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
Hi Bren, I'm so sorry you are having these symptoms. I would be very careful of some of the CNS depressants, as some of them can make matters worse. I have had high blood pressure for over 30 years and the pills never made any difference. Eventually, my GP sent me to a renal specialist, as he said they know more about BP. A typical symptom of a pheo is that they don't respond to normal blood pressure pills and a beta blocker can be fatal. Look you, my BP could be normal and then all of a sudden it would shoot up and then back down again within minutes. The renal bloke did urine test for metanephrines and normetanephrines. My normetanephrines were sky high (to quote the lab) and then he did urine tests for cortisol, which again were very high. He suspected a pheo and I was referred to an endocrine man, who said it couldn't possibly be that as it was so rare! I had a scan, which showed a nodule on my left adrenal gland, but he took no notice of that.
I then paid to see a different endocrine specialist in Bristol and she insisted it wasn't a pheo and that her job was done. After that, she wrote to me GP and suggested another test called Dexamethazone Suppression test. That was done and confirmed that there was a problem with my adrenal gland producing too much cortisol. I was then sent to a third endocrine specialist, who eventually agreed that I needed my left adrenal gland removed, as it had caused Cushing's Syndrome. Do you have any purple stretch marks, or are fat around your face and body, but thin arms and legs? In the meantime my GP gave me diazepam to help relieve the anxiety and it was a big help. I had my operation on 9th May, which is over a year after all the investigations started. The histology showed that I had hyperplasia due to an enlarged adrenal gland, which was about 10 times the size of the other one. They did agree that I had Cushing's Syndrom, but not that I had a pheo, even though I am convinced it was both as I had the tremors, which Cushing's doesn't cause. My muscles are very weak due to the Cushing's, but I am getting better each day. My surgeon said it would be about 3 months before I recovered. I have been given hydrocortisone until my other gland realises it has to do the job of two.
I do hope that you get a diagnosis a lot quicker than I did, as the symptoms are dreadful.
Regards
Julia
I am a 39 yr old women from Canada. Roughly 3 yrs ago, I can remember sweating profusely. Never thought anything of it. Next, I would get light heart palpitations. Again, didn’t do or think anything of it. Next, after getting up in the mornings and starting my day, I would suddenly get a strong nauseous feeling and have to throw up. Next, I would get these really bad sharp stabbing pains in my head. I dealt with all of this for a long, long time. Finally I had enough! Went to the doctor a couple of times and I was told I was having panic attacks. That was ruled out right away. Then I was told It was nothing medical. The headaches I was told were ice pick headaches probably from stress. I had my BP taken and it was high. I was told it was just because I was nervous from being at the Dr’s. (No, I wasn’t nervous). So as more time past and I just kept getting worse and worse,I got an appt with my Neurologiost,(Cause I also have Neurofibromatosis).I told her I was throwing up almost every morning, so she told me to get an MRI done on my stomach. So in the meantime, I ended up buying a BP machine. When I would get the nauseous feeling I would take it, and wow! I was getting readings in the high 200’s over 100’s. I was actually happy to find out why I was getting sick. I went back to the Dr’s and got put on some meds for high BP.(They had to be increased cause they weren’t helping). He decided to send me to a cardiologist. (My Angel). She had me do an echocardiogram. It showed I have high heart rate. She looks me over and say’s, “There’s something wrong with you”, “your very shaky”. “This is worse case scenario, but you could have a tumor on your adrenal gland that is causing all this”. I told her that I had just had an MRI done. The results came back and there it was confirmed. A rare tumor called Pheochromocytoma. Also another tumor was found in my stomach. Have to have an MIBG to see if it’s active. Since then my symptoms have gotten worse. Spikes in BP, pain in chest, really strong heart palpitations, shortness of breath, high sugars, shaky feeling all threw my body, weakness, lack of energy (some day’s I can’t even get out of bed.) After going through all the tests, 24 hour urine test, MRI, Cat Scan, blood work…. meeting specialists, endocrinologist… I am now on new meds and feeling somewhat better. I have a surgeon who has only done this surgery once. I am having my surgery in 2 weeks. Aug 1st 2014. Getting pretty nervous. Thanks for your stories. I know mine is long, but I hope it helps.
Hi All,
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.
Hi, I just read your post and have had an identical journey however not diagnosed. I'm a Nurse Practitioner in the US but now I'm the patient. Im 55 yrs old and have basically written my symptoms off to menopause! Sweats, palpitations- even had ekgs confirm frequent PVCS and tachycardia, horrible headaches, and now for 3 months, I heave most mornings then feel ok. Now 3 weeks ago my by blood pressure shot up to 200/120, I'm on 3 agents, and still high. CT is tomorrow and starting the urine collection. Thank you for your post, I'm scared.
Hi Cathy , I too have similar symptoms and am in the process for testing for pheochromocytoma. I am a surgical tech working in the OR and all of a sudden I got hot felt weak and almslt passed out. Sent me to ER and my BP was 180/106. ( I just turned 30) Put my on Bp medication and sent me to endocrinologist. He did blood work to rule out thyroid etc etc and only thing left is this. All my symptoms seem to coincide, sweats , fast heart rate usually 102, headaches. Even the stomach pain right before I almost passed out. Everyone says it can't be this Bc it's so rare so I should know in the next two weeks when my urinalysis and Ct get done. It's very scary to go through this, I can't even stand in the shower without my heart rate shooting up over 100 and any little added stress makes my BP go even higher. Had to even take leave of absence from work now. I'm scared to be diagnosed with this but even more scared to tell me it's not this and have no clue to what's next. Need to feel better soon. Hope testing goes good for you, I go for my blood and get my urinalysis stuff tomorrow. Take care
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!
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 !
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
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 ?
Hi Cathvblow,
I'm a 55 year old nurse with a presumed Pheochromocytoma. Since January 2017 I have had acute kidney failure been diagnosed with their onset atrial fab with rapid ventricular rate , elevated blood pressure and heart rate on and off many times during every day , my 24 hour urine have had high metanephrines x3 . Elevated levels in the blood as well. I'm seeing an endocrinologist and he said it could take 8 to 10 years for the attainment to develop large enough to be found. I find this totally on acceptable. I have had a scan MIBG which was negative but they only did my abdomen for the specific part of it . From what I've learned rating on another patient forum they said that you need a pet scan in order to find out if it's located somewhere else in the body. I'm currently taking Cardura , Betapace, Losartan, Lasix twice a day, amlodipine, and wearing a clonidine patch for seven days a week, plus using clonidine 0.1 mg every four hours as needed for extreme hypertension , Eliquis for the atrial for him . Everything causes me to have a flare even the simplest things like taking a bath . It has killed my Normal very fast-paced life. I have written an email to the national Institute of health. I'm trying to find out where the best place to go for treatment and diagnosis is. If you have any suggestions please let me know .
Hi Cathy. Sorry for what your going through. Not that my story helps much but turns out I did not have pheochromocytoma, the CT of my abdomen ruled it out. However did show kidney stones but they said that wasn't causing my high BP and high HR. Basically I am 30 with primary hypertension and now take metoprolol daily and deal with those side effects. I did read tho pheochromocytoma might not present itself with symptoms until you had it for years and it grows bigger. I hope they figure it out for you soon and good luck with it all.
Hi claire.
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
Hi Gayle,
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 ?
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
Hi Gayle,
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.
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.
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.
Hello Gayle, and others on this ahead,
Wondering how your tests have gone?
Heather in Australia
Hello Brittany,
Have you managed to have any tests? What are your symptoms?
Heather.