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Webinar Series – Episode 28

We Can't Find the Pheo: No Tumor, Yet Symptoms

Special thanks to Lantheus Progenics for making this webinar series possible.

The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in depth knowledge of your medical history and current situation.

View slides from this presentation here.

Questions and timing are below.

Q 1 at 33:51 Many people I know that had a highly secretive pheo for many years before it was found and removed, including myself) developed POTS, Small fiber Neuropathy, MCAS, and other Dysautonomias, after removal A PPGL-versed doctor has told me that it is entirely possible and that they have seen this in their cohort of pheo patients – a subset just never get fully better. Would you comment on this? (For example, many people with Long Haul illness from Covid also developed some of these such as pots, SFN, and other dysautonomias. While POTS was not very known before Covid, my pots diagnosis came way before Covid. Many doctors did not believe in it. Now, many doctors seem to know about it and believe it whereas before it was “all in our heads.” Is it possible that the same could be happening for post pheo patients who don’t have metastasis and or metastasis AND damage from the primary tumor?

Q 2 at 35:03 What effect can prolonged adrenaline exposure have on the body? For example nerve pain or generalized pain that continue after surgery?

Q 3 at 37:11 Is overwhelming fatigue normal 11 month post surgery left sided Adrenalectomy?

Q 4 at 39:00 Is there any one test that is superior to all the other tests when it comes to detecting an otherwise undetectable pheochromocytoma that is causing symptoms?

Q 5 at 40:32 If it’s possible to have symptoms after pheo para removal, would it not be possible to have symptoms prior to finding the original tumor?

Q 6 at 42:56 Have you had any success treating symptoms of para (when not yet located on scans, but labs indicate consistently) with sandostation?

Q 7 at 45:38 What would you say in your clinical experience has ben the leading cause of symptoms after the removal of a pheo, especially if biochemical testing is normal?

Q 8 at 47:28 What hormones would you check if somebody was complaining of fatigue post-pheo removal?

Q 9 at 49:11 Would adrenalectomy or adrenal insufficiency alter the testing you would do for pheochromocytoma?

Q 10 at 51:05 Is adrenal medullary hyperplasia ever considered as a diagnosis?