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Pheochromocytoma: Anyone being treated for an adrenal mass?
Diabetes & Endocrine System | Last Active: Sep 27 2:28pm | Replies (93)Comment receiving replies
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.
Replies to "Did they run a normal CT without contrast with no other imaging? If your bloodwork comes..."
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Thank you for replying to my post. It's been a lonely road the past few months.
Jun 7 my PCP ordered, CT Abdomen Pelvis W IV Contrast, I recently read about a MIBG is a better imaging test than others. Will talk with my PCP on Mon Aug 14.
I will read the linked article you provided.
I was not impressed with the Endo that I saw. Felt like he was just blowing me off. I will investigate what he specializes in and address it with my PCP.
One thing I forgot to include in my original post, I have been working on family genealogy for a few years. When going back and reading an obituary I found a paternal second cousin that died from cancer - Pheo. That really rattled my cage. I sent a copy of the obit to my PCP so we will be discussing that as well. I never knew my cousin but, in his obit I found out that he was treated by National Insitute of Health. He lived six years after diagnosis. I'm waiting for the repeat of my lab work and if it comes back positive I believe I may contact my cousins brother and try and learn about his brothers symptoms and treatments.
Thank you again and I will be back in touch this weekend after reading the article.
Renée