CAT scan was a week ago today. No word yet. Thing is, i'm very symptomatic, and I make nearly no cortisol. When my urine test resulted in adrenal tumor indicators, they set me up for CT. My first appointment with Dr. Meir is March 13 (endocrine specialist). 10 days after starting the dried adrenal gland my cortisol was up to a 13 from 0.6. Range is 4-22. My cortisol is why I get into trouble with anxiety attacks that have resulted in MI's. I am very hopeful that DR. LAM and her team will have some answers. I suppose if the tumors are found, I'll have surgery since I'm symptomatic???? Thanks guys.
CAT scan was a week ago today. No word yet. Thing is, i'm very symptomatic, and I make nearly no cortisol. When my urine test resulted in adrenal tumor indicators, they set me up for CT. My first appointment with Dr. Meir is March 13 (endocrine specialist). 10 days after starting the dried adrenal gland my cortisol was up to a 13 from 0.6. Range is 4-22. My cortisol is why I get into trouble with anxiety attacks that have resulted in MI's. I am very hopeful that DR. LAM and her team will have some answers. I suppose if the tumors are found, I'll have surgery since I'm symptomatic???? Thanks guys.
I'm so glad to hear that you will be seeing an endocrinologist. That sounds like it will be a good place to continue this investigation. You mentioned having a MI, are you referring to a heart attack or something else?
I look forward to hearing from you again. Will you keep posting with your questions or concerns?
I'm so glad to hear that you will be seeing an endocrinologist. That sounds like it will be a good place to continue this investigation. You mentioned having a MI, are you referring to a heart attack or something else?
I look forward to hearing from you again. Will you keep posting with your questions or concerns?
Two EKG's specified Anterior MI, then suspect Inferior MI. I had a third one recently at Norman ER but as of yet, I haven't been able to get that copy. I had a normal EKG Dec. 2021.
Before I quit vaping, I had one on Aug. 1 or 2 2022, then another (same symptoms, and loss of consciousness) around the first part of September. My last full day at work was 26th of August. I Quit vaping right after the second episode. I had a shiner for a month!! Scary, I remember thinking, being convinced that I was passing away. Its been an ordeal. I'm sure things are gonna get better, now.
My Cardiologist has asked me to go on Zetia, because I reflect High levels of HDL and LDL. MY triglycerides are good. Keep wondering if there is not a connection between High Cholesterol and Cortisol production. I'm gonna hold out on Zetia, until I talk with my Endocrinologist. I know right carotid is 55%-60% occludid, and left is 40 or 50% percent. My cardiologist says he is comfortable with that amount of blockage because it normal for a 54 yr. old. Mitral valve mild regurgitation is not a concern either. So I'll see him in a year. I'll be keeping an eye on this stuff. If my chest pain worsens, I'll need to do something. Its very mild most times now, just kinda aware that its there.
My Cardiologist has asked me to go on Zetia, because I reflect High levels of HDL and LDL. MY triglycerides are good. Keep wondering if there is not a connection between High Cholesterol and Cortisol production. I'm gonna hold out on Zetia, until I talk with my Endocrinologist. I know right carotid is 55%-60% occludid, and left is 40 or 50% percent. My cardiologist says he is comfortable with that amount of blockage because it normal for a 54 yr. old. Mitral valve mild regurgitation is not a concern either. So I'll see him in a year. I'll be keeping an eye on this stuff. If my chest pain worsens, I'll need to do something. Its very mild most times now, just kinda aware that its there.
You've been keeping on top of these health problems and being proactive. That is a good thing. Also, that fact that you are no longer vaping has probably been helpful for your overall health.
It is good that you are keeping an eye on all that is going on.
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.
Jw7
So sorry to hear this news, I was diagnosed with a Pheochromocytoma by a endocrinologist at the UW after suffering from severe medical problems, heart attacks out of nowhere ext, when I read your post it really is mind blowing that most doctors haven’t even heard of some of these things, now I’m wondering if because they ignored the Pheochromocytoma now I have Nutcrackers Syndrome, apparently involving my kidney and aorta, and only a few doctors know how to treat, I’m scheduled for April 17 and on a cancellation list. Saw a Neurosurgeon yesterday hoping he could help however he said he had never heard of any of the 3 rare conditions I have, it’s frustrating for him he said because he wishes he could help-as I am obviously wasting away quickly.
I unfortunately had to call for a aid car to take me after my pain became worse, I was unable to stand or sit, but a very bad experience in ER occurred and I was discharged without a exam, they had no room for me and they accused me of refusing treatment????
