High Phosphorus

[angela515]

I am struggling with lowering my phosphorus. Ever siince I started dialysis in 4/04 its been high. I was on hemo for a yr, then switched to PD.. I been on PD for a little over a year, and I like it a lot better. A few months ago I was admitted to the hospital b/ I had started to get all these weird sores all over my body and my phosphorus was sky high and my PTH levels were over 1200. They biopsyd one of the sores and in the meantime they monitore my diet, made sure i got my binders, and scheduled me to get my parathyroid glands taken out. Once the biopsy came back negative for calciphylaxis, they drew labs again and my PTH came back down to the 800's, so they cancelled the surgery (thank god I dont wanna have it done).. by the time I left the hospital my PTH had dropped back downt o 300's and my phosphorus was normal. Next time  went in for monthly labs it was back up again, so the first thing they said to me was "Your not taking your binders or you sensipar". I was in shock they would just come out and acccuse me of not taking meds, and started yelling.. because I never miss my meds. I take my meds like clock work... so idunno. I try to make sure I eat lower phos food instead of high, and so on and so forth... but each month my numbers remain high. Anyone else?

Angela

[kitkatz]

I am bad with phosphorous.  The PTH went high for months and I itched like crazy. Had the parathyroids taken out and the itchies have pretty much stopped. I have no idea how the blood work is doing yet.  Angie, on this board, follows the phosphorous diet really well. Angie words of advice?  I am awful about following the renal diet, so no help here in that area.

[Fighter]

Yeah, angie, I'd like to hear it too. Phosphorus is kind of my Achilles heel as far as diet is concerned (well, along with salt and potassium  ). I take loads of binders (Renagel - 6x800g a day) and I manage to keep my numbers down, but maybe if I ate a little less phosphosus I could cut down on the meds...

[meadowlandsnj]

I try to make sure I eat lower phos food instead of high, and so on and so forth... but each month my numbers remain high. Anyone else?

Angela

I have trouble with phos also.  Mine is always on the high side.  I take Renagel 800 5 with breakfast, 6 with lunch and 6 with dinner.  I also just started on Sensipar.  I had a talk with the dietician at my center and she told me they're adding phos to more and more foods every day.  I was eating frozen chicken breasts, unbreaded and grilled and she told me they're loaded with it.  ALso waffles, french toast that's the frozen kind are loaded with it.  Processed chicken, turkey--especially Butterball turkeys so watch out this Thanksgiving for that.  One good thing is that my albumin is finally up there but that's from eating more meat like chicken and turkey.  Thus my phos is higher.   

She gave me a list of foods with hidden phos in it--I'll have to find it and post some of it.  But what are we supposed to do?  Eat crackers--which they say are loaded with hydrogenated vegetable oils and are very bad for you. 
We can't win.  But I eat things in moderation, I basically eat what I like except for the obvious things.  My bloodwork is pretty good excect for the phos which has been higher than normal. 

[goofynina]

I try to make sure I eat lower phos food instead of high, and so on and so forth... but each month my numbers remain high. Anyone else?

Angela

I have trouble with phos also.  Mine is always on the high side.  I take Renagel 800 5 with breakfast, 6 with lunch and 6 with dinner.  I also just started on Sensipar.  I had a talk with the dietician at my center and she told me they're adding phos to more and more foods every day.  I was eating frozen chicken breasts, unbreaded and grilled and she told me they're loaded with it.  ALso waffles, french toast that's the frozen kind are loaded with it.  Processed chicken, turkey--especially Butterball turkeys so watch out this Thanksgiving for that.  One good thing is that my albumin is finally up there but that's from eating more meat like chicken and turkey.  Thus my phos is higher.   

She gave me a list of foods with hidden phos in it--I'll have to find it and post some of it.  But what are we supposed to do?  Eat crackers--which they say are loaded with hydrogenated vegetable oils and are very bad for you. 
We can't win.  But I eat things in moderation, I basically eat what I like except for the obvious things.  My bloodwork is pretty good excect for the phos which has been higher than normal. 

