So confused abot phosphorus! Help!

[hillary]

Although I am taking 3 Renvela tabs with meals and 2 with snacks, my phosphorus is still above 7.0. I dont know what I am doing wrong... I do not eat cola, legumes,  chocolate, smoked or cured meats or any of the obvious stuff.  Are plain proteins high in phosphorus? I try to snack on fresh turkeyy breast, hard boiled egg, o boiled chicken breast because my albumin is low and I was told I need more protein.

[cassandra]

Did you speak to your dietitian ?

[obsidianom]

What kind of dialysis do you do? It is possible you are not removing enough phosphorus as well as ingesting too much. How are the rest of your numbers? What about your parathyroid numbers and calcium?  What is your BUN  pre and post if on hemo and if on hemo how many hours are you on ?

[Sugarlump]

Eggs are high in phosphates (recommended no more than 3 a week) as are most dairy products (milk, cheese, yoghurt)
All meat contains phosphate but depends on the portion size but sadly the higher the protein, the higher the phosphate.

Refined white bread, crackers, cereal, white rice and pasta are lower...
so is seafood and canned tuna
feta and cottage cheese are a lot lower than hard cheese
 
Hope that helps 

[cattlekid]

Also, check your foods and beverages for inorganic phosphates. Those are the sneaky ones.  They are in everything it seems.  Just look for phosphate on the label, it might have a prefix like triphosphate or something like that.  Phosphorus binders work relatively well to remove organic phosphorus but not so much the phosphorus in inorganic phosphates.  Also, are you taking your binders at the beginning of your meal?  Taking them at the end does not work as well. 

Good luck....when I was on hemo (home and in center) phosphorus was the bane of my existence. 

[noahvale]

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[hillary]

The dietician at my center is absolutely useless. All she says over and over is to take more binders. I cannot possibly take anymore. They go right through me.  I take them at the beginning of meals and snacks.
The neph there is useless as well because he is never around.
My other numbers are good, it's only the phos that I am having trouble with.
I am extremely frustrated, I feel like I have no one to go to about this.

Most food packaging does not list phosphorus at all so I don't see how I can look at packaging.

[noahvale]

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[cattlekid]

I agree, it sucks that phosphorus is not listed specifically on nutritional info on packaging.  But it will be on the ingredient list as phosphate.  That is what is so tricky.  You may have a favorite packaged food that is high in phosphate that might be causing a problem even though it's not on the standard no-no list.

This is why it aggravates me to no end that renal dietitians are spread so thin.  Your dietitian should be working through this with you, of course, I am preaching to the choir on this.  Most dietitians and other renal support workers have such a large patient load that they can't spend the time with their patients that they should be on nailing stuff like this down so they go for the easy out like "take more binders".

Have you told anyone about your issues with the binders running through you?  There is more than one type of binder available.  Fosrenol is an alternative to Renvela as is calcium acetate (unsure of the brand name).  I was on calcium acetate and Renvela both when I was on dialysis to keep my phosphorus down. 

[obsidianom]

How many hours do you do dialysis weekly? One of the issues with just 3 day per week fairly short sessions that we do in the US is constant phosphorus issues like this. Dr. Agar in Australia has commented on this to me in our discussions as over there with more lengthy dialysis they dont see this happening. It may be you need more dialysis? Even if your numbers look good for US standards it still may indicate you need more due to the chronic phosphorus issue. It may not be just your diet.

More time on machine leads to lower phosphorus. Perhaps you can ask your nephrologist to slightly lengthen you sessions by an hour per day more.

[hillary]

Honestly, I can barely get throuh the 3.5 hours I'm on right now.  The thought of staying on for longer is very difficult for me.  I go through horrifying RLS and I have to get very doped up on Klonopin in order to deal with being on the machine at all.   I want to investigate home hemo .  That might help the situation.   But anyway, my doctor added Phoslo in addition to the Renvela and it seems to be working. My phos went from 6.5.to 5.5 in a week and a half.

[Sugarlump]

Honestly, I can barely get throuh the 3.5 hours I'm on right now.  The thought of staying on for longer is very difficult for me.  I go through horrifying RLS and I have to get very doped up on Klonopin in order to deal with being on the machine at all.   I want to investigate home hemo .  That might help the situation.   But anyway, my doctor added Phoslo in addition to the Renvela and it seems to be working. My phos went from 6.5.to 5.5 in a week and a half.

i remember when I first started dialysis (and I was only doing 3 hour sessions) and I found sitting in the chair for this time incredibly difficult. I would almost be screaming by the end of it, often asking to be took off early just to get out of chair. I dreaded every session.
It does get easier slowly... though the restless legs syndrome doesn't change much.
Doing something to take your mind off it (listening to music on headphones and close your eyes or doing a crossword or Sudoku that requires full concentration) are good distraction techniques, as is eating!!!
Good luck 

[ianch]

Ironically its those short bazooka dialysis sessions that make dialysis hard and forces adherence to strict dietary requirements. I do 160 hours a month at very slow speeds and I having a great life and eat what I want with no binders in sight. 

Completed a 12 hour session last weekend to head off a cold I was developing.  Worked a treat and oh what an energy rush. Was a very productive Sunday on manual labor.

[Zach]

Although I am taking 3 Renvela tabs with meals and 2 with snacks, my phosphorus is still above 7.0. I dont know what I am doing wrong... I do not eat cola, legumes,  chocolate, smoked or cured meats or any of the obvious stuff.  Are plain proteins high in phosphorus? I try to snack on fresh turkey breast, hard boiled egg, o boiled chicken breast because my albumin is low and I was told I need more protein.

