I knew something was really wrong. I quickly wound up with “frozen shoulder” and was in horrific pain. I noticed I was gaining a lot of weight. When I pointed this out to my doctor she told me to “lay off the soda and Cheetohs”. I hadn’t eaten any processed food or had a soda in almost 2 years. I ate an almost perfectly “clean” diet and worked out 5-6 days a week. I was given another steroid shot in my shoulder and it finally started to get better. However, the rest of my body was breaking down. I gained 30 lbs in less than a month, my joints were so swollen at times that I went to the ER and was given morphine for pain. I was told I must have lupus or another auto immune disorder. My hair came out by the handfuls, I got a buffalo hump, my face was the size of the moon, I had stretch marks, discolored skin on my hands, bruises everywhere, a hairy face so bad that I had my entire face waxed from forehead to neck – twice! I gained weight in very different places than I ever had. Mostly I just felt like I was dying. My doctor just blew me off at this point.
It was my brother-in-law who told me to research Cushing’s and when I started reading all the info online I couldn’t believe it fit almost all my symptoms. When I told my doctor she sent me to my first endocrinologist. I came armed with photos of myself over the past 6 months. He agreed it was Cushing’s and likely from the steroids, but was not totally sure as it had been spread out over a year and didn’t seem to be “that much”. He told me to just wait it out. In the meantime, I struggled with everything…getting up at 5am to go to work an hour away, 10 hour work days, taking care of my 2 kids and house. My husband was angry that there were no answers and shocked at my appearance. I didn’t want to leave my house but had no choice. I was in such pain and felt so ill every day but I just kept plugging along trying to act like it was all fine. I had no appetite and felt nauseous most of the time. Most days I ate only a hard-boiled egg and tea yet couldn’t lose a pound.I did the overnight dexamethasone suppression test and every other blood test imaginable. My cortisol was high but not off the charts. My ACTH was high. All of my labs were always a bit off. I had no period. I was exhausted all the time. I continued to have regular blood work each month and to ‘wait it out”. After 6 months of this I switched doctors. I was given an MRI and told I had a microadenoma of my pituitary and again, to “wait it out”. After over a year of waiting, I was tired of it. I switched health plans and doctors and waited months for a new endocrinologist. My new GP ordered another MRI which confirmed the pituitary microadenoma. I started to look less like a moon face and my hair stopped falling out but I have not been able to lose even a pound. I continued working out and running races. I had a pain my groin just before a 1/2 marathon but tried to run through the pain. I finished but went to the doctor after only to find out I had a stress fracture of my hip. I was 43 years old. After 4 months on crutches my bone still had not healed so I had to have hip pinning surgery. In the meantime, the tendons on my opposite Achilles started to break down and I was in a “boot”. After a total of almost 6 months on crutches and the boot, I am now walking on two legs but my fracture still isn’t fully healed. My new endocrinologist did another suppression test and ACTH last month. My cortisol was 25 but suppressed with the dex and my ACTH was the very high end of “normal”.
It’s been over a year and a half since I have had any steroids at all and while I am slightly better than I was a year ago, I am nowhere near normal. My new endocrinologist seemed promising but she didn’t respond to my test results for a month. She now says that she “might” want a 24 hr urine. I have done those 4 times so far and they are always abnormal. With 2 MRIs showing the pituitary microadenoma, always cortisol over 25 for the past 18 months and never a normal ACTH level, where do I go from here? If it was really caused by the steroids, how long until I am normal? I am now trying to see an endocrine specialist.
Newsletter: Spring, 2014