Conns Syndrome

[Windmill6]

Hi .Does anyone else suffer from this syndrome? Mine was a very late diagnosis and now I suffer the complications.

Seeing a cardiologist for a treadmill stress test soon

What can I expect?

[VeeWat]

I’ve heard of Conns from a British guy on forum patient.info. He found a Conns expert in Wisconsin and used to fly in once a year to see him. He attended a conference in Chicago 2019 with this doctor. If I can find this person or his email, I will let you know.

[Windmill6 in reply to VeeWat]

Thank you. I am also in England but a small town. We have no experts in this disease in this country so it would seem.!My main problem is I have had this disease a very long time,undiagnosed by my Doctors.I am now stable but suffering the complications from really high bp and really low potassium. I appreciate your help,Thanks.

[VeeWat in reply to Windmill6]

I sent you a private message

[phebamom]

Just found this posting. Hope you don't mind it is a month after you posted it. I have high BP, average early a.m. and p.m. is 180/110. Have tried several different meds. Nothing brings it down. Am on 160 of Valsartan and 50 of Carvedilol now. They don't touch it. I was finally, finally, referred to a cardiologist. Trip to ER for vertigo. CT scan found enlarged heart, dilated aorta, and fluid around heart. Echocardiogram was unremarkable except for mild dilation of aorta. The new cardiologist plans to test for arterial kidney stenosis and Conns. He is starting with a blood test for aldosterone. This high BP feels awful. I can't sleep. I can't lie down flat. I get a weird floaty anxiety that goes along with it. I am just wondering what your symptoms are with the Conns. I am 57, female, 15# overweight. I have Giant Cell Arteritis, an auto-immune inflammatory vasculitis, and Brain MRI is showing mild small vessel disease, so am guessing blood vessels are kaput.

[Windmill6 in reply to phebamom]

Hi phebamom. Thank you for contacting me! Lovely to hear from someone with same condition but horrible illness!!!It has turned my life upside down I am virtually housebound because of it!

It started with high bp that was treated lots of different medicines but not working well.Had other symptoms too such as extreme thirst digestive problems feeling anxious leg cramps palpitations. Eventually I had the blood test for aldosterone that confirmed it.2 years on it am still suffering sadly.

Are you in the UK?

I do hope you get some answers. Take care.

[phebamom in reply to Windmill6]

I am in the US. Midwest. Average daily early am and late pm BP is 180/110. BP comes down during the day but creeps back up at night. I was referred to a hypertension/kidney specialist. He just kept prescribing BP meds until he finally gave up on me. He never made eye contact and he was always writing down the wrong meds that he put me on. It was scary medicine. I saw a cardiologist two weeks ago, right before holiday. His plan is to test for kidney stenosis and Conns. I am waiting for calls from scheduling so they can schedule. They called last night while I was in the shower. OF course. I have been treated with 6 different BP meds. None work, some have awful side-effects. I was given anti-anxiety meds. They do nothing. I am slowly beginning to see a connection to a high salt meal and an increase in symptoms. My potassium only dropped low one time. I was given prescription potassium, and it brought it back up. I have an oddly swollen abdomen. I have skinny legs and arms, but a swollen abdomen. I wear compression stockings to help with leg cramps, which were awful prior to the stockings. Now they are much less frequent. I have a kind of "vibrating anxiety" feeling I get, along with dizziness. I have been in hospital ER 3 times this past two months, once for high BP, and twice for vertigo, assumed to be from taking antibiotics. I am light headed all of the time now. I rarely drive my car. I do not know if I have Conns. I sure do have the symptoms for it. I would rather it be Conns than malignant hypertension. Will post more when I know more.

[Holiday12345 in reply to phebamom]

Hi phebamom how did you get on with conns testing did you have atrial kidney stenosis? How did they test you and has it been fixed? Hope you’re well

[phebamom in reply to Holiday12345]

Hi: 16 years ago I was diagnosed with MGUS, Monoclonal gammopathy of undetermined significance. The condition is usually harmless with a low risk of becoming Multiple Myeloma. There is also a low risk, and I did not know this until recently, that the MGUS can become a condition called MGRS, Monoclonal gammopathy of renal significance. I saw a kidney specialist. My urine is loaded with protein and blood, GFR has dropped below 30. Kidney Dr. almost 100% certain problem is the MGRS. I am having a kidney biopsy next Tuesday. After that I will start chemotherapy to stop my bone marrow from making the MGUS protein. From what I have read it is a tolerable form of chemotherapy . Thanks so much for thinking of me, and for caring. I deeply appreciate it. Keep in touch and I will post more after I know more.,

[phebamom]

ps. waiting for results of at home sleep study. i also have inflamed adenoid tissue.

[Windmill6 in reply to phebamom]

Hello there, you seem to be suffering badly with all this !!!I hope you get some answers soon.

I was told that the low potassium does tend to be a later symptom of Conns. I also experienced swollen bloated abdomen,due to low potassium causing damage to muscles in tummy.Causes constipation due to low bowel tone. I suffer with this badly still.

Have you had a scan on your adrenals or blood test called ARR to confirm the disease? My scan was misleading and came back clear even though my adrenals were pumping out aldosterone.

But of course it all depends on how experienced the radiologist is in interpreting the scan.

Have you ever been prescribed spironolactone for high bp.?

This drug keeps the bp down and the potassium within normal levels after some fiddling around with the dose.

Good luck. Hope you get some answers, is not a nice illness and needs treatment before you develop cardio vascular complications.

[phebamom in reply to Windmill6]

I plan to call the cardiologist on Tuesday and request some medication for BP. I will ask if a diuretic would hurt kidneys. I was told by cardiologist the diuretic I used to be on was not potassium sparing and actually damaged my kidneys. The cardiologist was waiting to treat until records were transferred from other doctors. I also have blood and protein in my urine and blood work. I have an ultrasound of kidneys, kidney blood vessels and adrenals on the 26th, a long wait. Seems like since Covid everything takes longer. I think here in the US they have a hard time finding help, and the system seems to be overwhelmed. I also plan to remind cardiologist in Tuesday phone call that he mentioned doing blood test for aldosterone. I also have a disease called Giant Cell Arteritis. I am on a biologic for that illness, it is called Actemra. I skipped a month to see if Actemra was causing high BP, it was not. The disease causes inflammation and makes everything worse, plus I have been on prednisone for 12 years. I would not be at all surprised to learn that my adrenals were my problem. My adrenals have been through the wringer. Disease plus life trauma has wreaked havoc on my nervous system.