Patient Comments: Hyperkalemia - Diagnosis


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

Comment from: Midge, 55-64 Female (Patient) Published: September 27

Here is a cause of hyperkalemia which everyone missed. Did you know you can overdose on milk! I didn't until my potassium levels hit critical and my hematologist wanted to put me on dialysis. They thought I was taking supplements. I wasn't. Every glass of milk has 400 mg potassium. A half-gallon has 3200 mg. A gallon has 6400 mg. I was drinking at least a gallon per day. I had to stop drinking milk for a couple days to prove it was the source. My levels returned to normal. If it can do this to a heavy adult, imagine what it can do to a child. I don't know if the potassium is natural or added, but this is a prime example of the toxic levels of vitamins being added to our foods and drinks. Nobody is watching and the medical community overlooks these sources. You can overdose on milk like I did and end up with critical levels of potassium. My entire family drinks large amounts of milk like this. I wonder what other problems these toxic levels of vitamins and preservatives are causing. I think the additives need to stop.

Comment from: JMark, 55-64 Male (Patient) Published: June 10

I had blood tests done for diabetes and my potassium level came back at 6.5. I was urged to go to the emergency room, but the copay is too high and I began to research hyperkalemia. It turns out that I was taking Norvasc and Cozaar, an ACE2 inhibitor that causes the retention of potassium. I also have kidney disease, so the doctors stopped the Cozaar and tried other medicines to try to normalize my blood pressure, which has risen to over 200/100. My potassium levels dropped to the mid 4s, so the ACE2 was the culprit. Bystolic caused edema and nothing seemed to lower the pressure except ACE2 inhibitors. Now I am taking Norvasc and another ACE2 medicine that isn't supposed to be quite as bad as the Cozaar at retaining potassium. I am also now taking a diuretic to try to keep the potassium levels down and also a new liquid that I take every 3 days, although the name escapes me at the moment. I believe it works in the digestive tract to keep potassium from getting into the blood. My high blood pressure seems to be the most serious problem, since the high potassium has been linked to the ACE2 inhibitor. Now, if I can find a happy balance!

Comment from: elizabeth, 55-64 Female (Patient) Published: January 21

I have been using Istalol eye drops for glaucoma. I have loss of energy, insomnia, queasy tummy, and mild diarrhea.

Comment from: jimbadneck04, 45-54 Male (Patient) Published: December 30

I was diagnosed about 10 years ago with torticollis. I take alprazolam for it. The Botox does nothing, can’t stretch it. If I go to sleep for 2 minutes it goes away till I wake up. I have had it so long that the area on the left side of my neck to the top side over my ear is always tender. I would do anything to get rid of it. If anyone knows of an electronic hat that would disrupt my brain to allow the spasm to be interrupted, I would gladly be a test patient.

Comment from: researcher 99, 55-64 Female (Patient) Published: May 30

Immense thanks for your website and information on hyperkalemia. My own doctor here in Canada says absolutely nothing about this condition except that a 5.7 blood test result for potassium is beginning to be of concern. When asked about causes, treatment, etc., I get nothing except to go on a low potassium diet. Your information, which I am trusting to be accurate and current has helped tremendously! Thank you.

Comment from: nanacindy, 75 or over Female (Caregiver) Published: April 26

My mother has dementia and has recently been admitted to a care center. She has been on Lasix twice daily and now has been hospitalized with severe dehydration. Her potassium level is 8.5. I wonder if the Lasix could have caused this.

Comment from: Este, 45-54 Female (Caregiver) Published: October 15

My father died from hyperkalemia. He had only been taking Aldactone for two weeks. His kidneys shut down, his potassium spiked, and his heart could not contract. He was no pulse and had electrical activity. He was resuscitated, only to die again two weeks later. The cardiologist insisted that my father was only dehydrated and needed to drink fluids. Had I been informed of the risks and dangers, I would have been very vocal and vigilant in having him tested regularly. He collapsed in the doctor's office. The labs had just come back. It was too late. I take beta blockers and Norvasc, am only 46, not over weight, but have had very stressful life. Now I am concerned about developing hyperkalemia. I plan to get tested next week! This condition is preventable!

