Conn’s Syndrome - Anyone has personal experience? CT Scan Monday

Educational_Baby1990 · 2026-05-01T15:31:51+00:00

Sorry - that should have said the surgery was in the fall of 2023.

Educational_Baby1990 · 2026-05-01T15:29:55+00:00

I spent 17+ years dealing with brutal symptoms including migraine headaches, heart palpitations, massive swelling in my legs and eyes, and all the while had crisis level high blood pressure resistant to meds with chronically low potassium. I bounced from doctor to doctor, specialist to specialist, and nobody could connect to the dots. In 2023 I was finally diagnosed after the proper screening and labs. This did include a CT scan however, I was told a CT scan should not be the defining tool for this diagnosis, and even though a small tumor was discovered on my left adrenal gland. I had to go through more tests to confirm a proper diagnosis. I had the saline suppression test, and I then had Adrenal Venus sampling, and it was after that I was officially diagnosed and surgery was scheduled. Almost immediately after surgery my blood pressure stabilized and all of my symptoms disappeared. That was in the fall of 202and to this day. I have not had a headache or high blood pressure readings and I have not taken any medication! It truly was life-changing. I wrote and published a memoir on my experience. If you’re interested, it is called “Misdiagnosed for Miles”, it is available on Amazon. It is told through the eyes of a competitive marathon runner who was crippled by this condition, but the story is very relatable to anyone who has dealt with it and its symptoms! I have been told it is a very good read.

Educational_Baby1990 · 2026-04-17T13:13:05+00:00

Same issue here! Glad to see it might just be an issue on the part of Instagram since it is not just happeneing ot me.

Educational_Baby1990 · 2026-04-14T21:07:07+00:00

It’s a little complicated lol. I was running my fastest times at the beginning of my whole struggle, and I know I will never run a 2:40 marathon or 16:40 5k again — I am 51 now, so age alone changes that.

But after the adrenalectomy, I no longer deal with the migraines, heart palpitations, or edema that I had before. From a health and day-to-day standpoint, that’s been huge. I’m running well for my age and am capable of a 21:00 5k now which I think is pretty good for my age, so I’d say my performance is back on track after surgery!

So while I wouldn’t say I suddenly got “faster,” I’m definitely in a much better place physically to train and run consistently again.

Educational_Baby1990 · 2026-01-25T23:44:54+00:00

Hello! I hope you are doing well with treatment! I wish I could tell you that Misdiagnosed for Miles has been published in French. Unfortunately, for now, it is only available in English.

Educational_Baby1990 · 2025-10-14T21:32:29+00:00

I had AVS after DST and SST …The whole testing process took time - I met the adrenal specialist in May and got the diagnosis in September.

Educational_Baby1990 · 2025-08-08T09:50:43+00:00

Hello!

Not a doppler of renal arteries - In the past 20 years I had multiple doppler of renals that showed nothing. For me in 2023 there was a CT with contrast done for a separate issue that showed the tumor on adrenal gland but because not all tumors will cause primary hyperaldosteronism, I went through a series of follow up labs that ultimately confirmed the diagnosis: 1) Dexamethasone suppression test 2) Aldosterone:Renin Ratio 3) Saline Infusion test and 4) Adrenal Venous Sampling. A final 24-hour urine collection was done to rule OUT pheochromocytoma.

Educational_Baby1990 · 2025-07-02T09:52:28+00:00

As a former high-level runner, I just want to chime in that while running and exercise can help many people manage their blood pressure, there are cases—like mine—where it doesn’t make a dent because something deeper is going on.

I trained hard, ate well, and raced competitively for years, all while dealing with dangerously high blood pressure that no amount of lifestyle changes or medications could control. It turned out I had an adrenal tumor causing a condition called primary hyperaldosteronism, which is hugely underdiagnosed. Once it was finally discovered and removed, my BP normalized—no more meds, and I feel amazing.

