And It's About Time There Was Some Support For Cushing's!
My first symptoms appeared when I was 5 or 6.
I went to and Endocrinologist and was diagnosed with precocious puberty. The doctor had suggested to my mom that the symptoms I was having could be from a pituitary tumor. Once all the labwork came back, he said the numbers weren't high enough to suggest anything like that, and told me to lose weight.
Up until the age of 6 I was a normal sized child, and I was extremely active in dance, soccer, basketball and tennis. My symptoms never went away, but things were tolerable.
When I was 15 things got really bad. I first thought I was coming down with the flu. After two months of doctors, I was finally diagnosed with Fibromyalgia. This didn't explain all of my symptoms, but I was happy to have a diagnosis.
During this time my weight slowing started going up again. I was having irregular menstrual cycles so I went to see a gynecologist. She mentioned PCOS and ran some tests. My ultrasound did show small cysts on my ovaries. I then sought a second opinion, and this doctor said "yes, you probably do have PCOS, but don't try getting pregnant, at your weight, you're are VERY high risk."
One, that's why I was there, to see why I was gaining so much weight, and secondly, I was 18, I had NO intention of becoming pregnant. I was researching my other symptoms like the bright stretch marks online when I came across Cushing's.
Around that time I also saw a Mystery Diagnosis episode on Cushing's Disease. I knew right then and there I had Cushing's. I went to 6 or 7 Endocrinologists, tested for over a year and a half, when I was finally diagnosed and cleared for surgery. My surgery is in 8 days (May 2008), and I CANNOT wait to get started with my life. I'm 19, and plan to go back to college when I'm well.
*I sent this to Dr. L, so just excuse the little first paragraph! thanks for reading this:)
I appreciate your time, and will try and make this as brief as possible. I am 18 years old, and due to my severe fatigue, hip pain and headaches, I am unable to attend college like I had planned. I am waiting to start until my health is improved. I am going to a 4 year college to get a Special Education teaching degree. My education is very important to me, and in order to move forward with my life, I need to feel good.
I was a healthy baby, and early on I fell down a flight of stairs while at a childcare center. The provider didn't notify my mother until she picked me up, and then I was taken to the Emergency Room. They conducted tests and sent me home. Shortly after my mother noticed seizure-like symptoms. I would just stare off and freeze, even with stimulation. The doctors didn't seem concerned, and this did go away after some time.
I was a normal sized child until I was about 5 years old. Almost overnight I started developing breasts, had body odor, and became overweight. I underwent testing, and was diagnosed with idiopathic Precocious Puberty. I had high LH levels, but not high enough to receive a monthly injection to slow it down. This is when I continued to gain weight, while still being involved in dance and soccer. I also started getting boils in the groin area, and severe stretch marks, even before I gained a lot of weight. I also had darkening of the skin under my armpits. In second grade I had a tonsillectomy due to chronic tonsillitis. I missed 53 days of 2nd grade due to this. I always seemed to get sick with every little cold or bug that went around.
During the time I started developing, I got severe anxiety, but doctors could never figure out what I was talking about. I couldn't explain how I felt, but I now know they were panic attacks. My weight continued to increase, and I was always in the 95th percentile for my age. I stayed very active, and my caloric intake was quite normal. I have no siblings, so I can't compare myself to anyone.
I got headaches throughout Elementary school, neck pain, sinus infections and bad allergies. I took Allegra and Nasacort AQ when needed. I only filled my Nasacort prescription twice. I note this because of the the steroid-induced Cushing's idea. Nothing significant happened while on the Nasacort, and when I stopped using it, I continued to use Allegra. The sinus infections continued, and I would get 1-2 per year, and would need antibiotics to treat this. In 8th grade I became sick with a sinus infection, and a ear infection. The ear infection lead to a ruptured ear drum. Several weeks after this, I developed Bronchitis and then Pneumonia, and exercise enduced Asthma
During the summer, I felt fine. I was on the varsity tennis team, and we had practice in the summer 5 days a week, 6 hours a day. During this time I was still unable to lose weight, and I actually gained. I tried Weight Watchers, and the Atkins diet, with no success. I started High School in the fall of 2003.
It was my Sophomore year, and I was busy with homework and friends. I started sleeping a lot on the weekends, and would take naps when I would get home from school. I also had anxiety again, something I hadn't had in years.
In October I went in to my PCP for a white spot on the back of my throat causing discomfort. The Doctor told me it was a canker sore, and to gargle with salt water. No strep test was done. I continued to have a sore throat off and on until January. January 4, 2004 I was shopping with my mom. I noticed I was getting severe hip pain, and feeling very fatigued. I had to come home and go to bed. I thought it was the flu, and took it easy for a few days. I went back to school, and could hardly make it through the day. I also felt a burst of energy at night, and this would cause me to stay awake from midnight until 4-5 am. I almost felt normal during that time, and that is when I would do homework. I went to doctors several times a week for a month, due to weight gain, headaches, back pain, and fatigue. I was sleeping 18 hours a day, and could no longer go to school. I was SO exhausted.
