Pheochromocytoma Support Foundation

  Shining the light on pheochromocytoma awareness through education, early detection, and support. 

Before Your Appointment:

Document your symptoms. 

Blood Pressure Symptoms:

1. Are you on blood pressure medication or have you taken it in the past? Did it accurately control your blood pressure? 

2. Keep daily records of blood pressure. 

Headache Symptoms:
1. Record every headache in detail. Include when it started, where it started on your head, where it spread to. 
2. Rate the pain level of each headache on a scale of 1-10 (1 being no pain, 10 being painful)
3. Include what you were you doing when the headache occurred?

Palpitations Symptoms:
1. Note the time the heart palpitations occurred.
2. Note what you were doing when they occurred. 
3. Were they fast, pounding, rapid, or fluttery? Write this information down, too. 

Sweating and Other Symptoms:
Keep a daily journal. Note if you experienced any excessive sweating. Note where you were and what you were doing at the time. If you have the means, test your blood sugar daily and record that, as well. Stroke like symptoms? Record them.

Part of determining the possibility of a pheo is showing if the symptoms occurred during normal activities or activities that would have triggered the pheo. This is why documentation is so important.

During Your Appointment:

Initiate the Conversation.

Doctors are very used to seeing patients who have over-analyzed basic symptoms on the internet and come in convinced they are dying of some horrible disease. Because this is so common, you want to have documentation to back yourself. You also want to initiate the conversation. It might go something like this:

"I've been recording my headaches, and I'm having other symptoms as well. They are consistent with that of a pheochromocytoma. I'd really like it if you would test me so we can confirm or rule out that as the reason behind my headaches."

Their is a good chance your doctor will tell you that pheos are rare, and therefore testing may not really be necessary. A good reply is:

"I know they are rare, but I would still appreciate it if you would test me so I can at least rule it out since I am having other symptoms associated it."

Be persistent!! It usually pays off!

My doctor will not screen me. What do I do?

Don't give up!

If you truly feel you need to be screened for a pheochromocytoma, don't give up! If your doctor refuses to test you, find one who will.