Although i hate to admit this, i am so glad i am not the only one with these problems, i am sorry we have to go through this at all but there is nothing we can do, it just helps to know that i am not alone in this battle... Thanks everyone 

[jbeany]

Darn it, the renal diet stuff I've seen says waffles are a good choice for a renal diet.  Do they only mean the homemade ones?  Why don't the labels show phosphorus? 

I can make them myself with the waffle iron from now on, I suppose.  Cuts down on the salt, too.

[vandie]

Darn it, the renal diet stuff I've seen says waffles are a good choice for a renal diet.  Do they only mean the homemade ones?  Why don't the labels show phosphorus? 

I can make them myself with the waffle iron from now on, I suppose.  Cuts down on the salt, too.

My daughter loves waffles.  We make a big batch and put them in the freezer.  They warm up nicely in the toaster

[NY2FL]

Phosphorous/Calcium balance is the bane of every renal patient.
I find it easier maintaining my balances by trying to keep clear of
processed foods. Most preservatives are Potassium or Phosphorus
based. Just read the ingredients. As far as finding what has Phosphorus,
and how much, the standard nutrition label is useless.  I use the
INTERNET NUTRITION DATABASE
http://www.nutritiondata.com/index.html
Very complete listing for common as well as processed and fast
foods. A fantastic resource.

Along with diet, the most important thing is, of course, Binders.
If you don't think your binders are working...ask your doc to prescribe
 something else. Every year there are more and more choices.
Also, might ask to try a different combination of binders. I have been
working well with a combo of Renagel and a little Phoslo.
And remember..,your Docs are not trying to make your life miserable.
They want you to have good levels. If they are not helping you and
giving you options.

I say READ EVERYTHING...just as an example of how is feels like we
are being sabotaged every day....
Take a look at the ingredients and for Aquafina Flavor Splash Water...
YES....WATER!
                   Filtered water, natural Flavors, Citric Acid,
                   Sodium Hexametaphosphate, Phosphoric
                   Acid, Sodium Benzoate, Sodium Citrate,
                   Sucralose, Calcium Disodium EDTA
So when your dietitian sez "pic a CLEAR beverage"  over a cola, you
could be getting just as much phosphorous. Don't be tricked.
Know what your consuming and you can manage phosphorous.   

[goofynina]

Great link Ny2Fl, very informative, thanks for posting that,  and thank you for also telling us about the flavored water, it is so true what you said,  even with clear fluids there can be phosphorus lurking... great post,   

[meadowlandsnj]

Great link Ny2Fl, very informative, thanks for posting that,  and thank you for also telling us about the flavored water, it is so true what you said,  even with clear fluids there can be phosphorus lurking... great post,   

I found this article in the Journal of Renal Nutrition:
Conflicting Dietary Advice for Adhering to Low-Sodium and Low-Phosphorus Diets
http://www.jrnjournal.org/article/PIIS1051227606001580/fulltext
Volume 16, Issue 4, Pages 332-336 (October 2006)

 
and
Hidden Phosphorus-Enhanced Meats
http://www.jrnjournal.org/article/PIIS1051227605001196/fulltext

If you go to jrnjournal.org they have a lot of good articles and most are free or abstracts

[goofynina]

Great link Ny2Fl, very informative, thanks for posting that,  and thank you for also telling us about the flavored water, it is so true what you said,  even with clear fluids there can be phosphorus lurking... great post,   

I found this article in the Journal of Renal Nutrition:
Conflicting Dietary Advice for Adhering to Low-Sodium and Low-Phosphorus Diets
http://www.jrnjournal.org/article/PIIS1051227606001580/fulltext
Volume 16, Issue 4, Pages 332-336 (October 2006)

 
and
Hidden Phosphorus-Enhanced Meats
http://www.jrnjournal.org/article/PIIS1051227605001196/fulltext

If you go to jrnjournal.org they have a lot of good articles and most are free or abstracts

See what i mean,    i learn so much from you all, my IHD family...  Thanks Meadowlandsnj 

[kitkatz]

Bring on the rice cakes and water...ooops no flavored water anymore!