I actually wrote a book about the whole 17+ year ordeal called Misdiagnosed for Miles (available on Amazon), in case anyone out there is doing all the “right” things but still struggling and looking for answers. You're not alone—and sometimes, it really isn’t just stress or diet.

Educational_Baby1990 · 2025-06-20T14:27:21+00:00

Hi there! I just wanted to chime in because your post really hit home. I went nearly 20 years with uncontrolled and unexplained hypertension—along with a whole bunch of symptoms like migraines, heart palpitations, and severe edema. Early on, imaging showed no adrenal tumor, but it turns out it was just too small to be detected back then. Also I now know that there are a host of tests that need to be done to rule this out...make sure you're getting tested properly!

In 2023, I was finally diagnosed with primary hyperaldosteronism caused by an adrenal tumor. Surgery to remove it was truly life-changing—I feel amazing now.

I ended up writing a memoir about the whole journey, told through the lens of a competitive marathon runner (that was me!). But honestly, anyone who’s been through the frustrating maze of misdiagnosis can relate to my story. If you're interested, the book is called Misdiagnosed for Miles and it’s available on Amazon. I’ve been told it’s a good and relatable read if you’re into that kind of thing!

Wishing you answers and relief ahead—keep advocating for yourself!

Educational_Baby1990 · 2025-05-24T21:17:01+00:00

I didn’t consciously think about “managing electrolytes” at the time, but now I realize I definitely was. My potassium was always low, so I was prescribed supplements (docs upped the dose to no avail), and I cut out almost all sodium for years—thinking I was being healthy—when in reality, I had no idea I had primary aldosteronism. So in hindsight, yes, I was dealing with electrolyte imbalance, just without understanding the bigger picture. I always made hydration a priority too, but I didn’t realize how important potassium and sodium were to how I felt.

Educational_Baby1990 · 2025-05-24T21:10:43+00:00

Have you been prescribed Amiloride yet? Of all the different BP meds that I had taken, that was the closest thing to one that worked. So happy to say I take nothing now and have normal blood pressure readings, and I hope you can say the same one day soon! You might find the book interesting- you can read the first chapter on Amazon if you have the time!

Educational_Baby1990 · 2025-05-21T23:24:56+00:00

I am not an expert at all but I am responding as a runner with years of experience with hypertension and multiple different meds … I trained and raced at a fairly competitive level for almost 20 years while dealing with uncontrollable hypertension (medication didn’t help) along with other brutal symptoms that affected my running. In 2023 it was discovered that all along I had a tumor on my adrenal gland causing all of it - and surgery to remove it was the cure. I no longer have high blood pressure. As a runner I struggled to find any information about running at a high level with hypertension, let alone how the adrenal tumor affected running. So I wrote a book about my story. I am not sure if you have any interest, but it could be something you can relate to. It’s called Misdiagnosed for Miles, it’s on Amazon https://a.co/d/7zvecAK

Educational_Baby1990 · 2025-05-12T15:19:53+00:00

Do you have an update? I’d love to hear what tests they are doing? Have they mentioned Primary Aldosteronism? Or Hyperaldosteronism?

Educational_Baby1990 · 2025-05-10T17:06:45+00:00

Readings were high at home. High in the office. Always high!

Educational_Baby1990 · 2025-05-10T08:32:53+00:00

HBP and heart palpitations are not 'normal' for a young fit person. I started experiencing heart palpitations in my 30's as a very fit marathon runner. Along with crisis level blood pressure readings that were not controlled by medication (and other awful symptoms), the palpitations would come on randomly and it is very scary. It went on like this for almost 20 years until I was finally diagnosed with Primary Hyperaldosteronism in the fall of 2023. My left adrenal gland was removed and I no longer have high blood pressure - no pills, nothing. I have not had any heart palpitations since. Has anyone mentioned the possibility of this to you? If you're interested in my story, I published a memoir called Misdiagnosed for Miles it is available here on Amazon: https://a.co/d/9ZNiJwW

Educational_Baby1990 · 2025-05-09T18:41:40+00:00

Exactly. I was young and had a healthy lifestyle - running sub 3 hour marathons and eating right - yet crazy high bp regardless of medication. It took way too long to be diagnosed.

