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Pheochromocytoma: Anyone being treated for an adrenal mass?
Diabetes & Endocrine System | Last Active: Sep 27 2:28pm | Replies (93)Comment receiving replies
Hello @larak and welcome to Mayo Connect. It sounds as if you have a number of problems and do not feel that you are getting answers. Is that correct?
You posted that, "I quite obviously have had neuroendocrine tumors already." Have you had surgery for the neuroendocrine tumors? We have a NETs Support Group, that you might find helpful for members with NETs. Here is the link to that group,
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
If you feel that are not getting answers, I encourage you to get a second opinion. Perhaps a consultation from a major medical center in your area or you might consider a consultation with Mayo Clinic. Here is a link that will direct you to a Mayo appointment, http://mayocl.in/1mtmR63.
@larak, What are your most difficult symptoms currently?
Replies to "Hello @larak and welcome to Mayo Connect. It sounds as if you have a number of..."
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I did have surgery on 3/24/21. 2 parathyroid adenomas were removed. Numbers were good for a bit. However, now PTH & Ca are creeping up, again.
No one looked for an overall reason for the adenomas. I had those other weird labs I mentioned. And it really seems like that mountain of labs, having had tumors already, and having osteopenia isn't enough for scans. I don't get it.
I am in the greater Boston area and have gone round and round with Mass General Brigham. Everyone looks at their one area and says there's not enough there: genetics, pituitary, adrenal. No one is looking at the whole picture.