Jump to content
  • entry
    1
  • comment
    1
  • views
    245

I am miserable


kayc6751

77 views

So, here I am sitting here at almost midnight thinking about how sick and overall crappy I feel. I guess that sounds pretty stupid. i have been struggling now for almost a year, i have been in the hospital twice for vision loss and hypertension/tachycardia, i have missed a lot of work, and i feel like my life is just a friggin mess. My doctors don't know what to do with me and frankly I don't know what to do with me. I live in pittsburgh for crying out loud, I work for UPMC as a freakin RN... why can't they fix me???????

 

I recently went to my endo and she said that I should cut down my diet to 800 calories a day.... WHAT? Who the heck eats that little? Sweedish supermodels thats who... If I did that I really think I would die.

 

She keeps saying that 'You look cushingoid, but we dont have the high cortisols and ACTH' Hello!? I have a 6mm pit tumor and I am the textbook picture of cushings... Why can't I get any highs?! Everything but my MRI was normal... Well, except my stupid ACTH which is freakin low... stupid pituitary... stupid tumor.

 

I am supposed to get married in May, I am fat, cranky, and just plain unattractive right now. I can't believe joe has stayed with me this long... I have so many picture of me before all this, and I used to think I was so fat. I would give anything to go back to that right now, its killing me. Well, I guess I am done feeling sorry for myself for now.

1 Comment


Recommended Comments

hey !! I dont know if I will be able to help...But I was in your same situation. Last year I was 135 lbs.running 5 miles a day, looking great and feeling great!! Then all of the sudden I gained 50 lbs and literally LOOKED textbook cushingoid...I saw 3 different endos in Austin tx and all told me to cut my diet...excersize more...blah blah blah!! One of my doctors suggested cushings and that when they found my 10mm tumor on my pituitary. I thought then that this was the beginning of getting better...so I went to MD ANDERSON CANCER center in Houston tx and saw DR. Mcutcheon ( specializes in pituitary tumors and cushings syndrom paitients). He referred me to his endo taht works along side with him and they did a million tests and all of them KEPT COMMING BACK NORMAL!! Meanwhile, I was fat, had strae, round face, cranky, felt horrible, and I lactated out of my boobs!! They just kept telling me to do 24 hour urinalysis when I felt sick suggesting I might have cyclic cushings....they told me I had a "NONFUNCTIONAL TUMOR" I swear if I heard that from another doctor I was going to get realllly mad...I finally went with my gut and DEMANDED that I have the tumor removed. My endo looked at me like I wasa crazy and basically told me that it was a nonfunctional tumor and not to be disapointed if nothing happens. I had my surgery dec 10th 2008 and its been about 4 weeks. I got my pathology report back and it stated that they found ACTH and Prolactin in my tumor. MEANING I did have cushings and the tumor was causing all that mess.....but ironically it NEVER SHOWED UP IN BLOODWORK!!! Im writing this to you because I know how you feel. I was in the first year of my marriage when all this happend and felt like my husband didnt know the real me. But its been 4 weeks since the surgery and I am already weaning off the artificial cortisol they put you on and feeling better and ive lost oer 10 lbs(while not excersizing and eating bad). Dont give up!! Just make sure you have reallly really good doctors. Even if you have to travel ...DO IT! Most insurance companies have a travel and logding program that FULLY reimburses you for everything...

 

take care

 

KEEP BEING AGGRESSIVE...YOU CONTROL YOUR OWN FATE!

Link to comment
Guest
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...