Hyperaldosteronism

Posted by bjfons @bjfons, Jul 21, 2022

My son in Milwaukee had a blood pressure of about 250 and doctors were thinking that he may have Conn's Syndrome or hyperaldosteronism. They have done cat scans of his glands and put him on medicine to lower his BP. They say all is OK and he should just stay on meds. He is still having symptoms like mood swings, fatigue, muscle aches and excessive urination and I'm wondering if he can have a second opinion from the Endocrinologists at Mayo.

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bcoressel | @bcoressel | Apr 21, 2023

In reply to @colleenyoung "@bcoressel, I moved your question about hyperaldosteronism to this existing discussion of the same name: -..." + (show)

Yes I am. I also started taking spironolactone for the hyperaldosteronism

Dawn, Alumni Mentor | @dawn_giacabazi | Apr 22, 2023

In reply to @bcoressel "How did they find out for sure which adrenal gland was causing the hyperaldosteronism?" + (show)

I had an adrenal vein sampling or also called an AVS.
Thanks
Dawn

Dawn, Alumni Mentor | @dawn_giacabazi | Apr 22, 2023

In reply to @bcoressel "Has anyone been diagnosed with Hyperaldosteronism and how are you being treated for it? My bp..." + (show)

Hello!
I have primary hyperaldosteronism, severe labile resistant hypertension for which I take four different blood pressure medicine. Seven years ago I had an AVS (adrenal gland sampling. This test revealed my right adrenal gland was over producing aldosterone. After further testing discovered I had a mylipoma (tumer) in the right adrenal gland. I have seen about a dozen doctors with all saying wait and see if it grows. I am now diabetic, can barley walk due to severe muscle cramps. Lots of ER visits. Everything had been slowly progressing until end of December. My pharmacy messed up and gave script for wrong dose of medicine. I normally takes 25mg tables of hydralazine but they gave me 100mg tablets. After that the tumor went crazy. Triple production of aldosterone and tumor doubled in size. But now it is diagnosed as a pheochromiocytoma. I am scheduled to have the adrenal gland removed on 5/3.
Thanks
Dawn

florentina99 | @florentina99 | Apr 26, 2023

Hello, I too have Hyperaldosteronism and unlucky to be in UK where no one knows how to manage this illness.
I've seen a cardiologist recently who assures me my complications are nothing to do with his speciality!, it's a never ending circle of being passed on from different doctors meanwhile I'm getting weaker, more ? Muscle pain and palpitations at night.

bcoressel | @bcoressel | Apr 26, 2023

There is a medication called Aldactone which is used primarily for hyperaldosteronism.

Dawn, Alumni Mentor | @dawn_giacabazi | Apr 26, 2023

In reply to @florentina99 "Hello, I too have Hyperaldosteronism and unlucky to be in UK where no one knows how..." + (show)

Hi Florentina,
I'm curious if they have looked for an underline cause, CT scans, Hormone levels, etc. Have you seen a endocrinologist? What complications have you experienced and does anything help with relief?
Hugs
Dawn

Dawn, Alumni Mentor | @dawn_giacabazi | Apr 26, 2023

In reply to @bcoressel "There is a medication called Aldactone which is used primarily for hyperaldosteronism." + (show)

Generic brand is spironolactone.

florentina99 | @florentina99 | Apr 27, 2023

In reply to @dawn_giacabazi "Hi Florentina, I'm curious if they have looked for an underline cause, CT scans, Hormone levels,..." + (show)

Hi, a long and complex journey to eventual diagnosis, took about 10 years.
Seen an endo but is diabetic specialist not PAH.
I am left with abdominal pain especially after eating anything ,pain in between shoulders,dizziness, extreme fatigue and tiredness,also recently noticed pain in temples at end of day and changes in vision.
This is a horrible disease.

florentina99 | @florentina99 | Apr 27, 2023

In reply to @dawn_giacabazi "Generic brand is spironolactone." + (show)

I am taking spironolactone which is controlling my BP and potassium now, but a very long journey to diagnosis.Drs here in UK haven't a clue how to manage this.
It would seem the complications were flagged up first before disease diagnosed,abdominal pain,limited eating and bloating probably caused by severly low potassium levels which my Dr simply ignored as all in my head!

Dawn, Alumni Mentor | @dawn_giacabazi | Apr 27, 2023

In reply to @florentina99 "I am taking spironolactone which is controlling my BP and potassium now, but a very long..." + (show)

Have any of the doctors looked for adrenal tumors? If the adrenal tumor is overproducing aldosterone, then you may have a disease called primary hyperaldosteronism, also called Conn's Syndrome (Conn's tumor) after Dr. Conn, who first described this disease. The signs and symptoms associated with Conn's Syndrome (primary hyperaldosteronism) include low potassium in the blood (causing frequent urination), muscle cramps and heart palpitations (feeling your heart racing). High blood pressure is also associated with excess production of aldosterone (Conn's Syndrome). If you ever have high blood pressure and low potassium, you should definitely be investigated to make sure you don’t have an aldosterone-producing adrenocortical tumor.
Praying for you,
Dawn