As NoahVale has mentioned, DaVita has a good site about high and low phosphorus foods:

Some High Phosphorus Foods
Milk
Cheese
Yogurt
Ice Cream
Beer, Cola, Milk-based Coffee and Chocolate Drinks
Chocolate
Bran
Brown Rice, Wild Rice
Whole Grain Breads, Cereals & Crackers
Corn Tortillas
Pancakes, Waffles, Biscuits
Pizza
Avocado
Nuts, Seeds, Nut butters
Dried Beans & Peas
Corn & Peas
Processed Meats such as: Hot Dogs, Sausage, Turkey Sausage, Bologna
Organ Meats
Sardines

Note: The above list does not include all foods high in phosphorus. Portion size also plays a role in the amount of phosphorus you get from foods. Consult your dietitian and doctor to provide specific recommendations based on your individual needs.

Some Low Phosphorus Foods
Certain brands of Nondairy Creamers, Rice Milk (Unenriched), Soy Milks
Cream Cheese, Sour Cream
Soda-Lemon-lime, Grape, Strawberry, Cream Soda, Root Beer, Homemade Iced Tea, Homemade Lemonade, Hot Apple Cider, Cranberry Juice
Gelatin, Popsicles®, Sherbet, Sorbet
Jellybeans, Fondant, Gumdrops, Hard Candy
Unsalted Popcorn or Pretzels
Sugar Cookies, Shortbread Cookies, Vanilla Wafers, Lemon Cake, White or Yellow Cake, Angel Food Cake
Jam, Jelly, Honey, Cream Cheese
Margarine, Butter
Corn or Rice Cereals, Refined Wheat Cereals
Cream of Wheat, Cream of Rice, Grits
French, Italian or White Bread
White Rice, Pasta, Couscous
Fresh or Fresh Frozen Meat, Fish and Poultry (compared to processed)
Fruits such as: Apples, Berries, Grapes, Plums, Pineapple, Canned Pears, Peaches, Fruit Cocktail
Vegetables such as: Green Beans, Cabbage, Carrots, Cauliflower, Eggplant, Summer Squash, Bell Pepper, Cucumber, Lettuce, Onion, Radish

Note: Even if food is considered low in phosphorus, portion size also plays a role in the amount of phosphorus you get from foods. Consult your dietitian and doctor to provide specific recommendations based on your individual needs.

[talker]

Although I am taking 3 Renvela tabs with meals and 2 with snacks, my phosphorus is still above 7.0. I dont know what I am doing wrong... I do not eat cola, legumes,  chocolate, smoked or cured meats or any of the obvious stuff.  Are plain proteins high in phosphorus? I try to snack on fresh turkeyy breast, hard boiled egg, o boiled chicken breast because my albumin is low and I was told I need more protein.

Phoslo disagreed with my body systems. Tums, as suggested for me, in place of Phoslo was against my using them, regardless of what I was being told.
Is hard to explain, but you may not be doing any thing wrong, just not enough things right.

So I started looking at the whole thing from my bodies point of view.
I felt there was an imbalance of vitamins and minerals.
So did start certain supplements. But and a big but, what worked for me may not work for anyone else.
For me it has worked out well. Another talker story yet untold.

talker

[goofball]

Most food packaging does not list phosphorus at all so I don't see how I can look at packaging.

Yes, phosphorous is listed on food packaging.  Read the listing of additives!  See my above post with words to look for on packaged foods.

We can tell if there are phosphates in the ingredients list... but the actual amounts are anyone's guess.  We can't tell if it's a lot or a little.

[Sugarlump]

Have you noticed how most things low in phosphate are high in potassium ....
Can anyone create a list of low phosphate and low potassium foods???   

[ianch]

Just do more dialysis hours and you can eat whatever you want. 

https://kiwimedtec.com/pub/rkf_calculator.php

[Sugarlump]

Just do more dialysis hours and you can eat whatever you want. 

https://kiwimedtec.com/pub/rkf_calculator.php

If only!!!!! In the Uk you get what you get given 

[goofball]

Have you noticed how most things low in phosphate are high in potassium ....
Can anyone create a list of low phosphate and low potassium foods???   

I've done it already!

http://ndb.nal.usda.gov/ndb/nutrients/report?nutrient1=24&nutrient2=25&nutrient3=26&fg=&max=25&subset=0&offset=7575&sort=c&totCount=7622&measureby=g

[Sugarlump]

Have you noticed how most things low in phosphate are high in potassium ....
Can anyone create a list of low phosphate and low potassium foods???   

I've done it already!

http://ndb.nal.usda.gov/ndb/nutrients/report?nutrient1=24&nutrient2=25&nutrient3=26&fg=&max=25&subset=0&offset=7575&sort=c&totCount=7622&measureby=g

Wow! I really need a shortened version of foods i can eat without raising my levels too high.
It's easier to identify what you can't eat than what you can!!!

[goofball]

Check out Napa cabbage!  It's delicious and super-low in both.

Egg whites are a fantastic source of low-P/low-K protein.

[Sugarlump]

What is Nappa cabbage??? Do we have an english equivalent.
And of course I have to fatcor into the ocassion, Vitamin K content (particularly in green leafy veg), as am on warfarin! 

[goofball]

It's a big cabbage shaped like a torpedo.  It's sometimes called "celery cabbage" and "Chinese cabbage."

It has a very mild taste and an excellent texture.  It keeps for weeks in the fridge!

HOWEVER for you... it's moderate in vitamin K.
http://www.campbell.amedd.army.mil/pharmacy/Warfarin.pdf

45 mcg vitamin K per 100g Napa cabbage

[noahvale]

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