After lurking, I've decided it's time to introduce myself. I'm so glad there's someone that understands! My name is CJ, I'm 34 years old and I'm currently in the preliminary stages of diagnosis with an appointment with the endocrinologist on 22 Sep. I don't know how much longer I can feel like I do before I REALLY lose my mind. So... let me tell you all what I have so far:
CT of the adrenal glands: 1.8 cm left adrenal mass which the radiologist at a military clinic calls an adenoma or fatty mass but left the keen eyed doctor with a different story. He said, "This is the source!" Had a severe allergic reaction to the IVP dye so I will never have that done again!
MRI of pituitary: No enlargement or mass. Gland itself is homogeneous though slightly asymmetrical. Normal.
Blood: Fasting glucose 115 - lab identified as high
BUN 6 - lab identified as low
Cholesterol - 209 - lab identified as borderline high
Chol/HDL - 4.9 - lab identified as borderline high ratio
LDL - 149 - lab identified as borderline high
CORT AM - 0.456 ug/dL- identified by lab as low (This was drawn after the 8mg dexamethasone. Doctor says this is acutally high as 0.456 pg would be considered high.)
Urine: 4,300 - volume in 24H
Cortisol Free - 0.552
Cortisol FR 24H - 23.7 - Identified as low by the lab. Lab values 36-137 = normal
Weight gain - 25lbs in 3 months (14 in the last 2 weeks)
Protruding belly - I had a tummy tuck in March of 2010 and now I feel even more depressed as I see the stomach I worked so hard to flatten coming back only painfully so.
My arms and legs are thinner than they used to be (probably because I've lost muscle tone)
Constant swelling from head to toe
Striae on the thighs, outer abdomen and breasts (new ones as they are purplish-pink in color)
Frequent urination (hmm.... goes hand in hand with drinking so much)
Lost desire in sex
Toxic smelling urine
Bug bites that fester for weeks before going away
ACNE - never had this much before and they linger
flank pain (on the left)
bald spot on the top of my head
fatigue but I can't sleep
irritability - can change from so so to cranky in 2.5 seconds (I'm normally hyper and happy-go-lucky)
forgetfullness... I'll be in the middle of a sentence and forget what I was going to say in most conversations. It's embarassing!
Can't exercise at all!!!! I've got to run, do situps and pushups and last time I tried to do a pushup, I fell flat to the floor. I have no muscle tone at all where I was very active before. The thought of trying to exercise is nauseating because I get embarassed.
Okay... now I've put all that out there, let me apologize for being so long-winded. I feel energized that there's someone willing to "listen" to me explain who I am right now. With everything that I've shown, my PCM says I have Cushing's Syndrome caused by the adrenal mass. There are a few more lab results pending. I'm off to the endocrinologist on the 22d unless they can get me in sooner. My PCM is a brilliant man! He immediately saw the difference in me between a non-related visit 3 months prior and the fact that I was so exhausted I couldn't keep my eyes open and he also noticed the physical changes.
I can't wait until I'm on the road to recovery. I just hope when I go to the endo that he has some experience and doesn't try to write me off! Something that may be related to this all is that I gave birth in 1998 at 25 weeks gestation to a baby girl weighing less than 1 lb. During the middle of this pregnancy is when some of the physical changes happened. (My daughter is now 13 years old and is perfectly healthy!)
Please arm me with questions I should ask from the get go. I don't want to play silly games with the doctor (not saying that he would) but I've read about some people who get "played" by their doctors. I'm not playing with my life and I won't let anyone else either.
Thanks for letting me into this wonderful group of people. You all seem so caring and it definitely helps to know that you're not alone even when you're told you're SUPER RARE!