Possible NET with No Evidence of Tumor

Posted by megansims @megansims, Sun, Aug 4 10:56pm

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.

Hello @megansims

I can certainly understand your concern about your symptoms and also about your intermittent 5-HIAA levels. Have your serotonin levels been checked?
I have had three surgeries for NETs (carcinoids) of the upper digestive tract. In the evaluations you mentioned, you did not state that you have had an upper endoscopy. Has this been done, or just the colonoscopy?

Has anyone suggested genetic testing for MEN1? Here is a link to some information about it, https://www.mayoclinic.org/medical-professionals/endocrinology/news/recurrent-primary-hyperparathyroidism-in-a-patient-with-multiple-endocrine-neoplasia-type-1-a-case-from-the-endocrine-teaching-clinics/mcc-20439158.

Have the lung nodules been determined to be benign? If so, how was that diagnosis made?

Will you post again? I look forward to hearing from you.

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If you are able to get an appointment with Mayo, I would be interested in knowing how that goes.

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@hopeful33250

If you are able to get an appointment with Mayo, I would be interested in knowing how that goes.

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@hopeful33250 Thank you! We are able to get an appointment in October or November. We are just trying to sort out child care. Do you know if Mayo has any options for patients coming in from out of town? Thank you for your post! My Primary wants me to have a bronchoscopy and also see Mayo for possible parathyroid/MEN testing. He does not want me to have the bronchoscopy locally though in case of a Carcinoid Crisis if the little guy is hiding in there. The EGD was normal. That is where things are at right now. The U of MN has become a totally dead end. Need to get to Mayo!

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Hello @megansims, I am so pleased that you will be able to visit Mayo in the near future. I'm looking forward to hearing about your experience as most people are very happy with the care and the attention they receive from Mayo doctors and staff. You asked about options for patients coming from out of town. Here is a link to Mayo's concierge services, specifically designed to help out of town patients find lodging, etc.

https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

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