looneymom Posted June 11, 2013 Report Share Posted June 11, 2013 I know it's important to make sure you get the right amount. But how much is enough? Has a POTS doctor ever given an estimated amount or is this something that varies from patient to patient? If you have experienced a potassium deficiency, what were your worst symptoms?My son is also trying to come off florinif and I know this medication can effect potassium and magnesium. This is his 4th day on 1mg and so far his blood pressures are staying up. Yeah! For those of you that came off this medication, did you increase gatoraide or orange juice? I have noticed an increase in shaking symptoms since he has started coming off florinif. Has anybody experienced shaking when coming off florinif . Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 11, 2013 Report Share Posted June 11, 2013 Looney, I did a ton of bloodwork and found that I need approx. 10 MEQ potassium a day for a 0.05 mg. dose of Florinef. That number is with my food, so my total potassium was around 5,000 mg per day. When I was on .2 mg I needed about 40 MEQ per day above my food intake. That seems to be higher than most people need. I am not sure why my body needed so much of it.I would expect that everyone is going to have different needs based on how their body uses it. My worst symptoms were exhaustion and achey, tired legs. I did not get the usual cramps, etc. though my potassium only dropped down to about 3.4 at the lowest.Can you get your doc to order bloodwork so you can check his levels? If he's having shakiness, it seems well worth testing it. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 11, 2013 Report Share Posted June 11, 2013 I used to take 4800 mg potassium with 0.2 mg florinef. Once I started lowering my florinef intake, I lowered the potassium as well. It took me a while (several blood tests and drs appointments) to figure out the proper florinef - potassium combo for me. I can only assume that this is different from one person to the other. I only learned about the magnesium depletion from florinef relatively recently, and I am now taking 400 mg magnesium glycinate a day (but I am no longer on florinef) - the magnesium seems to help lowering my heart rate and it also promotes an overall calmness.My symptoms when my potassium and magnesium were/are low: muscle weakness, aches and cramps, as well as an increased number of heart palpitations. Also, I suspect some of my hypertensive episodes might have been caused by a low potassium level (perhaps combined with the florinef...just speculating here).For a while I thought a higher fluid intake might help, but I soon realized I actually didn't need it, so I'm down to 1/2 gallon a water a day (give or take) - I used to drink close to 1 gallon while on florinef.No shaking in my case.Hope this helps. Keeping my fingers crossed that your son will be able to wean off successfully. Alex Quote Link to comment Share on other sites More sharing options...
spinner Posted June 11, 2013 Report Share Posted June 11, 2013 I use it allsalt, magnesium, l lysein, antihistamines, and potassium.Gatorade when im feeling rough in the morning. Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 11, 2013 Author Report Share Posted June 11, 2013 My son's levels have been checked before, but they always show they are in range. Last night I found an article from the Cleveland Clinic Journal of Medicine called Preventing and treating orthostatic hypotension: As easy as A, B, C. I don't agree with the title. However it stated that a person on florinif should be on a high potassium diet. I'm wondering if this is the problem. Starting today, I'm going to up potassium levels with food and see if this helps. Here is the article. Thought someone else might want to read it. http://www.ccjm.org/content/77/5/298.full Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 11, 2013 Report Share Posted June 11, 2013 Hi Looney, what end of the range is he in? I know I feel flat out terrible after my potassium goes below 4.0, even though I'm still "in range". My legs started aching & feeling weak as I went below that potassium level. I started feeling better after my level was up around 4.4, which is at the higher end of mid-range. I am now trying to keep my potassium up toward the high end of range (around 4.8-5.0). My doctor was not helpful at all with this, he was perfectly happy as long as I was at 3.6 or higher, even if I felt awful.Presently I am using potassium bicarb for my potassium. I bought a lb. of it from a wine making supply house - it's food grade, cheap and just need to add a small amount of it in electrolyte drinks. It is pretty much has no bad taste, it's just a fizzy drink when mixed with a splash of lemon. I calculated 1/4 tsp. of what I am taking is about 500-600 mg potassium, and it's much easier to swallow than pills. It's just an idea... I still eat two bananas a day, 2 cups milk, etc. to buff up my potassium, but Florinef takes more of it than I can possibly replace just with diet. Well, unless all I eat is milk, potatoes and bananas. Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 11, 2013 Report Share Posted June 11, 2013 I used to take 4800 mg potassium with 0.2 mg florinef. Once I started lowering my florinef intake, I lowered the potassium as well. It took me a while (several blood tests and drs appointments) to figure out the proper florinef - potassium combo for me. I can only assume that this is different from one person to the other. AlexHi Alex, thanks for posting this - really interesting info! I thought I was nuts when I calculated that I needed at least 40 MEQ of potassium for .15-.2 mg of Florinef! Thanks for making me feel less crazy. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 11, 2013 Report Share Posted June 11, 2013 Looneymom,I sadly don't have anything to add other than to tell you that I hope you get it figured out and your son is able to wean successfully. