A new scan to detect and cure the commonest cause of high blood pressure
qmul.ac.uk
qmul.ac.uk
Your comments about C-11 are well-taken and an important caveat.
https://assets.researchsquare.com/files/rs-1179128/v1_covere...
Metomidate is a molecule (C_13 H_14 N_2 O_2) that naturally collects in the adrenal glands, and 11C-metomidate is a version where some of the carbon atoms are carbon-11, a radioactive version that will show up on PET-CT scans.
https://en.wikipedia.org/wiki/Metomidate
For reference, a PET-CT scan costs $1k-$10k in the US. Not sure how much the radioactive tracer adds.
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
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.
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.
With hyperaldosteronism, because your body retains elevated levels of sodium, it dumps potassium. The low potassiums is probably the main cause of the palpitations.
Low potassium is a marker for hyperaldosteronism.
Kudos on your quest. Let's hope medical field improves diagnosing.
Is the caffeine effect reproducible with tea or just coffee/energy drinks?
The internet has made the latter easier in a number of ways - making research easier for consumers to know what to order and interpret results, and offering COTS systems for commerce, document management, authentication, shopping carts, and inventory tracking.
I would bet that in most states, laws were less of an issue than the labs not wanting street-facing sales - same way some hardware companies only sell to distributors (i.e. street sales (and consumer support) are a pain in the ass vs curated partners).
At the time I asked why they weren't suggesting adrenal venous sampling and was looked at like I was an idiot by the resident doctor. Turns out she was the idiot. A specialist later told me they were probably too unskilled to do the adrenal sampling.
Also the cyp11 b1/b2 PCR test has existed for ages and is in the literature. Years later I had some DNA testing and discovered I have an even rarer version of PA called Familial Type 1 caused by a non stop mutation on CYP11b1/b2, hence why the adrenalectomy did nothing.
While its rarer, the test is only a few hundred dollars. To others... a pro tip: get a pre-genetic screening test even if you aren't having kids, the cost is cheap and the result might be life changing to you TODAY.
I feel an order of magnitude better since silencing the over production of that hormone and my doctor tells me that anecdotally practitioners report patients coming out of curative surgery for nodules or on dexamethasone for type 1 often report feeling like a cloud is lifted from their mind.... I can confirm this is true.
Sadly you really do need to, push, research and be your own advocate to get the best outcomes.
Is there any specific type/brand of DNA testing you utilized?
The American Heritage dictionary gives the positive, comparative, and superlative forms as common, commoner, and commonest.
What's the mistake?
I hope this mistake of correcting things that aren't mistakes doesn't become one of the most common mistakes in HN comments...
You're allowed to be rude but I am not? I don't want this to be a flame war, I want you to actually reflect on why you think you're allowed to be rude but I am not.
I wasn’t rude, because I wasn’t adressing anyone in particular — I wasn’t writing on qmul.ac.uk or in an email to the author.
You were communicating directly with me, and I found it unnecessarily rude.
Edit: oh and btw you are totally and absolutely “allowed” to be rude, it’s not something I find off-limits or the likes. Just know that I find it… well, rude.
I should probably stay off the internet for a while.
Again, my apologies.
Honestly, if venting off on the Internets helps you to go through with it — well I’m always here when you need me ;-)
I concur with GP. IME, “most common” or “most fun” is generally looked upon as better form than “commonest”, or “funnest”. The latter catches the eye and not in a good way, having as it does the ring of childishness to it. Legal, sure. Proper? Nope.
A scan that cures is therefore 'the future'.
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.
- ~50% of adult Americans have hypertension
- scanning all medication-non-responders (= people suffering from "resistant hypertension") and operating on all of them to remove the causative nodules sounds like quite the tall order
- doctors won't just suddenly start sending all the resistant hypertension patients to CTs to diagnose this cause, instead they will continue to escalate their patients anti-hypertensive medication, i.e. adding an aldosterone antagonist to the three other maximum dosage blood pressure lowering medications the patient already takes.
- this might become an option for people suffering from resistant hypertension that are receiving expensive, excellent state of the art treatment
Many of those patients will continue to have high blood pressure for other reasons (obesity, fat intake, renal impairment, god knows what else) and will need to continue their medication, maybe they will downgrade (upgrade? (-; ) from treatment resistant hypertension to normal hypertension. A significant amount of the patients receiving surgery will suffer from mild to severe bacterial infections that also need treatment.
At the top of my head I would still say yes, it would be cheaper.
ALSO and BUT: Please do not expect a treatment that is both cheaper and better for the quality of life of the patient to be chosen by default. Hospitals and doctors don't work that way.
https://costplusdrugs.com/medications/lisinopril-2_5mg-table...
When I go through my insurance with their preferred pharmacy, I don't pay anything. But according to CVS my insurance company pays $1.87 for 90 pills, so about $7/year
I like to minimize on my needed medications though. I would probably opt for this if it were available.
I understand something similar is done for Morbus Basedow / Grave's disease with the thyroid gland.
You are probably referencing "radioiodine therapy" which is highly specific to thyroid issues.
AVS is correlated using a non-metomidate adrenal CT scan anyway, so a CT-only option would be less expensive and could be performed in more facilities, making it more accessible:
> Until now, 99% are never diagnosed because of the difficulty and unavailability of tests.
And since AVS has such a low predictive success rate (63% per the study), the CT-scan-only alternative doesn't even have to be good, it just has to be about as bad as AVS.
The results of either could very well be "keep taking meds for 40 years" or "surgery helps immensely", but the real cost savings are in avoiding AVS and also potentially diagnosing and treating more people sooner.
(Also mind that the study's done in the UK, where CT scans cost patients about £800/US$1,000 even when done privately, and in Scotland/Wales/N. Ireland the meds are free to the patient. In the US, a CT scan averages about $5,000, $12,000 isn't unheard of, and the meds cost $7,000-$20,000 for 40 years.)
Integrating new techniques like this into commonly available treatment is HARD.
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.
Do we know this though? If, as the article claims, the lesions were previously hard to detect, I would guess that most people with them never get diagnosed. I have high blood pressure and I've never been examined for those lesions.
Edited for clarity
HBP costs over 100 billion $ in the US. https://www.cdc.gov/policy/polaris/healthtopics/highbloodpre....
I was under the impression that the most common cause was being fat.
" The scan found that in two thirds of patients with elevated aldosterone secretion, this is coming from a benign nodule in just one of the adrenal glands, which can then be safely removed."
So it seems that 2/3 of the cause of HBP is elevated aldosterone, but 1/20 of cases this can be fixed with a not-so-invasive procedure.
But the rest of the shortened title is straight-up hashbrowns. You are fixing a common problem with a scan? That's not how medicine works.
I've changed it to clearer language from the first paragraph.
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.comPeople will post whatever crap they eat. It tends to be very unhealthy food, and too much of it. Which normalizes eating non-food. Which affects health quite negatively.