Phosphorus Problem.....HELP!

[rookiegirl]

My lab results for my Phosphorus level was not good this month.  The target goal they want is between 3.5-5.5
My level was 5.6 and I was told it was high and could potentially damage my bones and contribute to heart disease and circulation problems.  I've been taking 1 tablet of Tums with big meals.  I do forget sometimes to take them but not often.  I'm not sure what to eat anymore.  To make matters worst, they enclosed a little statistic that state "For each 1mg/dl increase in blood phosphorus level over 5.5 mg/dl, there is a 6% increase in risk of death".  Are they trying to scare me to death?  I realize the importance of keeping this down, but it's not like I don't try? It's very difficult to avoid the foods that are high in phosphorus.  Makes me not want to eat EVER.  Please HELP.

How on earth do you avoid or cut down on Phosphorus foods, when pretty much everything has Phosphorus 

I would like to know what you guys do to keep your level below the target range 

[kidney4traci]

Maybe you could try another type of binder, depending on your insurance.  There are many others that help in contoling your levels.  Good luck.

[Zach]

What is your calcium level?

[BigSky]

Key thing is to always take your binders.  With tums its a good idea to know what your calcium is also.

One thing is to take into account if the meal is high or low in PO₄.  If high take an extra binder, if low take less is how I do it.  Rarely does my PO₄ go over 4.0

[jbeany]

I would take to your doc about a binder.  Never mind ask, demand one!  It's just too hard to do it all with your diet, and one single tums clearly isn't doing enough for you.  I fought with my phos levels for ages, and kept cutting out phos foods foods until meal time was more of an aggravation than a pleasure.  The doc and dietitian finally agreed that I needed a better binder, put me on Fosrenol, and my levels have been 3 or 4's ever since, even when I eat cheese and peanut butter.

[annabanana]

Randy has had problems with high potassium/phosphorus for months. The neph finally prescribed "sodium polystyrene sulfonate" to take every other day but that didn't help so now he takes it every day. (This medicine might be just for high potassium.)

I spent a lot of time researching foods etc and finally realized that it's the serving SIZE that makes the difference. Since pretty much everything has potassium and phosphorus, he gets smaller portions of the "bad" foods to keep the mg. count down.

Randy is not supposed to drink milk, dark soft drinks, or tea made commercially. Super high in phosphorus.

Please don't let them scare you. It's good they caught this so early. 

 
 

[kellyt]

I take 3 Tums EX 750 after/with each meal and maybe 1 with a snack.  I was taking 2, but my nephrologist just upped me to 3.  My phosphorus was within range, but it was in the high part of the range.  Now it's lower and he's much happier.  So am I.  I was getting horrible restless legs (or at least that's what I call it) due to the phosphorus.  I determined that was the cause because I only had it when I had a significant amount of cheese late in the day.  Needless to say I stopped the evening cheese!  Also, I'm supposed to take the Tums EX 750 and not the regular.  I bought two bottles of the regular Tums and my doctor said to take the other.  So I keep the regular ones in my car and take 3-4 depending on what I eat when I'm out.  So far so good.  The "assorted berry" Tums are not bad at all.  Good luck!

[thegrammalady]

when i used tums i was taking 3 or 4 with each meal. once medicare kicked in and i had rx coverage the doctor switched me to renegel. (very expensive but it works) (some people can't take it because it can upset your stomach)i used to take 4 per meal but now only need 2. my phos level stays around 3.9. the thing you have to remember is to whichever binder you use with all meals and snacks. if you have dinner at 5pm, take your binders. if you have desert at 7pm take your binders. if you have lunch at noon and then fruit at 3 you need more binders at 3. tums is effective but you need to watch your calcium.

[MiSSis]

I initially took 2 Tums with each meal but started having problems with high calcium so my doctor switched me to Renagel.  Now I take 1 with breakfast (none if I only eat fruit) and 3 with lunch and dinner.  It was hard for me to remember to take them at first so we kept the prescription bottle on the dinner table so it was right in front of me.  Now it's become such a habit that when we're setting the table for dinner, either my husband or I will automatically set 3 Renagel beside my plate.  I also keep a small baggie in my purse with Renagel in it so that I'll have them available when eating out.  My phosphorus levels tend to run in the mid to upper 4's.

