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A new scan to detect and cure the commonest cause of high blood pressure

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Re: A new scan to detect and cure the commonest cause of high blood pressure

#41
I had my left adrenal gland taken out in September.

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

Re: A new scan to detect and cure the commonest cause of high blood pressure

#42
post #7

For those who may not have access to this treatment, an alternative is to add the following to /etc/hosts: 127.0.0.1 facebook.com 127.0.0.1 www.facebook.com 127.0.0.1 twitter.com 127.0.0.1 www.twitter.com

Bad joke. Social media can not cause chronic hypertension. It's physiological.

Re: A new scan to detect and cure the commonest cause of high blood pressure

#43
post #16

Earlier quoted context omitted.

Yes, that happens sometimes. I've changed it to clearer language from the first paragraph.

The current title is also wrong: it's not a CT scan, but rather a PET/CT scan (with the emphasis on the PET, which requires injection with a radiotracer).

Ok, maybe it's safest to just drop the CT. Thanks!

Re: A new scan to detect and cure the commonest cause of high blood pressure

#44
post #41

I had my left adrenal gland taken out in September. 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 on…

Glad you got it figured out and solved! I hate it when doctors refuse to listen to you.

Re: A new scan to detect and cure the commonest cause of high blood pressure

#45
post #41

I had my left adrenal gland taken out in September. 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 on…

And what happened? Did your blood pressure return to normal? Did the years of medication have any permanent side effects?

Re: A new scan to detect and cure the commonest cause of high blood pressure

#46
post #41

I had my left adrenal gland taken out in September. 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 on…

Glad you got it figured out and solved! I hate it when doctors refuse to listen to you.

It's strange how much difference a year can make.

I went from taking four BP medications, feeling like I would have a stroke in the next year and would probably die.

To now - I'm on a single BP medication (lisinipril), I've lost 40 pounds (Mounjaro), and am optimistic about my long term health.

Re: A new scan to detect and cure the commonest cause of high blood pressure

#47
post #41

I had my left adrenal gland taken out in September. 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 on…

And what happened? Did your blood pressure return to normal? Did the years of medication have any permanent side effects?

I still take one BP medication - 40mg of Lisinopril. My blood pressure numbers are much more "normal" - usually around 135/85.

I seem to be caffeine sensitive in general. On days where I drink caffeine, my BP is ~15 points higher on the systolic side. It lasts the entire day. I may be a slow metabolizer.

I've had a ton of anxiety over the years that seems to have vanished with the adrenalectomy. I was always on edge - like I could jump out of my skin. And after the operation, that has vanished.

When I had the hyperaldosteronism, I started to experience these "thunderclap headaches" - where I would suddenly get a super-intense headache on the verge of a stroke. They were awful.

Those have gone away as well.

Re: A new scan to detect and cure the commonest cause of high blood pressure

#48
post #3

Can someone who knows more about the field to comment on whether this is as revolutionary as it sounds?

Radiologist.

It’s cool, it’s a nice study. The article definitely over hypes the “common cause of hypertension”. These lesions are rare. Most people with high blood pressure have it because of metabolic disease/chronic stress/lifestyle, and it can be managed with changes to diet exercise and meds.

It is true that doing adrenal vein sampling is hard and not always successful. Having a protocol that can non-invasively detect these lesions may save some people a procedure.

Re: A new scan to detect and cure the commonest cause of high blood pressure

#49
post #47

Earlier quoted context omitted.

And what happened? Did your blood pressure return to normal? Did the years of medication have any permanent side effects?

I still take one BP medication - 40mg of Lisinopril. My blood pressure numbers are much more "normal" - usually around 135/85. I seem to be caffeine sensitive in general. On days where I drink caffeine, my BP is ~15 points higher on the systolic side. It lasts the entire day. I may be a slow metabolizer. I've had a ton of anxiety over the years that seems to have vanished with the adrenalectomy. I was always on edge…

With the anxiety did you also have palpitations or arrhythmia? I'm having a similar problem.

Re: A new scan to detect and cure the commonest cause of high blood pressure

#50

I wonder if US healthcare with its profusion of CT scanners can drive down long term patient treatment costs faster with their greater installed base.

I don't know about that. I currently need an MRI and the earliest appointment I could get was 4 weeks out, and that's not at the closest facility (they are nearly two months out). Maybe CT scans are faster.

Radiologist.

Depending on the protocol, CT scans usually take anywhere from 5 seconds to 10 minutes (in the longer scans most of that is waiting after contrast injection).

MRI studies take a long time to acquire data, usually at least 20 minutes for very short/limited studies. More involved protocols can take hours. Patient throughput is slower.

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