Anyone have Primary Aldosteronism (Conn syndrome)?

Hi @florentina99 and @linda1970, merged your discussion about primary aldosteronism (Conn syndrome) to this recent topic of the same name:
- Anyone have Primary Aldosteronism (Conn syndrome)? https://connect.mayoclinic.org/discussion/hypertension-by-aldosteronism/

I did this so you and other members like @maya48 @csage1010 @predictable @johnbishop into the same virtual space.

Hi @florentina99, I think I was probably more fortunate than most because my Primary Aldosteronism was diagnosed during a Mayo Clinic heart study when I was in my 50s and had high blood pressure being treated with different BP meds. The study was a month or so long where I had to spend a couple of overnights in a local hospital and also had to pick up meals at the hospital to take home with me for a specific diet they wanted me to eat. When they determined I had Primary Aldosteronism, they changed my BP meds to 25 mg hydrochlorothiazide and 25 mg spironolactone which has done a good job of regulating my blood pressure.

Do you have to take medications other than the IVs?

Hi. I am taking spironolactone cut in half so 12.5 dose,atenalol at night as I have palpitations and meds for osteoporosis too. Don't have iv potassium anymore as it's stable on the spironolactone. I'm based in UK things are very slow to sort here!
The long term effects of delayed diagnosis are horrendous. I'm struggling to leave the house now,,fatigue and exhaustion all day.
I was once a experienced walker so massive change to my life.

Hello Maya.
Interesting post .Did you ever take spironolactone for your condition ? Is much better drug at holding BP levels down.
Why did you have left adrenalectomy if it is bilateral disease?

My experience is somewhat different in important respects. Primary Aldosteronism was an accurate but belated diagnosis, thanks to my nephrologist and endocrinologist who weighed in after several years of treatment for hypertension by specialists in other branches of medicine. Spironolactone was my favored medication a few years ago, but I had to drop it because of its known ability to aggravate Gynecomastia (male breast growth) which affected my father and resulted in a genetic vulnerability to breast cancer. Three young women in my father's family tree inherited his genetic variant and were treated for breast cancer. Clearly, Spironolactone was an unacceptable risk for me. After several years of treating my hypertension with a variety of well-known medications, tests last year showed that aldosteronism was an important factor. Eplerenone was prescribed and appears to be effective in helping to control my hypertension, although we're still in a low-dose trial of only 25mg per day. This caution arose because of my inherited kidney problem of sloughing off potassium, which had been addressed with a potassium-sparing diuretic (Amiloride) for several years. Since Eplerenone also has diuretic impacts, my medical team is concerned that it might supplement my regular diuretic and increase potassium in my system, leading to hyperkalemia which can be a severe condition. So far, that has not been a problem, but a decision to increase the dosage of Eplerenone has been delayed until a balance in potassium is documented as enduring later this year. As to the cause of my Primary Aldosteronism, I have a tumor on one adrenal gland, but after several years of watching it and testing it, my medical team believes its impact is small enough that surgery is not necessary because Eplerenone is a sufficiently effective medication in my case. Martin

Hi Martin.
An interesting journey to your diagnosis.
How long did it take to be diagnosed with P.A .?
What type of scan do you have to check adrenal tumour progress?
Is there a genetic link?
My late mother had high BP and towards the end of her life low potassium levels.
She told me that kidney problems affected her parents too, I often wonder if this was a mis diagnosed adrenal condition?
Best wishes.

Hi, @florentina99. My adrenal tumor was uncovered in 2008 but the diagnosis of PA was confirmed last year. The tumor was seen on both MRI and CT screens a half dozen times over those 14 years, usually in connection with my epithelial bladder cancer. My genetic diagnoses focused on the possibility of breast cancer but not on my adrenal tumor. My nephrologist diagnosed my hypokalemia as the result of Liddle Syndrome in which the kidneys sloughed off potassium (and distracted us from the possibility of PA caused by the adrenal tumor). Sounds like your mother's hypokalemia might have been a condition independent of her adrenal glands as it often is. I hope Eplerenone will resolve your HTN, although I can't yet say it has fixed mine. Martin

Hi Martin.
Thank you for your reply.
We thought my mother's hypokalemia was due to poor diet as she ate lots of tinned foods.
My diagnosis was also delayed .
I was having some strange urine tests( blood+protein) but normal kidney ct.
I was referred to a nephrologist who diagnosed thin basement membrane disease,is an insignificant condition requiring no treatment.
This distracted us from the correct diagnosis but I do believe at that time my potassium was near on normal.
It was much later it started to drop although my Dr at the time remained unconcerned.
Just before Christmas in 2019 I had another bout of hypokalemia, Dr said no treatment just eat potassium rich foods( but I did anyway)!
Anyway things worsened and I thought I was dying.! Was having heart palpitations, severe dizziness ,bloating ,thirsty all day,extreme fatigue.
Took myself to emergency room just after the new year.
Had to stay in hospital overnight for 2 bags of potassium to be infused iv,was now severly hypokalimic.
Had something showing on the ecg,which caused concern.
Never felt OK since then.
So glad I didn't listen to that Dr!!
Strangley enough all tests done after that ecg.bloods,scans etc came back as normal.
BW
Florentina

Hi Sue, I am 65 years old and 2 years ago I was diagnosed with hyperaldosteronism had all of the classic symptoms of the disease.
Strongly enough my ct scan of my adrenals was normal but a very high ARR blood test convinced my endo I was hyperplasia.
I am based in the UK..
Very few Drs here know how to treat and manage complications from hyperaldosteronism.

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!!!!