And It's About Time There Was Some Support For Cushing's!
Please see the letter I wrote to a doctor I saw in February. It is a good summary of my story.
My symptoms started in the fall of 2002. I have had a number of diagnoses - panic disorder, major depression, bipolar disorder, hypothalamic amenorrhea, female hypogonadism, and pituitary adenoma. My abnormal hormones are low FSH, LH, estradiol, insulin, and free T4. Imaging found a 2 mm. adenoma on my right pituitary and an 11 mm. pineal cyst.
So far, I have found no help.
Dear Dr. G.
Please understand that I am not writing to you now to complain or blame you for the rest of my experience at C. In fact, right after meeting with you I felt very encouraged. I am simply coming back to you, as you have been the only doctor so far to listen to me and my mother, and to seemingly intuit that something is truly wrong with me. And, I am desperate for help, direction, and advice.
My experience with Dr. H. was disappointing. Her responses to my complaints were dismissive and condescending. She told me I am a pretty girl, and should be going out on dates and interacting with people. In regards to my skin issues, she said that I am lucky that my acne and scars blend well with my pinkish complexion. Her response to my new stretch marks was that they were due to weight fluctuations, but she had no explanation for my weight fluctuations. Instead of listening to and contemplating the rest of my symptoms, she seemed to assume that my distress was coming from the changing of my appearance. This is absolutely untrue.
First, let me explain that I do not report these symptoms, because I am concerned about my change in appearance, for appearance’s sake. I am concerned about my health and future. When you met me, I was dressed for work, and trying to look especially nice for my mom to limit her worrying. Normally, I am a t-shirt and sweats type of girl. I have never been one to be very concerned about my appearance, and how others react to it. And, it would certainly never dictate my mood.
Though I have had many aesthetic changes related to whatever my condition might be (I think I know what it is), it is not the acne, facial hair growth, poor wound healing, dry skin, dry and thinning hair, loss of breasts, and body fat redistribution that are upsetting me. My goal in life is to be a writer, not a supermodel. My true concerns are the internal dysfunction that is at the root of these symptoms and what is means for my future health. Additionally, my personality has been changing dramatically over the past three years (along with the rest of me). I had always been a happy, energetic, sociable, driven, intelligent, kind, and creative individual. The changes I am experiencing are not a result of my changing appearance. They are additional symptoms of my condition.
I am feeling fatigued, yet sometimes very anxious and restless; cannot concentrate; struggling with my memory (especially vocabulary, and I graduated Magna Cum Laude in English Writing from Pitt with ease); having severe sleep disturbances; fearing social interaction; lacking coping and stress management skills; and, having rapid mood swings. As I write, I can hardly believe that, at one time, I spent at least one hour each day practicing meditation and yoga. No matter how hard I try, I can barely meditate for five minutes.
When I first stopped menstruating, I believed doctors who told me that sometimes it happens due to stress, life changes, medications, etc. And, that it would resolve itself in time. After two years passed with no periods, I hoped someone would take the time to further investigate why I am not functioning normally. When I went to see Dr. F. in endocrinology at J., he did investigate the potential causes. Months ago, at our first visit, he listed many things (including pituitary tumors) that could cause amenorrhea. Blood test after blood test and two ultrasounds eliminated every other possibility. Eventually, his last effort was to order a MRI to look for pituitary abnormalities. When he received the report to find that there indeed was a pituitary abnormality, he called it in an “incidental finding.” I wish I could understand how finding something that one is seeking can be considered an “incidental finding.”
That was his last insight. He did not order any further investigation as to the specifics of this abnormality. There was no advanced testing ordered, or advice on how to proceed.
Meanwhile, my symptoms have been getting worse all along. They worsen weekly, if not daily. My skin is so unbearably dry and flaky now that I cannot shower on a regular basis. There is neither a lotion available to relieve the itchiness, nor a material in existence that does not further irritate. My hair has begun coming out in clumps anytime, not just in the shower as it has been for the past several months. Since I saw you (about one month ago), I have gained about five pounds and stretch marks on my lower and middle back, thighs, and buttocks. I am constantly thirsty and urinate at least ten times per day, including at least two times in the middle of the night. I have started having headaches on the sides and back of my head and frequent ringing in my ears. I have dizzy spells several times per day to the point where I have to sit back down. I am also having joint and muscle pain, especially in my thighs, upper arms, and lower back. Parts of my body fall asleep after sitting for a few minutes. My hot flashes, night sweats, and constipation persist, but are easy for me to ignore compared to the rest of my issues. I have had no libido for over two years. I never had issues like this in relationships prior to all of this.
Again, writing this is making me reflect on the person I had been before. I was very judgmental of people who complained of such varied and random symptoms. I would think they were exaggerating, making excuses, or being lazy. However, I am not disgusted with myself, because I know I am doing everything I can to persevere despite all of this. I still manage to perform above average as a fundraiser at J., walk my dog every day, maintain my home, and visit with close friends and family. Though I fear losing the ability to perform these basic functions, I am grateful for everything I can do now.
Dr. G., what do you suggest I do at this point? I would like a battery of tests (saliva, urine, imaging, IPSS, etc.) for various endocrine disorders, especially related to the pituitary. But, I cannot seem to find an endocrinologist who deems this as necessary as I do. They have all at some point said, “I don’t know.” But, why don’t they try to find out? So far, most doctors I have seen (there have been a few) suggest the birth control pill. I certainly do not think taking a birth control pill will help resolve these issues. In fact, when I did try it against my better judgment, not only did it exacerbate my symptoms, but stripped me of the coping skills that keep me pushing through each day.
It was such a pleasure meeting you. And, I have heard great things about you from others (my reason for seeking your help in the first place). I hope that you can help me understand what is going on with me.
If you cannot offer any advice, I would appreciate acknowledgement that you have received this letter. My contact information is below. I am also sending this to you via email.
Thank you in advance.
Sincerely,
THANKS FOR READING MY STORY!
Blessings to all,
Katie
I re-read my bio and letter prior to writing this update. I cannot believe how long this has been going on. But, I am in a better place now and glad to share!
It was endo number six that finally decided to do some serious testing on me. Lo-and-behold, test after test (saliva, urine, blood) came back abnormal - high cortisol, elevated IGF-1 and growth hormone and some very abnormal responses to glucose and insulin loads (GH did not suppress after glucose load, cortisol response was blunted after insulin load). Despite mounting evidence that my previously-detected pituitary tumor was doing crazy things, I was still stuck. Endo number six would not send me to surgery. He wanted to keep testing and keep upping my thyroid hormone bit by bit - as if it was ever going to make a difference. I have no animosity toward him, though, as he got me the evidence I needed to take to a real pro.
So, finally, in December 2008, I took my huge binder of information and photo history across the country to Los Angeles. The doctor I saw listened to me, examined me, and reviewed all of my results. He confirmed that all of this information supported a cyclical Cushing's Disease (pituitary) and acromegaly diagnosis. He suggested I seek out a surgeon immediately. Whew!
As soon as I returned home, I sent my MRI CDs to the surgeon. His office got back to me the very next day - ready to schedule surgery. So, here I am today - exactly one week from pituitary surgery. Please send all the good vibes, prayers, hugs, hope, etc. you can in anticipation for my surgery. I am nothing but positive at this point. I am so grateful to the forever-friends I have made on these boards and MaryO for her amazing gift to all of us. My advice to you - do yourself a favor and join these boards if you suspect you have an endocrine disease. And, please feel free to reach out to me - I am glad to tell my story and more than willing to help others.
Love always,
Katie
