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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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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?

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Replies to "Hello @phoebeghostwriter I'm so glad that you joined Connect. Finding the correct diagnosis is really important..."

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.

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