[spacezombie]

Years ago, my phosphorus was as high as 9. While I wouldn't recommend anyone ever do this, I didn't die. Here is what you can do:

Make sure to take your prescribed binders with each meal and each snack. Make sure you always have some in your bag when you're out. If tums are not working for you or you do not like the taste, you can switch to some sort of pill binder such as PhosLo or Renagel. Every time you forget a binder, you are absorbing more phosphorus. If you forget before the meal, you can take one afterwards or during.

Try to cut back a little on things that are high in phosphorus: Dairy products, coke and pepsi, processed food such as fast food and frozen food. If you know you are eating something that is high in phosphorus, take an extra binder before.

Talk to your doctor/dietitian about what you can do to manage your phosphorus. Perhaps you just need a different binder or more Tums with meals. One Tums with meals is a pretty low amount. I'm currently on two Renagels and three PhosLos with meals or snacks.

Another thing that lowers phosphorus is Niacin but unless you're familiar with the side effects of Niacin, I wouldn't try it. It makes you feel odd and flushed and tingly.

Consult with your doctor and work out the best plan for you!

[kellyt]

Can someone tell me what the effect of too much Calcium is?  Are there symptoms to look for?  My doctor has never mentioned that my Calicum levels are high, so I guess they are within normal range thus far.  If he gives me one more prescription med I'll scream and jump out the office window!  My little Tums are the cheapest thing I take!    And they're working.   

[spacezombie]

If he gives me one more prescription med I'll scream and jump out the office window!  My little Tums are the cheapest thing I take!    And they're working.   

I'm sorry, all the prescriptions can get overwhelming at times. But they're there to avoid serious complications. After years of dialysis, when I was finally able to get a transplant, the 45 pills I had to take a day seemed like heaven. <3

You can probably help your phosphorus quite a bit with diet. Watch that dairy and processed food and you'll be on the right track.

[kellyt]

I complain about the cost, but it's better than the alternative, right?   

[spacezombie]

Hehe, yes! I complain about the cost too! I hate when doctors prescribe something then change their minds after I've already picked up the prescription! GRRRR.

[G]

Hi Rookie,
As everyone suggested, make sure you are taking your binders (Phoslo, Renegel) with your meals. My dietitian always suggests taking them a few minutes before you eat. As far as the docs "try'n to scare you?" Heck yeah! What I am about to say may sound as if I don't agree with the professionals-but-....The numbers they use are statistics. Which means a potassium level that is high in one person might kill them where-as in someone else those same levels may have little/no effect. After a while you will find your body becomes more aware of it's needs in regard to certain chemicals. Just like cravings. It will also know when you have had too much. At least that is what I have discovered. My situation is a little unique in that I have no kidneys. Therefore, initially we had to watch my diet like a hawk. It has taken two years to where my eating habits have become intuitive. Your body, like everyone of ours, is unique. It will be able to tolerate and/or absolutey convulse towards many differant things. School has started.....listen and learn what your body is trying to teach you. Good luck, G...

[Zach]

How on earth do you avoid or cut down on Phosphorus foods, when pretty much everything has Phosphorus 

You're correct, almost all foods contain some phosphorus.  It's about the choices you make.

This site provides nutrient break downs for many foods.
http://www.nal.usda.gov/fnic/foodcomp/search/


You can also use the nifty meal planner at this site:
http://www.davita.com/diethelper/

I'm sure you'll get the hang of it in no time.  And yes, binders, binders, binders.
 

[BigDadii]

I have a question that I haven't seen asked on this site so far.

Other than chemical binders (renagel etc.) are there any natural binders you can eat or include with your meals. Maybe a food or vegetable, or something that could be included along with your diet.

Thanx
BigDadii

[Lori1851]

I just got Dustin's labs. His phoshorous is 7.8!!!! He is in the same boat as you. He is to take 4 Phosphate Binders at each meal and like 1-2 more when he eats snacks. His potassium is also high 6.6 it went up since labs last month.
Dustin takes Renagel the pills are big. He did take this chewable kind and said they tasted terrible. Im making a list of low phosphate and potassium foods and putting it on the fridge. I was told when Dustin does get his transplant if either one of these are real high he wont get his kidney.

Lori/Indiana

[flip]

Some people use Tums as a phosphorus binder.

