dawson20 Posted March 25, 2008 Report Share Posted March 25, 2008 So I take forinef and metoprolol to control my POTS symptoms and they work beautifully - I have my life back. I have been on the same doses (.2mg florinef, 50mg metoprolol twice a day) for a few years now and have been thrilled with how well they work. Last september my potassium dropped (side effect of both meds im told), and at one point was 2.8 (very low) and landed me in the ER. I have been on increasingly high amounts of oral potassium suppliments (I currently take 3 600mg slow K in the AM and 4 in the evening for a total fo 4200mg of suppliment on top of very high potassium diet) and continue to struggle with low potassium. My family doc wants me to start tapering the florinef (a disaster. every time. i cannot and will not do this), as they are just out of ideas at this point. My kidneys have been checked out carefully, and nothing has come up. they have no idea why all of sudden i just cant tolerate these doses any longer. At this point, tinkering with my meds is out of the question. I wont let them, I cannot go back to where that will take me. (on the couch indefinately). I know however that the only other option is IV potassium at this point and it is not a regular thing.. my docs are very hesitant to even discuss it. Does anyone else here deal with this problem? Are there any other beta blockers that help without affecting potassium?? Im lost... thanks in advance. Quote Link to comment Share on other sites More sharing options...
ljoeb Posted March 25, 2008 Report Share Posted March 25, 2008 Hi!! When I was in the hospital in June, my potassium level was way low and they gave me a couple of shots of it. Since then it has been in the low normal range. I just started florinef, and my doc is going to keep a good eye on it. He basically just wants me eating a banana a day and some milk. He said he would get more aggressive with it should the level stay low. Sorry that there is not a lot of help here. But know that I am hoping for the best for you! Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 26, 2008 Report Share Posted March 26, 2008 I have had low potassium but not chronic. I did get it IV and it gave me a rash. I went to the MD who said Potassium can be rough. He ordered antibiotics, which I did not take. because the rash was improving not getting worse. My point is, ask the docs- why they don't want to do IV.you certainly need a risk/benefits discussion. good luck Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 27, 2008 Report Share Posted March 27, 2008 It really takes a lot to get potassium IV. I've been at 2.3 and still haven't been given IV K+. The only time I do get it without question is when I get my scopes and they dilate my esophagus, because I can't take it by mouth.IV potassium is very very hard on the veins, very irritating, and unless watched very closely can be potentially dangerous and docs just don't want to mess with those consequences. They will almost always go oral over IV. Joe, bananas have a ton of carbs in them, besides potassium. The carbs cause insulin release, which in turn uses up potassium, so for some people, they are worse than doing nothing. There are other foods out there with less carbs and more potassium you may want to look up. I don't have my list handy and I take so much prescription, it's kind of a moot thing for me (equal to or greater than 150 meq a day). This keeps me at a low normal range.Anyway, some foods recommended by docs actually may drop your potassium, because the carb content is worse for you then the potassium amount is good. Just an FYI...morgan Quote Link to comment Share on other sites More sharing options...
