Testing for Pheochromocytoma

I am in my mid 40's. For a while,  I believe I have had peri-menopausal symptoms. Palpitations, sudden sweats, sudden nausea that comes on severely but passes again within an hour. Strange symptoms. 
I made an appointment with the GP to discuss this. It was here that my BP was first recorded as high.

From there, it has been monitored and definitely fluctuates between high and normal range. The next thing I'm being asked to do two 24hr urine collections. No explanation as to why, but I assume it's to check my kidney function. I'd discussed with the GP about my Dads history of hypertension and kidney failure. So, this was my automatic assumption.

Then, I foolishly looked on my NHS app at my health records, and I read it in there. "Complete 2 x 24hr urine collections to rule out Pheochromocytoma."

Obviously, I had no idea what that meant, so I googled it. All of sudden, my symptoms made sense. Where the GP and A&E doctors couldn't understand why or how my blood pressure was sky high one minute and normal the next. Why these nausea spells start from nowhere and then disappear again. Why I have palpitations and yet no ECG or echo can find a cardiac cause. 
I don't want it to be that. But I'm scared. My Dad had multiple cancers. I took my first urine collection into the GP surgery this morning, and felt anxious all day following that. I am doing the second collection this coming weekend. I just want it done and over with. I want to be told my tests are normal or be diagnosed and treated. I didn't sleep last night for worrying about it all. 
I feel a fraud joining this cancer forum. I haven't even been told it's a possibility. I have these feelings of anxiety and doom because of my Dad's death and all his illnesses leading upto it.

I've started with a new symptom last week. Burning under my ribs in my upper stomach. This isn't heartburn or indegestion that I've known before. It doesn't hurt. It almost feels like, and it comes on suddenly like my other symptoms, someone has put a hot water bottle against my skin, but on the inside. It's just there, I can feel it. But it isn't painful or particularly uncomfortable, it's just there. It started last week while I was at work. It lasted about 30 minutes and then vanished again, now it comes and lasts longer each day. I had it during the night last night. And obviously during the night everything seems worse, seems scarier. 
 

Can anyone relate at all? I probably sound like a right fruit loop!

 

  • Hello Anna-Sue92,

    I'm sorry you've been feeling this way. It's important to update your doctor of any new symptoms, if you haven't already. It's important that you feel informed whenever you leave an appointment so if you have any questions writing them down and taking a notepad with you can help. If you'd like more information on phaeochromocytoma, you can here. It mentions that this will usually be non-cancerous. Please bear in mind that, while it can be tempting to look for answers on an online forum, this can end up increasing anxiety rather than making you feel better. And the only person that can diagnose you is your doctor.  

    I hope this is helpful,

    Moderator Anastasia 

  • Hey Anna-Sue 

    i just wondered how you got on with this? I was asked by my gp

    to start monitoring my blood pressure (randomly) was consistently giving high readings, had an ecg - normal. Bloods - normal, gave a 24 hour urine sample yesterday and had a call

    today for a ct scan on Monday morning. I have no symptoms apart from high blood pressure which I'm finding strange. Hoping it's nothing tbh x 

  • Hi Anna-Sue92

    hope you've got everything sorted by now but wondered how you were? 
    I'm currently going through something similar. I've had blood tests and I believe they were testing plasma metanepherines, these levels have came back elevated, so indicative of pheochromocytoma, I also have NF1 which increases my possibility of this. Blood pressure was high at my last check hence the need for blood tests.
    my appointment with endocrinology was meant to be yesterday but cancelled and rescheduled for this Wednesday.  To say I am totally scared by this doesn't come close!