Pheochromocytoma: Anyone being treated for an adrenal mass?

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.

Thank you for making contact with me. I will read the article you have shared and will get back with you when i look at the list of meds & food and let you know.
I will be more than happy to hear from others. This has been a very lonely road over the past few months. And there are days when I don't think I can keep going.
Something that I forgot to put in my original post, if I can share it with you. I have been working on family genealogy for a few years. Couple of weeks ago I was looking at an obituary for a paternal second cousin. He died of cancer, a six year battle with Pheo! May I say that rattled my cage. I sent a copy of the obit to my PCP and I see her on Mon Aug 14. Can't wait to talk with her.
I will be back in touch this weekend.
Thank you!!
Renée

Thank you for making contact with me. I will read the article you have shared and will get back with you when i look at the list of meds & food and let you know.
I will be more than happy to hear from others. This has been a very lonely road over the past few months. And there are days when I don't think I can keep going.
Something that I forgot to put in my original post, if I can share it with you. I have been working on family genealogy for a few years. Couple of weeks ago I was looking at an obituary for a paternal second cousin. He died of cancer, a six year battle with Pheo! May I say that rattled my cage. I sent a copy of the obit to my PCP and I see her on Mon Aug 14. Can't wait to talk with her.
I will be back in touch this weekend.
Thank you!!
Renée

Having a family member who also had this disorder is certainly interesting. I'll look forward to hearing from you again.

I have been dealing with multiple physical issue since Mar 2023. I went to my PCP with heart palps & possible HPB and right side pain. My PCP started running tests, and her first with blood and urine for Pheo. I didn't have a clue what that was. The results came back extremely elevated. She referred me to endo...it took for months to be seen. During that time other symptoms developed. Heavy sweating, headaches, nausea, pins & needles, weight loss,
diarhea after eating "anything", dizziness, fatigue, severe pain in right side, abdomen, & kidney area. That pain has now spread to the left side. Pain level not as high as right side. Pain in right side, abd, back is now excruciating with minimal exertion. Sever muscle cramps all over my body. I saw the endo and he said he could not help me. His specialty does not have pain related. Had CT scan allegedly did not show anything.
I am seeing my PCP on Mon, and she is running the Pheo lab work again. I have fasted certain foods, beverages, & medications to see how the results turn out. I have not worked since May 5 due to the pain. Every few days I say, I can't take much more. It is all getting to be too much for me.
Renée

Teresa,
I wrote you at about 10:30pm EDT and it was rather lengthy. Did you receive it. My internet crashed. I don't see my response to you out there. Let me know.
Renée

I don't see a post from you, except for the one two days ago. Do you see it on this discussion page?

Sorry I was delayed replying. Haven't been up to writing. Had a Shingles Vacc & it knocked me down hard, like the flu.
I saw my PCP this past Mon Aug 14, aside from doing the Metanephrines (blood & urine) I still know nothing. I am waiting for results. I keep checking My Chart for the results...
Well, I just got my lab result (blood only) for Metanephrines/Normetanephrine. Is this something I can attach and be insured that only you can see it or is it available for the rest of the world to see? It did go down. Please let me know.

Hi,
My wife has a Pheochromocytoma which many in her family have had and died from. She had a massive hemorrhage in 2016 and no one has been able to determine the etiology. The Pheochromocytoma was only discovered after the stroke but she is certain it has been there most of her life and is very likely the cause of her stroke.

She has been to doctor after doctor, including MD Anderson, and we have tried getting Mayo Clinic to consider looking at her, they will not.

If she does not find someone willing to do surgery to take it out, we are certain that, like the rest of her family members, she will stroke again, have a heart event or have cancer all of which run rampant in her family. The symptoms she had before her stroke have started happening again for the last 2.5 years and we have no one willing to help her.

Does anyone know an endocrine surgeon who is lgbtq safe and willing to take the Pheochromocytoma out with previous blood work that is not very conclusive and imaging that shows it has grown a small amount in the past 6 years. She can not handle any more testing, blood draws etc.

we would want to do a consult via video or the phone before driving to wherever the doctor might be located to have it taken out.

Doctors have been extremely traumatizing for her in ways I won’t detail here.
Thank you,
We are desperate for help.