Possible Pheochromocytoma - Please help with any advice
Posted , 18 users are following.
Hello all,
I am writing from Canada as there are no sites in my country dedicated to this condition. I have been suffereing acutely with the symptoms of a Pheo for almost a year, my first attack was 4 years ago. The attacks have slowly become more frequent and more dibilitating. The attacks include violent shaking, blister headache, vomitting, sneezing, heart pounding out of my chest. After an attack, I feel nauseated, weak, ache all over and have a headache that lasts for many hours. I have an attack almost every day and little exertion is now required to bring one on - sometimes getting out of bed does it. In between attacks, my BP is normal. It has disrupted my personal and work life beyond recognition. I have seen every "ologist" under the sun and only recently was told after blood and urine tests done by an Immunologist that I likely have a tumor on my adrenal gland. I am now waiting to see an Endocrinologist to have the diagnosis confirmed.
While I wait for this appointment (7 weeks - don't believe what you hear about the Canadian health care system being wonderful), can anyone reccomend anything that can reduce the chance of having an attack or the severity of these attacks. This seems funny but I was out on the town with my girlfriends several months ago (drank copious amounts of alcohol) and danced to the point of being out of breath and sweating - and NOTHING happened. Has anyone been prescribed CNS depressants as a way to ward off attacks? I'm willing to try anything though obviously becoming an alcoholic is not an option...hahaha.
Cheers,
Bren
1 like, 36 replies
rae57893 brenda88659
Posted
I'm in Canada (Alberta) and had a pheochromocytoma diagnosis in Dec. 2013. My tumour was found a couple years before but the connection to my symptoms wasn't made because they were being mistaken for menopause. It's possible the tumour was growing for up to 10 years the doctors said. I went through the bp and heart issues, and everything else. Finally scans and urine testing and MIBG and everything. The excellent endocrinologist I was referred to fit me in within a week. He had tons of experience with pheos, and other tumours. The surgeon was amazing too and had performed many similar operations (adrenal removal with tumour removal also), and they monitored me as a team and got my blood pressure in check for surgery which was at the end of February. There were two surgeons and a whole team looking after me in the operating room. The anesthesiologist had experience with this type of surgery which was really important because of bp risks. Even though my tumour was large (6 cm) the surgery was done laparoscopically so healing was quick. Months later I'm still doing fine and am happy to be living without all those dreadful symptoms that plagued me for so long.
Do your research. Get all the tests done. Get your doctor to find a good endocrinologist for you. There are excellent health professionals out there that can take care of you, and have a lot of experience. I feel lucky to have had such great care and a positive outcome. I wish the same for you.
johnKrisp rae57893
Posted
Hi rae,
Last year 2016 in february I do a MRI scan and it's showed up that I had a 4.5 cm tumor on my left adrenal gland. I had all the symptoms before the MRI ( high blood pressure and headaches ..) so i decided to change my diet and do a body detox. I fasted 14 days and a lot of toxins were removed from my body through skin, urine and lungs - breathing. So after the 14 days fast period, I started to eat vegan. So in 1 year the tumor doesnt grow, because I did a MRI every 3 months and was still the same dimension and the symptoms disappeared. I want to know if in your case after the surgery the other gland get the functions of the removed gland. Do you still need meds ?
claire62940 brenda88659
Posted
Hi Guys,
I'm in the UK and reading your stories is like reading my life story!
I think I may have Pheocrommacytoma... my symptoms are the same; severe hypertension, sweating, shakey, lightheaded, dizzy, nausea, and a couple of days ago I noticed the skin on chest and upper back blanching (has anyone else had this?) I'm tired, when I do anything my legs and arms ache...sometimes just laughing makes me dizzy!
I'm currently waiting for 24 hr urine results.
Don't even know of I have this but it'd sure be nice to get answers!
danielle131986 claire62940
Posted
Hi Claire,
I'm in the same boat. I just finished my 24 hr urinalysis today , blood work two days ago. And have my CT scheduled for Thursday. So it'll be a week or so before I get results. I have same symptoms but Dr says pheochromocytoma is very rare and a long shot but has to rule it out. I haven't been any more stressed than usual. But everyone keeps resorting to I'm stressed. My Bp constantly goes up and down all day and I take meds when it goes high. For being only 30 I feel like something else is not right. Hope you feel better soon it definitely is hard not knowing and feeling this bad. Keep us updated when you get results !
claire62940 danielle131986
Posted
Hi Danielle,
It's crazy isn't it. I'm on 3 different meds for BP, it's still up and down. I'm 44 and looking back I've been having different symptoms for a few years but just put it down to hormonal lady stuff lol only went to Dr's in Nov cos depressed and had enough,
I hope you get sorted soon, good luck with your tests x
gayle06336 claire62940
Posted
Im in uk too.
I think i may have a pheo, but diagnosis proving difficult.
Wondered if you were any further forward on your journey?
Gayle
brittany45348 gayle06336
Posted
Just saw you posted a few days ago and I am in the same boat as you suspecting I might have a tumor. What are your symptoms and what tests have you had done so far ?
gayle06336 brittany45348
Posted
Hi Brittany,
Nice to hear from you- really didn't expect to hear back from anyone as its such an old post. You have my sympathy, as its a terrible thing to go through.
