's something I've been working on for years but I really think I'm getting much better at it. Not saying I'm not as ambitious and future-oriented as I used to be but let's face it, if my future is gonna be shortened then I sure as hell am gonna make sure I make the most of what I've got right now.
Here we are all feeling down and hopeless about your case and you turn out to be the strongest of the lot. We can only have love and admiration for you Stéph.
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p.s. do you remember the Li family? One of the sons is called Guy. You'll like him. :-P
I'm not sure if you know my story, Stephanie. I had three pituitary surgeries, all of which failed for a cure. Like you, I became panhypopit (pretty much a given for anyone undergoing multiple pituitary surgeries, unfortunately). Shortly following my 3rd pituitary surgery, I opted for a BLA which finally cured me of Cushing's. I now replace all pituitary and adrenal hormones and am doing fantastically! All my Cushing's symptoms are gone and I live an active, healthy life. I know you're super discouraged right now, but I bet your cure is right around the corner! Keep fighting!
ReplyDeleteThanks for your comment! It gives me hope that one day I'll have a normal active life again.
Deleteyou are so strong I bet you never realized how strong you are ,,, but you cant give up you gotta have hope because your still here and theres a reason for that and I believe its a good one this thing is so overwhelming I think I need a pep talk myself Im scared I just had my first surgery on feb. 14th yes valentines day ,, Im scared because I was tested the morning after surgery but I have not been tested since then yet ,, Im just praying it doesn't go up I might just loose my mind oh I guess that wont happen since I have already lost it through all these years ,, I just never realised it could be this hard the suffering we go through is torcher and I wouldn't wish this on my worst enemy ! They seem to think I have good chance for a cure because my net morning cortisol was 1.6 wich is super low Im just worried its seems it has worked because I got al the horrible symptoms of cortisol withdraw and no one warned me how horrible this is and or that it could last a long time ,,, Wow I really admire you Steph I know its not fun but you are surving a great purpose right now you give us all hope to continue because if you can we can Thank you so much for sharing Juanita Kelley
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