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.
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
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
It is so hard to navigate all this solo. Specialists don't talk to each other and expect your PCP to coordinate. Primary docs are so overworked they just don't have the time!
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 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
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
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
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.
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.
I'm sorry to hear that you've been sick. I am not a medical professional and therefore cannot interpret test results. On Mayo Connect we are here to support and encourage you in your health care journeys. So please, do not post any personal test results on a public forum such as this.
If you use the patient portal, you might consider asking about the significance of lower results.
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.
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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
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1 ReactionHaving a family member who also had this disorder is certainly interesting. I'll look forward to hearing from you again.
You are welcome.
It is so hard to navigate all this solo. Specialists don't talk to each other and expect your PCP to coordinate. Primary docs are so overworked they just don't have the time!
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1 ReactionTeresa,
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
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
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1 ReactionI 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.
Hello @dreneeballengee
I'm sorry to hear that you've been sick. I am not a medical professional and therefore cannot interpret test results. On Mayo Connect we are here to support and encourage you in your health care journeys. So please, do not post any personal test results on a public forum such as this.
If you use the patient portal, you might consider asking about the significance of lower results.
How are you feeling overall?
Dr Tobias Carling in Tampa is supposed to be the best Pheochromocytoma surgeon in the country. Try contacting him. Worth a try.
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1 ReactionI am waiting to get diagnosed.
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