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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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@jeanern01

@janfam , Yes. My hormones all normal. But my ct scan and mri show a very lipid poor mass- they can’t determine if it’s just lipid poor adenoma or a “silent” pheochromocytoma based on the scan- we have been watching and scanning every 6 months for a while… size is stable so I am not sure yet what I will do. Best wishes for an uneventful surgery and speedy recovery! Lots of positive wishes coming your way! Keep us updated on how it goes!

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Replies to "@janfam , Yes. My hormones all normal. But my ct scan and mri show a very..."
janfam | @janfam | Apr 28, 2023

Thank you so much!

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Lara K | @larak | Jun 4, 2023

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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