Discussions By Condition: Endocrine conditions

Please help!

Posted In: Endocrine conditions 0 Replies
  • Posted By: sea789
  • May 27, 2013
  • 02:31 AM

I have been seen by multiple specialists for over two years now. Recently between my endocrinologist and GP we might be getting somewhere. 2 years ago I lost 20lbs very quickly, and at 21 yo I was still having abnormal periods. At that time I was anemic, had low estrogen levels and high testosterone. I also lost lot of hair. Since then, things have gotten worse. I was put on birth control to help control hormone levels and help with sudden acne, but over the past 6 months I am having scattered periods again and more pain and mood swings. I have been diagnosed with Insulin resistance (but not diabetes), mixed migraine syndrome, adult onset acne, hypercortisolism, exercise induced asthma. I also have severe joint pain (that always gets worse with damp weather), I do not heal as quickly as I used to, bruise easier, muscle weakness, ear discharge, increased mood swings and anxiety/irritability, sleep difficulties, neck pain, swollen abdomen, diarrhea, lower back pain, hair loss again, swelling and tingling in my feet, and random itching. Also, an oddball symptom is after drinking a small amountof alcohol my pain and abdomen swelling is always worse, plus I get a terrible, sudden jaw pain. Currently most of my hormone levels are in the normal range, my growth hormone is on the higher end of the spectrum, my ACTH is on the lower end, however my cortisol levels are very high. my thyroid levels were normal. We have found a pituitary adenoma/tumor and are considering surgery to remove it. Dexamethasone suppression tests did not suppress cortisol levels. This is to confirm a diagnosis of cushings disease however I don't fit the typical cushings case. A few other oddball things is I am not obese, i'm rather small, which contradicts cushings disease but my cortisol levels ARE consistently elevated. Exercise intolerance (but was an athlete for years) I forget things easier than I used to which is maddening. I am always tired. I'm a 21 yo and I feel like I'm in an 80yo's body. I am so desperate for answers and help, true help. I've had bloodwork done for RA, lupus, lyme disease and were all negative. I had mono at 16 yo and was retested for it and it is not active now. Rheumatologists have ruled out fibromyalgia as well. I have read a connections between lymphoma and mono, and lymphoma and metasticis to the pituitary gland but that is rare, also I am going to talk to my doc about multiple endocrine neoplasm, and lupus again. I also had a CT of my adrenals and that came back normal. I NEED HELP and any advice, anyone is willing to share. This is so maddening, and tiring, and my deepest desire is to just be a healthy 21 year old. None of this makes sense....I naturally am a healthy person meaning I eat right, (used to) exercise regularly, tried to keep stress levels low, etc. all the "right" things....and yet I am the unhealthiest person I know.

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