Day 23 of Cushing's Awareness: Not always textbook

An extreme textbook image of the striae that is usually
 indicative of Cushing's.

One of the biggest things I cannot stress enough with this disease is that you do not have to be textbook in order to have this disease.  One of the biggest reasons I was told for years that I couldn't possibly have Cushing's was because my striae (stretch marks) were not wide enough, nor dark enough in color.  Textbook would say that in order to have Cushing's you usually have deep red or purple striae, this is not always true.  I have always had fairly thin ones and they sometimes were a light silver to light pink color, but late at night when my cortisol levels would increase they would turn a bright red color.  Of course every time I was at the doctor's office I was low so they were never able to witness the color changes that I was able to see late at night.  

These striae can be all over your body.  On the breasts, abdomen, shoulders, buttocks, back, thighs, legs and on your lower belly area near your privates.  It's not bad enough that Cushing's makes you feel like crap, but it also terrorizes the appearance of our body as well.

Another big one is the 24 hour urine free cortisol tests.  It's considered the gold standard test for Cushing's, but if someone has episodic or cyclical it may be very hard to catch a high.  Once in a while you may get lucky and catch a high one, but more often than not it is very hard to catch with cyclical.  The logic being is that for the majority of those who cycle we have extremely high levels of cortisol late at night when our numbers should be bottomed out, but during the morning and day our levels would bottom out.  So, in essence our 24 hour collection could still look normal because we are still catching a low and a high which ends up averaging out the numbers. However we need to prove that our diurnal rhythm is flipped which is something that is very common in cyclical Cushing's.  One of the reasons I chose to go to Dr. Friedman is because he has testing protocols in place to help catch those late night highs for those of us that are hard to diagnose.  He allows us to do a 10 hour urine collection from 10 P.M. until 8 A.M. and he then uses the average of the cortisol and creatnine ratio to determine if we were high during the night.  He also tests using midnight blood draws if someone has a hard time catching a high with urine which measures free cortisol versus serum cortisol .  It's nice to have options when you are dealing with the less understood side of Cushing's.

There are many symptoms that aren't usually listed in textbooks as a sign of Cushing's, but when you put all the pieces of the puzzle together they tell a story that can point to Cushing's.  I have had an elevated white blood cell count for at least the past 13 years.  I started noticing a pattern when I went in to have carpal tunnel surgeries and also my knee surgeries.  They were afraid to proceed in fear that I was fighting off an infection, but I informed them that this was normal for me.  Excess steroids in the body will cause your white blood cell count to be elevated.  Also, a lot of people with Cushing's have Vitamin D levels that are extremely low or completely bottomed out.  There are just so many different symptoms, but like I said before you have to put all the pieces of the puzzle together and then it all starts to fit.  Just remember to keep fighting and always do your research.  If I had listened to all the previous doctor's I would still be sitting here wondering what happened to me, but instead I took charge of my life and educated myself the best I could so that I could fight this disease head on.  

Day twenty of Cushing's Awareness: Three months post op.

Today marks three months since I had my pituitary surgery to remove three tumors at MD Anderson Cancer Center in Houston, Texas.  It sometimes seems like yesterday and other days it feels like it was forever ago.   Up until my artery bleed on February 2nd, I truly believed I may have been in remission.  I really noticed good changes in myself.  Every single day I still want to believe there is a chance that I am in remission, but in my heart I know that I am not.

Dr. Friedman has told me he believes I am in remission, but he is also concerned that I am having massive problems sleeping again.  It's been almost a month since I have talked to him and things have drastically gotten worse.  Every week I work on weaning down on my hydrocortisone which is a steroid that I've been on since surgery.  Every week my dose gets lower, yet my symptoms are getting worse.  This doesn't make sense unless I am still sick.  I've suspected it for quite a while, but mentally I am coming to terms with the fact that it's not gone.  I weaned myself down an additional 1.25 mg today so that puts me at a total replacement of 12.5 mg of hydro per day.  I'm hoping within a month or two I can be completely off it so that I can begin the testing process again.  I hate that I have to prove I'm sick all over again, but I am so grateful that I have Dr. Friedman as my doctor.  I know he will never dismiss me and will always allow as much testing as necessary to prove or disprove that I'm still sick.

