SYMPTOMS OF ADRENALINE TUMORS

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Could some one tell me tere symptoms before they were diagnosed with adrenaline tumor please x

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  • 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

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    • Posted

      Thanks Maggie

      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

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    • 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

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    • Posted

      Hi Maggie I have seen the doc this morning and he said I have an infection but not sure were as it showed white blood cells in my bloods and urine... I have been on antibiotics for over a week cos they said I had a chest infection so I have told the doc I am not prepared to put up with all the symptoms and have told him to write a letter for me and I am going to go private for a ct scan on my kidneys and my head for the horrific headaches I still havent had the blood results back yet for the cortisole .I had amri done on my heart a few weeks ago ad they said my heart was perfect levels but I kbnow sometimes other peoples have come back ok lots of times and they still found they had adrenaline problems How are you keeping now xx
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    • 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!,)

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    • 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

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    • Posted

      Hi Maggie thanks for getting back to me ...It is a shame to have to pay but you know how long they take in the nhs to get appointments to see specialists it wasnt an MRI on my heart Maggie I meant to say it was a heart echo and they told me my heart was perfect .how often did you have bloods done  for the adrenaline Maggie and they all came back normal. just want to say thanks for your support xx
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    • Posted

      Hi Maggie I just want to let you know my blood tets have all come back ok so dont know what to do now doc said I didnt need any further treatment he is sending me for an ultra sound on my kidneys because I told him I still wasnt happy xx

       

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