And It's About Time There Was Some Support For Cushing's!
Hi. My name is Elise T. I am originally from Sacramento CA and am 26 years old.
I first heard of Cushing's a few months ago. I have had "hormonal issues" since puberty (age 17). My cycle has never been regular. At first it was every two weeks and would last 10 days at a time. I tried over 10 different kinds of birth control pills over 5 years, but either they didn't work or the side effects were worse than the problem. Puberty had also brought facial and body hair as well as really oily skin and acne. I stopped the pill all together in 2002.
In 2004 my period was non existent and the "PMS" was unbearable. I went to an ob/gyn who diagnosed me with PCOS because of the spaced out periods, acne, hair and the oily skin. I had an ultra sound of my ovaries, but that came back clear.
I moved to Colorado in 2005. I noticed I had a red rash on my chest that would sometimes spread to my face or my stomach. My sleep started to be disturbed. I would have horrible insomnia and other days I was too tired to get out of bed. I had developed strange allergies to foods, heart palpitations and would have trouble breathing. Some days I felt like an elephant was standing on my chest. The hair on my head was falling out, but the hair on my face and body was getting thicker.
I saw my primary doctor, who actually took action. He ordered an echocardiogram and a 24 hour heart monitor. The tests found PVCs (pre-vascular contractions), but he thought this was due to stress. He thought it would be best for me to see an endocrinologist for the hormonal problems I was having. The endo did a hormone panel and confirmed the PCOS diagnosis. My blood test showed high levels of testosterone. He put me on Spironolactone 100mg/day to keep the levels down. This helped with the oily skin, acne and slowed down the balding. My period also returned.
A few weeks later my feet swelled up so bad the blood vessels in my toes broke. They were really red and painful. My doctor thought maybe I had some kind of infection and recommended anti-biotics. The swelling went down about 10 - 12 days later. After that I noticed that my feet were really sensitive to temperature. They would turn a deep red in the shower and purple/blue when they were cold. I pointed this out to the endo who thought maybe I had Raynaud's Phenomenon. He referred me to a rheumatologist to confirm. The rheumatologist checked my feet, hands and also did additional blood work. He agreed that I had Primary Raynaud's. All of this occurred around Feb/March 2006.
In June 2006 I moved to Dallas TX. After the move I noticed I could see my veins in my hands, feet, chest, stomach and legs. My periods went from being normal to every 2 weeks. It felt like the "PMS" was much worse. One day in the shower, I think this was in August 2006; my hair started falling out again. I had pulled out handfuls of hair and started sobbing. I couldn't stop crying. I felt like I didn’t have any control over my emotions. A few weeks later started feeling really sick to my stomach and noticed my arms and legs were really tired.
I went to an endo here in Dallas, explained the PCOS and Raynaud's diagnoses and told him what was going on. He ordered blood test. The results were different this time; he found my Cortisol levels here high. Normal 200 - 380. Mine was 455. He ordered the 24 hour urine test and called me back when the results came in. Normal 0 - 50. Mine 380. My stress levels had reached an all time high. I was having panic attacks daily at work and was depressed. I established a new primary doctor here in Dallas. She took me off work the last week of Sept. She recommended Wellbutrin. The first two days were fantastic. I felt like my old self again, but after the second day, the pills had a speed effect on me. It made me more anxious, I was sweating and red faced and the insomnia came back. I stopped that and then tried Cymbalta. Bad reaction. I felt really scary, detached and really scared I was couldn't control myself. Stopped that. Last week she gave me samples of Lexapro so I am going to be giving that a shot this week.
I did the CRH stim test last week and was suppose to get the results back next week. I got a call from the endo's office and they moved my appointment to tomorrow. I am guessing they found something. I am still off work at this time and am trying my best to stay calm and relaxed. An MRI was done and found a 3x5x5 mm micro adenoma on my pituitary gland. I am hoping to get more answers at my appointment tomorrow. My boyfriend, family, work and friends have been so supportive. If it wasn't for their support and prayers I would be much worse off. My symptoms seem to be mostly psychological- depression, anxiety and insomnia. Sometimes I feel nauseous, my arms, legs and ribs hurt, but these symptoms seem to come and go. Lately I am constantly thirsty and have noticed a major outbreak of freckles that I've never had. My boyfriend counted 22 new freckles on my back the other day. I haven't had a problem with my weight, (although I do carry extra fat around my stomach), but I don't have the "moon face" or "buffalo hump".
Unhappy to report that we have not made much progress since I first wrote my bio. The CRH stim test pointed to an ectopic source, but then I supressed on the dex test. A chest & abdomen CT was done which found a 3mm non-calcified lung nodule. We moved towards having the IPSS test scheduled to figure out where my ACTH was coming from (pit tumor and lung nodule).
Prior to the test I was sent to a local Cushing's specialist who canceled the IPSS test after seeing me because I lacked the typical cushingnoid features. My DHEA and cortisol were high when I tested with him in Jan, but my ACTH was normal. Two salivary cortisol tests were done, but they were within normal range (I was feeling good that day so I think I was low). We did a 24 UFC which came back at 19 and even if I was having a low day, I don't think the test was done properly since I was taking Xanax in large doses, they didn't use the boric acid when shipping and I think it was mis-handled. After the low test I was dismissed as possible psuedo-cushing's & of course PCOS and it was recommended that I have aggressive therapy to treat my "panic disorder".
I've been seeing a neuropsychiatrist who thinks that this specialist is very wrong and recommends I keep fighting the good fight. My endocrinologist said he'd see me in three months. I had a horrible 5 day headache a few weeks ago and for the last week have been feeling sick to my stomach. I'm starving all the time, my feet are freezing and every joint in my body is swollen & sore. I called my endo and begged to let me do another UFC. Guess what? Came back at 400 with a normal range of 0-50. I have a follow up tomorrow. If he gets serious then I plan to work with him, but if not, I'm packing up to LA to see Dr. F. Also, my period has gone from every two weeks to 12 days and I'm bleeding 8 days with a 4 day break. Not good times.
