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Pheochromocytoma: Anyone being treated for an adrenal mass?

Posted by tmhb8 @tmhb8, Mar 10, 2022

Anyone being treated for an adrenal mass?

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dbest1238 | @dbest1238 | Mar 19, 2025
In reply to @dbest1238 "Not true, if pheo is secreting excess hormones prompt removal is necessary. Mine is secreting high..." + (show)
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Not true, if pheo is secreting excess hormones prompt removal is necessary. Mine is secreting high amounts of epinephrine, norepinephrine and metanephrines are through the roof. Mine is located inside the medulla and entire gland needs removal.

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These excess hormones can cause severe damage to all major organs. My surgery is scheduled for April 4th

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dbest1238 | @dbest1238 | Mar 19, 2025

Yes, Pheochromocytoma in left adrenal gland. Secreting excess hormones and is located inside the medulla. Surgery in two weeks for Adrenalectomy

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Colleen Young, Connect Director | @colleenyoung | Mar 30, 2025
In reply to @dbest1238 "These excess hormones can cause severe damage to all major organs. My surgery is scheduled for..." + (show)
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These excess hormones can cause severe damage to all major organs. My surgery is scheduled for April 4th

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@dbest1238, thinking of you as you prepare for surgery this week. How are you feeling?

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dbest1238 | @dbest1238 | Mar 31, 2025
In reply to @colleenyoung "@dbest1238, thinking of you as you prepare for surgery this week. How are you feeling?" + (show)
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@dbest1238, thinking of you as you prepare for surgery this week. How are you feeling?

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Anxious, but always feel that way with all these crazy hormones. Scared, risky surgery. But have immense faith in my doctor and his team.

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wyowest | @wyowest | Mar 31, 2025

I had my right adrenal gland removed in 2023. I was sore for a few days but got back to a normal routine fairly quickly. Sending positive thoughts your way

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sc91868 | @sc91868 | May 1, 2025
In reply to @jw7 "Hi, My wife has a Pheochromocytoma which many in her family have had and died from...." + (show)
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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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Dr. Tobias Carling Tampa Florida

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jgporter | @jgporter | May 8, 2025
In reply to @dawn_giacabazi "@janfam Mine took 25min. Absolutely wonderful clinic, hospital, staff, and doctors. He's a fantastic teaching physician..." + (show)
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@janfam
Mine took 25min.
Absolutely wonderful clinic, hospital, staff, and doctors. He's a fantastic teaching physician as well and pray that he shares his knowledge with many people so that they can also treat patients and their illnesses to the best of their abilities with the proper knowledge and training. He says one in seven people have adrenal tumors or adrenal disorders and don't even know it. That blows my mind. Just thinking about that one in seven, his mind-blowing statistics.
Congratulations on a successful surgery and I'm hoping you're doing much better now. What
Thanks,
Dawn

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Hi Dawn,
I am considering surgery w Dr Carling - I have a 5.1&5.1 incideteloma which according to tests is not putting out hormones but I have symptoms over the years- cold, low blood pressure, nausea etc, low T3 high reverse T3. Just afraid if I have only one adrenal gland~ how do I know that one is sufficient. How are you a couple of years later?
Thanks Jessica

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Dawn, Alumni Mentor | @dawn_giacabazi | May 8, 2025
In reply to @jgporter "Hi Dawn, I am considering surgery w Dr Carling - I have a 5.1&5.1 incideteloma which..." + (show)
Profile picture for jgporter @jgporter

Hi Dawn,
I am considering surgery w Dr Carling - I have a 5.1&5.1 incideteloma which according to tests is not putting out hormones but I have symptoms over the years- cold, low blood pressure, nausea etc, low T3 high reverse T3. Just afraid if I have only one adrenal gland~ how do I know that one is sufficient. How are you a couple of years later?
Thanks Jessica

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@jporter
Hi Jessica,
Thank you so much for reaching out. I completely understand your concerns — I had many of the same ones before my surgery with Dr. Carling.
I had a similar journey: years of unexplained symptoms, dozens of doctors, and ultimately a diagnosis that changed everything. I had one adrenal gland removed due to a tumor (which turned out to be a non-secreting adenoma with features of Conn’s syndrome). Like you, I was nervous about relying on just one adrenal gland — but I’m here to tell you that two years later, (5/3/23) I’m doing very fantastic. My labs are stable, my blood pressure, potassium, magnesium, anemia, diabetes are completely back to normal and I follow up regularly with labs to monitor my electrolytes and kidney function. My left adrenal gland took over the work for the right one
Dr. Carling and his team were a godsend — so thorough, kind, and skilled. They helped me make peace with my decision, and I haven’t looked back. I’m happy to talk more if you’d like —
You’re not alone, and I’ll be praying for clarity and peace as you make the best decision for your health.
Warmly,
Dawn

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mom34270 | @mom34270 | Aug 25, 2025

I was diagnosed a few months ago with a grapefruit sized mass on my adrenal gland
Now that I am aware the last few years make so much more sense panic attacks hypertension not thinking clearly it’s been crazy
Currently on a alpha blocker and beta blocker as surgery is the 5sept
Which is super scary and causing panic in itself
Would love to hear how your treatment is going

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mom34270 | @mom34270 | Aug 25, 2025
In reply to @jw7 "Hi, My wife has a Pheochromocytoma which many in her family have had and died from...." + (show)
Profile picture for jw7 @jw7

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.

Jump to this post

Wow just the familial part alone is incredible in that the doctors you are consulting are not taking it seriously
I was diagnosed a few months ago after an accidental discovery via a CT scan
That diagnosis has lead to such understanding in my mental and physical health over the past few years
I am having surgery on the 5th of Sept at Vanderbilt with an amazing team so far
I hope very much your wife is able to find her relief and if I can be of any help with my docs names please reach out
My best to you and your wife hoping for a quick resolution

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