what next???

[Cole31]

I was diagnosed with a pituitary tumor in August 2009. SInce then I have had an MRI, and was referred to an endo. I have been going to Endo for over three months and my prolactin levels have only decreased a small amount. My level has been 78.9 until this month and it went down to 65. My breast have been unbearably sore and my headaches are serious. The Endo does not feel the headaches are caused by the tumor because its only 4x2x4. I am so frustrated and tired of paying a copay for something that isnt helping me. Does anyone have any suggestions??? I dont know what to do

[rumpled]

Just make sure you keep on a monitoring program with the blood work.

[newarrior]

How long on cabber and how much per week ?

[PABM]

Correction, I did not mean to write 20 times the normal but it was over 100ng/ml, normal being <20ng/ml

[PABM]

HI,
I was also diagnosed years ago with a pituitary tumor and prolactinemia....same as you. My prolactin levels were 20 times the normal. I was secreting liquid from my breasts it was so high. I was also getting MRI every 6 months and endo as well. Endocinologist started me on a medication for prolactinemia called Cabergoline (brand names Dostinex and Cabaser), DEFINITION:an ergot derivative, is a potent dopamine receptor agonist on D2 receptors.[1] It also acts on dopamine receptors in lactophilic hypothalamus cells to suppress prolactin production in the pituitary gland.

Well it worked great! I no longer have problems and its been about 6 years and no more MRI's and I get lab work done once a year and all normal. Are you on any medication for it?

[rumpled]

First, headaches *are* caused by the tumors - size is not the factor but that the hormones are off as well as there is not a lot of space up there as the pit is sitting in a small bony outcroping - anything growing up there creates an issues.

My suggestion is to find another endo - preferably a neuro-endo as they treat the pituitary. They may take you more seriously and help you get more treatment - so you can get the pain gone. It may take a couple of docs to find the right one.