And It's About Time There Was Some Support For Cushing's!
Hello. This is my story. I am a 29 year old female who has been ill for years, really since high school (Back then I had more GI complaints with IBS, anxiety, and heat intolerance) but the really big change occurred almost four years ago which has led me to believe I have Cushing’s. I am a pharmacist and was completing a residency after graduation. About 6 months into my residency, I had severe bronchitis and experienced my first ever asthma attack. I was prescribed a 5 day dose of prednisone, antibiotics, and inhalers. After two weeks, I was still feeling weak all the time. I was nauseous and vomiting almost everyday. I weighed about 130 pounds at that time and had always been thin my whole life. Then the weight gain started…
I continued to feel awful and kept returning to my PCP who said I just kept getting viral infections. I was leaving work all the time, which for anyone who has ever done any type of residency knows that this wasn’t the best time to be sick. I started having severe mood swings. I was irritable, upset, and anxious. I would have sudden attacks where I would suddenly have hot flashes with severe vomiting and sometimes diarrhea. I started gaining weight. A lot of weight. I was barely eating because I felt so awful and I was gaining about 10 pounds a month. I couldn’t understand why I was gaining so much weight. I went to my PCP and he checked my thyroid. My TSH was normal, but I seemed to have a goiter. No nodules noted on the CT scan. I then went to an endocrinologist who ordered more tests for my thyroid. Radioactive iodine uptake was elevated, which would be more typical of hyperthyroidism. T3 and T4 were normal. Then he discovered I had antibodies to thyroglobulin. Diagnosis of Hashimoto’s thyroiditis, but euthyroid, so no treatment was offered.
As I continued to gain weight, I started having other complaints such as insomnia, facial flushing and redness, hypertension, tremors, decreased libido, fatigue, poor concentration, decreased memory, acne, and tachycardia. My face was really round and red most of the time. I developed this “hump” on the back of my neck and starting getting huge stretchmarks that were purplish. My skin was getting thin and in certain areas where it rubbed together, it was turning yellow and was somewhat painful. My husband started complaining about how much of my hair was in the drain. Most of the weight gain was in my abdomen. People I worked with thought I was pregnant. I still get that question quite a bit. Nothing is more embarrassing when a coworker comes up to you and feels your belly and asks when you are due to have your baby. I was also planning my wedding at this time and because of all the weight gain, I ordered my wedding dress four sizes too big, expecting that no one was going to find out what was wrong with me by the wedding. Good thing I did, because it barely fit by the time of the wedding. I went from a size 8 to a size 22W.
My endo saw all these changes and started wondering about Cushing’s. I had asked him about it before, but he dismissed it. I had a 24h urine a few years before due to about a 20 pound weight gain, hypertension, tachycardia, and a physical change with my face becoming round and red. This was when I first started developing some small physical changes and was nauseous and vomiting. Anyway, my endo did one 24 hour urine for cortisol which was 72 (As I recall, the 24h urine cortisol from 2000 was about 120 – my doc said it was a little elevated but nothing to worry about – shortly after that I had a short period where I stopped all the meds they were giving me and actually felt ok for about a year). My features continued to change and I brought a picture from the year before to show the physical change in my appearance. My endo was shocked. He brought his medical resident to come in and see the stretch marks and other body changes to show her what a Cushings patient looks like. I had some 8 AM and 4 PM cortisol and ACTH that were pretty normal. Then I did three UFC in a row (this was about 3 months since the first one that was 72). These were 15, 21, then 27. All normal, if not below normal. By that time, the weight gain had pretty much tapered off. I wasn’t feeling quite as bad. My nausea was controlled with medication. MRI of the brain was normal. At this time, I thought I was going to go to NIH, but then they looked at my labs and weren’t very convinced and said I probably don’t have Cushings. They wouldn’t see me at NIH. My endo thought I had cyclical cushings and was hoping NIH would help discover it.
Since then, my husband and I moved to West Virginia. My weight was now 205 pounds and I couldn’t stand it. I didn’t even recognize the person I saw in the mirror. I knew something was still wrong. Now I started having acid reflux. My new PCP scheduled for me to go to Johns Hopkins to see a new endocrinologist. This endocrinologist has been very kind to me. The first visit, he thought this really looks like Cushings, so we did two salivary cortisol tests. They were normal. I have no idea what the actual values were. I wasn’t really feeling bad at that time and I don’t really think I was cycling at the time. I saw a nutritionist and actually was able to lose 20 pounds and keep it off for about a year. In the meantime, I started having major gallbladder pain, which took several months to discover, so I missed my appointment at Hopkins. I was then scheduled for gallbladder surgery and my surgeon thought maybe all this nausea I was having was due to chronic cholecystitis. So I had the surgery, felt pretty weak afterwards, no more gallbladder pain, but I continued to have nausea. I started having night sweats every night and was waking up with leg cramps all the time. After about 2 months the nausea and lightheadedness started getting worse and then all of a sudden I gained about 15 pounds in 2 weeks. Shortly after, I had severe nausea and vomiting, like before. This time the Zofran wasn’t helping and I went to the ER 3 times for fluids and IV Phenergan. Now I am on Phenergan four times a day. I can’t stand the side effects, but it’s the only thing helping me actually still work. I’m suddenly very emotional. My boss can’t believe it because since I’ve worked there, I’ve been going about 90 miles an hour and have been always the one who never seems stressed out. I went to a GI doc and she checked my cortisol in the AM and it was 34.5 and a sed rate was a little elevated at 30. My WBC was 11. The other day at work I was so hot, my boss actually had to buy ice to put in a towel around my neck to cool down. I thought finally I have an elevated cortisol. Maybe this is the time to check again for Cushings. I called my doc at Hopkins and he decided to do a dex suppression 1 mg test, which was normal again. He agreed to repeat salivary cortisol. Right now, I am waiting for those to arrive in the mail.
I’ve read so many stories on this website and when I read them, I feel like someone is describing me. Other people who have seen articles on Cushings have given them to me thinking this is what is wrong with me. At this time, I want to thank my wonderful husband who has always been there to take care of me. I don’t know how many days he has taken off from work to stay home with me when I couldn’t take care of myself or to take me to my doctor’s appointments. I’m amazed how he has handled himself and keeps encouraging me to keep going and keep searching for answers. My family has also been there for me and I thank them for trying to understand how I feel. I know it has been difficult for them to see these changes occurring to me. So I will keep going. I see many of you have gone to certain Cushing specialists across the country. I guess this might be my next avenue.
I was just reading some of the transcripts from Dr. Friedmans’s chat on your website. I checked out his website and was grateful to see there was some information to try to determine when a patient may be cyclic. Both of these websites have been so helpful. Thank you to all who have shared your stories. I can continue to have hope. If anyone has any comments, please feel free to contact me at larissa.coyle@adelphia.net.
Larissa
