That’s encouraging to hear! This is the surgery they are recommending to me. I meet the surgeon the end of next month- I keep pushing it. They told me it’s a nice simple procedure, overnight stay and quick recovery. I am so glad to hear a positive story- I am not really nervous about the surgery, I really just didn’t look forward to the recovery part. Thank you for sharing your story! Best wishes!
I am currently being treated for pheochromocytoma symptoms such as high blood pressure and high ocular pressure which lead to glaucoma. HPB meds and Glaucoma meds so far. I have Adrenal tumors on both kidneys and the are slowly growing.
I wanted to tell you all about my journey. My blood pressure was around 130/97 for a while. The doctors advised changing lifestyle, engaging in regular exercise, and reducing salt consumption. However, despite using the suggested strategy, I was unable to control my blood pressure, and it really became worse. Then they dug into the specifics and began with an echo, an ultrasound of the kidneys, and thyroid testing. I was given the order for a CT scan after the ultrasound revealed a tumor on the right adrenal gland. My scan revealed a 5.5*5.5-cm mass, according to the results. In addition, testing for cortisol, alderstrone/renin ratio, and 24-hour urine were performed.
The results of all these tests came back within and in some cases below normal, which shocked the doctors. They informed me that the outcome in pheocromocytoma instances is typically 2x or even 3x. They did, however, advise removal of the tumor due to its size. I am looking forward to having surgery on July 20.
I wanted to tell you all about my journey. My blood pressure was around 130/97 for a while. The doctors advised changing lifestyle, engaging in regular exercise, and reducing salt consumption. However, despite using the suggested strategy, I was unable to control my blood pressure, and it really became worse. Then they dug into the specifics and began with an echo, an ultrasound of the kidneys, and thyroid testing. I was given the order for a CT scan after the ultrasound revealed a tumor on the right adrenal gland. My scan revealed a 5.5*5.5-cm mass, according to the results. In addition, testing for cortisol, alderstrone/renin ratio, and 24-hour urine were performed.
The results of all these tests came back within and in some cases below normal, which shocked the doctors. They informed me that the outcome in pheocromocytoma instances is typically 2x or even 3x. They did, however, advise removal of the tumor due to its size. I am looking forward to having surgery on July 20.
Hi @jimmysherif
I have a very similar situation. I had open heart surgery almost 3 yrs ago for congenital issues- one of my follow up ct scans showed a right adrenal mass- much smaller than yours -1.5. But it had a very high score on the ct scan like a pheo- so I did all the additional labs, urine tests, all normal. But because of the scans I have been advised to have it removed. I meet with the surgeon at the end of the month. Keep us updated on your recovery! Best wishes and positive thoughts your way!
Jeane
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.
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.
I love my patient portal as well. I was reading my ct chest report and I saw I had an adrenal mass- unchanged since 2019(it was 2021). No one ever told me I had an adrenal mass- and to be fair when my scan in 2019 was done I was having major health issues and heart surgery. So I just casually asked my cardiologist about it, and she immediately wanted it checked- she just assumed since it was seen on an earlier scan I knew about it. But when the radiologist in 2019 read the scan they didn’t see or didn’t care to put in the impression- so luckily the radiologist in 2021 did. And if I hadn’t spoke up and asked about it, my docs would have just kept assuming one of my other docs was addressing it. I am seeing an endocrinologist now and am scheduled for a surgical appointment in July. It’s not because I have bad docs things just can get missed, and no one is a better advocate than the patient themselves. I am a nurse- and my husband is a physician- we know the faults in our system and we both love the health care facilities that provide a portal for patients to view their records. Most of the time it only helps the patient and their care.
Take care!!!
Jeane
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
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
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.
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?
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
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.
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.
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?
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
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That’s encouraging to hear! This is the surgery they are recommending to me. I meet the surgeon the end of next month- I keep pushing it. They told me it’s a nice simple procedure, overnight stay and quick recovery. I am so glad to hear a positive story- I am not really nervous about the surgery, I really just didn’t look forward to the recovery part. Thank you for sharing your story! Best wishes!
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2 ReactionsSo you have pheochromocytoma growing on both your kidneys or do you mean adrenal glands
Hello everyone
I wanted to tell you all about my journey. My blood pressure was around 130/97 for a while. The doctors advised changing lifestyle, engaging in regular exercise, and reducing salt consumption. However, despite using the suggested strategy, I was unable to control my blood pressure, and it really became worse. Then they dug into the specifics and began with an echo, an ultrasound of the kidneys, and thyroid testing. I was given the order for a CT scan after the ultrasound revealed a tumor on the right adrenal gland. My scan revealed a 5.5*5.5-cm mass, according to the results. In addition, testing for cortisol, alderstrone/renin ratio, and 24-hour urine were performed.
The results of all these tests came back within and in some cases below normal, which shocked the doctors. They informed me that the outcome in pheocromocytoma instances is typically 2x or even 3x. They did, however, advise removal of the tumor due to its size. I am looking forward to having surgery on July 20.
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2 ReactionsHi @jimmysherif
I have a very similar situation. I had open heart surgery almost 3 yrs ago for congenital issues- one of my follow up ct scans showed a right adrenal mass- much smaller than yours -1.5. But it had a very high score on the ct scan like a pheo- so I did all the additional labs, urine tests, all normal. But because of the scans I have been advised to have it removed. I meet with the surgeon at the end of the month. Keep us updated on your recovery! Best wishes and positive thoughts your way!
Jeane
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1 ReactionHave you looked at adrenal.com?
Moffitt Cancer Center
Tampa Fl
https://www.moffitt.org/
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1 ReactionI 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
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3 Reactions@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.
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
-
Like -
Helpful -
Hug
1 Reaction