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Possible Mircoandenoma muscle wasting
Neuroendocrine Tumors (NETs) | Last Active: Apr 18, 2022 | Replies (20)Comment receiving replies
Hi Phoebe, welcome. This sounds like an incredibly frustrating search for answers. Endocrinology issues are notorious for being difficult to diagnosis. @hopeful33250 and @astaingegerdm can emphathize as they too are familiar with searching with doctors for answers related to neuroendocrine tumors, Cushings and more.
First, to answer your question about Mayo Clinic. I encourage you to enquire about getting an appointment. Here is more information about how you can self-refer or have your endocrinologist apply for a second opinion: http://mayocl.in/1mtmR63
You may be eligible for a video consult to start.
If you can, please get the additional labs done and be sure to have copies of all your testing for further consultation. When is your next appointment with your endocrinologist? Perhaps we can help you create a list of questions to ask.
Replies to "Hi Phoebe, welcome. This sounds like an incredibly frustrating search for answers. Endocrinology issues are notorious..."
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Thank you, Colleen. My endocrinologist told me today that because my second set of labs didn’t show a rise in cortisol he just wants to “retest” my blood again in a month but that is only the ACTH and urine. I also asked about NET tumors and he said that is handled by an oncologist (which I know is not always the case) I think he is a good diabetes doctor but this is out of his area of expertise. My labs are erratic and I am not menopausal and it’s so frustrating that most doctors keep deferring me to GYN and GYN defers back to Endo. He said that my symptoms are atypical and now to reach out to Neuro (sigh) but not addressing the nocturnal hyperglycemia and wants me to test levels again (double sigh). But yes, I filled out the Mayo intake today and they referred me to internal medicine.