Comment from: Jenny, 45-54 (Patient) Published: October 05

I had been taking Spironolactone(200 mg/day) for 5 weeks as part of a treatment for Gender Dysphoria, and had symptoms of nausea the entire time. Also a general feeling of weakness and some dizziness upon standing (which I assumed was a blood-pressure problem, yet my pressure was normal). My doctor, who has a great deal of experience with this medication, at first thought I might have just caught a virus or something. When I came in for lab tests, a slight elevation in potassium was observed so repeat labs were order for that very day. I received a 9:00 pm call from my doctors office regarding the lab results which instructed me to go straight to the hospital emergency room. I was checked in, treated for 3 days until my levels were normal and then released. Two days later I had more labs and they confirmed normal levels. At one point during my hospitalization, my level had gone up to 7.5 and they (we) were quite worried about both heart and kidneys. With a personal history of Type 2 Diabetes, and a family history of heart problems, I am indeed lucky to be alive!


Salt Shockers: Where High-Sodium Foods Lurk, and How to Avoid Them See Slideshow
Comment from: jane, 45-54 Female (Patient) Published: February 26

I have been diagnosed with hyperkalemia and when I had blood work done levels were 7.4 and 7.6 this last time. I got a call from my doctor to go to the emergency room. They gave me high dose of sugar and insulin. The levels went down to around 5.5 and they sent me home. I am watching my diet but they cannot seem to find out why the levels are high. It’s been a year and I still have no answers. I am tired all the time. Throughout the day I break out in a sweat and feel light headed but only thought it was due to menopause, but it could be a symptom.

Comment from: annafonte, 65-74 Female (Caregiver) Published: January 14

My father died due to spironolactone where he ended up having his foot amputated as it causes tissue destruction and causes the kidneys to shut down. He was on dialysis a day after he was admitted to hospital and had is foot amputated. Unfortunately he did not last till the end of that week and passed away whilst under more surgery for further amputation, from a cardiac arrest. I am currently in discussion with the solicitors after the concerned health board has provided their vague final response to me.

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.

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.

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.

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.

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.

Comment from: Ron A, 55-64 Male (Patient) Published: October 09

Thanks for the good article. It briefly mentioned diet as a possible cause of hyperkalemia. I believe that's the problem in my case. I've been eating a lot of potassium rich foods, such as spinach, avocados, beans, fish, and bananas. I must be eating more than my body can handle or maybe the occasional NSAID I take for a sore foot is slowing elimination of the excess. I've cut back on these foods, especially the bananas, and hope that it will help. My doctor ordered a follow up blood test immediately upon seeing the high reading on my last test.

Comment from: Msashua, 45-54 Female (Patient) Published: January 14

My potassium is 5.2, picked up in blood work last week. I have been type 1 diabetic for 48 years. My endocrinologist says my kidney function tests are perfect, but she wanted me to lower potassium intake via diet and stop using one medicine that may be affecting potassium level. She is telling me that this is not something for me to get freaked out about but I am taking this very seriously. She said the blood pressure medication I take could be an affecting factor in the elevated potassium but it provides the added benefit of protecting my kidneys from diabetic side effects. I hope this diet change does the trick!

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.

Comment from: Dorie, 45-54 Female (Patient) Published: August 07

I have hyperkalemia and have had it for over a year. What they do is put me on Lasix and nothing else. The doctors (and I have been to a lot of them) just don't care to pursue the end results. I've lost over 30 pounds and look like skin and bones, still no help from the doctors. We never get any answers from the endocrinologists. I have the heart palpitations, slurred speech, my hands are useless and when it's bad I'm bedridden because I can't walk

Comment from: romo, 55-64 Male (Patient) Published: April 15

I had no symptoms at all with my hyperkalemia. I had a liver transplant, so I go and have blood drawn every week. I went and had blood taken, and they asked me to stay for the results, so I did. When the doctor called me in, she told me she was admitting me into the ICU. I asked why. I said I feel great, in fact, the best since my transplant and I was ready to go for my eight-mile walk I do four times a week. She told me about my potassium level and said it was high. If it wasn't for my blood work, I would not have known.

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

I had been taking several medications for high blood pressure, including a diuretic, Norvasc 10 mg, metoprolol, and an ACE inhibitor. I had a second episode of irregular heartbeat and went to hospital where I was found to have hyperkalemia. My symptoms were/are tingling/numbness in lower extremities, sweating, and a slight shortness of breath.

