Patient Comments: Hyperkalemia - Diagnosis

Was your doctor able to quickly diagnose your hyperkalemia, or was it difficult to hone in on the disorder?

Comment from: newsjunky, 75 or over Female (Patient) Published: May 20

I was taking spironolactone (50 mg) and started getting dizzy, passing out, was weak and nauseated, and had no appetite. Sometimes when I started to walk, my knees would start a jerky dance-like movement, causing me to fall. I lost more than 30 pounds. My nephrologist and family doctor didn't seem concerned. I had regular blood tests, but they did not check my potassium levels. Fortunately, my arthritis doctor checked it and became very alarmed. I feel like she saved my life. When I stopped the meds it took a while, but now I feel back to normal.

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Comment from: gina, 35-44 Female (Patient) Published: March 30

I have been on spironolactone, metformin, and lisinopril for years and on march 1st started feeling BAD symptoms went on until March 8th when I just could no longer walk, eat, hold my hands up, drink, starting having problems going to the bathroom and when I was admitted to the hospital my kidneys had already shut down, my EKG showed a heart problems and my potassium level was 8.9, the ER doctor told me I was lucky to be alive and my doctor told me he had NEVER seen anyone live through a potassium level that high! I was in CCU for 4 days and the hospital another day!! I truly am lucky to be alive, now my heart is fine, thank goodness!! But I am still having some problems with my kidneys.

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Comment from: bevvs, 65-74 Female (Patient) Published: May 13

I spent a whole year just not feeling good. I was so fatigued I could only stay awake at most three hours at a time. All I wanted to do was sleep. Also I had muscle ache and weakness, loss of appetite, and I filled up with an abnormal amount of fluid which caused an abnormal amount of weight in a very short time. My doctor asked why I wasn't losing weight if I had no appetite and I pulled up my pants legs and showed him how swollen my legs were. He then said I was filling up with fluid and had my blood tested which showed a dangerously high level of potassium. I have since been put on various medicines and to date my potassium level is above 6.0. I still am very tired and am having heart palpitations. The doctor (a cardiologist) has just changed my medicines again. Hopefully I will soon start feeling better because I am starting to get very depressed about the whole thing.

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Comment from: 35-44 Male (Caregiver) Published: April 23

My son has not been diagnosed as such but has been hospitalized with severe edema, six super bugs and venous statis disease, for l6 months. His doctor put him on very limited fluids and he dehydrated and his potassium went to 6.7 it has at other times gone to 7.6 previously. His symptoms are the exact ones listed. I was told his kidneys were shutting down, he has become extremely nauseated, hands had become useless, this has happened on other occasions when his potassium levels went very high. His speech became really slurred. I questioned all of these symptoms; my son actually at the onset told me he had a heart attack. Now the first heart monitor has been put on him. His ratings for CHF % was at l31 on the 13th of April. I got lab reports myself and started reviewing them. I feel because he is a medicare medicaid patient that he is not receiving the care he should be getting. From the beginning of this period he is having difficulty eating: coughing, choking, chewing all signs of maybe a small stroke. He says his right hand is weaker than his right. I noticed right away he started using his left hand.

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Comment from: Jilllee, 45-54 Female (Patient) Published: March 06

I was diagnosed with Cushing's syndrome in 2006. I had my left adrenal gland removed and felt better for two months. I then started having Cushing's syndrome symptoms again and had my right adrenal removed in February of 2008. Since surgery, I have been hospitalized three times with hyperkalemia. My potassium levels were 10, 8.8 and 8.0. I had to have dialysis five times and the last time I was hospitalized, I crashed twice. Since then, my endocrinologist can't figure out what level of prednisone to put me on, and I feel like there is no end to feeling sick.

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Comment from: Larry, 55-64 Male (Patient) Published: March 06

My potassium level reached 7.5 (severe), and I had almost constant weakness in my legs. I could barely walk. I had a recurring nauseated feeling in my stomach. I had no energy accompanied by an overall exhausted feeling. I had no appetite. Hyperkalemia was detected through a blood test.

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