Why do I think I'm still sick?  Roughly two weeks after my surgery while in the hospital for my artery bleed I started noticing I was having a hard time sleeping at night again.  The previous two weeks I had been asleep by 11 or 12 at night.  That was super early for me.  I would wake up at six in the morning and actually feel fairly decent considering I was still very much in the recovery process from brain surgery.  As time has progressed the insomnia has become so much worse.  I am no longer able to even fall asleep before 6 A.M. and some days it has been as late at 1 in the afternoon.  I will finally fall asleep only to wake back up within three hours and then I do it all over again.  I am so sleep deprived, but I cannot sleep.  I know that my body needs rest so badly, yet I am unable to make it sleep.  During the night I will notice my face turning bright red again and also my lovely "tiger stripes"(striae aka stretch marks) are changing to a bright red color.  My supraclavicular fat pads seem to be getting larger, my belly is getting more firm again and hurts to be touched.  After my surgery my belly became soft and didn't hurt anymore, so this coming back is frightening to me.  My rash on my arm and scalp are back in full force, the swelling is coming back and my cheeks are puffing out again.  I swear I noticed a new dimple in my cheek simply from it being bloated more than it had previously been.  I'm not understanding how my symptoms can actually be worse than they were prior to my surgery, but somehow they are and it's disheartening.

I really wanted to have a happier post for being three months post op, but I do not.  However, today I am feeling a little more positive about it.  I have my days where I am extremely sad, then I'm angry and then days like today where I feel like putting on those boxing gloves and punching this disease right in the face. One day I will get my cure, I may have to have my adrenal glands taken out to do it and I'll be trading Cushing's for Addison's Disease.  However, anything is better than Cushing's.  I know that my life will never be normal, but I know that it can be a lot better.  That is worth fighting for. :)

Never lose hope.  Never.

Day Seven of Cushing's Awareness: Los Angeles, my city of Angels.

When I got home from that most devastating Endocrinologist appointment in St. Louis I put my research cap on.  There were two doctor's in the Cushing's community that were considered to be the experts in the country.  I decided Dr. Friedman was by far the one that would fit me the most in terms of his testing methods. I was sure that when I had highs they were at night and that I was bottoming out during the day.  I needed someone who believed in Cyclical Cushing's and knew how to test for it.  Dr. Friedman has tests set up perfectly for someone like myself.  Most Endo's only collect a 24 hour urine cortisol, where as Dr. Friedman does a 10 hour that is from 10 at night until 8 in the morning.  This is an excellent way for someone like myself to catch the highs.  Also he does other tests that most Endocrinologists don't do that check to see if recently your body had been high with cortisol.  This was one of the tests the I scored high on, even when my pee tests would come back normal.

Once we got our tax refund back I decided it was time to take action.   I booked the appointment and got everything set to go to Los Angeles on June 6th, 2011.  It never would have been possible if it weren't for the help from my family.  I am forever grateful to them.  I spent days working on getting all my past medical records together in a huge binder, collecting photos to show Dr. Friedman and just getting myself ready to go to L.A.  I was scared to death, yet I was hopeful.  What if he told me I didn't have this?  Was this my fault somehow?  All these questions running through my mind.  I was having a hard time just leaving my children behind for five days to head out there.  I had never been away from my babies before, but I knew if I didn't do this they may not have a mom around anymore.  I had to put on my big girl panties and do this.

I remember the feeling as we were starting to land in Los Angeles.  I was so overwhelmed with raw emotion.  I teared up and thought to myself, this is it.  Everything I have been through has led me to this city.  Would it live up to it's name as the city of Angels?  Everything went perfectly once we arrived.  Very odd things happened that I cannot explain, but I felt surrounded by Angels.  A song came on the radio that I associate with my Grandma who passed away.  I was very, very close to her.  This song was very old and there was no way it would just randomly come on without it being a sign from above.  I felt immediately at peace and knew that I was in the right place.  On June 7th, we arrived at Dr. Friedman's office.  My hubby took a pic of me in front of the sign with Dr. Friedman's name on it. Cheesy, I know but this was hopefully going to be my life changing experience.  We arrived way too early so we just hung out until it was time to go in.  I felt complete panic walking into his office. I was greeted by Dr. Z who immediately almost put me in tears.  He said, "Let me guess, you have been sick for at least 5 years, have seen multiple specialists and they have all told you it was in your head?"  I nodded as the tears began to well in my eyes.  He said "I can tell just by looking at you that you have this disease and that you will finally be taken care of."  As I write this I am still overcome with emotion from those words he spoke to me.  Someone finally could see what I had been trying to say for years.