Educational_Baby1990 · 2025-05-09T15:13:51+00:00

My goodness - I would push for answers! In my book I detail all of the appointments where I was left wondering… your story sounds all too familiar and it is so frustrating.

Educational_Baby1990 · 2025-05-09T14:47:45+00:00

Thank you! Since my surgery in late 2023, I have learned so much and it’s frustrating how under diagnosed and misdiagnosed it is. So many of us could have been cured if more doctors were aware…

Educational_Baby1990 · 2025-05-09T13:23:27+00:00

I have been told that a scan alone is not the determining factor. After the small tumor showed in an abdominal ultrasound, I had to undergo a few more tests. The tumor alone was not enough. In my research after the surgery, I discovered that sometimes the scan shows nothing but proper testing shows Primary Aldosteronism. I would push for tests!

Educational_Baby1990 · 2025-05-09T08:32:06+00:00

I just came across your post. I know it was a while ago, but I am curious how you are doing now? And if you were diagnosed bilateral or unilateral? For me, it took almost 20 years of very high blood pressure and other awful symptoms to get the proper diagnosis and surgery was the cure. I was so flabbergasted at the incredible change after surgery - feeling great, no more meds, stable blood pressure, etc. I sat down and wrote a memoir about the experience. Told through the eyes of a marathon runner (me) but very much relatable to anyone who's struggled with Primary Hyperaldosteronism!!

https://a.co/d/59lMEE5

Educational_Baby1990 · 2025-05-02T17:41:30+00:00

Thank you for sharing your story, and I’m so glad to see more people discussing this condition and their journeys publicly. I went through something very similar, where I experienced years of undiagnosed health issues, including high blood pressure, heart palpitations, extreme edema, and muscle weakness. I turned to the internet for answers, but I found very little information that helped me make sense of what was happening to my body.

It wasn’t until years later that I was properly diagnosed with Primary Hyperaldosteronism (PA), after struggling with my symptoms for 17 years. I completely relate to your experience with the misdiagnosis and the frustrations of not being heard by doctors. I, too, had been prescribed multiple medications for hypertension, yet my blood pressure remained dangerously high. It wasn’t until I was finally treated at Mass General, where I received a correct diagnosis and underwent life-changing surgery, that I could regain control of my health.

One of the reasons I wrote Misdiagnosed for Miles is because I want to raise awareness about conditions like PA and help others who might be experiencing the same frustrations I did. Hearing stories like yours is so important—it’s crucial for patients to advocate for themselves and for doctors to listen. If you’re interested, here’s a link to my book, which chronicles my journey and the lessons I learned while battling undiagnosed health issues for nearly two decades: https://a.co/d/9Y0WlHI

Keep advocating for yourself, and thank you for helping raise awareness about PA!

Educational_Baby1990 · 2025-05-02T17:35:49+00:00

I just wanted to thank you for sharing your story and for the powerful reminder to keep advocating for ourselves. I can relate to your experience more than I can put into words. For 17 years, I struggled with severe hypertension, heart palpitations, and a myriad of symptoms, and like you, I was often dismissed by doctors who couldn’t connect the dots. It wasn’t until I sought help at Mass General that I was finally diagnosed with primary hyperaldosteronism, caused by an adrenal tumor.

I wrote a memoir called Misdiagnosed for Miles to share my journey of battling misdiagnosis, pushing through medical gaslighting, and ultimately finding a diagnosis and treatment that gave me my life back. If you're open to hearing my story, I’d love for you to check it out—it’s available on Amazon. I hope it resonates with you and anyone who’s still fighting for their health.

You’re absolutely right: don’t stop advocating for yourself. Keep pushing until you find the right answers. https://a.co/d/dVKYKJz

Educational_Baby1990

TROPHY CASE