Posted , 2 users are following.
Could some one tell me tere symptoms before they were diagnosed with adrenaline tumor please x
0 likes, 8 replies
Posted , 2 users are following.
Could some one tell me tere symptoms before they were diagnosed with adrenaline tumor please x
0 likes, 8 replies
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maggie34838 joycemadine
Posted
Hi Joyce, I had 2 years of being treated for atrial fibrillation. Initially when an episode started I had horrendous symptoms - feeling dizzy, nauseous sometimes dry retching, sometimes a terrible headache for a few minutes caused by my blood pressure soaring up then within a few minutes plunging down. I could do nothing for an hour but just lie down. None of the pills for AF
helped and I felt quite desperate until, by chance I was diagnosed with Bilateral Pheochromacytomas in December 2016. Last March I had an operation to remove them and have been fine since.
Hope this helps, if you have any other questions I'm very happy to answer. All the best Maggie
joycemadine maggie34838
Posted
I have the same symptoms you have ,they are going to do a blood test next week will that show anything. I am glad you got sorted out ,how did they find out you had Pheochromacytomas
hope you are ok xx
maggie34838 joycemadine
Posted
I was much worse in Dec 2015, went to A&E several times where they found I had an infection somewhere. Finally my GP wondered if I had appendicitis so they did an x ray which showed I had been bleeding from my adrenal glands (was on warfarin for my AF)It also showed 2 tumours on the adrenals. So then they began testing to find out what they were, it's not an operation to be done lightly so they wanted to be sure. It depends what they tested for in your blood test, a plasma free metanephrine blood test is 99%accurate for pheos.I also had several 24 hrs urine tests for the same thing which are 84% accurate. I had bilateral tumours, which is very uncommon and one was large so it was a risky op and I also lost my spleen during it due to uncontrolled bleeding. But I recovered quickly, was only in hospital a week and soon got used to being on lifelong hydrocortisone etc. All my heart symptoms disappeared and I now feel normal again, I'm just sorry it took them 2yrs to find out what I had! Take one step at a time but keep at them to do the tests and ask them what the results are. It is a rare condition so if you Google it you'll probably know more than them! You need a good Endocrinologist and Surgeon if you have a pheo.I know how awful the symptoms are if you're the same and for me there was a solution so you will find one yourself too. Keep in touch Maggie
joycemadine maggie34838
Posted
maggie34838 joycemadine
Posted
Gosh that sounds exactly like me! I showed infection in blood but no real signs anywhere. What a shame you have to go private for CT scan, wouldn't your Dr consider you might have a pheo and need this checked out. Can you find out how long the blood results will Be? My horrific headaches were the pheo shooting out huge amounts of adrenaline. Over the previous 2 years of this happening I was diagnosed with a heart attack, had an angiography which showed nothing. Then they decided I'd had a Takatsubo (brokenheart Syndrome!,)
maggie34838 joycemadine
Posted
Sorry went before I'd Finished! They also operated on my heart (Ablation)- they burn areas to get rid of the irregular beats. Of course it didn't help because it was all due to my pheos
I do hope you get it sorted soon. I'm absolutely fine now. Let me know how it goes, I found doctors can be so one eyed, they decide it's your heart or chest infection and don't want to look further. All the best Maggie
joycemadine maggie34838
Posted
joycemadine maggie34838
Posted