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Phaeochromocytoma - possibility of

OxBex
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Hi all, 

So I had a few medical issues last year that resulted in two emergency hospital visits - BP 209/105, loss of consciousness, high heart rate and week long migraine. No sgn of a stroke or TIA so it basically got downgraded to a migraine and here's some blood pressure meds. 

Background,I'm 53, never had migraines until perimenopause and they came on as aura migraines. BP had started creeping up to 120-130/85 so GP was keeping an eye on it. I'd reported palpitations but all of this was basically put down to perimenopause. 

A medical colleague wasn't happy with a diagnosis of migraine and pushed me to talk to my GP again. He agreed that as I'd lost consciousness, Neurology should see me. Saw them (lovely, lovely consultant) who absolutely agreed it wasn't migraine and could see from my brain scans that I had something called hypertensive encephalopathy which had caused small vessel disease in my brain. More meds prescribed to try and reduce my blood pressure which was going up and down like a yoyo. 
He requested I have hormone blood tests done to check adrenaline etc. 

I've now seen a letter with the results of those blood tests that has been sent to the endocrinology dept of my hospital. It states that my normetadrenaline level is 1600 and is indeterminate so he's asked what should be done to exclude phaeochromocytoma as a diagnosis. 

They haven't replied yet so of course I've googled this and am now doing a somewhat controlled spiral down a rabbit hole. The symptoms sound pretty spot on although I realise it may not be this specifically. I can't find what the levels are for normal and where my levels would fall on the chart. Fully aware that endocrinology could take weeks to respond so would like to be somewhat prepared. Any advice?

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    Hi OxBex, 

    I am so sorry to hear about all these medical issues you have had in the past year - your blood pressure really went sky high too! It's good you went to see the GP again as something was definitely not quite right and it's good that they referred you to neurology. You are definitely in very capable hands now and it won't be long until you have a proper diagnosis. I hope that they will be able to rule out phaeochromocytoma - in the meantime, it's best if you can to stay away from the temptation to look things up on Google as this will inevitably make you believe - and for no good reason - that you are dealing with the worst possibility and you will easily convince yourself that you are displaying all the symptoms when these could also be linked to something else. So looking things up on Google only serves to drive ourselves a bit mad and leads to more questions than answers and increased uncertainty and anxiety. 

    I am not sure what the levels should be - perhaps you could ring your GP to try and find out? Waiting weeks for a diagnosis can be nerve racking  and I can understand why you feel like you would like to be prepared for what may happen and I hope that you will hear from other members of our community who have experienced something similar and who can offer insights based on their individual experiences. Try if you can in the next few weeks, as you are waiting for answers which seem to take an eternity to come, to keep busy and distracted doing things you enjoy, to concentrate on something else if you can and I thought I would share with you these helpful tips to help you cope while waiting for important news. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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