He took all my vitals and wrote that my pulse was high.  Another symptom of Cushing's.  I rarely have a pulse below 100.  I then returned to the waiting area until Dr. Friedman was ready to see me.  He called me back into his office and immediately turned into this nervous mess.  How could I feel calm when my life was on the line and "The Wizard" was right in front of me asking me questions.  He asked me about my story.  I told him.  He looked through my files and of all the sheets in my file he took all my high results and my IPSS results.  He then wanted to see my MRI cd that I brought with. I watched him load it on to his laptop and then he said to me...."And they read this as normal?"  I instantly felt a lump in my throat.  He turned around his laptop and pointed to me on the screen two areas he believed were tumors.  Then a minute later he decided there was a third.  At this point my brain was racing.  I could hardly speak.  I was so overcome with emotions of anger, fear and validation.  He feared that the type of tumors I had may be aggressive because of the way they were showing up on film.  He also examined me and said that he believed I did have Cushing's and he also believed I was growth hormone deficient.  He gave me a battery of tests to do once I returned back to Illinois and a plan of attack for testing.  Someone BELIEVED in me!  The following day I was set to have another brain MRI at Cedars Sinai on a 3 Tesla MRI machine.  It's considered to be the best imaging source for MRI that is out there right now.  He also put me on some Vitamin D drops because mine is low and also wanted me to start taking L Glutamine twice daily to try and build up some of the muscle I had been losing from being sick with Cushing's.  After meeting with Dr. Friedman they drew some blood and I was free to go.  I walked outside and just started crying.  After I regained my composure I phoned my parents to let them know what had just taken place.  My mom, bless her heart was a mess.  No one wants to hear their child has brain tumors, but to me I was overjoyed.  I know that sounds absolutely crazy to a normal person, but to someone who has been sick and knew it was just a matter of time before it reared it's ugly head, it was a target.  A target to evict and hopefully give me my life back.

I did the MRI the next day and spent a few more days in Los Angeles before heading back home to Illinois to begin my testing.  The testing included multiple 24 hour urine free cortisol tests, multiple salivary tests to do at 11 at night or later, 10 hour Urine Free Cortisol tests and he would also check for hydroxycorticosteroids aka 17OHCS which is what would show if I had recently had a surge of cortisol in my system.

It took roughly a month of testing to complete all the tests he wanted me to do.  I would do tests basically 4-5 days out of the week.  I was tethered to the house for the majority of my testing, because collecting urine for 24 hours is not fun to do anywhere else.  Who am I kidding?  It's not fun EVER at any place!!

So in the meantime I waited for all my test results to come back in, got my MRI results which showed several areas where the contrast did not go through, but they couldn't say for sure there were tumors.  Dr. Friedman wanted me to send my MRI off to Dr. McCutcheon in Houston.  He is considered to be one of  the best Neurosurgeons in this field and amazing at seeing what most miss on the MRI's.  So I shipped off my MRI's and began the waiting game.

I  received an email from Dr. Friedman's office stating he would like to have a phone appointment to discuss my results and a plan.  I figured this meant how we were going to proceed with testing.  I had a sheet of paper with questions to ask.  Could I do midnight blood draws so that I could have those highs as well?  I know that I needed highs in at least three different testing areas for him to confirm I had Cushing's. As far as I knew I had only one test come back high so far, but had not seen all the results yet.  I set up the appointment and waited for the call with my questions in hand.  I was prepared to do as much testing as it took to prove I had Cushing's.  I was not prepared for what took place during that phone conversation.