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Pheochromocytoma: Anyone being treated for an adrenal mass?

Diabetes & Endocrine System | Last Active: Sep 27 2:28pm | Replies (93)
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@larak

If you don't mind sharing, how did you get your doctors to look for the mass in the first place? I have had 2 parathyroid adenomas removed (March 2021) and my PTH and Calcium are creeping up, again. I have had one increased and one normal lab for both 5-HIAA and metanephrines. Those were checked due to PACs/PVCs and intermittent HBP (160/110 at the highest). I have normal-ish BP now (130/90). I have had one elevated (3X upper limit of normal), and one not, gastrin. (Only on H2 blockers 20 mg at time of each test.) I have had 3 elevated chromogranin A labs. I have high titer (1:1280) speckled ANA that doesn't seem to be rheumatological. I quite obviously have had neuroendocrine tumors already. And I cannot get an endocrinologist in either Maine or Massachusetts who will even check for a multiple endocrine neoplasia.

The hyperparathyroidism is recurring and I cannot get anyone to look for an answer to stopping it.

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Replies to "If you don't mind sharing, how did you get your doctors to look for the mass..."
Teresa, Volunteer Mentor | @hopeful33250 | Jun 5, 2023

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?

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lisanewell68 | @lisanewell68 | Jun 5, 2023

Thank you for sharing.

This is very good, helpful information.
Im in Oklahoma, and have found that doctors are very uneasy about this condition. Im muttling through by taking a cortisol replacement which is bovine dried adrenal cortex. Waiting to see a Liver guy.

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