Phosphorous is the DEVIL!

[HouseOfDialysis]

After three months of elevated phos levels from 6.1 to 8.0, been taking Renvela for a full two months, and now my level is 8.6.

WTF?

I THOUGHT I was watching my diet rather well. This is going to get ugly. Going mostly vegan for this month to try to get a handle on this. I hope it works.

[Cordelia]

I totally understand your frustration. Mine elevated at one point too and I thought the very same thing. I ended up taking Calcitrol, post dialysis and that helped control a bit. Also, I was on Tums too for a bit and it lowered my phosphorus considerably, so much I couldn't believe it. In just one week the Tums and watching my diet carefully made a huge difference. They had me taking the Tums-just one-the lowest dose- with my meals with my binders. That seemed to do the trick. I'm guessing its all got to do with the parathyroid gland. Mine is out of whack.

My potassium has never been an issue but my phosphorus, I have to watch carefully.

Hope it lowers for you soon.

[Cordelia]

Forgot to mention, I don't take my other medications with my binders at meal times as I think that can affect the effectiveness of your binders also. I stagger my pills so that there is a 2-3 hour gap between my binders and the other pills.

[cattlekid]

I'm in your boat too.  Just got yelled at by the neph because my phos went up to 6.7 from 4.1 last month.  She wants me on Renvela which I can't afford so I told her I have to stay on the generic PhosLo. 

I can't wait to start NxStage next month so I can spend more time planning and cooking meals.  Now with the in-center hemo, I spend all my time at work or the center and eating way too much processed food.  The dietitian here is no really no help so I am excited to see a new one who I have heard is somewhat more helpful for those of us who don't have all day to obsess about our diets.

[HouseOfDialysis]

My dietitian is as flummoxed as I am. I eat only toast with jam and or fruit for breakfast, usually a sandwich or the occasional crap fast food thing, and dinner is always home cooked and not out of whack, so I don't know what to do but go extremely ascetic for a month and see what shakes out. I always take my binders, religiously, but damn. I'm stumped.

[Cordelia]

I totally hear where you're coming from, it can be very frustrating. Our dietician is not of any much help, either and sometimes I feel like I can't enjoy anything without looking over my shoulder wondering if they'll threaten to put me on more binders.   I already take 3 Renagel binders with my meals now as it is.   

Heck, I must admit-pre renal failure I was not even ever told to watch my phosphorus intake. I did not even know what phosphorus was, much less something that would be a huge thorn in my side.     My nephrologist never, ever told me.

[sutphendriver]

I take Sensipar and Zemplar at night and 4 fosrenal with every meal.  I figure every meal I eat cost me about $23.oo before I take a bite.  But, whada ya do....

[Traveller1947]

You sound just like me, HouseOfDialysis!  I take my binders religiously, after every meal or snack, but my phosphorus is going up, while my albumin is going down!  A paradox...I can only think there's hidden phosphorus in something I eat regularly.  Hard not to obsess over this stuff...

[sullidog]

I have the same issue accept this month, I can't take calc based binders cause my calc is high too.

[pagandialysis]

My phos is up, look at my numbers in my signature. The darn phos is making me itch like crazy! I'm going out of my cotton-pickin mind!!

 

[thegrammalady]

they say take binders with every meal, but don't believe it..............take your binders EVERY TIME yo u put anything in your mouth.! if you have a family dinner then 2 hours later pie, take your binders.  if you have applesauce an hour or so before dinner, cause your hungry, take your binders!!!!!!!!!!!!!!!!!!! remember some soft drinks have phos. have a drink on a hot afternoon, take your binders!!!!!!!!!!!!!!! if you eat a candy bar, take a binder. if you take 3 with meals, take 2 with your apple sauce and 1 with your candy bar.

[mcclane]

even though i do hemo everyday, i still require phosphate binders.  The only way to slow your phosphourous levels it to stop eating period.  All foods contain phosphorous, some more than others. 

I swear, I have a 'self generating' phosphorous unit in my body somewhere, i don't have to eat anything and my phosphourous levels will go thru the roof.

[Cordelia]

Pagandialysis, I know just how you feel. Pre-renal failure I itched like the dickens, didn't know it was from high phosporus at the time.......

I ended up going on itch pills. I have no idea what they are callled, they were little green pills.......

Gosh, not even a steel brush woulda satisfied me, I clawed that bad, my back, my legs, my feet, everything itched so bad I clawed horrible til I bled.

[Traveller1947]

That explains it, mcclane!  I've got one of those self-generating phosphorus units too...

[Henry P Snicklesnorter]

.