[Zach]

Just to add to the discussion:

http://ihatedialysis.com/forum/index.php?topic=1526.0


and:

http://ihatedialysis.com/forum/index.php?topic=828.0

[Zach]

And let's not forget:

http://ihatedialysis.com/forum/index.php?topic=886.0

[angela515]

You know, I wonder if we(we meaning all dialysis patients across the country) could write whoever is in charge of nutritional labels on foods/drinks, asking for phosphorus content to be mandatory on labels just like protein and potassium and such... There is soooo many people across the country alone on dialysis that it would impact a lot of people. Having the actual phosphorus content on the label, would help dialysis patients choose better food options when they know exactly what they are getting while shopping in the stores.  Just my 2 cents.

[BigSky]

Darn it, the renal diet stuff I've seen says waffles are a good choice for a renal diet.  Do they only mean the homemade ones?  Why don't the labels show phosphorus? 

I can make them myself with the waffle iron from now on, I suppose.  Cuts down on the salt, too.

Actually it is serving size that one needs to pay attention to.   Many times the serving size they use is not alot.

A commercial waffle is usually about 120 mg of phosphorus per waffle.

A homemade one (2.6 oz) is about 130 mg of phosphorus per waffle.

This is listed as being a medium phosphorus food.  However was it worth it considering the bite it takes out of the allowed PO₄ per day   RDA PO₄ for a healthy person is suppose to be 700 mg, (not like anyone follows that though).

For many dialysis patients it can range from 800-1,200 mg a day.  If one was at the 1,200 mg limit a day that one "plain" waffle is over 10% of your PO₄ content for the day. 

to echo something Zach has posted in another post, one has to consider that protein intake eats up most if not all of allowed PO₄ intake per day it allows very little leeway for anything else with PO₄ in it to be eaten. 

[Zach]

Phosphorous/Calcium balance is the bane of every renal patient.
I find it easier maintaining my balances by trying to keep clear of
processed foods. Most preservatives are Potassium or Phosphorus
based. Just read the ingredients.Along with diet, the most important thing is, of course, Binders.
If you don't think your binders are working...ask your doc to prescribe
 something else. Every year there are more and more choices.
Also, might ask to try a different combination of binders. I have been
working well with a combo of Renagel and a little Phoslo.

This is very true.  We must read the labels ... both the "nutrition labels" and the ingredients.  No one can do it for us.  We can't wait for the government.

[angela515]

Darn it, the renal diet stuff I've seen says waffles are a good choice for a renal diet.  Do they only mean the homemade ones?  Why don't the labels show phosphorus? 

I can make them myself with the waffle iron from now on, I suppose.  Cuts down on the salt, too.

Actually it is serving size that one needs to pay attention to.   Many times the serving size they use is not alot.

A commercial waffle is usually about 120 mg of phosphorus per waffle.

A homemade one (2.6 oz) is about 130 mg of phosphorus per waffle.

This is listed as being a medium phosphorus food.  However was it worth it considering the bite it takes out of the allowed PO₄ per day   RDA PO₄ for a healthy person is suppose to be 700 mg, (not like anyone follows that though).

For many dialysis patients it can range from 800-1,200 mg a day.  If one was at the 1,200 mg limit a day that one "plain" waffle is over 10% of your PO₄ content for the day. 

to echo something Zach has posted in another post, one has to consider that protein intake eats up most if not all of allowed PO₄ intake per day it allows very little leeway for anything else with PO₄ in it to be eaten. 

I didn't understand any of that. Flew riht oer my head.

[jbeany]

Part of the point being that store bought waffles are tiny, but have the same total phos as a plate sized homemade one.

