Possible NET with No Evidence of Tumor: Mediastinal Mass
Hello All! I have had flushing for several years with alcohol, stress, emotions, heat/exercise, and some other foods. I also have cyclical diarrhea. In the last year, I have also had nighttime awakenings with diarrhea, tachycardia, GERD, and feelings of anxiety/adrenaline rush. Last Fall I added palpitations, regular tachycardia, more flushing, dizziness, headaches, and EXTREME fatigue to my list. I am 43, mother of three youngins, have been super healthy prior, and was on no medications. I had a workup that included Urine 5-HIAA which came back high. I then had two more elevated urine 5-HIAA tests, three elevated Chromogranins (not on PPI's), and completely negative CT/MRI/Gallium PET/EGD/COlonoscopy. I have some lung nodules, and thyroid/parathyroid nodule, and an elevated PTH with normal calcium. No one seems to know what to do with me, My Endocrinologist at the U of MN is just suggesting 6 month follow-up. I have a referral to MAYO but am not sure how I am going to get there, find child care, etc. Wanted to say hello and see if any of you have similar experiences. I was able to speak with a NET specialist on the phone and he recommended a serum 5-hiaa, pancreastatin, and neurokinin A at a minimum. Hoping I can get a doc to order those. Really hoping to make it to Mayo in November.