Over the last 5 months ive had the following intermittent attacks multiple times daily:
adrenaline-like surges, where im really agitated like im just about to jump out a plane or something! but during/prior to these attacks i am in no way anxious. during these attacks im really shaky and i sweat and feel faint. I get palpitations, chest pain and really short of breath. During an attack my heart rate and blood pressure 'spike', and then bizarrely return to normal, or sometimes low. Its been getting worse in that even outwith the attacks im so short of breath to the extent that i need help getting upstairs, washing my hair etc. Im barely sleeping as i get so short of breath in lying.The headaches are daily and excruciating.
My most recent symptom is left-sided upper abdominal pain/pressure, which coincides with the attacks (i.e if i bend over and it gets compressed i can feel an increase in my symptoms).
I was convinced it was a pheochromacytoma, or other endocrine like tumour (i have medical back ground myself and have done a lot of reading). However, 3X 24 hr urine tests have come back negative. Im waiting to go back to see endocrinologist in the next week or so to discuss what next.
Its hellish, just waiting and worrying. Up until 5 months ago i was a fit and healthy 30 something.
What about yourself, whats your story?
Gayle
Monkey123 gayle06336
Posted
Curious if you have lost weight and how your visit with the Dr went? I too think I have an adrenal tumor. I have lost massive amount of weight. Thank you.
heathermm gayle06336
Posted
Wondering how your tests have gone?
Heather in Australia
heathermm brittany45348
Posted
Have you managed to have any tests? What are your symptoms?
Heather.
gayle06336 Monkey123
Posted
Apologies fr late reply.
Yes im losing weight- have no appetite, feel bloated and tummy distended. All made worse by eating.
Hows things going with you?
G x
Monkey123 gayle06336
Posted
Hi Gayle,
I'm just ok. Like I go through the motions daily and I'll be good and then something triggers and all symptoms return. I'm not sure what it is? Mold? Foods? I cannot put my finger on it. I cannot gain weight and my anxiety is through the roof, burning under rib on right side, nauseated, dizzy, floaters, I sleep but not sound, lots of pressure in chest. My DHEAS and testosterone are high. I just wish I could feel better! I do function daily but it's not how I used to be and certainly not 100%. I need to get a MRI or CT of my adrenals! Hope things get better for you!
heathermm brenda88659
Posted
Interested to find this site. I am in Australia and have suspected phaechromocytoma, though initial tests have not confirmed it, and an abdominal MRI found nothing. It's come on over the last month. Most mornings I seem to have an 'episode'. My symptoms are pounding heart, spike in bp, increased heart rate, nausea/feeling really 'off' in the tummy, heat behind the eyes, ringing in the ears. Some are violent (heart rate from 60 to 120 in just 2 minutes), some come on more gradually, and some have only some of these symptoms - though always the pounding heart. Some mornings I just have the heart and the stomach. Some days this continues non-stop all day.
The first strong attack I had I really thought it was a heart attack - felt like I could die. But ECG and chest x-ray were normal, bp and heart rate not unusual by the time they were checked.
Fortunately I have found a thorough endocrinologist just 2 hours away (I'm in a small country town), and have a GP who is really pro-active. The thought that it may be months before diagnosis and there is no treatment for the symptoms is sometimes overwhelming.
heathermm
Posted
Just realised I hadn't mentioned the shaking, often violent (can hardly sit on a chair), sometimes parts of the body, sometimes whole body shaking. When I went to the emergency Dept of the hospital, thinking I was having a heart attack with the pounding, the nausea, feeling like I could die , the triage nurse seemed to think I was just having a panic attack.
I had blood taken during an episode yesterday (bp 180/97, shaking, pounding, nausea) so really hope something shows up. Today, just when I am doing a 24 hr urine collection, I am - frustratingly? - feeling the best in ages. Almost normal.
gayle06336 heathermm
Posted
Hi heather,
Apologies for late reply- notification of ur post went into my spam!
Your sx all sounds so similar to mine- even down the intense shaking. Ivlm constantly proclaiming to medics " im not having a panic attack, im nit anxious, it can come on if im just sitting watching will and grace!!" Lol
Im due to see an adrenal pathology expert next week abd ther is talk of an fmibg ( might hav mixd up few letters!) Scan which can show up a pheo if not seen on mri, ct etc.
My abdo pain, pressure defo getting worse and very much correlated with the attacks. The alpha blockers do help a bit tho.
How are you, any further forward?
Gayle xx
heathermm gayle06336
Posted
gayle06336 heathermm
Posted
Hey heather,
Good news bout MIBG scan- keep me posted. Hope you get some results.
Hopefully ill get one after the appt wit adrenal endo next week.
My 'attacks' r getting worse- bp 190/160 , pulse 126 earlier.
Getting fed up!!
Speak soon
gayle06336
Posted
Monkey123 gayle06336
Posted
By the way... I meant to mention. I had the 24 hour urine test and two came back double high and one was normal. I will find it and report which two were double. My Dr said no pheo because they should be triple. I said why do I feel like crap and they are double anc he said stress?! I have ZERO to be stressed over. I can say since all these weird symptoms started, I DONT handle stress well. I used to run two very stressful businesses and I was never stressed! Also, I don't have high blood pressure. I did When this all started but it's almost low now. I also had horrible heart palps that sent me to the Dr. they are better now. My face flushed horribly and I couldn't set still. I didn't sleep for months and months. All of this is better but the slightest stress would throw it off. I might not be dealing with Pheo but I have no doubt I have an adrenal issue of some kind? Maybe Addison's?