Behind the Mystery: Understanding Pheochromocytoma and Paraganglioma
Вставка
- Опубліковано 3 жов 2024
- Understanding Pheochromocytoma and Paraganglioma; rare neuroendocrine tumors that can dramatically impact survival in people of all ages. Every year in the US, fewer than 8 out of one million people are diagnosed with pheo or para tumors. But as many as 130,000 people are living with the disease in the US, although that number may be higher due to underdiagnosis. If pheo and para tumors are not diagnosed and appropriately treated, the disease will likely be fatal. Dr. Joseph Dillon, Co-Director of the Neuroendocrine Tumor Clinic at the University of Iowa educates us on these rare tumors, symptoms to be aware of, and how patients should proceed if they are diagnosed.
105273
Visit: www.thebalancin...
Like: / thebalancingactfans
Follow: / balancingacttv
#TheBalancingAct #BalancingAct
My sister has 14 Pheochromocytoma's...down from 15..and has been suffering with all the medical tests/surgeries/symptoms for over 15yrs now....I'm so grateful for any awareness like this video as it is so rare. Out patriarchal side of the family has it in our DNA so we all have to get tested every 6-12mo. My prayers go out to all who are dealing with this disease....it is so very difficult.🙏😇
Thanking you for sharing your sister's story!
Don't have surgery !!
Can u tell me where ur sister's bp ranged during that time?
@@WTFwithU may i ask why not have surgery? I just recently found out that i have this disease . My doctor told me that i will need to have surgery, cause it is in my right adrenaline gland .
I am so very grateful for this info and research that has been shared and given.
I’ve been sick since I was about 17. Maybe sooner, but at 17 it became obvious something was very wrong. It took 16 years for my first diagnosis: Cushings Disease. But we missed something more. Once treating my Cushings, my cortisol level normalized but symptoms remained. And got more severe. Finally I was notified by my Aunt she had been diagnosed w a paraganglioma, and my Other Aunt had 40 pheos, so they recommended I be tested. I have genetic testing coming up, but my Endo went ahead and tested my blood and urine. Blood was barely normal and urine was VERY elevated, all levels. So here we go again! Idk how many rare diseases one person can have but I am terribly sick and I hate it.
Do you mind sharing what test they ran, I think I have one , thanks
P.s. I hope ypuvare feeling better and getting good care , the help you need.
22 years ago I had bilateral pheos had both adrenals removed and been on steroid replacement since. I’ve had amazing care and follow up care as well and do feel lucky. For all suffering keep positive and all the best. I’ve just been diagnosed with a cystic lesion on my spine and hoping the little bugger not back.
II had one adrenal gland removed 15 years ago. Now I know its back and am having a hard time being diagnosed. So miserable.
@Barry Finley head up soldier Praying for you 🙏
I had one in my abdomen I remember my whole body shutting down my whole body felt like it didn't wanna get up I also thought I had anxiety problems because of how my heart was beating crazy and now I'm on surveillance for a lifetime now.
The not know what you have is the worst. I have been diagnosed with pseudo pheochromocytoma. I have a lot of symptoms and several tests run and they can’t find the tumor but I know it’s in my stomach. My symptoms are getting worse and I’m worried they won’t fine it in time and I will be terminal. This is a very scary and brutal disease.
Well shit! They just told me I have this
I have this symptoms 6 years, no one, no one!!! Knew what's wrong
Thank you so much.
I have paraganglioma and am terminal. I like to reach out see if theres other options. God bless....
I got high bp in young adult . After 6 years when I done MRI it's a tumor in one of adrenal gland. unfortunately not much endocrine surgeon in India to treat
May I know what happen then. I am from India too
May I know what used to be ur bp range during that time?🙏🏻🙏🏻🙏🏻🙏🏻
Facing same issue but don't know where to take treatment
💖 Thanks, & PLEASE RAISE THE AUDIO LEVELS. 💖
Had isthmusectomy of thyroid for cancer nodule and started having symptoms off and on 3 days later. Surgeon and nurses kept dismissing me until symptoms became constant. Checked for other things thyroid related and dismissed me again when everything normal. Sent me to family doc who said heart. At least got me on beta blocker and not xanax. Had to push and push and push to get through to endocrinologist who ordered metanephrines plasma test. Waiting for results. Unbearable especially when I can't sleep. No life now. I am praying for this diagnosis to get help. These symptoms are debilitating. Cant see endo for over a month still. If test is positive, i will need to keep pushing for docs to do something. Why cant anyone be active in helping me? American health care?
That's why doctors should do a cat scan to rule out an anxiety disorder
Dude 100% agree, I was fobbed off by many many doctors from where I am from. Even missed on MRI and CT scans somehow, however PET/MIBG scan finally picked up pheo's on my adrenal gland that had metastasised to my cervical spine.
Here on Long Island, they wrote a script for MRI and imaging right from the beginning. I think the health care here is so much better than other places where I've lived.
Mother has this hope she will be ok
50% are found during Autopsy.
Doctor’s miss these tumors all the time. Shame
Just think of all those people who were probably put on anti-anxiety drugs and had to go through talk therapy. It is a real shame!
Well im going to get tested for this.
Absolutely! For so many years I have been dismissed and drugged for anxiety. No drugs have helped! Finally a cardiologist has listened to me and pushed for me to get tested for me, even though I asked my doctor to test me for it a long time ago. Hopefully someday doctors will look for other conditions before labelling someone as just anxious - really anxiety should be determined AFTER all other avenues have been exhausted.
What did you end up having, adrenal tumors?
@@lagatita1623 I had my bloods a couple of weeks ago. Normal cortisol, low acth and high metaephrines. Just got my CT scan done yesterday. Won't know the results until the 14th as my doctor is away.
Iam undergoing test and waiting result but doctor say if my test are negative they won't have me to do mri but I want to
I'm going to die bc drs think I have anxiety
Get a PET scan or MIBG. doctors kept fobbing me off even clearing MRI and CT.
Watching your diet is very important too. Avoid eating food that is more than one day old - ensuring that it is immediately refrigerated - as naturally producing enzymes in food, called tyramine can be produced in large numbers and cause elevated BP. I have now learned to avoid certain cooked ready-made meat and fish meals, certain cheese, cure meats and fish, olives and the list goes on given, unless you know how long the food has been cooked then this could cause problems with your blood pressure. Eating well, exercising and avoiding caffeine is also very important
Is Tyromine sensitivity a symptom of this adrenal tumor?
@@cindylouhoo-of8rb Do not know. Read about tyramine - it could help or speak to your GP.