My doctor ordered a hospital bed for me as I have no subcutaneous fat and the medical supplies Store Representative said they had to request my medical records from my doctor in addition to his written prescription..
I feel so depressed now , don’t even think I will make it till April 17, and now I’m too scared to go to a hospital and being thrown out because of them being overwhelmed????
This has ruined my mental health as well, and I feel like it’s to overwhelming for my husband, causing stress depression and anxiety for all of us in this house,
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I had a CAT scan done 6 days ago, no results yet they say. But yes, ive read some about that. I had gal bladder sx 3 yrs ago, so ya, i should be.
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1 ReactionMy blood tests pointed to the dx of pheochromocytoma
She says wait and talk with edocrine specialist on the 13th.
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1 ReactionCAT scan was a week ago today. No word yet. Thing is, i'm very symptomatic, and I make nearly no cortisol. When my urine test resulted in adrenal tumor indicators, they set me up for CT. My first appointment with Dr. Meir is March 13 (endocrine specialist). 10 days after starting the dried adrenal gland my cortisol was up to a 13 from 0.6. Range is 4-22. My cortisol is why I get into trouble with anxiety attacks that have resulted in MI's. I am very hopeful that DR. LAM and her team will have some answers. I suppose if the tumors are found, I'll have surgery since I'm symptomatic???? Thanks guys.
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2 Reactionsactually it was the 24 hour urine test that narrowed it down
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1 ReactionHello again @lisanewell68
I'm so glad to hear that you will be seeing an endocrinologist. That sounds like it will be a good place to continue this investigation. You mentioned having a MI, are you referring to a heart attack or something else?
I look forward to hearing from you again. Will you keep posting with your questions or concerns?
Two EKG's specified Anterior MI, then suspect Inferior MI. I had a third one recently at Norman ER but as of yet, I haven't been able to get that copy. I had a normal EKG Dec. 2021.
Before I quit vaping, I had one on Aug. 1 or 2 2022, then another (same symptoms, and loss of consciousness) around the first part of September. My last full day at work was 26th of August. I Quit vaping right after the second episode. I had a shiner for a month!! Scary, I remember thinking, being convinced that I was passing away. Its been an ordeal. I'm sure things are gonna get better, now.
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Like -
Helpful -
Hug
1 ReactionMy Cardiologist has asked me to go on Zetia, because I reflect High levels of HDL and LDL. MY triglycerides are good. Keep wondering if there is not a connection between High Cholesterol and Cortisol production. I'm gonna hold out on Zetia, until I talk with my Endocrinologist. I know right carotid is 55%-60% occludid, and left is 40 or 50% percent. My cardiologist says he is comfortable with that amount of blockage because it normal for a 54 yr. old. Mitral valve mild regurgitation is not a concern either. So I'll see him in a year. I'll be keeping an eye on this stuff. If my chest pain worsens, I'll need to do something. Its very mild most times now, just kinda aware that its there.
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Helpful -
Hug
1 Reaction@lisanewell68
You've been keeping on top of these health problems and being proactive. That is a good thing. Also, that fact that you are no longer vaping has probably been helpful for your overall health.
It is good that you are keeping an eye on all that is going on.
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Helpful -
Hug
1 ReactionJw7
So sorry to hear this news, I was diagnosed with a Pheochromocytoma by a endocrinologist at the UW after suffering from severe medical problems, heart attacks out of nowhere ext, when I read your post it really is mind blowing that most doctors haven’t even heard of some of these things, now I’m wondering if because they ignored the Pheochromocytoma now I have Nutcrackers Syndrome, apparently involving my kidney and aorta, and only a few doctors know how to treat, I’m scheduled for April 17 and on a cancellation list. Saw a Neurosurgeon yesterday hoping he could help however he said he had never heard of any of the 3 rare conditions I have, it’s frustrating for him he said because he wishes he could help-as I am obviously wasting away quickly.
I unfortunately had to call for a aid car to take me after my pain became worse, I was unable to stand or sit, but a very bad experience in ER occurred and I was discharged without a exam, they had no room for me and they accused me of refusing treatment????
My doctor ordered a hospital bed for me as I have no subcutaneous fat and the medical supplies Store Representative said they had to request my medical records from my doctor in addition to his written prescription..
I feel so depressed now , don’t even think I will make it till April 17, and now I’m too scared to go to a hospital and being thrown out because of them being overwhelmed????
This has ruined my mental health as well, and I feel like it’s to overwhelming for my husband, causing stress depression and anxiety for all of us in this house,
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Helpful -
Hug
1 Reaction