And It's About Time There Was Some Support For Cushing's!
If anyone reads this and is undergoing the process, feeling frustrated, and desparate, remember, you are not alone. I reached out at the darkest point in my illness and I was helped. Reach out and you can find help and comfort also.
My health story, like most people's on this site, is long.
I have a history of up and down weight, but I was always in a normal range of 135-158. I can't say I was always very healthy. In fact, I was a sickly child. I had chronic bronchitis and asthma until I was about 25 when I discovered I had a dairy allergy. After I stopped consuming dairy products, I enjoyed 2 years of excellent health.
About 1995, I started to get acne, oily skin, and I suddenly gained 20 lbs. I also was diagnosed with pre-diabetes. I went on a lo-carb diet and lost 10 lbs, but it was a constant struggle to keep my weight down. When I got married in 1998, my weight took another sudden jump, to 192, which I couldn't lose, despite constant dieting. I also developed dark spots (melasma) on my forehead and my periods became erratic.
In 2000, I tore a muscle in my back lifing weights, and then a few months later, tore my hamstring in two places. My weight slowly kept creeping up until I was 202 lbs. I worked out and ate healthfully, but it didn't help. I also started experiencing fatigue. Out of frustration and desperation, I started taking diet pills (phentermine). They worked pretty well and I lost 35 lbs. But, as soon as I stopped taking the pills, the weight came back on. My OB-GYN diagnosed me with PCOS, without doing any labs, and put me on Yasmin. This cured my irregular periods, but nothing else.
In 2004, I became pregnant with my son, Andrew. I had a really tough pregnancy. I put on 30 lbs in the first 2 months of pregnancy. This was amazing because I wasn't eating anything. I was completely nauseous for 5 months, then I was diagnosed with gestational diabetes, and developed high blood pressure. At the end of my pregnancy I was 268 lbs. Most of this was water weight from EXTREME swelling. My OB-GYN induced labor early because of the high blood pressure and I ended up having a C-section. He is heathy, happy, and the love of my life.
After Andrew was born in April of 2005, I never really felt well after the delivery. I was always tired. However, I quickly lost 40 lbs and was 227 lbs, 2 months after Andrew was born. My diabetes and high blood pressure ceceded after I delivered.
Then, even though I was breastfeeding, walking everyday, and watching what I ate, I started gaining weight again. I had a very difficult time stopping breastfeeding. By Christmas I was at 237 again.
In January of 2006, my health went really haywire. I got a sinus infection and then never really recovered from the fatigue. In February, my diabetes and high blood pressure returned. I started getting severe joint pain. I then spontaneously started lactating. This really freaked me out. I hadn't breastfed for 9 months and I was convinced something was very serious. I went to my primary care doctor and she ran tests for a prolactinoma. The results were negative. She also sent me to a breast cancer center where I had a mamogram and an ultrasound and a physical exam. All came back negative for breast cancer.
The doctor at the breast cancer center referred me to an endocrinologist in Pasadena. I had been doing research on pituitary disorders, because of the lactation, and my symptoms matched Cushing's disease. I told the doctor I thought I had Cushing's disease and he was a complete ASS HOLE. He told me I didn't have any of the symptoms of Cushing's disease. Apparently, I wasn't fat enough. I grabbed the 3 inches of fat at the base of my neck (my buffalo hump) and said "well, what do you call this?" He said this was not unusual for overweight people. I told him I didn't have it before but he dismissed this. He told me I had the symptoms of Acromegaly and ordered an LFA-1 test, some thyroid tests, and a 24 hr UFC.
On my next visit, a month later, my 24 hr UFC came back at 150. The Pasadena endocrinologist told me that this was not abnormal and told me I needed psychological help and referred me to a psychiatrist. But, he ordered another 24 hr UFC to confirm his diagnosis.
Shortly after this, my condition rapidly deterioated. I started having cognitive impariment and numbness in my left side. My speech was slurred and I had trouble finishing my thoughts. This was horribly frightening to me. I have a PhD. in Chemistry and a J.D. I work as a patent lawyer and could not understand my work anymore.
