TL;DR - If you know someone that takes a lot of blood pressure medications and has for many years, have them see an endocrinologist and get them screened for hyperaldosteronism ( aka Conn's syndrome ).
Kind of a crazy story.
I've had blood pressure (BP) issues since my senior year of high school. 1996. Started taking my first medication then.
Since then, I've had one hospital stay, 3 ER visits, yearly checkups, all because my blood pressure is really hard to control.
I've seen 3 cardiologists and two nephrologists over these past 25 years to help me manage my BP.
I figured the high BP was because I was fat.
I think my highest bp reading ever was 210/130. I’d commonly see 170/110. Not good.
These past couple of years, my blood pressure had gotten and stayed really, really high. To the point where I was waking up with headaches. I even had a few headaches where I thought I was going to have a stroke.
Fast forward to my most recent blood pressure related ER visit ( in March ) - the cardiologist raises the dose on yet another medication. I'm like "WTF is going here? This is craziness. I can’t keep taking all of these medications.”
Really frustrated, I do my own research. I stumble upon a couple of studies citing Pheochromocytomas, a tumor on the adrenal that secretes excessive hormones which causes an elevation in blood pressure.
Then I read a Washington Post article talking about a guy on “a bucketload of blood pressure medications” that actually ends up having a tumor on his adrenal gland.
The general condition is called Hyperaldosteronism. This is the condition discussed in the parent article.
It's pretty rare - like 1/1000. You basically have an adrenal glad that secretes too much Aldosterone which drives the bodily retention of salt and water. Which in turn, chronically elevates blood pressure while abnormally dumping potassium.
At my next cardiologist appt, the Dr. basically tells me "I have nothing else for you". He wanted to increase my four blood pressure medications, again. He thought I should go back to see the nephrologist.
Given my research, I asked him for a referral to the endocrinologist. For which he annoyingly shrugs, "sure, why not. But they're usually booked way out." I get a call from the endocrinologist the following Monday. I get in right away. I mention Hyperaldosteronism. Tell them my long history with resistant hypertension. They totally agree. They setup an appointment for a blood screening.
Sure enough, the tests come back with really elevated levels of aldosterone, really low levels of renin, and really low potassium levels. All signatures of hyperaldosteronism.
They then do an AVS, a vascular sampling of the blood coming out of each adrenal. It showed overwhelmingly my left adrenal produces high volumes of aldosterone with low levels of renin. The left adrenal’s Aldosterone/renin ratio demonstrated that it was the dominant one.
Which is actually good, because then I could have my left adrenal taken out, and still live very normally with the right adrenal taking over.
So that’s how my surgery came about. My overactive adrenal has probably been a huge contributor of my elevated blood pressure, for many, many years.
The pathology report came back and they did find a nodule in my left adrenal gland, that was not visible from the initial CT scan.
https://www.washingtonpost.com/health/2022/04/23/high-blood-...
P.S. The Facebook group for Conn's Syndrome is a wealth of a knowledge and has a few really amazing members that can guide you on how to navigate getting tested (a lot of doctor's aren't necessarily aware of the condition). https://www.facebook.com/groups/652067311558303