dawson20 Posted March 27, 2008 Author Report Share Posted March 27, 2008 That makes sense - everytime I push bananas it seems my levels drop... I have read lima beans, tomatoes and molasses are higher even than bananas... Regardless 150meq is amazing - how does your gut stand up? Im at 64meq a day roughly and it is murder on my stomach... I cant imagine more than doubling that... yikes.. Good to know about the banana/carb thing... I will start pushing the other sources and see if that helps... Thanks for all the suggestions... I know IV K+ is not a walk in the park, and im definately not anxious for it by any stretch - I just dont know what more to do. Yesterdays draw came back at 2.9 so im now dropping fairly quickly again (I was 4.1 a week ago - took me weeks to get up that high). Its just so frustrating.It really takes a lot to get potassium IV. I've been at 2.3 and still haven't been given IV K+. The only time I do get it without question is when I get my scopes and they dilate my esophagus, because I can't take it by mouth.IV potassium is very very hard on the veins, very irritating, and unless watched very closely can be potentially dangerous and docs just don't want to mess with those consequences. They will almost always go oral over IV. Joe, bananas have a ton of carbs in them, besides potassium. The carbs cause insulin release, which in turn uses up potassium, so for some people, they are worse than doing nothing. There are other foods out there with less carbs and more potassium you may want to look up. I don't have my list handy and I take so much prescription, it's kind of a moot thing for me (equal to or greater than 150 meq a day). This keeps me at a low normal range.Anyway, some foods recommended by docs actually may drop your potassium, because the carb content is worse for you then the potassium amount is good. Just an FYI...morgan Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 27, 2008 Report Share Posted March 27, 2008 Dawson, have they done any kidney fuction tests to see if you are losing all your potassium that way? I have what's called Periodic Paralysis, so no matter how much K+ I take, it never seems to be enough and it's one drug I do develop a tolerance to, so keep having to up the dose.There are different treatments for low potassium levels, depending on what's causing it. But a fairly simple test is just to see how much you excrete when you pee. If it's greater than 20, then certain tubules in your kidneys could be the culprit. If you do not excrete very much, it could be an ion channelopathy disorder, which is a genetic mutation.Yes, all that potassium makes me absolutely miserable. My gut is the worst it's ever been and not getting any better. But not taking it causes even more problems. It is an absolutely whopping dose and would probably kill a normal person. There are people with this disorder I have that take 240-250 meq a day to try and keep their K+ above 4. Anyway, you might ask your doctor about the urine test. if you want, I will send you a link to the testing, just pm me. morgan Quote Link to comment Share on other sites More sharing options...
yogini Posted March 27, 2008 Report Share Posted March 27, 2008 Florinef does tend to cause low potassium - you can search through old posts to read about this. I know that you don't want to mess around with your meds which have been working, but thought I'd share that I had a tons of trouble reducing florinef until I went super slowly. I was able to wean off of it totally by going 1/4 pill/month, without any side effects. Just thought I'd mention this, in case you decide to try... Quote Link to comment Share on other sites More sharing options...
dawson20 Posted March 27, 2008 Author Report Share Posted March 27, 2008 Were actually waiting on a 24 hour urine/potassium excretion test to see how much i am losing there, hopefully it will shed some light on things. Otherwise my kidneys check out well... creatinine is good, etc. I cannot imagine taking that much potassium... here i was complaining about half that! We know the most likely culprit is the florinef, but i cannot reduce it. We have tried countless times and every one ends in disaster... the last attempt was last fall, where we did try 1/4 pill less every 3-4 weeks and it did well initially but I crashed hard over Christmas and wound up on the same dose I started at before I had any control over my symptoms again... it just doesnt work. I know ultimatley the docs will choose to lower the meds and have me miserable than risk the hazards of low potassium but im so hoping we can figure something else out first. My docs referring me to my old neph to see if he has any thoughts on how to get control of all this. bah. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 27, 2008 Report Share Posted March 27, 2008 Well, one of the reasons I had to get a pacer, was so I could take atenolol. I had huge drops in heart rates and atenolol made it worse, but going without made it even worse. If it takes you having to take potassium, to be able to use florinef, which really helps you, maybe it's worth it. That's what you will have to decide. I'm glad they are looking at kidney tests. I can get them to increase my dose of K+, but can't get them to test my urine, so I am glad you have more luck than me in that dept! morgan Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 28, 2008 Report Share Posted March 28, 2008 Dawson,Have you tried salt and water loading? Its not hard with either salt tablets or bouillon. Quote Link to comment Share on other sites More sharing options...
momdi Posted April 2, 2008 Report Share Posted April 2, 2008 When my son was hospitalized with low potassium, the dietitian recommended potatoes - she called them "potassium bombs". Though these can be a carb problem as well. Avocados are a good potassium source, and they are also high in fiber and loaded with good fats. Quote Link to comment Share on other sites More sharing options...
the_dancer_grl Posted April 2, 2008 Report Share Posted April 2, 2008 i have low potassium as well but not that low, i get by on supplements and banannas and spinach (or is the spinach for Mg? I forget now...i think it has both actually) sorry i can't be more help Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 2, 2008 Report Share Posted April 2, 2008 Molasses is super-high in potassium--as well as iron and other minerals. Quote Link to comment Share on other sites More sharing options...
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