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Just another story...



First off, I find it necessary to say that I was never one for "blogging". I just didn't get it, and I surely didn't have the time for it. Over the past week I've been reading so many stories and looking at so many pictures from this site - I'm addicted.


I guess it all started when I was in high school (I'm 23 years old now). I've always had a "mysterious" set of symptoms - joint pain, muscle weakness, dry skin, acne, exhaustion, and weight gain. Weight gain... Every single August when I went clothes shopping for school I was a new size. No, unfortunately not a smaller size but a bigger one. Looking back at all of my medical records, ever since my early teens I complained of joint pain and muscle weakness as well as weight gain. My pediatrician actually told me to see a psychiatrist...and a nutritionist.


My next doctor told me to exercise and eat healthy. I was a high school student involved in extracurricular activities with a job! Oh, and I hardly ate at all. I would even skip lunches to get homework done. In a year, I gained 25 lbs. At one point, I gained 10 lbs in 2 months. I felt like I was an ever-expanding balloon. I developed stretch marks on my belly - the ones pregnant women get after having a baby. But I never had a child!


About my junior year in high school, my best friend joked that I had a bald spot on the back of my head. I stopped laughing and said, "....do I really?" She stopped laughing, too and said, "Well...kinda..yea." It's important to note that I always had very thick hair. I used to dance, and it was nearly impossible to put my hair up into a bun because it was so thick. Now, if I try to put my hair into a bun, I can't even see the bun! Not long after, the same friend pointed out a huge black hair growing from my chin and the darkening, growing hair on my arms.


I continued to gain weight throughout college. From my senior year in high school to my senior year in college, I gained about 40 lbs. This was puzzling to me because I rarely ate. I worked a few jobs throughout college, and the cafeteria was always closed by the time I got back to the dorm. My friends even commented on how much I didn't eat. I started seeing doctors again after a coworker felt concerned after seeing my extremely thinning hair under our bright office light. I got the full work-up, and everything was fine with exception of mild anemia. From then on, every doctor (3 total) told me my hair loss was from anemia. Of course they also threw in the exercise and eat healthy bit. One doctor did refer me to a dermatologist for the hair loss. She wanted to do a scalp biopsy, but I couldn't afford it as I no longer had health insurance. So I gave up. Until one day...


I was in a grocery store buying some produce when I caught a glimpse of the top of a head in the mirror that some produce sections have. I gasped when I actually realized it was my head. My hair was so thin, and it was the first time I actually felt concerned for myself. I just started a new job with great health insurance and decided I would call the dermatologist up to schedule that biopsy (over a year later!) She said she had never seen results like mine before. She even sent them to a colleague for his opinion. She said there was obviously something wrong, but couldn't pinpoint it. She thought it was hormonal so she gave me a script for Yaz and referred me to an endocrinologist.


I must say, my first appointment with the endo wasn't that promising. "So how long have you had a weight problem?" Ha! Thinking back, I should have said, "What weight problem, doctor?" Doctors are so blunt and insensitive sometimes. I just know most of them have to be from other planets! He mentioned some stuff about androgens and testosterone blockers...stay on Yaz...come back in 3 months...get this blood work done. "Would you like me to refer you to a nutritionist? Weight Watchers is a good program." No thanks... He did explain how to do the 24 hr urinary cortisol - just a test mainly to rule out Cushing's than to diagnose. About 2 weeks later, the 24 urinary cortisol was the only test to come back abnormal. He then had me do 2 late night saliva tests which both came back clearly abnormal. After receiving an undetectable ACTH results, he sent me for an abdominal CT of my andrenals without contrast which turned out to be negative. Now he is wondering if the initial results were false positives.


It all feels very hopeless. I've had the "buffalo hump" for years. I'm scared I will never lose weight or stop gaining. I wake up with unexplained hip pain leaving me with a limp. My shoulder has been hurting for 3 weeks, and I haven't done anything to it. When i try to stand from sitting down or from a squat, I feel like an 80 year old woman. I have acne that just never seems to go away - even on the birth control. I am just so over all of this plucking of black hairs from my cheek, chin, and neck that's turned into a daily ritual. I'm exhausted, and I miss the hair I used to have on my head.


Sadly, I've read so many stories just like mine. Inconclusive nonsense... I used to think I was the only one who always heard "You're fine. Exercise. Lose weight." Although it's unfortunate there are others that have to go through the same frustrations that I do, I'm really glad I found people like me. It makes me feel better in a way and makes it a lot easier to block out all of the times I've paid hundreds of dollars to doctors who say "You're fine."


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I know exactly how you feel!!! I have 3 doctors who believe I have Cushing's but won't fully diagnose me with it. My cortisol levels are elevated...other blood tests come back abnormal. I have rapid weight gain (I gained 30 lbs. in 7 weeks!!), night sweats, heat intolerance, Joint pain, aches, insomnia,slight buffalo hump, extreme fatigue, edema, absent periods (no periodfor 8 months now), headaches & the list goes on & on!! I've had an abdominal MRI & Brain MRI & both were negative but my doctors think there may be a pituitary tumor too small to be seen. They have tried to send me to Shands or Mayo but neither is accepting new patients so now they say to just see them if I need too??? What??? Why do doctors just give up???? I KNOW I have Cushing's! How much weight do I have to gain for them to realize? How much pain do I have to be in forthem to realize? I sure hope you find your diagnosis soon...Good Luck!

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honestly id love to chat with you sometime, check out my blog and paste me ur msn or yahoo address and i'll add you, im having success with my testing just now and i think i know what possibly is going on with you x

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