Anyone have Primary Aldosteronism (Conn syndrome)?

Anyone else struggling with Hyperaldosteronism or Conns syndrome. Sadly ,now due to complications I have permanent heart problems,digestive problems and intense muscle pain.I have started on low dose Nortriptyline for the pain.
If only my Drs had been better informed, I wouldn't be suffering like this! Every test under the sun except the ARR blood test!!!
They thought I was making up my symptoms as I was a health care professional and tried to treat me for a mental illness!!!!

In 2022 I suddenly started having high BP -always had very low BP), fatigue, sense of thirst, frequent urination, all the good stuff. For 2 years, doctors at UCHealth (where I was being treated for breast cancer) claimed it is my anxiety + reaction to therapy. In 2024 a good cardiologist suspected PA, and after all tests I was diagnosed with PA in Feb. 2024. CAT scan found no tumors, and I have postponed AVS until I speak with a nephrologist too. 100mg Spironolactone daily: fixed potassium levels, no high blood pressure, all good with urination etc. My limited experience gives me the impression of most specialists are still in the dark about the disease (so, not comprehensive testing or medical exploration), and insurance companies are happy to oblige. Good luck with your journey, and I wish you the best.

In 2022 I suddenly started having high BP -always had very low BP), fatigue, sense of thirst, frequent urination, all the good stuff. For 2 years, doctors at UCHealth (where I was being treated for breast cancer) claimed it is my anxiety + reaction to therapy. In 2024 a good cardiologist suspected PA, and after all tests I was diagnosed with PA in Feb. 2024. CAT scan found no tumors, and I have postponed AVS until I speak with a nephrologist too. 100mg Spironolactone daily: fixed potassium levels, no high blood pressure, all good with urination etc. My limited experience gives me the impression of most specialists are still in the dark about the disease (so, not comprehensive testing or medical exploration), and insurance companies are happy to oblige. Good luck with your journey, and I wish you the best.

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

This seems like a good discussion of Aldosteronism (Conn’s syndrome), which I suspect that I have, but have never been diagnosed. For the last three weeks I’ve had persistent right-sided flank/back pain that’s worse when lying down at night, and it is getting worst, along with my long-standing hypertension that’s been difficult to control I suspect that I might have Aldosteronism. But I was wondering if others have had a similar pain. It appears to be pressure in my retroperitoneal space along the right side of my lower back and seems to be caused by an increased fluid pressure when I lay down at night building in the lower back, flank and now the lower abdomen on the right side. I must sleep upright, as I can’t sleep laying down because the pain builds up. I have no signs of kidney failure, nor trouble urinating, and the pain is not as intense to suggest kidney stones. I’m going to see a doctor tomorrow, but a couple years ago I investigated it because of my hypertension. My ARR and potassium levels were normal about two years when I last checked. I’ve been put on six different hypertension medicines (Lisinopril (ACE inhibitor), Losartan (ARB), Metoprolol (beta blocker), Terazosin, Hydrochlorothiazide (high dose), Amlodipine and none of them so far have controlled or even lowered my blood pressure, which often around 130–150 / 90–110 despite treatment. I’ve also suffered from many side effects of these medications, right now I stopped taking my Hydrochlorothiazide this week, and noticed no difference in my BP and only take Amlodipine, because I suspect that the high dose of Hydrochlorothiazide was increasing my renin, and making the ARR blood test not conclusive.
I’m an active 51-year-old. My blood pressure is highest after I eat and tend to be very sensitive to salt. I’m on a very low sodium diet. My question, for those of you diagnosed with Aldosteronism, have you suffered from pain in the lower back and flank area around the kidney? Did your adrenal gland tumor cause discomfort and pain? I have no symptoms of Cushing’s, or kidney issues. I suspect that the discomfort and pain is caused by a tumor in my adrenal gland, but I don't know. Has anyone had similar pain? Thanks!

This seems like a good discussion of Aldosteronism (Conn’s syndrome), which I suspect that I have, but have never been diagnosed. For the last three weeks I’ve had persistent right-sided flank/back pain that’s worse when lying down at night, and it is getting worst, along with my long-standing hypertension that’s been difficult to control I suspect that I might have Aldosteronism. But I was wondering if others have had a similar pain. It appears to be pressure in my retroperitoneal space along the right side of my lower back and seems to be caused by an increased fluid pressure when I lay down at night building in the lower back, flank and now the lower abdomen on the right side. I must sleep upright, as I can’t sleep laying down because the pain builds up. I have no signs of kidney failure, nor trouble urinating, and the pain is not as intense to suggest kidney stones. I’m going to see a doctor tomorrow, but a couple years ago I investigated it because of my hypertension. My ARR and potassium levels were normal about two years when I last checked. I’ve been put on six different hypertension medicines (Lisinopril (ACE inhibitor), Losartan (ARB), Metoprolol (beta blocker), Terazosin, Hydrochlorothiazide (high dose), Amlodipine and none of them so far have controlled or even lowered my blood pressure, which often around 130–150 / 90–110 despite treatment. I’ve also suffered from many side effects of these medications, right now I stopped taking my Hydrochlorothiazide this week, and noticed no difference in my BP and only take Amlodipine, because I suspect that the high dose of Hydrochlorothiazide was increasing my renin, and making the ARR blood test not conclusive.
I’m an active 51-year-old. My blood pressure is highest after I eat and tend to be very sensitive to salt. I’m on a very low sodium diet. My question, for those of you diagnosed with Aldosteronism, have you suffered from pain in the lower back and flank area around the kidney? Did your adrenal gland tumor cause discomfort and pain? I have no symptoms of Cushing’s, or kidney issues. I suspect that the discomfort and pain is caused by a tumor in my adrenal gland, but I don't know. Has anyone had similar pain? Thanks!