@dreneeballengee

Hello Renee and welcome to Mayo Connect. I'm so glad that you found this forum and are able to connect with others. I can certainly understand your frustration and concern. It sounds as if you have had a lot of physical symptoms without any diagnosis or treatment.

I found some information about pheochromocytoma from Mayo Clinic's website. Here is the link.
https://www.mayoclinic.org/diseases-conditions/pheochromocytoma/symptoms-causes/syc-20355367
I would encourage you to read the entire article, including the sections regarding signs and symptoms as well as diagnosis and treatment.

Often when we face a hard-to-diagnose health issue, we need to learn as much as possible about the health issue being investigated, I'm glad that you are doing this!

I would like to invite some other members of the group to join you as you seek answers including @peg152, @jeanern01 and @dawn_giacabazi.

Please remember that it is always your right to seek a second opinion if you feel that your concerns are not being addressed by your current medical team.

After you read article from Mayo Clinic that I posted above, you will see that it lists certain foods and meds that increase the symptoms if you do have this disorder. Do any of these foods worsen your symptoms?

Did they run a normal CT without contrast with no other imaging?

If your bloodwork comes back high again, I'd request further imaging.

This is from the article linked below:
"Imaging tests to localize tumors are usually done in patients with abnormal screening results. Tests should include CT and MRI of the chest and abdomen with and without contrast. With isotonic contrast media, no adrenoceptor blockade is necessary. Fluorodeoxyglucose (FDG)-PET has also been used successfully, especially in patients with succinate dehydrogenase mutations, but Gallium-68 dotatate-PET scanning is more useful."

A plain CT run once could easily miss a tumor. If that is truly what your endocrinologist went with, they are likely not a specialist in pheochromocytomas, and you need one. Ask your PCP if the referral could be done to an endocrinologist who is familiar with neuroendocrine tumors, because many aren't.

You wouldn't believe the things I heard endos say about hyperparathyroidism. Either they think I'm dumb, or they know zippo about parathyroid adenomas. One-size-fits-all is not what you need in a doctor right now.
https://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/adrenal-disorders/pheochromocytoma#:~:text=Diagnosis%20is%20by%20measuring%20catecholamine,or%20MRI%2C%20help%20localize%20tumors.

Hi @dreneeballengee ,
How are you? Did you have the tests repeated? I recently saw a surgeon at Mayo. He reviewed my numerous Ct and MRI scans- my mass is small 1.5 I think?? And has not changed in size since 2019- so they are very hopeful it is not malignant or cancer. But because my houndsfield score is so high (the tumor lights ups bright on scans) they cannot without removing it determine if it is a lipid poor adenoma or “silent” pheo. So they are recommending to remove it with a simple surgery- I may even go home the same day. I really don’t have symptoms, unlike you, so I am still deciding on surgery or watching it one more year? Keep advocating for yourself and reach out for multiple opinions. I would try a university center or somewhere specializing in this type of diagnosis if possible. Really these are fairly new diagnosis with more being discovered because of more scans being done- so some drs tend to not to be real aggressive. Hope you find some answers soon though. Best wishes.
Jeane