[G]

I just got Dustin's labs. His phoshorous is 7.8!!!! He is in the same boat as you. He is to take 4 Phosphate Binders at each meal and like 1-2 more when he eats snacks. His potassium is also high 6.6 it went up since labs last month.
Dustin takes Renagel the pills are big. He did take this chewable kind and said they tasted terrible. Im making a list of low phosphate and potassium foods and putting it on the fridge. I was told when Dustin does get his transplant if either one of these are real high he wont get his kidney.

Lori/Indiana

Even if you're eating low potassium foods your levels will not drop very quickly. Especially if you are making the low potassium foods your entree. He will need to reduce his potassium intake drastically for several weeks to have any profound effect. The body gets rid of excess potassium through urinating or bowel movements. If he has no kidneys (like me) it may take a couple months for his levels to drop. Good luck, G

[Zach]

I just got Dustin's labs. His phoshorous is 7.8!!!! He is in the same boat as you. He is to take 4 Phosphate Binders at each meal and like 1-2 more when he eats snacks. His potassium is also high 6.6 it went up since labs last month.
Dustin takes Renagel the pills are big. He did take this chewable kind and said they tasted terrible. Im making a list of low phosphate and potassium foods and putting it on the fridge. I was told when Dustin does get his transplant if either one of these are real high he wont get his kidney.

Lori/Indiana

Even if you're eating low potassium foods your levels will not drop very quickly. Especially if you are making the low potassium foods your entree. He will need to reduce his potassium intake drastically for several weeks to have any profound effect. The body gets rid of excess potassium through urinating or bowel movements. If he has no kidneys (like me) it may take a couple months for his levels to drop. Good luck, G

One or two hemodialysis treatments with a 1K bath will do the trick for high potassium.

But phosphorus is much more difficult.  Keep track of what Dustin is eating, so to keep his total daily phosphorus to 1,200 mg.  And make sure he takes more binders during meals--perhaps five (about one PhosLo per 100 mg of phosphorus works well).
 

[alrightstill]

My phosophorus has been on the rise as of late as well.  I've always always taken them AFTER I eat.. but I think I'll try taking them before.

I take 5 renagels with meals and 2 with snacks (though.. honestly, I've been slacking on taking them with the snacks  ).  I'm going to be much more diligent now though.. hearing the same spiel from the doc and dietician after so many years gets to be a bit.. oh, um.. redundant.   

[petey]

Marvin has always struggled with his phosphorus levels being too high.  When he was in-center, the dietician always brought around these pictures of what happens when your phos. is too high (calcifalaxous -- sp.?).  The pictures showed toes and fingers that were literally rotting off.  One time, they brought around a picture of a penis that was being affected.  Talk about scary!!!!

Marvin has tried Tums, Renalgel, Fosrenol, and he's now taking PhosLo as his binders.  PhosLo works the best for him -- along with watching the high phos. foods and cutting back on them.  With home hemo, Marvin's phos. level has been "normal" the last 11 months.  But, he's also very, very diligent about taking the PhosLo (3 with meals, 2 with snacks) as soon as he opens his mouth to eat.  I think, for Marvin, it's a combination of the PhosLo, watching the high phos. foods, and the daily dialysis.

But, let me tell you, when I saw that picture of the penis and what can happen to it when your phos. gets too high and stays too high, I started constantly reminding Marvin to take those binders!!!  When we were training for home hemo, we saw the same pictures.  The couple training with us hadn't seen them, and they just about went into shock.  Marvin turned to the other patient (a young guy named Will) and said, "It's like this, Will.  When you think you want to eat something high in phosphorus -- like a banana split -- you say..." (and Marvin made his hands look like a scale) "...which is more important?  the ice cream or the penis?"  The nurse about wet her pants laughing at Marvin, but the message was clear.

[del]

On nocturnal dialysis with the long ,slow run phosphorus levels aren't an issue.  Hubby eats whatever he wants, no binders and levels are within the norm. Actually when he finishes his run phos is too low. The docs actually talked about adding phos to his baths but hubby said no if he had to have more phos he would eat it and enjoy it!!! The long , slow nocturnal runs really cleans phos and potassium from the blood.

When he was on conventional he had to take 3 renagel with each meal and 1 with each snack plus he watched his diet very closely

[julian230]

At one point my phosphorous level was at 12.8  And at it's highest , during the slow decline of my kidney , it was 17.2 . The doctor explained it to me like this "Its the stuff they give pigs to kill them off". I was admitted to the hospital that day , and given medication , including insulin! Even though i'm not diabetic , i went into insulin shock . Scary stuff.