There’s nothing simple about plasma metanephrines collections. Each time I walk into the lab, I am often met with confusion. Experienced lab technicians that haven’t seen this before, and don’t know the protocol to follow. It’s stressful, it’s unnecessary, and as an advocate for 10 years lived experience fighting this disease – I’m here to help.
For the patient: please go to an experienced centre, preferably a large hospital. Please bring with you the following printed protocols including this blog
Take a look previous to your appt which labs have been ordered. Some may have special instructions such as fasting, standing, lying down, etc.
endocrine society protocol
For the lab: most patients wait an average of 4-5 years to get a rare diagnosis, please consider this with care when following this protocol. Thank you for the work you do and taking the time.
For diagnosing physicians:
Consider the high likelihood of recurrence when a patient is highly symptomatic post op.
In the case of normal plasma metanephrines but the patient is still symptomatic:
REPEAT REPEAT REPEAT
If biochemical levels are not 4x elevated, watch for subtle trends in elevation. Even small increases are suggestive for recurrence with history of pheo para dx. Chromogranin A and dopamine (3MT) must be included in each follow up
High clinical suspicion would include a patient with history of NET tumor, or is 3 months + post removal and is still symptomatic. For these patients it is recommended to move onto imaging
Combined scans of structural and functional imaging are recommended for patients with previous history who are symptomatic as recurrence is highly likely!
Note about the author: Miranda is a 31 year old awareness advocate currently living with metastatic pheochromocytoma. First diagnosed at 19 years old with a ‘1 in a million tumor’ much to her surprise, the episodic (attacks) didn’t resolve. Miranda was a high risk patient that was dismissed due to ‘normal’ biochemical levels. Her continued symptoms attributed to anxiety.
On October 10th 2014 (four years later) Miranda was diagnosed with recurrent pheochromocytoma. This led to the discovery of over 60 tumours and a terminal diagnosis. Curative options no longer possible, she was palliatively treated at 24 years old.
Miranda and her husband were told she was going to die that day. Non genetic pheochromocytoma can recur, the 10% rule is outdated and ALL cases require lifelong monitoring. The patient’s symptoms should be acknowledged with repeat biochemical testing and imaging to confirm.
Miranda went on to be treated by a world class multi disciplinary team of NET specialists at the MUHC in Montreal, QC. Undergoing debulk surgery in 2016, MIBG therapy, daily Sandostatin injections and PRRT clinical trial in Quebec City. ‘fabulous despite the odds’ Miranda has been redefining terminal illness ever since. Advocating for patient awareness around the world
From the author: I have dedicated my life to helping patients and physicians better understand how to manage this disease. Uncovering important links to co-morbidities such as mast cell activation syndrome. This important link is what has kept me alive and allowed me to thrive. My focus is QOL, early diagnosis, and preventing suffering through proper management. I tell my story to provide the necessary information to physicians and patients to work cohesively for improved care. Please consider this when treating the patient that provided you with this literature. Many thanks
Visit my other pages to learn about my story and recurrence with metastatic pheochromocytoma
Pheo para resource: pheo para alliance
Pheo para support: click here
Social channels: @ pheovsfabulous