Gitelman's syndrome or low potassium - Kidney Disorders Message Board

beth67 · 01-27-2009, 06:20 PM

I was diagnosed with a Gitelman's variant in October. Had been feeling bad for quite awhile with muscle pain and weakness, brain fog, muscles twitching, not sleeping well, tingling around mouth and various other symptoms. Saw a kidney dr. and he put me on spironolactone and amiloride to stop the large loss of potassium. Still don't feel right.

Beth

wildgoose · 01-31-2009, 08:39 PM

Hi Beth,
Just wanted to let you know that you're not the only one with potassium problems.

Been diagnosed tentatively with renal tubular acidosis without further testing since the potassium and spironolactone I'm on seem to do a good job keeping the potassium up.

I typed a longer response, but somehow the system wouldn't let me reply.

I've had problems for years and it's frustrating dealing with the side effects of low potassium.

I hope you get the right combo of meds working for you and start feeling better soon.

beth67 · 02-01-2009, 12:41 AM

Thank you so much for replying. I've been searching the net for people with low potassium and your the first one that has responded. This whole thing has really changed my life. I used to be an avid gardener, hiker, camper and was always doing activities with my kids but it has all come to a screeching halt. I hurt my sacro iliac joint about two years ago and I just wasn't responding to strengthening and physical therapy which is unusual for me. I was progressively getting weaker and weaker. My physical therapist would get more aggressive with me an hurt me even more. It took me awhile for it to click in my head that something was really wrong. Looking back the signs were there even before I hurt my back I just thought it was part of getting old even though I'm only 41. I saw a couple of doctors and they said nothing was wrong with me despite my sodium, calcium and potassium being low. Sometimes it would be red flagged on the labs and sometimes just in the low range. They acted like I was just a stressed out person and couldn't relax and wanted to prescribe medication but I didn't take it. I knew something was really wrong when I ended up in the emergency room with a high heart beat and uncontrollable muscle spasms. Even the er doctor said I was just having a panic attack. I went to a couple of more doctors and finally one said your right, things don't look normal on your labs. I was so relieved. She sent me to a kidney dr. and he first put me on spironolactone 50mg last October then Amiloride 5 mg in December because my numbers weren't getting high enough. The heart palpitations are gone but I still get skipped beats, tingling around the mouth and the muscle weakness is still present. Most of all I hate what it has done to my mind. I used to be very quick minded and organized and now I have trouble finishing a sentence. I really have to work to communicate. I feel fuzzy headed all the time. The kidney dr. said it would take six months for the muscle fatigue to get better. I really think all this has delayed my bodies ability to get over the sacro iliac joint problem because to help it you need to strengthen the core muscles. What were your symptoms with low potassium. Did you have the heart problems, muscle weakness and foggy brain. Are there any tricks you do to help your potassium get up when you feel bad?

Thanks,
Beth

wildgoose · 02-01-2009, 05:56 PM

Hi again Beth,
I started feeling really weak, my legs ached and i just totally lost my oomph. I'm not a really athletic person but not a total couch potato, but I worked where I had to park several blocks away from my work and all of a sudden, I'd get part way there or to my car, and felt like I needed to sit down I was so weak. That was my first big sign.

I sit for my job, and when I stood, sometimes I felt like I was going to pass out, and I was really short of breath. I couldn't hardly finish a sentence without being really breathy.

Like you, my potassium was at the bottom edge of normal or slightly low but when I went in for pre-op testing found it was way too low. They gave me a huge amt of potassium to take before surgery, and it hardly moved. At the time I was taking the smallest amt of hctz and from the week before surgery to surgery day my potassium moved only .01 points. They had to infuse me the day of the surgery or the surgeon wouldn't operate.

They took me off the hctz (my bp was fine anyway).They had me do a stress test, holter monitor etc... all normal - the palps were from the low potassium. They took me off a new med I was taking thinking that was causing it. My potassium continued to drop after stopping it without any potassium supplements. It was a fluke appt with a different doc who put me on the spironolactone to help with leg swelling - telling me it wouldn't cause me to lose potassium but would help with swelling. I wanted to say, well hello - why didn't anyone else think of that.

The only problem is that I hate the spironolactone. It has it's own set of side effects - so I take a combo of potassium and spironolactone. It's not perfect, but it seems like I'm in a holding pattern since 2 docs have basically told me it doesn't matter what is causing it, the meds control it. (translation - they have no idea)

Anyway, I take roughly 75 mg of spironolactone a day and take 20 meq of potassium every other day. I don't have any suggestions - sorry. I can always tell when mine gets low, and I just take one extra potassium. I let my doc know that I do that, and every time I've gone in, my potassium has never been even close to high from an extra pill here and there.

Wish I had some words of wisdom, but like you - I've never really felt the same. Until the time all this started, my potassium had been totally in the normal range. Suddenly it went south... I'm in my mid-40's and just thought I was feeling the effects of "getting old" at the time this all started. Now, unfortunately, I'm de-conditioned, have other problems which don't help things, but other than the ever-present palpitations the numbers look ok on the lab work.

flowergirl2day · 02-01-2009, 08:54 PM

Great care must be taken with spironolactone and other potassium-building/sparing agents when they are used in people with reduced kidney function. Whether used singly or in combination with other potassium-sparing/building drugs, the risk of developing hyperkalemia (high potassium levels) increases greatly. Of course, one's potassium levels must be closely monitored. (This might not apply in the Gitelman's disorder.)

I have been struggling with potassium issues as well. It has taken two years to bring my potassium to a normal level. I was on up to three potassium sparing/building medications at a time, worrying constantly about becoming hyperkalemic. A potassium-wasting thiazide diuretic offset the accumulation of potassium sufficiently. Taking the K supplements would have worked faster, but it is not recommended for people with reduced kidney function. I am glad to hear the K supplements with Spironolactone seem to be working well.