Anyone have Primary Aldosteronism (Conn syndrome)?

Hello @maya48, Welcome to Connect. I know it can be quite unsettling and scary when you don't have all of the answers and your current treatment doesn't seem to be working. Just a heads up that Mayo Clinic Connect is an online community where patients can connect with other patients and give and get support. Mayo Clinic medical professionals do not monitor these discussions.

I also have a diagnosis of primary aldosteronism that I've had for many years. I have had high blood pressure since my late 40s but it wasn't until sometime in my 50s that I participated in Mayo Clinic heart study in Rochester, Minnesota that it was determined I had primary aldosteronism. Prior to the diagnosis I was on a combination tablet that had a diuretic and ACE inhibitor together but my insurance wouldn't pay for it so I was switched to hydrochlorothiazide and lisinopril. After the study my doctor stopped the lisinopril and started me on hydrochlorothiazide and spironolactone which I am still taking daily. I check my blood pressure daily and it normally runs around 120±/70±. It does sometimes get a little over 130/82±.

Have you talked with your doctor to let them know the blood pressure is still not responding?

Hello @maya48. Welcome to the companionship of Primary Aldosteronism tolerants. I've been dealing with hypertension for nearly 50 years and learning to live with relatively high BP readings -- because it has taken 49 years to get a PA diagnosis. Now my BP is stabilizing somewhat lower than previous decades. The improvement appears to be attributable to Eplerenone which my endocrinologist and nephrologist agreed to prescribe a month ago. My dosage is 25mg per day -- deliberately held low to avoid being overcome by Potassium (a side-effect of Eplerenone and several other hypertension medications). A few years ago, I was on Spironolactone, which was working well, but threatened side effects that I couldn't tolerate, so we settled on the following combination: Lisinopril 40mg, Carvedilol 50mg, Amiloride (diuretic) 10mg until Eplerenone was added last month. Count me as another in the harness pulling for somewhat lower BP on a daily basis. Martin

Hi Martin,
I was just diagnosed with hyperaldosteronism. I am 58 y.o. and my doctors have been suspecting that this might be the cause of my very high blood pressure which came out of the blue at age 45 (13 years ago) The big hint was that my K+ levels were also low and I struggle to maintain them even on 40 mEq/day. My aldosterone levels had been okay until about 3 weeks ago, when they went from 10ng/dL (Jan 22) to 19 ng/dL (Sept 22) and my ALDO/PRA ratio went up from 37 to 126.7. To rule out an adrenal tumor, my nephrologist ordered an MRI of my abdomen and the results were normal. So, if you know what else could be causing my hyperaldosteronism I would love to hear your thoughts. Thank you. Sue

Hi @csage1010. I have to run off right now but will dig into hyperaldosteronism in the morning and get back to you. Overnight, please think about getting examinations by a nephrologist and an endocrinologist. Both were pivotal in my diagnosis, treatment plan, and outlook for managing my hypertension. The diagnosis hinged on examination of a growth on one of my adrenal glands -- noncancerous AND (it turns out) not contributing to my hyperaldosteronism. After several years of fooling around with my BP problem, we launched our new treatment last month. Potassium has been in short supply in my system, but we think it was run off by BP medications -- which now number 5, but different ones with unique dosages derived by my endocrinologist from special examination procedures. More tomorrow after I have a chance to dig a little further into the literature. Martin

Hi @csage1010. Sorry I'm late checking back with you. My computer went on the fritz last night, and it took me most of the day to restore it to working order. I was thinking about you though, and I knew about a good source of medical information about hyperaldosteronism. It can give you a full dose of basic information about the disease, based on this key quote: "The most common symptom of hyperaldosteronism is high blood pressure (hypertension), especially medication-resistant hypertension." Starting there, the article reaches out into a wide range of information on the disease, with at least some insights on where it comes from. Check out the posting you get with the link below, then get back to me with residual questions that I can help you home in on. Some causes of the disease are vital to know about.
https://my.clevelandclinic.org/health/diseases/16448-hyperaldosteronism
Martin

Thank you!

Does anyone suffer from the endocrine disorder Conn syndrome?
It causes very high uncontrolled BP and low levels of potassium in the blood.

I have had Conn syndrome for a very long time, undiagnosed until 2 years ago.
It causes high bp, muscle aches, cramps ,twitches ,digestive issues,extreme tiredness and heart palpitations. It can be deadly if untreated and often goes undiagnosed for years, like mine.
I almost died after my Dr dismissed my low potassium as nothing concerning for me to attend the emergency room weeks later in a serious heart rhythm. I needed 2 bags of iv potassium to correct the disorder.I had to change Dr after that.!

I have all of your above symptoms except the occasional cramps and muscle twitches.
I have never heard of Conn syndrome before and have had Type 1 diabetes since 1956. I have every other thing wrong with me, so what tests did you have that diagnosed you with Conn?
I am curious.
Do you have Type ! or Type 11 diabetes, and for how long?
Malinda Flower

Hi sorry to hear you are struggling with health issues.
I was diagnosed eventually by a simple blood test called ARR.
Their are lots of conditions required such as stopping BP meds prior to the test,having the test early morning after sitting for a while for accurate results.
A ct scan of the kidney should show any problem with the adrenal gland as it sits on top of the kidney.If it is producing excessive hormones like mine was it might appear enlarged or swollen( but sadly mine was normal sized)A non malignant tumour should show provided it is a reasonable size on the scan.
No I'm not diabetic,however the condition does cause very similar symptoms (thirst,excessive urination and resistance to insulin)I was tested for nephrogenic diabetes insipidus, was neg but I had symptoms.
Hope you get some answers, Conns disease is horrible to have and totally life limiting.
Good Luck with your journey!