[Restorer]

You practically have to learn food science to find all the hidden sources of phosphorus. Did you know aluminum-free baking powder has more than four times the phosphorus of regular double-acting baking powder (446 mg vs. 99 mg per tsp)? Single-acting baking powder (usually you have to make that yourself with cream of tartar + baking soda) has next to none.

If you buy baked goods (or self-rising flour), how will you know which kind of baking powder they used? The only thing you can do is look on the ingredient list, where they might call it "leavening" and give the constituent ingredients - sodium bicarbonate, (mono)calcium phosphate, sodium aluminum sulfate. If it has calcium phosphate (or monocalcium phosphate) but not sodium aluminum sulfate, you can assume they used the all-phosphate baking powder, and it might be high in phosphorus.

Watch your supplements very carefully. If there's any "phosphate" or "phosphorus" anything in the ingredients, be wary. Bring it to your doctor to check it out. Your doctor should know about all the supplements you're taking anyway.

The ingredient list is your friend. No product is required to have phosphorus levels on the nutrition label.

[M3Riddler]

After three months of elevated phos levels from 6.1 to 8.0, been taking Renvela for a full two months, and now my level is 8.6.

WTF?

I THOUGHT I was watching my diet rather well. This is going to get ugly. Going mostly vegan for this month to try to get a handle on this. I hope it works.

HouseofDialysis,

This is very common. From the looks of what I read, Are you dialyzing in-center?  This would explain your phosphorus level being high. And here are some reasons why....

With in center dialysis you are only dialyzing 3 days per week and 3 or 4 hours per treatment. This is a total of approx 9 or 12 hours of dialysis per week.  Your kidneys work 24/7.
When you only dialyze 3 or 4 hours every other day, you are removing very little phosphorus from your system. Phosphorus is a molecule that is larger and takes times to transfer to the three different compartments in the body....tissues - cells - bloodstream.   Within a 3 or 4 hour treatment, you are removing the phosphorus that is currently in your bloodstream. It takes a few hours for the remaining phosphorus to transfer from one compartment to another ( cells - bloodstream). This is why longer dialysis treatments are needed. The longer the better. It doent matter how high of a blood flow they put you at, it is still going to take time to remove.
You have your treatment, remove some of the phosphorus and then you have a day off where you are building up more phosphorus. Go to dialysis again, remove a certain amount and then you have the weekend where you are building up double the amount. 
Its a never ending process... This is why your phosphorus is where its at. The only thing that will change this is adding more hours to your dialysis. 

Have they ever offered or spoken to you about home dialysis?  With home dialysis, you are in much more control of removing toxins and you are dialyzing more often at a longer interval.  I have normal phoshorus levels. My last phosphorus was 2.8 post treatment and 3.3 pre treatment. I can eat whatever I want as I have no diet restrictions.

I know everyone is not able to perform home dialysis, but if you are, I highly suggest looking into it. Just because you are in center doesnt mean you cant switch.

When you are in center, you very likely are not receiving adequate and definitely not receiving optimal dialysis.


This also goes for fluid removal. Only a certain amount of fluid can be in your bloodstream at a given period and it takes time to remove. This is why you may experience headaches and have that washed out feeling. They are removing too much fluid too fast. The bloodstream is only able to handle approx .4L or 400cc's ( give or take) of fluid at a certain period of time. When you try to pull more than that it stresses your heart and veins.   How do they fix this when you have the washed out feeling....give you more saline, thus negating everything you just removed before hand and sometimes you will end up going home with more fluid than you came in with.        All of this can be controlled with a proper nephrologist going over everything with you.   or.....Home Dialysis......where you are in control and are able to dialyze more hours on your own schedule. You do not have to rely on someone else's schedule. No travel time and you feel great.....

Hope this helps....

[Whamo]

Does anyone know of a protein bar with low phosphorus numbers?

[cattlekid]

This is the brand that I used when I was in-center and ate a protein bar during every treatment.  I was able to purchase them at Costco.

http://www.bodybuilding.com/store/ww/pure-protein-bars.html

Does anyone know of a protein bar with low phosphorus numbers?

[Hemodoc]

My dietitian is as flummoxed as I am. I eat only toast with jam and or fruit for breakfast, usually a sandwich or the occasional crap fast food thing, and dinner is always home cooked and not out of whack, so I don't know what to do but go extremely ascetic for a month and see what shakes out. I always take my binders, religiously, but damn. I'm stumped.

What is your PTH and Ca levels? The mineral bone complex is quite complex and tied to the parathyroid as well. There are quite a few excellent meds that work with the Vitamin D receptor to bring those factors back in balance.

[cookie2008]

I have tried all the binders and I cant take them they upset my stomach so bad, I get so constipated and    Gonna use tums.

[Cordelia]

Tums constipated me even worse than the binders