A family friend, Dr. J, who is an endocrinologist, but specializes in diabetes, was also very worried and pulled some strings to get me into an MRI at 6 pm on a Friday night. He also called in the radiologist to read my MRI as it was being taken. The MRI showed a 5 mm tumor on the right side of my pituitary gland and a deviated fundibular stalk.
You would think that would be it, but NO. This was just the beginning.
At this point, I couldn't drive anymore because of blackouts and cognitive impairment and wasn't working. My primary care doctor referred me to a neurologist in Pasadena. Dr. G. He is malpractice waiting to happen. He gave me a neurological exam, which I failed, looked at my MRI, and said he couldn't see anything. He then pronounced that there was nothing wrong with me, except that I was depressed. He smuggly said he had seen this a million times before and wrote me a script for Wellbutrin, for my depression. My husband was livid. Me, not so much. He was such a loser and I had been treated so badly before that I was beyond caring.
The next doctor was a neurosurgeon at USC. Dr. W. He was a really nice man, who looked at my MRI, reviewed my prior labs, examined me, and told me I likely had Cushing's disease. I was so relieved and full of hope that I would finally be cured. I was getting sicker by the day and felt like my time was running out. Dr. W referred me to Dr. S, an endocrinologist at USC to confirm the diagnosis. Dr. W called him directly and left him a message to fit me in ASAP.
I went to Dr. S in the next couple of weeks, and frankly, he was strange. He asked me way too many personal questions, which I felt were unrelated to my diagnosis. He ordered an afternoon ACTH, which was positive for Cushing's, 10 times the normal range. He also ordered another 24 Hr UFC, this also came out positive, 115. Finally, I thought this would be it!! I could now be cured!!
But, NOOO!! In the interim, Dr. S had gone out of the country to a seminar. His assistant said I needed to do another test and he would order it when he returned. I called in 2 weeks when he returned, but no response, I kept calling every other day for a week and he did not respond. I then called Dr. W and told him that Dr. S was unresponsive and asked him to recommend another endocrinologist. Dr. S then called me and said he understood that I had been frustrated and that there was a mix up with his assistant. He said he needed to do a 24-hr CRH suppression test because I was "borderline". He said his assistant would order the CRH, but that it would take two weeks to arrive. I waited two weeks and then began calling again. No one returned my call for a week. Apparently, they had not ordered the CRH, but now it had been ordered.
By this time it was July, and I had been completely debilitated and out of work for 3 months. I was desperate. Somewhere, I found the name of Sharmyn McGraw, who runs a Cushing's support group at UCLA. I sent her an email and she immediately called me back. She was my guardian angel in my darkest hour. She connected me with Dr. Pejman Cohan, an endocrinologist who specializes in Cushings. I got into see Dr. Cohan within a couple of weeks and he completed my testing within 2 weeks. He referred me to Daniel Kelly who removed my pituary tumor on August 25, 2006.
I would like to point out that I NEVER had a serum cortisol, ACTH, or 24 hr UFC, test that was not at least 3 times the high normal range. I also had a tumor that was clearly visible on an MRI, early in the process. I am amazed that my diagnosis still took 4 months, after the tumor was found, and I had several positive lab results. I am also amazed that I was confronted with such severe incompetence and lack of professionalism in my doctors. I have great insurance, I am very well educated, and financially well off. To boot, both my husband and I are lawyers. I do not know how this diagnosis ended up being such a debaucle. If it were not for Dr. J, who got the MRI early on, and Sharmyn, who hooked me up with Dr. Cohan, I could be dead, or permanantly disabled.
I am left with a severe distrust of doctors and recommend to anyone facing a serious illness to take matters into your own hands and find another doctor when your doctor does not perform.
I am now 1 year +. post surgery. I am trying to get off prednisone, but I am having horrible withdrawal symptoms. I'm back to the endocrinologist again to see what is up. I find, 1 year post surgery, that while I am grateful to be alive, and more healthy than not, the imperfections of my daily life, which were put aside while I was sick, have now magnified. Somehow, being confronted with the possibility of death polarized my feelings. What I loved before, I love now more than ever. The problem people in my life have become unbearable. I hope this will work out in time.