The doctors checked for Mono, Lupus, Lymes Disease, sexually transmitted diseases (Even though I wasn't sexually active, and stated that). They tested me for Strep and it was positive. I went on Zithromax, and this didn't help. After 10 days, they retested and I was still positive for Strep. Over the course of 2 months, I remained on antibiotics until it went away. They blamed my symptoms on untreated Strep, believing that when I went in that October, it was Strep then.
In February, I was diagnosed with Fibromyalgia. They gave me Celebrex and I took two tablets, and it made me so sick, I didn't take it again. I then developed a Peptic Ulcer and needed Protonix for two months. I was still too sick to go to school, and had a homebound teacher. I began to feel better around May, and by June I was feeling almost normal again. I felt great and was able to be a normal teenager again.
In October I started getting some symptoms back, I gained more weight after I had been maintaining all summer long, I also began sleeping a lot again. By November I was full blown again, and on homebound instruction. I then began 100mg of Ultram at night for the back and hip pain.
In January of 2005 I started 25mg of Amitriptyline for the severe headaches, and to help with the Fibromyalgia fatigue. This did absolutely nothing for the fatigue, which surprised the doctors. It did however help the migraines. When summer came along, I felt better but not as well as the previous summer. I started a natural supplement called Mangosteen in July, and noticed some improvement, and in a few weeks I had lost a lot of swelling in my face. I also lost about 14 pounds, but soon gained it back when I became sick again.
In early August I became very sick and had a fever. I had to go the the ER, and they thought I had Meningitis. I was slightly dehydrated and they did a spinal tap. It was negative. This cleared up in a few days. School started, and I was able to function just enough to go to school everyday, but it was extremely difficult. I also was taking 300mg of CoQ10. I was told that could help with energy by a doctor.
In March, I became sick with the same symptoms I had in August. My fatigue was so much worse, and I had a fever, and was dehydrated. I had to receive IV fluids in my doctors office. In June I went to a Gynecologist because I hadn't had a menstrual cycle in 6 months. The same thing happened during the same time the year before, but I had a menstrual cycle by the 6th month.
They suspected PCOS, but nothing was done until August. In August I was officially diagnosed, and started 500mg. of Metformin. In three days I lost 10 pounds, and in a week it was a total of 15. I soon gained all of it back. I tried increasing the Metformin, but it made me sick, and I would get a fever.
I watched an episode of Mystery Diagnosis, and Cushing's was on. I knew right then that is what I have, and no doctor will hear me out. They have done two UFCs, the first one came back high normal, and last weeks came back high. The ref. range is 4.0-50.0 and it came back at 60.6-, also my C-peptide is elevated, but my sed rate is normal. To do last weeks UFC I decreased my Amitriptyline and Ultram, after reading it can effect the results. I also had a cold at the time, and wasn't sure how this would effect the numbers.
I am on Endo #5, and am made to feel like I am doctor shopping, and that if I lose weight, my symptoms will go away. My current Endo ordered an MRI, and I requested a dynamic MRI, which the Radiologist ordered. After the findings, she still will not diagnose me, and doesn't think the tumor is related. Here is the report:
MRI of the Brain/Pituitary without and with contrast
History: 18-year-old with headaches and concern for Cushing's syndrome.
Comparison: None.
Technique: Coronal T1-weighted, axial diffusion-weighted, axial ADC map, T2-weighted and sagittal T1-weighted images of the brain were obtained with focus on the region of the sella. During intravenous administration of gadolinium, dynamic coronal T1-weighted images were obtained through the anterior lobe of the pituitary gland. Postgadolinium coronal and sagittal T1-weighted images were obtained through the region of the sella.
Findings: On the dynamic enhanced images of the pituitary, there is a 5 to 6 mm round focus decreased enhancement within the pituitary to the right of midline. This lesion is less distinct on the postcontrast images and is not visualized on the precontrast images. There is no restricted diffusion. Elsewhere, there is no mass lesion, midline shift or herniation. There is no abnormal extra-axial fluid collection. The gray-white differentiation is intact. No abnormal signal in the mastoid air cavities. Normal intravascular flow voids are identified. Artifact largely obscures the paranasal sinuses.
Impression: 5 to 6 mm round focus of decreased enhancement in the right aspect of the pituitary which is consistent with a pituitary microadenoma. Recommend correlation with endocrine lab function testing.
Nicole has two areas on MySpace: a bio at http://www.myspace.com/labellavitabrasil and an area for Cushies at http://groups.myspace.com/cushingssurvivors.
Nicole may be the subject of a future Live Interview in the Cushing's Help Voice Chat / Podcast series. More information as it becomes available. Archives will be available after the chat.
