Hi everyone, I am Christina and am 22 months post op from transphenodial surgery of my pituatary macronoma. Like so many of the bios I have read on this site I spent years trying to get any doctor to listen to me, because while I insisted something was wrong and I had almost ALL the classic physical manifestations of Chushing’s, after running the basic thyroid panel I was generally dismissed with the advice that I needed to eat less and workout more- advice which infuriated me because as an active duty officer in the Army I was running 3-6 miles a day and going back to the gym after work and down to 1200 calories a day.
I first started to notice a marked physical change in 2005 when I rapidly gained 30lbs in less than 6 months, at the time I was in Law School full time so of course the doctors attributed it to stress even though I was still maintaining my physical activity level as a reserve officer. I also started noticing my once long and full hair thinning and breaking to the point you could really see my scalp and my skin became pale and translucent with constant breakouts. This is also the time when the mood swings and headaches started along with the reoccurring sinus infections and inability to heal from the smallest injury along with black and blue marks all over my body.
Faced with going back to active duty the next year on orders to Korea I basically starved myself and worked out 3 or more hours a day and managed to loose about 25lbs but I could never get below 160lbs no matter how hard I tried, which baffled me since I started Law School at 130! I begged the doctors every time I went in to run tests but they insisted I was healthy because my blood pressure was always 106/65 and my thyroid tests always came back low but still in normal ranges. Frustrated and defeated I pretty much starved myself and lived on caffiene and supplememts for the next 2 years, trying to avoid the doctors at all costs and doing everyting I could to just make weight when it came time for Army physical fitness tests.
My next run in with the doctor came just before my deployment to Iraq. I had rapidly gained 20lbs back seeminingly overnight and I was now having full blown hotflashes along with headaches so violent they caused my right eye to pulse. After basic blood tests came back relatively normal except for an elevated red blood cell count (which should have been a red flag for the doctor to connect the dots) my doctor informed me she thought I had Hepatitis C and wanted me to go to a Veteran’s weightloss group which consisted of being weighed in in front of a group of 25 cranky old men at the VA!!!!! I had further testing to rule out the Hep C which Iknew I didn’t have since I have never touched an intravenous drug in my life and have always practiced safe sex in my relationships. Of course it came back negitive which should have prompted more testing but once again I was just told to eat less and work out more. The doctor specifically told me I led a sedintary lifestyle because I had an office!!! At this point and after trying the support group for a couple of weeks and being humiliated having to weigh in in front of a room packed with men all over the age of 60, I told the doctor she was basically a moron and that it was impossible that I led a sedintary lifestyle because I ran 6 miles before she even gets up in the morning. Needless to say it was the last time I saw her.
Fast forward 18 months later and I am now back from Iraq, (having lost 15lbs from the heat and Army food!) and am starting to notice the weight returning and hot flashes getting worse, to the point I would just start pouring sweat down my head and back. My regular doctor insisted my body was just needed time to re-acclimate back to the climate! Tired of struggling like most Cushing’s sufferers and under constant pressure to be fit for my job I turned to plastic surgery and had lipo and a tummy tuck thinking it would take care of all my problems. Wrong Wrong Wrong! The surgery went well and I was elated with the results, until the tissue around the suture site started to die. (as you know the inability to heal is a classic sign of Cushing’s) So after walking around with a hole (yes an actual hole in my abdomen!!!) for 2 weeks I had to have reconstructive surgery to fix it. About 8 weeks post op from the surgery even though I was literally only drinking 3 protein shakes a day (because I had just spent THOUSANDS of dollars on cosmetic surgery), I was now gaining weight again!!! My surgeon looked at me in contempt for ruining his work until I told him to look at my breasts which had spontaneously grown a cup size since the surgery. Looking back that was actually an Epiphany in my struggle with Cushing’s because he did look, and then he looked harder at the fatty deposits centralized on my neck and trunk and thighs and in a moment I will never forget, said nonchalantly “I think something else is going on hormonally,” and handed me a lab slip!
That lab slip changed my life. When the results came back I knew finally someone was going to believe me, because not only did my new primary care doctor want to see me but she wanted me to have an MRI because the lab results came back with a prolactin level 86.6 and I certainly was not pregnant. 3 days later the doctor called with the results of the MRI and told me I had a brain tumor, but the good kind, and that there were excellent treatments. Needless to say I was less than thrilled with my “good” brain tumor and wanted the thing out of my head and out of my life as soon as possible!!! But at least finally I had an answer and began doing as much research on pituatary macronomas as possible so by the time I went in for the first round of follow up tests I knew more than my doctors.
What followed from my diagnonsis in May 2010 to the present has been the longest 2+ years of my life. I wanted to have surgery ASAP, but because I tested positive for both Prolactin and ACHT/Cortisol the doctors were divided on a treatment plan and made me do 3 months of observation during which I ballooned up to 198lbs!!! I was also suffering daily migranes and mood swings and harrassment at work because now the physical changes could not be hidden. I started to feel trapped in a body that really wasn’t mine.
After surgery I went into complete adrenal failure and was on hydrocortisone for 6+ months. I felt so much calmer after ther surgery even on the steroids, no more mood swings and I immediately started loosing weight with no effort. Although the nausea and daily throwing up probably helped that cause. But everything hurt, and I mean everything, it would hurt my feet to touch the gound and I would get tired easily. In the 7th month, right after a breast reduction to get me close to my pre Cushing’s size and to help with the sever back pain, I weaned of the steroids which brought more challenges and body aches, but with a lot of vitamins and sticking to a healthy lifestyle I managed to go from barely being able to jog a mile right after surgery to finishing my first post op 10K this month in Central Park, NY.
So here I am today 22 months later and extremely cognizant of how far I have come in keeping off the 30lbs I lost after surgery and gaining back so much of my old self, but also frustrated because I am still suffering Cushings like symptoms and the doctors and I are at an impass again becuase they refuse to really look at my symptoms. My headaches have started to come back more intensely and I have noticed a marked increase in mood swings and hot flashes. I have also (despite living with a personal trainer) hit the wall in my struggle to loose the last of my “Cushing’s weight.” Countless hours of research has also yet to produce any information on coping with Cushing’s after surgery, which is why I am so grateful to have finally found this site.
I am hoping by connecting with other Cushing’s patients I can get a few of the answers the doctors don’t seem to have (or at least the ones I have seen anyway)!!! Because I personally am tired of Cushing’s controlling my life!
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