The rest of Bigsky's point was that by the time we eat the recommended amount of protein for the day, our phos total is already over the amount we're supposed to have, and we shouldn't eat anything else with phos in it.  That's not actually possible, not if you want to get any real nutrition.

In other words, to follow all the parts of the renal diet recommendations perfectly is actually impossible to do.  All you can do is try your best.

[Zach]

In other words, to follow all the parts of the renal diet recommendations perfectly is actually impossible to do.  All you can do is try your best.

You're right, jbeany, all we can do is try our best.  But it's not impossible, just very difficult to follow all the parts of the renal diet recommendations.

Just like NY2FL said, we need to wean ourselves away from regularly eating pre-made and/or processed meals.  When we prepare and cook our own meals we have a lot more control over what is in it and what is not.

I know this is not easy.  Between dialysis and work, I don't have a lot of time for food shopping/cooking.  But if we're ever going the beat this diet thing, we have to take responsibility for our actions.

It is very hard.  I still struggle with phosphorus while trying to reach my protein and calorie requirements.

Labels on foods are now starting to list potassium and phosphorus, usually as Daily Values % (DV, not to be confused with the RDA amounts) on the bottom part of the list in small print.  But it's not yet uniform for our needs.  Daily Value (DV) for phosphorus is 1,000 mg, so an item that has 10% DV has 100 mg of phosphorus.

I try the food company's web sites ... some are better than others.  Just don't let them tell you there's no phosphorus when there is a Milk Protein such as: Casein, Calcium Casinate, Sodium Casinate.  I believe they all contain some phosphorus ... just maybe not a lot.  Not all products are even tested for phosphorus!   

Below is a good site for finding out the values.  It is the U.S.D.A.'s Nutrient Data Laboratory web site.
Just hit the search link once you arrive.  It doesn't have everything, and you have to be precise in how you write the food item:  egg    not   eggs

Have fun!

http://www.ars.usda.gov/Main/docs.htm?docid=4451

[jbeany]

I really like that site, Zach.  I used that link to figure out the totals for the meal I cooked yesterday. I totaled up phos, potassium, sodium, and carbohydrates.

My conclusion was that chili is no longer going to be on my diet plan at all once I start dialysis.

[Zach]

Then there is this important quote from BigSky.  He even has info on software to help to keep track of food intake:

You might be eating something high and you do not know it or its possible you are eating too much PO4 at one time and causing an overload of it to where the binders cannot handle it.

You can try eating smaller meals but more of them.  Instead of 3 or so move to 6.  This way it spreads the PO4 out more.  Personally I take 1 binder for every 150 mg of PO4.  This way I adjust from meal to meal just how many binders I take with each meal

Go to dietpower.com and download the free software or order the free trial cd.  It should be good for two weeks before it locks you out.  It is very helpful.

It sucks   but measure/weigh everything you eat and then input it into the program.  Throughout the day and at each days end you can see a rough amount of how much PO4 you are taking in. 

[BigSky]

You're right, jbeany, all we can do is try our best.  But it's not impossible, just very difficult to follow all the parts of the renal diet recommendations.

Just like NY2FL said, we need to wean ourselves away from regularly eating pre-made and/or processed meals.  When we prepare and cook our own meals we have a lot more control over what is in it and what is not.

I know this is not easy.  Between dialysis and work, I don't have a lot of time for food shopping/cooking.  But if we're ever going the beat this diet thing, we have to take responsibility for our actions 

I would agree that it is not impossible to follow all parts of the renal diet.

The hard part (at least for me) was breaking ones self from the convenience of processed and prepared foods and the fact that some of those foods are pretty darn tasty.    That can be very, very tough.   

[Zach]

The hard part (at least for me) was breaking ones self from the convenience of processed and prepared foods and the fact that some of those foods are pretty darn tasty.    That can be very, very tough.   

 

[angela515]

Quick question related to phosphorus.... how are we supposed to be taking our binders? Right before we take our first bite? One at the begining, middle and end? All at the end? How?