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phoebeghostwriter (@phoebeghostwriter)

Possible Mircoandenoma muscle wasting

Neuroendocrine Tumors (NETs) | Last Active: Apr 18 6:28pm | Replies (20)

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@astaingegerdm

Hi Phoebe! I think you are moving in the right direction, trying to get an appointment at Mayo.
My daughter had Cushing’s- from a pituitary microadenoma.
Testing for Cushing’s is not always straightforward. Cortisol is the hormone excreted by the tiny adenoma. First of all, the levels change throughout the day. Also, levels can vary day to day or week to week. That’s why they may repeat the test a few times.
You certainly have symptoms that fit a Cushing’s diagnosis. Muscle wasting is one of them- my daughter had severe wasting, but after removal of the adenoma she got physical therapy to get back to normal.
Let’s hope you get an appointment soon at Mayo. What part of the country do you live in?
Stay strong! You will get help.

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Replies to "Hi Phoebe! I think you are moving in the right direction, trying to get an appointment..."

Thank you so much! I feel so frustrated here in Clearwater. My doctors down here don’t know what to do with me and keep referring me to another specialist (talk to neuro or rheumatoid or back to endo) My hormone levels are all over the place insulin, DHEA and testosterone I spoke with a intake rep today and they said my request will go to internal medicine first not endocrinology because I’m experiencing back pain and muscle wasting. They said it will probably be 3 months. I hope not but I plan to go to go a New England pituitary center next week because I don’t know if I can wait 3 months. I’m so happy to hear your daughter is doing well now. How was recovery and did she have surgery or medication first? Thank you!

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