And It's About Time There Was Some Support For Cushing's!
Well hello there! My guess is if you are reading this it is because you or a loved one is going through or has gone through something similar. My journey with this illness is far from over, but I am beginning to see the light at the end of the tunnel. For those who cannot yet see that light, hang in there it will come.
My story starts about two years ago. I had graduated from Air Force Basic Military Training, just completed my Technical school and gotten married. I know a lot huh! Well I guess you could say it all started with my dad. He came from California to help my husband and I move to our new apartment in San Antonio. I remember we went to breakfast and my dad mentioned to me that I did not look well. (That was his nice way of saying that i had gained some weight.) I kind of shrugged my shoulders and thought to myself well maybe I did gain a little weight after all I just got married and probably the schedule of waking up at 0300 and gong to bed around 0100, probably was wearing me down a little bit. But I put it in the back of my mind, and didn't really think about it.
It was around Thanksgiving that we moved to San Antonio and by Christmas none of my clothes fit. I was a little aggravated as we all are when we realize maybe we shouldn't have eaten that lovely slice of whatever, but i was going to fix it. I went on some radical fad diet and started running an extra 3 miles a week on top of the 10 I was doing already. After all this was the same thing I did every summer when I had to start training for x-country. I knew my body, I knew how it reacted, knew when to push my self. Or so i thought, the strangest thing started to happen, the more I ran the worse I felt. It would literally suck all of the energy out of me. After my run I would get home get in the shower and collapse in bed. My husband grew increasingly more concerned about me and suggested that I go and see the doctor. So I went the next day. I was horrified to find that my weight had jumped from 140 to 180! My blood pressure was 140/86 and i had began to see horrid purple stretch marks on my chest, abdomen and arms. I explained to the doctor that I was exhausted all of the time, how my weight had jumped 40 pounds with in 4 months, and showed her the lovely stretch marks and she said I was just depressed. She put me on Celexa and referred me to a psychiatrist and a psychologist. Needless to say I felt so let down. I was just crazy thats what was causing this... so it's my fault.
I remember looking at some recent pictures that were taken of me and i burst into tears. My face was so round and I looked horrible. Not to mention my work was giving me a hard time about how I just didn't fit with military standards, and questioning if I truly wanted to serve. Now in the military how it works is they put you in a program that helps you “ attain you fitness goals”. I saw nutritionists, exercise physiologists, kept logs of what I ate, when I worked out, what time i went to bed, mainly I was writing down every single aspect of my life. I did this for about 9 months, trust me it got old.
One day I went back to see the doctor for a cold I had gotten, and ended up seeing another doctor, as mine was out sick that day. He took one look at me and told me he was going to refer me to an Endocrinologist.
A few weeks later I went to the Endocrinologist who told me that i looked very much like a Cushings patient and he was going to run some tests on me. I did the 24 hour urine test and my results were strange because they fell in the 70's range. Normally anything between 50-100 was considered high, however for some reason the lab at the hospital had different ranges which 70 would be considered normal. I was so bummed because as soon as he mentioned Cushings I went to the Internet and looked it up. Thats where I found this sight. I read every patient bio hoping to be able to relate. I thought this is it.. I have Cushings...there is finally a reason for me being so sick all of the time! He ran a DEX-CRH test and that came back abnormal as my last measurement was 4.8. ( i apologize for the lack of actual medical measures but i don't have the labs in front of me at the moment and I cannot remember exactly what they were.) My Endocrinologist was pretty confused as the test results came up really strange. They ran the test a second time and everything came back normal. I WAS SO UPSET! I knew that this was it... so about a month went by and I went back to the Endo. He was as convinced as I was about the Cushings. He put me on ketoconazole for a trial period and had me take weekly 24 hour urine tests as well as weekly blood work. About a month into this trial my liver enzymes went up and they had to stop the medication. However my husband had noticed a difference in my stretch marks which means that the medication was working. It looked more and more like i presented with Cyclical Cushings. Which would explain the DEX-CRH tests. Two weeks ago my case was presented to the Army and Air Force medical something or other in hopes that we could get some answers. I am suppose to hear from the doctor pretty soon about what they came up with.
Anywho thats enough for the moment but I will certainly keep you posted on what is going to happen.