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Possible Pheochromocytoma - Please help with any advice

Posted , 18 users are following.

brenda88659
brenda88659

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

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  • sheltielife
    sheltielife brenda88659

    Posted

    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

  • bbgrl88
    bbgrl88 brenda88659

    Posted

    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.
    • cathyblow
      cathyblow bbgrl88

      Posted

      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.

    • danielle131986
      danielle131986 cathyblow

      Posted

      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

    • Smorg0528
      Smorg0528 cathyblow

      Posted

      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 .

    • danielle131986
      danielle131986 Smorg0528

      Posted

      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.

    • marina39995
      marina39995 danielle131986

      Posted

      Hi Danielle

      Your story sounds very similar to mine, got same symptomes that started post partum

      Now i've got the urine results and all the Chatecholamines are sky high and now i'm waiting for the CT scan

      Can i ask what did your ureanalysis show? Were your chatecholamines high too?

    • brenda31807
      brenda31807 cathyblow

      Posted

      I’m anxious to hear from you abs to the   results of your tests. I’m waiting also and am very scared but can’t keep doing this. I hope the best for you and everyone or anyone who goes through this rare disease. 
    • danielle131986
      danielle131986 brenda31807

      Posted

      My CT came back normal with the exception of a few kidney stones which I new I previously had. No pheochromacytoma. At that point the endocrinologist said there was no more testing on his end he could do to figure out my blood pressure issues and I should follow up with a cardiologist. My primary said I shouldn’t and that I now just have high blood pressure at the age of 30. I wish you the best of luck and pray for answers and a positive outcome. Keep us posted 
    • gayle06336
      gayle06336 danielle131986

      Posted

      Hi danielle,

      No worries, its hard to keep track of the posts.

      Im still having the attacks daily ( my sx are in an earlier post), still unabl to work. Prior to last april i had excellent health.

      Like you, my mibg ( full body) was negative. Ive also tested negative for every other endocrine condition ( cushings, addisons etc), as well as porphyria ( shud check this out?)

      My pulse and bp are up and down constantly but its very difficult to medicate. I.e if i take meds to bring down pulse/bp then once attack subsides it gets lower and then im just as unwell with low pulse and bp.

      My tremor, slurred speech seems to b getting worse too. My whole sympathetic nervous system on overdrive!! And im not anxious ( im sure ur used to being asked this!!!)

      Really fed up, nobody seems to kno wats wrong- its really hard, so i feel for you as a fellow sufferer hun.

      Ps- im medical and iv read everything i can find, so frustrating!!

      Pps- im uk, where are u in world?

      Gayle

    • heathermm
      heathermm gayle06336

      Posted

      Hello all, Just reporting that I was declared not to have a pheochromocytoma (though attacks of high adrenaline were exactly what mine felt like) after MRI and MiBG came back with nothing. Since I started on beta blockers (atenolol) 3 months ago I have not had an attack and am now back to normal life, with BP lowering tablets as well - a big relief.  I have been seeing a counsellor as the GP decided it was 'acute attacks brought on by previous stresses/dramas in my life" but even the psychologist and another GP agree with me that it is a weird thing.  - I keep coming across people with similar symptoms who also swear they are not 'panic attacks'. 

    • gayle06336
      gayle06336 heathermm

      Posted

      Hi heather,

      Sounds exactly like my situation. I really strggled with meds tho, beta blockers partic bad. I found they worked really well to lower pulse but wen attack wud subside, id be ill for hours with short of breath, feeling faint with low bp and pulse. These symptms, albeit different are just as limiting.

      Wat betablockers are you on& are they slow release?

      Gayle

    • heathermm
      heathermm gayle06336

      Posted

      Hello Gayle,

      I am on atenolol (Beta blocker) 25 mg each night, and also amlodipine 7.5 mg in the mornings for general BP control. Apart from having an energy slump a couple of times a day I haven't noticed any side effects, and have not had an episode since starting the atenolol. Don't know about 'slow release'.

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