Desperate for help.

[Guest Nat]

Hello all I haven't been approved yet, but I felt the need to post here as I am very desperate.

 

I am a 24-year-old who has been having health issues for 7 years. Here's a little bit about myself. I am 93 lbs, and cannot seem to gain weight. My symptoms are as follows:

 

Have to urinate every 5-10 minutes. Clear urine. ( mostly at night)

Night sweats

Breasts swell/Breast discharge, stimulated by shower or randomly happens

Hair growth facial, back, thighs, between chest. Have to have under arms twice a day.

Eye pain/see clear floating things

acne on face, chest, back. Has never been as bad a problem

Hair growth face/chest/stomach/nipples/arms/places I never had hair before

Hair shedding/strands fall out

Some difficulty gaining weight

Skin takes years to heal from bug bites/scratches/injury

Muscle weaknesss in arms and legs. is problem when doing household chores/brushing teeth etc.

Worsening bulging arm "veins" in arm and hands. Veins on chest.

 

I had a parathyroidectomy in May and improved, but most symptoms did not. it is interesting to note my mother ALSO had parathyroid disease. These are 4 small glands on the sides of your neck that control calcium levels, and we had tumors on them that had to be removed.

 

With that said, my surgeon said parathyroid disease doesn't cause the symptoms above. Please help...my doctors appointment is not for a month, and I have been beating around the bush and wasting the best years of my life. I want to break down and cry every day. I have the opposite problem of most cushie patients and cannot gain weight, cannot heal and many other odd symptoms. I "look" different than I ever did, which thick dark and coarse hair growing on the sides of the face, and various other horrifying symptoms.

 

My current labs show: high cortisol ( lab range cuts off at 20, mine was 22 ) and low red blood cell count, of which I've NEVER had before. These are just standard blood labs.

 

What can I do and where can I go? I feel like dying...and have no one to really advocate for me but my parents and boyfriend, but they can only make the doctors move so fast. I live in Texas, and wonder what to do. Thanks..

[twinkie]

Hello Nat and welcome! You are in a good place for support, information and understanding. Since you and your mother have both had parathyroid disease you both need to be checked for Multiple Endocrine Neoplasia or MEN. Insist on it.

 

Since you have breast discharge I would have your prolactin levels checked. A tumor that grows on the pituitary gland and causes unusual discharge or milk is called a prolactima.

 

Even though you have a hard time putting on weight it is still possible to have cushings. I've know a few skinny cushies. There could be other reasons for the weight loss that is canceling the cushings weight.

 

Have you ever been checked for PCOS or polycystic ovarian syndrome---or something like that. Your gyno can check you for that.

 

I'm sorry you are having such a rough go at such a young age. Please stick around here and read all you can and ask any questions you might have as you'll have to be your own advocate. Sadly, many endos do not understand this disease. Please do not let a doctor dismiss you by doing just one or two or even three tests. It takes tons and tons of tests to either prove or disprove this disease.

 

love,

melly

[sal]

I live east of Houston and I speak from experience when I tell you to head to California. The only doctors even remotely qualified to treat hormone disease i TX are at M.D. Anderson. I went to UTMB a few mos ago and couldn't believe, after all these years, how far into the dark ages they still are. Please, just make an appointment with Dr. Dan Kelly in Santa Monica or Dr. Theodore F.n in Beverly Hills.