Worried that I might have a pheochromocytoma

Posted , 4 users are following.

Hello everyone,

My name is Sean,

I have started to worry about the possibility that I have a pheochromocytoma because since December (after I had bronchitis and was on antibiotics) I started to get bad brain fog everyday and it still hasn't left me at all. I also started to get heart palpitations almost constantly (I can feel them come on really strong when lying down, not so much when I'm standing or doing something) I then went to the hospital because of my high heart rate (115) and they did and Ecg, EKG and a blood test. All came. Back normal besides a slight sinus tachycardia but I was informed that it wasn't anything To be worried about, so I was given beta blockers a low dose of bisoprolol 2.5mg taken once a day.

I then went and got my catecholamines blood test done and everything was normal, and my doctor said I don't have pheochromocytoma. But, I can constantly feel my heart beat (almost all the time)

They also performed a ct scan and x ray of my abdomen and chest. Found no abnormalities and my adrenal glands were of normal size and no tumors were found. They then wanted to rule out Gerd because I was getting some heartburn symptoms. So they did an upper endoscopy which came back normal besides two small fundic gland polyps which were benign. I had had many other blood tests done and heart examinations and they have found nothing wrong with me.

I'm scared that they are missing something and that my symptoms will get worse and worse until its too late...

My current symptoms are as follows:

Palpitations (more prominent when lying or sitting), occasional headaches but usually comes from neck pain and posture, high heart rate at rest (84BPM), fluttering feeling underneath my left rib (diaphragm area) also, I get fatigue from time to time (sleepiness) I don't have any abnormal tempature, and no sweating at all.

Any help would be really appreciated.

Kind regards,

Sean

0 likes, 9 replies

9 Replies

  • Posted

    Have you any blood test data to share?

    • Posted

      Yes, forgot to add it my bad. Catecholamines results 175mg out of blood

      Epinephrine : 0.05 ( ref range: 0.10~)

      Norepinephrine : 0.30 (ref range: 0.10 - 0.50Dopamine: 0.01 (ref range: 0.03 ~)Creatine: 0.75 (ref range: 0.6 - 1.1). TSH: 0.901 (ref range: 0.500 - 5.000).FT3: 3.91 (ref range: 2.30 - 4.00). FT4: 1.53 (ref range: 0.90 - 1.70)

    • Posted

      Also forgot to mention,

      I started to develop fasciculations almost everywhere in my body. Which prompted me to see my neurologist where I was given a weakness test and full physio neurological exam. No abnormalities or weakness found. He suggested I look at my potassium or magnesium for a possible deficiency. My last CBC showed my potassium (K) was at: "3.8 ref range: 3.5-5.1. That was performed on the 11th of February so quite some time ago. The twitches didn't start to happen until about 2 weeks ago. Oddly enough, they didn't test my magnesium levels; so I am unsure as to whether that could be a possibility.

  • Posted

    Request a 24 hour urine test. I had a Pheochromocytoma 5 years ago. This is the test that found it. but with that, that rate tumour usually causes high blood pressure and sweating profusely.

    • Posted

      I saw my doctor yesterday regarding my worries about possibly having a pheochromocytoma, and we went over my tests again, and nothing seems out of line. I don't have the profuse or excess sweating, and I get headaches but it seems to stem from my neck in which I have really bad posture. My highest resting blood pressure was 140/73

      But to give me a peice of mind she is sending me to an endocrinologist and I will do a urine test to rule it out completely. She thinks it could be a possible malabsorption or potassium or magnesium because of the twitches I have been getting

      Thanks,

      Sean

    • Posted

      I also go to an Endocrinologist.... once a year because the Pheo can return. Hope you figure everything out! Good luck on the 24 hour urine test.

    • Posted

      I'm glad you have that under control. I also just realized that I have been taking a beta blocker (bisoprolol 2.5mg) for the past 2 months and I believe you shouldn't take beta blockers until you start alpha blockers as it could cause hyperintesive crisis. So, I will be getting the urine test on Monday, but now I am really doubting I have a pheochromocytoma, with a negative CT scan and a normal catecholamines blood test. But, maybe its a thyroid issue

    • Posted

      Ya it doesn't sound like a Pheo at all. The 24 hr urine test is a pain actually... cause you have to diet 3 days before and in the 24 hour urine test period. Meaning you cant drink or eat a lot of stuff in those 4 days., like No caffeine, no juices, fruits, cheese..... and a bunch of other stuff. Hopefully they find out what's going on.

  • Posted

    Hi Sean,

    I read your forum.

    I was wondering if you every got any results?

    I'm dealing with the same symptoms and don't know where to go from here.

    Sincerely, Sheri

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.