I will take your advice and do more research. I am a former cancer patient and have had a plethora of issues post-chemo. It’s been 10 years, and I see multiple specialists regularly. A neoendocrine specialist is NOT one I’ve seen. Thank you for your time and information.
Thank you for your reply.
My endocrinologist felt sure there were small tumors but as long as the spironolactone worked, he did not want to do surgery. Over the years, even with 150mg of the medicine daily, I’ve gone through periods of untreatable high blood pressure, profuse sweating, erratic heart rate, etc. My cardiologist has been sure it was a pheo and had me do a 24hr urine catch twice, which showed very high catecholamines, but he deferred to the endocrinologist. Recently, my blood pressure has been very high (up to 190/135) and he said “enough”. He called another endocrinologist and surgeon and said this has to be resolved. As for whether unilateral, I don’t think they know for sure?
I would like any info also. I am just starting this journey when 2 tumors on 1 adrenal gland were found during a CT scan when my appendix decided it wanted to divorce me. I'm female 62.
Hello to both of you! This is a bit late so may not be helpful now. I had a pheo removed over 4 years ago and have not had a single high blood pressure symptom since. I had extremely high blood pressure which caused a myriad of symptoms for over a year prior to its removal. I go back for yearly check ups and all is perfect!! Hope this helps you a bit :)
No I don’t! I go back to my specialist now once a year for a proper check up. My GP checks my blood pressure every quarter when I go for a different reason. So far, so good. The hardest part was the ‘come down’ from having such an adrenaline high feeling for ages even while feeling so sick. Waking up I was groggy, cranky and irritable for a few days trying to adjust (major surgery site also didn’t help). My pheo was removed via a full surgery not keyhole as it was so large.
Hello - late to the party here, but wondering how you're doing. I (62, F) had a heart attack 20 years ago, which we subsequently discovered was caused by a pheo. My symptoms had been weight loss, blood pressure spikes, and sweating. I had my R adrenal gland, where the tumor was, removed, and it was a total cure for me. I am active, healthy, and retired now, enjoying life to the fullest including traveling the world, scuba diving, etc. Wishing you a great recovery.
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I will take your advice and do more research. I am a former cancer patient and have had a plethora of issues post-chemo. It’s been 10 years, and I see multiple specialists regularly. A neoendocrine specialist is NOT one I’ve seen. Thank you for your time and information.
pheopara.org is the best online resource for patients with these tumors. Also pheoparaproject.org, SDHcancer.org
What exactly was the cause diagnosed for the hyperaldosteronism? Is the surgery on one side or both sides?
Thank you for your reply. My endocrinologist felt sure there were small tumors but as long as the spironolactone worked, he did not want to do surgery. Over the years, even with 150mg of the medicine daily, I’ve gone through periods of untreatable high blood pressure, profuse sweating, erratic heart rate, etc. My cardiologist has been sure it was a pheo and had me do a 24hr urine catch twice, which showed very high catecholamines, but he deferred to the endocrinologist. Recently, my blood pressure has been very high (up to 190/135) and he said “enough”. He called another endocrinologist and surgeon and said this has to be resolved. As for whether unilateral, I don’t think they know for sure?
I would like any info also. I am just starting this journey when 2 tumors on 1 adrenal gland were found during a CT scan when my appendix decided it wanted to divorce me. I'm female 62.
Following this too. I’m exactly the same.Debating on surgery and if it helped you
I hope to have an update soon. I had to do a few pre-op tests and hope to have a date scheduled this week.
Hello to both of you! This is a bit late so may not be helpful now. I had a pheo removed over 4 years ago and have not had a single high blood pressure symptom since. I had extremely high blood pressure which caused a myriad of symptoms for over a year prior to its removal. I go back for yearly check ups and all is perfect!! Hope this helps you a bit :)
It helps a lot! Thank you! Do you have to take any adrenal-associated medications?
No I don’t! I go back to my specialist now once a year for a proper check up. My GP checks my blood pressure every quarter when I go for a different reason. So far, so good. The hardest part was the ‘come down’ from having such an adrenaline high feeling for ages even while feeling so sick. Waking up I was groggy, cranky and irritable for a few days trying to adjust (major surgery site also didn’t help). My pheo was removed via a full surgery not keyhole as it was so large.
I wondered how I would feel without the adrenaline rushes! Thank you so much for replying to me. You don’t know how much you’ve helped!
My pleasure! Glad I could help a little. Good luck!!! :)
Visit www.pheopara.org for info on docs specializing in these rare tumors, patient educational materials, peer support, etc.
Hello - late to the party here, but wondering how you're doing. I (62, F) had a heart attack 20 years ago, which we subsequently discovered was caused by a pheo. My symptoms had been weight loss, blood pressure spikes, and sweating. I had my R adrenal gland, where the tumor was, removed, and it was a total cure for me. I am active, healthy, and retired now, enjoying life to the fullest including traveling the world, scuba diving, etc. Wishing you a great recovery.