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Possible Mircoandenoma muscle wasting
Neuroendocrine Tumors (NETs) | Last Active: Apr 18, 2022 | Replies (20)Comment receiving replies
Hello @phoebeghostwriter
I'm so glad that you joined Connect. Finding the correct diagnosis is really important but can be difficult to find. So I appreciate your efforts as you keep searching.
As there is some possibility that you may have a neuroendocrine tumor (NET), I would encourage you to see a doctor who specialized in NETs. Here is a listing of such specialists. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If you are able to be seen at Mayo Clinic there are some good NET specialists there. As I have had three surgeries for NETs, I understand how important it is to follow up and find a good doctor.
Are you aware if a Seratonin blood level test has been done? Some of your symptoms, such as flushing, night sweats can be symptomatic of NETs.
A good endocrinologist can also detect hypoparathyroidism which can also cause muscle weakness, joint pain, etc. Please note that the parathyroid is a different gland than the thyroid. Here is a list of symptoms of this disorder, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. Read through them and see if they fit your problems.
I hope that you are able to get a second opinion sometime soon. Are you pursuing a second opinion at Mayo Clinic now?
Replies to "Hello @phoebeghostwriter I'm so glad that you joined Connect. Finding the correct diagnosis is really important..."
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Thank you so much for taking the time to provide me this information and courage. They performed a 5 HIPPA in November and it was above range but I was told not to worry because it was only a little elevated despite my symptoms. However the oncologist didn’t do the serotonin test. I will ask for one next week. I’m trying to get a second opinion as my symptoms have worsened but I understand it may take 3 months to be seen as they get 25,000 requests a week 🙁 a lot of suffering right now in the world - but I hope I can be seen sooner.