Pheochromocytoma sufferers: advice/info/thoughts needed.

Posted , 2 users are following.

Hi All,

I'm hoping for advice, info or thoughts from any of you who have been diagnosed with pheochromocytoma.

I'm a 53 year old woman with a history of arthritis and previously breast cancer (all clear now). During my investigations for the breast cancer (2017) the radiologists found a small adrenal adenoma which they said was nothing to worry about as I had no symptoms.

Up until my mid 40's, I had always had very low blood pressure, 80-90/40-50, worried many a GP over the years. Since menopause it has been gradually going up but over the last 18 months/2 years I have been having intermittent high blood pressure. I know its high because I work in a hospital so can check it. I can tell when its high as I get pressure in my head, dizziness and a whooshing/pulsing sensation inside. The highest I've noted it at was around 190/110. Unfortunately it is always 'just' below treatment level (140/90) when I go to the GP ....... until today! 170/98 twice, leading to GP starting me on lisinopril. I have a fantastic pulse 50's to 70's at rest but do feel like I'm having palpitations at times.

I also get headaches that were lasting a few days but lately seem to last 7-8 days and are becoming more frequent, every week or two now. I have suffered from severe sweating for about 10 years which has been put down to peri-menopause then full menopause by GP.

Due to the horrendous sweating (my head and face drip with sweat and my whole body gets wet and clammy), the increasing BP and headaches and the fact that I have a known adrenal mass do you think it would be reasonable for me to ask for blood or urine tests for pheo?

Sorry for the long post. I just worry that I'm being an hypochondriac.

Cheers

Michele

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1 Reply

  • Posted

    I notice nobody has responded here and I wonder if you finally got the tests?

    Pheos and paras can be linked to various genetic mutations that also cause breast cancers. I think the fact you had a problem with your adrenal gland before it is expected to be worried about. I think you have every right to get your other adrenal gland checked again. Not just pheos cause those symptoms. High cortisol from cushings and other rarer adrenal problems can cause those symptoms. So yes definitely get them checked.

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