Hi Brenda,
Here are another couple of links for info.
http://0-www.cdc.gov.mill1.sjlibrary.org/n...osis_course.pdf
http://0-www.cdc.gov.mill1.sjlibrary.org/n...g_treatment.htm
My dad was checked for this when he had hypopituitary symptoms and lab values. He was negative. I think he was considered more at risk because both his mother and father were of Irish descent. One source indicates apparently one in eight people of Northern European ancestry have this mutation so it is not rare. I think most forms of it are autosomal recessive but apparently there are autosomal dominant versions as well.
Wishing you well,
den