Has anyone been diagnosed with pseudopheochromocytoma

Posted by lisa11 @lisa11, Sep 7, 2024

Hi. I had man symptoms of pheochromocytoma (tumor on adrenal gland) including very high blood pressure, high heart rate, sweating, flushing, terrible anxiety (unprovoked) and others. Your body essentially goes in to fight or flight mode for no reason. I was given clonidine for these rare occasions. Otherwise BP was normal. The episodes became more severe and frequent and I had the testing done for this which came back negative. Apparently out of 300 people tested only 1 will actually have tumor. So the rest of us are referred to as Pseudo pheo. Just trying to reach out to others for support. Thanks for any feedback.

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@moritzm

Thank you all!!! I have a virtual meeting w/my endocrinologist in one week. My cardiologist has not pursued anything beyond conventional BP treatment and this is not doing the job, not even close. But my endocrinologist has already mentioned thinking about clonidine for me and I just got xanax from my PCP. I asked for it after reading these posts which are so helpful and appreciated. I am this morning on xanax for the first time and it helps...really helps. I now feel like there is hope for a solution, ie, something I can live with. I will post on my meeting and next steps. Thank you all again.

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Hello @moritzm,

As you have not posted in a while, I was wondering about your last appointment with your endocrinologist. Did your doctor provide you with any new medications or treatment plans? I look forward to hearing from you.

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