Guys, it’s not just an exam question. I’m recovering from an adrenalectomy now. It’s only been a week, but the change has been both positive and amazing. My doc waited 30 years before he saw his first Pheo - I am his first. I actually self-diagnosed because these things aren’t typically in the front of a doc’s mind. Took a couple of years to figure it out.
It took a few weeks to stabilize my vitals, but BP this morning was 118/78. Anxiety has pretty much disappeared. PTSD seems to have improved a bit, but that pre-dates the Pheo by about 20 years.
My heart rate was pounding and I was at work and I didn't lift anything heavy. I started to feel very sick causing me to feel nauseous, vomiting and fast heart rate (Tachycardia) . My manager called paramedics and they said my heart rate was at 160 which was dangeroues. I go to ER then I tell them all my symtpoms. I get admitted to hospital and my blood pressure was quite high. I had the symptoms of "Pheochromocytoma" as I also had shaky hands, sweating, anxiety and my body would twitch and shake which is quite scary. In order to be diganosed I needed a CT scan and a PET scan and when I did both of those scans, it was confirmed I had it. My "Pheochromocytoma" has been in my body for 7 years. How did they know? in 2016, I had an ovarian cyst burst and my endocronlogist pulled up my past CT scan back in 2017 when I mentioned I have PCOS and he was able to see in the old CT scan that this tumor was there and it was never mentioned to me. I am on heart meds and BP meds and surgery will be soon!
What is not rare are doctors that miss the diagnosis. I kept going to my doctor and went to the emergency room 17 times since July. All the same symptoms, spiking blood pressure, etc. He did nothing the entire time, he wouldn't even adjust my blood pressure medicine, I had to totally rely on other doctors including emergency doctors to adjust anything. Turns out my Endocrinologist found the issue. If emergency rooms did the simple blood test they could have saved over $300,000 in tax payer money. I have to wonder how many thousands of others are in my same situation. The top doctors in the world regarding this disagree with the "rare" label saying as many as 1 in 5 people with Hypertension have this issue and they all agree textbooks that train doctors need to be changed to reflect the truth.
I had a right pheo removed in 2020, in now experiencing all the same symptoms I had before it was removed. I forgot how bad it literally hurts your body when that adrenaline dumps
I have both pituitary Cushings Disease and pheochromacytoma, with a MAX gene variant which causes pheos, renal cancer and pit adenomas. Wish I knew sooner! My Cushings DX took only 16 years 🙄 kept sending me to psych for anxiety. I was literally manic, cortisol toxicity was insane. So much suffering. Idk how I survived. Also my plasma Mets were normal, urine very high. Multiple times! Makes the DX a lot more difficult
Jesus! Smile is not horrible but Ali's smile by fahim ur rehman mqm leaders cast produce Ali's bad smile at that night, but jesus! saved me by showing me to him
Guys, it’s not just an exam question. I’m recovering from an adrenalectomy now. It’s only been a week, but the change has been both positive and amazing. My doc waited 30 years before he saw his first Pheo - I am his first. I actually self-diagnosed because these things aren’t typically in the front of a doc’s mind. Took a couple of years to figure it out.
Did your symptoms go away?
It took a few weeks to stabilize my vitals, but BP this morning was 118/78. Anxiety has pretty much disappeared. PTSD seems to have improved a bit, but that pre-dates the Pheo by about 20 years.
@@billbutler1474 you know if it is hereditary for you?
00:12 Background
03:21 Symptoms, Presentation & Diagnosis
4:50 Treatment
05:48 Imaging
07:01 Recap
My heart rate was pounding and I was at work and I didn't lift anything heavy. I started to feel very sick causing me to feel nauseous, vomiting and fast heart rate (Tachycardia) . My manager called paramedics and they said my heart rate was at 160 which was dangeroues. I go to ER then I tell them all my symtpoms. I get admitted to hospital and my blood pressure was quite high. I had the symptoms of "Pheochromocytoma" as I also had shaky hands, sweating, anxiety and my body would twitch and shake which is quite scary. In order to be diganosed I needed a CT scan and a PET scan and when I did both of those scans, it was confirmed I had it. My "Pheochromocytoma" has been in my body for 7 years. How did they know? in 2016, I had an ovarian cyst burst and my endocronlogist pulled up my past CT scan back in 2017 when I mentioned I have PCOS and he was able to see in the old CT scan that this tumor was there and it was never mentioned to me. I am on heart meds and BP meds and surgery will be soon!
That's so scary, that no one told you!
It indeed was scary, I had my operation though, I feel better but I am still on heart medication!@@kelleyb2463
I'm happy to hear your doing better....I have symptoms that point toward a adrenal problem....waiting for the results from a ARR test.....
@@davidseal8375 I wish you all the best! I hope you are ok 👌🏻
@@kelleyb2463 most doctors have never seen or know about pheos
What is not rare are doctors that miss the diagnosis. I kept going to my doctor and went to the emergency room 17 times since July. All the same symptoms, spiking blood pressure, etc. He did nothing the entire time, he wouldn't even adjust my blood pressure medicine, I had to totally rely on other doctors including emergency doctors to adjust anything. Turns out my Endocrinologist found the issue. If emergency rooms did the simple blood test they could have saved over $300,000 in tax payer money. I have to wonder how many thousands of others are in my same situation. The top doctors in the world regarding this disagree with the "rare" label saying as many as 1 in 5 people with Hypertension have this issue and they all agree textbooks that train doctors need to be changed to reflect the truth.
less that 1/2 of 1 percent of high blood pressure in people are pheos
Same here took them over 10 years to diagnose nobody would listen, now the damage has been done.
I had a right pheo removed in 2020, in now experiencing all the same symptoms I had before it was removed. I forgot how bad it literally hurts your body when that adrenaline dumps
Good information, I had my first one removed in 1972 and now it seems to have reared it's ugly head again. Oh, so much fun.
Thank you ❤
My normateneohrines was 1950 2 yrs ago.. re-tested this week and they're higher. CT tomorrow.
How are you now love?
@@carissavienbaquirin7540 adrenals all clear no tumor located, have been diagnosed with eagle syndrome .. referred to neurosurgeon
I have both pituitary Cushings Disease and pheochromacytoma, with a MAX gene variant which causes pheos, renal cancer and pit adenomas. Wish I knew sooner! My Cushings DX took only 16 years 🙄 kept sending me to psych for anxiety. I was literally manic, cortisol toxicity was insane. So much suffering. Idk how I survived.
Also my plasma Mets were normal, urine very high. Multiple times! Makes the DX a lot more difficult
MRis are better at detecting pheos than CT scans and without the radiation
you are the best !!!
Question: Why is a CT best? You mention several times that it is the best but not why.
Nice
😊🙏
Jesus! Smile is not horrible but Ali's smile by fahim ur rehman mqm leaders cast produce Ali's bad smile at that night, but jesus! saved me by showing me to him
On christians family group chat over messenger