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Pheochromocytoma-like symptoms with no sign of a tumour?
My 16 year old son has been suffering from debilitating symptoms for the past 5 years. It began with a very sudden onset of excruciating pain in his right upper quadrant (under rib cage), accompanied by headaches, nausea, sweating, extreme anxiety and panic attacks, terribly disrupted sleep, extreme fatigue, tachycardia, heart palpitations and chest pain, musculoskeletal pain, and weight loss. Imaging Investigations have been normal (brain, spine, abdomen MRIs), and he has undergone significant psychiatric therapy, and more than a dozen medications which have only made symptoms worse. He recently did 24hr catecholamines/metanephrines tests- the first came back 3-4x normal levels for epinephrine, norepinephrine, metanephrine, nor metanephrine. But subsequent tests were normal. It is looking unlikely to be a pheo/para. But I’m wondering what else could cause these symptoms. The endocrinologist felt the symptoms were catecholamine-involved, but wasn’t sure what that would be if not a tumour. My son’s quality of life is so poor and seems to be increasingly worse. He is unable to go to school or participate in almost any activity. Just getting to doctors appointments is a huge task and wipes him out for days. I am desperate for answers, or a direction. Our doctors seem to be stumped and have become a bit apathetic because they don’t know what to do. Willing to go anywhere to do anything- just not even sure where to look. Thank you.
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Since your providers don’t have a diagnosis or treatment plan would they be willing to make a referral to a teaching hospital that could provide access to a number of specialists to collaborate with?
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1 ReactionHi! Were they able to find out what was causing all of his symptoms? My brother is going through the same thing and all keeps coming back okay and the doctors are stumped.
Thank you!
there is an entire thread on this Mayo forum about this condition aka pseudo-pheo...for me, the game changer was getting on anti-anxiety drugs.
Paroxysmal hypertension
(Mann SJ, Solanki KV. Clarifying the Cause and Treatment of Paroxysmal Hypertension (Pseudopheochromocytoma). Curr Hypertens Rep. 2022 Sep;24(9):353-359. doi: 10.1007/s11906-022-01198-1. Epub 2022 Jun 6. PMID: 35666406)
Abstract
Paroxysmal hypertension always engenders a search for a catecholamine-secreting pheochromocytoma. Yet 98% of people with paroxysmal hypertension do not have this tumor. The cause and management of paroxysmal hypertension remain a mystery, and the subject of remarkably few papers. This review presents an approach to understanding and successfully treating this disorder. Patients experience symptomatic blood pressure surges likely linked to sympathetic nervous system stimulation. A specific personality profile associated with this disorder suggests a psychological basis, attributable to repressed emotion related to prior emotional trauma or a repressive (nonemotional) coping style. Based on this understanding, three forms of intervention, alone or in combination, appear successful: antihypertensive therapy with agents directed at the sympathetically mediated blood pressure elevation (eg, combined alpha- and beta-blockade or central alpha-agonists such as clonidine); psychopharmacologic interventions including anxiolytic and/or antidepressant agents; and psychological intervention, particularly reassurance and increased psychological awareness. An appropriately selected intervention can reduce or eliminate attacks in most patients.