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 11, 2013 Report Share Posted June 11, 2013 After reading all the posts though, it has got me thinking about my own potassium levels. Right now they are at 4.6 however when I was at the hospital (during my first and only stay following an ER visit with my first "episode" 4+ years ago) I was looking back on my records and at the time my potassium was 3.2. I thought it was kinda low at the time. From the above comments that seems pretty low. Could this be what started my whole thing??? and maybe it was just low potassium instead of POTS?? The EP or ER dr. made no mention of my potassium being low at the time and never mentioned it as being a problem. Things that make me go hmmmm...BTW, I've never been on florinef as my bp tends to be high and registered as rising during my TTT 4+ years ago. I have always had a yogurt and banana for breakfast for as long as I can remember and now I drink a nutribullet shake with yogurt, banana, spinich, carrots, blueberries and coconut milk in the mornings. Again, hmmmm.... Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 11, 2013 Author Report Share Posted June 11, 2013 BadBadBearMy son was at 3.9. The range for this test was 3.5-5.3. I am going to try adding a salt substitute to his gatoraide and shake. 1/4 of a teaspoon has 610 mg of potassium. His blood pressures are staying up still, so I'm hoping I can get him off this medication. He has really bad headaches. Since taking him down to 1 mf of florinif, I have been taking his blood pressures about every two hours. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 11, 2013 Report Share Posted June 11, 2013 So glad to hear his pressures are staying up!! YAY Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 11, 2013 Author Report Share Posted June 11, 2013 BabeI also thought about food intake. My son does not have much of an appetite. I started looking at my weekly menu this morning. We still do the green drink at lunch time but I am going to include some foods higher in potassium. Just have to watch calories but as much shaking that going on, he may be burning up all his calories and electrolytes. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 11, 2013 Report Share Posted June 11, 2013 Looneymom,I know how your son feels as far as not having much of an appetite. That's why I began with the shakes (I give them to my kids also) because I'm fairly certain that I must be lacking in nutrients as I don't eat very much. I have my shake for breakfast, usually not hungry for lunch and then at dinner I only eat about a quarter of what I used to. No dr. has ever suggested taking supplements and I'm guessing from my labs...all looks well. I did try a few supplements a few years ago at the direction of my acupuncturist (at the time) like B Complex, D and something else I can't remember, maybe it was calcium. I made the mistake of beginning them at the same time and I felt worse, so stopped taking them.Anywho, wanted to let you know what a great mom you are in caring for your son. I do hope he gets some relief soon, as well as you Be well,Bebe Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 11, 2013 Report Share Posted June 11, 2013 @Looney - yeah, he might not feel good at 3.9. @Bebe - I am suprised they didn't treat you for low potassium at 3.2, Bebe. My docs jumped into action when mine hit 3.4. Yes, I found myself craving potassium foods before my big flareup in Oct., too. I wish there were some really high potassium, low carb food choices. Avocados seem to be about it, otherwise it seems that everything is fairly high in natural carbs. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted June 11, 2013 Report Share Posted June 11, 2013 Thanks for the input BBBear,I never know what to think anymore. No, they never mentioned it. Can low potassium cause hypertension? Perhaps that was my original problem, low potassium. Now I'm being treated for POTS (dx in 2009 by TTT) and I'm wondering now if all it was was low potassium to begin with. At the same time, too much potassium has its own problems I think. UGH! Just one more thing to bring up to the dr., although my latest labs showed that I was at 4.6 now. I never have cravings for anything these days and haven't for some time now.Looneymom,I was also just thinking about the little/no appetite thing and wondering if we don't really have an appetite because we drink so much all the time? Just something else to make me go Hmmm... Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 11, 2013 Report Share Posted June 11, 2013 Yeah, potassium needs to be in range, either high or low is bad news. Low levels can provoke hypertension, supposedly. I did not have this side effect. The only thing I noticed was that I felt kind of jittery and my blood pressure seemed jittery with low potassium - it would either be really low, or jump up to almost normal (which is high for me). Oh, also forgot - I had some mild hand tremors at that potassium level, too. Even my therapist noticed that... Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 11, 2013 Report Share Posted June 11, 2013 I've been in the ER numerous times with a potassium level of 3.2 and under and I was never given anything, nor was it suggested to me that I should start supplementing. I guess some drs don't see that as a big deal, but for some of us it makes a huge difference.Should I even mention that the dr who prescribed the florinef to me said I should be fine if I eat a banana a day?!Michelle, you sound like me - I used to pay more for my potassium supplements than for the florinef Alex Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 11, 2013 Report Share Posted June 11, 2013 Alex, that's funny - my cardiologist also gave me the eat bananas lecture. LOL! 3.2 and under - ugh. I can't imagine how bad that feels. Quote Link to comment Share on other sites More sharing options...
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