New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Taylor77
New Member


Date Joined Apr 2013
Total Posts : 3
   Posted 4/14/2013 1:03 PM (GMT -7)   
Hello,
I am a 36 year old female with a 11 year history of unexplained low potassium. I have been on supplements for years and the dosage has to be increased every year. Tests have shown I am loosing too much potassium in my urine. I have seen so many specialists and they are all baffled. If anyone has any insight it would be greatly appreciated! I am on an extremely high potassium diet. I have a 20 month old daughter and would love to have another child soon, but would like to get this mystery solved first, as pregnancy made my potassium go even lower.
Thanks!

Post Edited (Taylor77) : 4/14/2013 2:11:30 PM (GMT-6)


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/25/2013 12:51 AM (GMT -7)   
Hi Taylor-
I have sufferred from low potassium since I was 19 as well...I am now almost 33. I was wondering more about your situation so maybe I can help. I have been hospitalized three times since November with critical potassium levels of 2.2, 2.4, and 3.4 all taking 8-9 days to stabilize. I have no colon and big chunk of small bowel removed so Ive had more issues since then, but at 19 cardiac arrested from low potassium and barely survived. I waste potassium as well, but more recently it seems mine is also kidney/adrenal related. I am still in process of drs trying to figure things out and they are baffled as well. I am a nurse by trade, but on disability, but if you tell me more maybe I can try and help?
 
Lizzie

Boatswife
Regular Member


Date Joined Apr 2013
Total Posts : 27
   Posted 4/25/2013 11:52 AM (GMT -7)   
I have medullary sponge kidney and renal tubular acidosis which causes me to spill out lots of potassium in my urine. I have been hospitalized numerous times for low potassium levels usaually around the 2's. I have been stable with no major problems with my kidneys or potassium after I was diagnosed in 2005. I started out with taking 2 tablets 3 times a day of Potassium Citrate 1080 mg each tablet and for the past few years I only have to take 2 tablets a day. Potassium levels have been stable ever since at 4.0! My advance see Nephrologist Sooner Than Later!

Taylor-
With my last pregnanacy I was in the hospital all the time for potassium issues. I would get this all worked out before getting pregnant. Good Luck~~

See a Nephrologist soon!!! They will fix you right up. Ask about the issues I listed above.
"Half the battle of achieving is believing"~~Shannon


SeronNegative RA~~Chronic Pain Syndrome~~Fibromyalgia~~Disc Degenerative Disease~~Carpal Tunnel Syndrome~~Restless Leg Syndrome~~Vitamin D Deficiency~~Anxiety Disorder

Medullary Sponge Kidney~~Renal Tubular Acidosis

cassryn
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/25/2013 10:08 PM (GMT -7)   
Yes! That's the best thing you should do. If you want to know more then don't hesitate to click here.

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/26/2013 8:13 AM (GMT -7)   
My potassium in on low end of normal right now taking 20-40 meq of KDur, but they are referring me to endocrinologist and nephrologist. I have high Aldosterone and high Renin and they found Adrenal Adenomas, but normally with primary hyperaldosteronism you have low renin. With both elevated its either caused by diuretics, secondary hyperaldosteronism, or renin secreting tumors. I was briefly on diuretics per my doctor for the edema and super low urine output (200ml's/day only) and it caused my potassium to bottom out and again was hospitalized three times in last few months at 2.2, and twice 2.4. In order to get accurate Aldosterone and Renin levels, the nephrologist suggested 6 wks off before drawing and I waited 8 wks. I also have acute hypertension which is indicative of both primary hyperaldosteronism and renin secreting tumors or pheochromocytomas. They tend to cause low or normal low potassium levels. I just feel awful all the time and hope they can figure this out soon, but each dx is super rare and hard to dx.
Lizzie

Melig
Regular Member


Date Joined Feb 2016
Total Posts : 40
   Posted 4/26/2016 11:57 AM (GMT -7)   
Mine is at the low end of normal too 3.6 that's after 5 weeks of between 5000mgs - 9000mgs daily depending on how much food I eat how many I get in and I take coco water to top up dosage as I'm severely depleted. It took 3 weeks 4 the heart palpatations to cease. I had them every night n morning...they ceased after a few days n heart palps on running up stairs took the 3 weeks. I still can't do any physical activity n I'm so stiff n fatigued but so much better than before.

Iv gone through torture with low potassium since last September. The thing is most of my bloods were falsely elevated n as a result went untreated even though I'd the most severe of symptoms I had severe weakness n heart trouble n legs bruised from cramping. Can you believe that ? N I was written off as psychological. After the near heart attack my levels were 3.4 now I wonder what it really was. They gave me potassium pills but only 5 n my bloods shot up ten points...bloods not overall storage as that is impossible with only 5 supplements yet no1 copped this on. I ended up in hospital a few times with severe lbp excessive thirst heart muscle etc etc n blood k was showing in 4s - this was totally wrong. Anyway it was k my bloods eventually came back down but there is only 2% k in bloodstream n acid base being off in blood can falsely elevate levels. I finally got supps then couldn't take as I'd bad gastritis from an antibiotic n rectal bleeding I'd to struggle by with just coco water. I should have been getting IV but the coco kept me out danger then eventually stomach got better n I started supplements. My last blood test showed 3.9 which was about 2 months ago I knew this was inaccurate again. I was only on one quarter of supplements I'm on now n I was in bits aching all over n palps felt like killing myself...N now after weeks of high dose I'm 3 points lower than last test so it's defo incorrect...I actually predicted a 3.6 symptom wise n with how much iv took I was just surprised the blood test actually matched for once. Just hoping tummy stays better so scared every time I take they will irritate tummy. Just hoping it continues to rise n aim within 4 weeks to be hitting the 4 mark which I need to be at least this, optimally 4.5. Will be relief to wake up one morning without these symptoms n without having to take supplements.

It's been a long torturous battle n I hope I win it eventually. It's just sad a blood test is held in high regard over persons word n symptoms.

Mightnt happen to others but unfortunately it did to me.

lmofle
New Member


Date Joined Jun 2016
Total Posts : 1
   Posted 6/9/2016 9:23 AM (GMT -7)   
If you guys haven't already, you may need to visit a nephrologist (kidney guy) - there are a number of genetic disorders that can cause low potassium such as Gitelmans Syndrome or Barrter Syndrome - after 9 years, my wife was finally diagnosed with this - if you have any of your labs, you might see if you are also low on Magnesium as this is also another symptom of these 2 disorders.

Holly3
New Member


Date Joined Aug 2016
Total Posts : 1
   Posted 9/12/2016 5:56 PM (GMT -7)   
Hi. I have either Bartters or Gitelmans and I don't know anyone else with it. I have both low potassium and magnesium. I also have well controlled type 1 diabetes. My creatinine is 1.5 and BUN 50. GFR about 43. I always wondered if the kidney issue caused this as A1c is and has been 6.4% or lower for 40 years.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 13, 2017 11:31 PM (GMT -7)
There are a total of 2,905,188 posts in 318,841 threads.
View Active Threads


Who's Online
This forum has 158204 registered members. Please welcome our newest member, arycqmiu.
249 Guest(s), 1 Registered Member(s) are currently online.  Details
Scaredy Cat