Please help. Does anyone go through this?

• By joyceg98
• Posted October 14, 2007 at 4:10 pm

It sounds like you may have another pheo. Yes, it is quite possible to have a pheo when you have no adrenal glands. They can form anywhere there is "chromaffin tissue", or anywhere along the sympathetic nervous system. Draw a line from your earlobe to your groin, on either side of the body. They might find an extra-adrenal pheochromocytoma anywhere along those two lines. (extra- here means outside the adrenal gland).

Ask them to screen you for a pheo. They should run the plasma free metanephrines test and a 24-hour urine collection, and analyze for metanephrines and catecholamines. This combination of tests will hopefully turn up evidence that there is a pheo causing all this havoc. Then once we know chemically that there is one in your body, the next challenge is to find it.

Please read the section in the Handbook on VHL in the Adrenal Glands. There is additional information at www.vhl.org/pheo and in the current issue of the Newsletter, as part of the Boston meeting report.

This is a very good resource group about pheos, both inside the adrenals and outside, so feel free to pose questions here as you wish.

Best wishes,
Joyce

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• By Deededell
• Posted October 17, 2007 at 4:46 pm

Hi Joyce,

Thank you for posting. It is now the thought that there is an extra pheo somewhere, however its just elusive. My new question would be this. The plasma met. came back pretty high on the lastest blood work, however they have not done a 24 hr urine to back up the blood work. Is it possible that the steroids I take for the lack of adrenals could cause the blood work to be high. I take cortizone and fludrocortisone. Thanks again for your response.

Deede

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