I was officially diagnosed with multiple endocrine neoplasia 6 months ago

Posted by jamimen1 @jamimen1, Mar 26, 2016

Hi! I am a newbie here. I am 45 years old and I was officially diagnosed with multiple endocrine neoplasia 6 months ago. I had an adrenal tumor and adrenal gland removed 3 months ago, in addition to 3-1/2 parathyroid glands removed 7 weeks ago. Many of my lab values are elevated including my PTH which was in normal range at 12 six weeks ago and is now borderline high again. My endocrinologist has recommend I take the trip to Rochester and have a complete evaluation. I am looking for any insight anyone may have on their experience.

Hi @jamimen1. Welcome to Connect! I’m so sorry to hear what you are going through. Mayo Clinic is a great place to go when you want answers that no one else seems to be able to give you. Here is some information about coming to Mayo Clinic, in case you want to prep for a visit: http://www.mayoclinic.org/patient-visitor-guide. I’m also tagging @haetherann who posted about the same condition awhile ago and may be able to pop back in to provide some support. Also, i’m tagging some of the members from our Visiting Mayo Clinic group who may be able to provide some feedback on their experience: @iggeez1416, @rosemarya, @cynaburst, @PatMattos, @karri and @hlthyskr. Hope you find some support here!

Though I have not been to Mayo for treatment for an endoctrine condition, generally you can expect to receive a schedule in the mail ahead of your appointment setting forth all of the tests they want you to have in advance of meeting with the doctor you are assigned to. Once you arrive at Mayo, your tests will all be scheduled in rapid succession, probably the day before your scheduled appointment so the doc will have all results in advance of your consultation.

I have not been to Mayo for an endocrine consult either, but I echo what cynaburst said about the scheduling. I would add that there are people who seem to appear out of nowhere (like a wizard from Hogwarts) to ask you if you need help finding your next appointment. In between appointments, you should be able to enjoy music in the atrium. It’s quite nice.
At Mayo, they have state of the art equipment and are very patient centered. If you have questions, they are answered in a clear, concise manner in my experience. I have talked to my doctor while looking at my test results with him. You will be in good hands with Mayo.
There are many hotels and they often have Mayo rates and shuttles to the clinic. Some are a short walk to the tunnel system directly to the clinic.
Good luck!!

I echo all the previous posts! I encourage you to follow your doctor’s advice and make the trip to Mayo for your evaluation. The professionalism, efficiency, and concern for each patient at Mayo Clinic is beyond words to describe. Rosemary

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