Comment from: 45-54 Male (Patient) Published: August 06

I woke up one morning, and I had a loss of balance and was unable to stand without leaning or holding onto something sturdy. I had weakness in my lower torso and my hands. A blood test determined I had hyperkalemia. I was told to stop taking my naproxen and lisinopril. I started taking a hydrochloride medication immediately to counteract the potassium in my system.

Published: July 02

My balance became so badly messed up, I couldn't walk without members of my family holding me up. After falling while trying to walk 6 feet, I went to the hospital where hyperkalemia was diagnosed; the result of a medication I had been given.

Published: June 20

Nausea, weakness, not feeling good for several weeks, discovered with blood work.

Comment from: mary, 35-44 Female (Patient) Published: July 08

I have had hyperkalemaia for almost 8 years. I have had a lot of tests done and the doctors can’t find out why it goes up. I usually feel very weak and dizzy with it. I haven’t been given anything to lower it when it does go up. The last time I had a blood test done it was 7.2. I wasn't put in hospital for it, and never have been yet.

Comment from: red, 55-64 Female (Patient) Published: April 28

One week ago I woke up and could barely walk. My muscles in my legs, calves, were so heavy, weak and sore. I went for lab work my potassium was 6.9. I am now on a daily dose of lasix and the potassium is 6.0 I have felt tired and weak for a while but just thought I am getting old 62. I am still being monitored for my potassium levels.

Comment from: Harris, 75 or over Male (Caregiver) Published: March 04

Husband died of hyperkalemia. He had blood K level of 5.4 12/16/2007. Admitted to hospital again on 01/03/2008 with 5.1 blood K and difficulty standing. Three days later the doctor prescribed potassium for him. His blood level spiked from 3.4 to 4.9 that day. The next day it spiked from 4.9 to 5.6. The third day it went from 5.6 to 6.9 and caused him to go into cardiac arrest and death. On 01/07/2008 radiology diagnosed the traumatic and acute fracture of four ribs which occurred on 11/12/2007. One hospitalization Nov '07 and one in Dec '07 due to these injuries, which were not diagnosed until two days before he died. Believe doctor was negligent and contributed to if not actually caused his death. Have been unable to get med malpractice attorneys to acknowledge and proceed.

Comment from: Terri, 45-54 Female (Patient) Published: February 10

I am a healthy, active person. I started noticing rare moments where, when I would stand up or get up from bed, I would suddenly feel nauseated, flushed, sweaty, dizzy and feel like I would faint. I would then immediately lie on the floor and after a few moments I would be fine. (Thought it was low blood sugar or something.) Then I started feel "foggy" and had trouble concentrating or talking kind of slurring my speech. I started to have real concerns when I noticed that my walking seemed to become difficult-kind of shuffling my legs. I also had symptoms of mild heart palpitations. I went to my doctor who determined I had a high potassium level. There has not been a medical diagnosis as to why I have this condition, but it is controlled thru a mild daily diuretic. Please note that these symptoms took time to develop, did not occur all the time and each could be explained away until they started to occur more often. It is important to see your doctor if you experience any symptoms..

Comment from: smith8577, 35-44 Female (Patient) Published: August 17

I have Addison’s disease and have high potassium because of a hormone that does not work to excrete it. To keep your potassium down, watch what you eat, I have found so many things we eat and drink have high amounts of potassium in them. A lot of Milks have it, 100% Fruit Juices, Peanut Butter, Apples, Leafy Green Vegetables, Some Bottle Waters, Sea Salt, Sunflower Seeds, Some Cereals, Molasses, The list goes on. I never knew this until I got Addison's. So watch what your eating and drinking. I also know that higher intake of sodium will bring Potassium Levels Down. Some Diuretics will help bring them down too. Do your research and hope this helps.

Comment from: Cymraes, 55-64 Female (Patient) Published: September 25

I had routine blood tests last week. Up to a year ago I was very fit and also was, and still am, slim. I thought I might have a thyroid problem as I have been suffering from fatigue for most of the past year. However, I was diagnosed with mild hyperkalemia and I return next week for another blood test. My potassium level has always been around 4.5, but I believe that Cozaar which was prescribed to me about 18months ago could be responsible plus my great love of tomatoes which I eat daily!

Comment from: Fred, 75 or over Male (Patient) Published: September 25

I was taking Norvasc 10 and switched to Lisinopril 10. My BP has remained the same but my heart rate dropped to the 46/52 systolic range. What goes?