I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: angela515 on November 05, 2006, 06:57:15 AM
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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
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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.
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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 :P). 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...
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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.
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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 :grouphug;
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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? :banghead;
I can make them myself with the waffle iron from now on, I suppose. Cuts down on the salt, too.
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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? :banghead;
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
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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.
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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, :clap;
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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, :clap;
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
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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, :clap;
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, :P i learn so much from you all, my IHD family... Thanks Meadowlandsnj :2thumbsup;
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Bring on the rice cakes and water...ooops no flavored water anymore!
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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
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And let's not forget:
http://ihatedialysis.com/forum/index.php?topic=886.0
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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.
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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? :banghead;
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.
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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.
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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? :banghead;
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.
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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.
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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
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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. :P
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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.
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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. :-\
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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. :-\
:beer1;
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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?
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It is best to take your binders in the middle of the meal. If the meal that i am eating is high in phosphorus i will take 3 in the middle and 2 at the end, but if it isnt, i take them all in the middle of the meal :P :twocents;
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Thanks, I have always wondered if I have been taking them right or not, maybe that is why i cant get my phosphorus down.. dunno. We shall see!
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I have always had the same question. I asked three different people and got three different answers. So I went with the nephrologist answer to just take the damned things when I remember to take them at meals. I find afterwards helps to stop the throwing up I had and nauseousness.
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Quick question related to phosphorus.... how are we supposed to be taking our binders? Right before we take our first bite? One at the beginning, middle and end? All at the end? How?
It may depend on your binders, but I take mine a few minutes before I eat. I use Calcichew.
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I take Renegel.... big big pills ughhh, lol... 5 of them with each meal, geez its like a meal in itself! ::)
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Okay, my phosphorous is suddenly up. I haven't changed my eating habits since my last good phosphorous test, so I'm trying to figure this out. I was wondering some specifics about the test. When they take your blood and do a lab test, does that show the what the phosphorous levels in your blood are at the exact moment you had the blood drawn, like doing a before meal glucose test, or does it show a longer range of time, like the HBA1C that shows my blood sugar averages for the last 2 months? When epo and goofy talk about fasting to get better numbers the day before their blood work, does that really work? Are my phos levels up because I had a yougurt the night before, or are they up because of what I've been eating for the last few weeks?
And in my searching, I also found this on the Medline Medical Encyclopedia. . . .
"Nonpharmacological factors that can affect PO4 measurements include: enemas containing sodium phosphate, excess vitamin D supplements, and intravenous glucose administration (because PO4 enters cells along with glucose)."
Okay, if I'm reading that right, high levels of glucose in your blood can affect your PO4 levels. I've been having problems with my blood glucose (I'm diabetic) in the last month. I've been fighting it daily, because stress makes it go up, and the first month on dialysis was certainly high stress for me. So is it possible my phos levels went up because my blood sugar did?
So my sugar went up because I'm stressed, so my phos went up because my sugar went, and now I'm stressed about my phos levels because when they went up, my PTH went up.
Auuuuuuugh!!!!! :banghead;
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When they take your blood and do a lab test, does that show the what the phosphorous levels in your blood are at the exact moment you had the blood drawn ...
In most part it's a reflection of how much you ate since your last dialysis treatment. But it is also a build up over a period of time. Fasting is a bad idea, because it gives a false reading of what should be your normal meal consumption (as well as PO4 consumption).
Perhaps try to increase you binders, as well as try to avoid high phosphorus foods like yogurt when you have a higher glucose level.
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My last blood results showed two things of concern - phosphorus and cholesterol - both things dependant on my 'compliance'. Well, I have a real problem with that. After 16 months on dialysis, I have still not got accustomed to remembering to take my binders. And as for the Lipitor, some nights I forget, like last night (but that is getting better).
I don't know what to do with myself to make me remember these things.
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You just need to get it into your head that before you eat anything you pop a binder. If your are set down to a big meal you pop 2 or 3.
Do you want to end up in a wheel chair?
:cuddle;
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After 16 months on dialysis, I have still not got accustomed to remembering to take my binders ... I don't know what to do with myself to make me remember these things.
Try keeping them out on the kitchen table or where ever you eat. Maybe each morning leave out 6 or 9 binder tablets, so you can see them. Put some in a baggie in your car, in all your coats, and in your purse.
I keep them on my desk at work, on a little glass plate and in all my jackets.
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My last blood results showed two things of concern - phosphorus and cholesterol - both things dependant on my 'compliance'. Well, I have a real problem with that. After 16 months on dialysis, I have still not got accustomed to remembering to take my binders. And as for the Lipitor, some nights I forget, like last night (but that is getting better).
I don't know what to do with myself to make me remember these things.
What got me to remember was my labs never being normal, always being high, causing sores on my body, painful sores...that right there made me remember, if i eat something, I need to take my binders.
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I had a devil of a time remembering to take my pills every day, so I put them in those daily pill reminder containers and that helps me to remember to take them every morning. I forget binders too, so I agree with putting them everywhere to remind you to take them.
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My last blood results showed two things of concern - phosphorus and cholesterol - both things dependant on my 'compliance'. Well, I have a real problem with that. After 16 months on dialysis, I have still not got accustomed to remembering to take my binders. And as for the Lipitor, some nights I forget, like last night (but that is getting better).
I don't know what to do with myself to make me remember these things.
What got me to remember was my labs never being normal, always being high, causing sores on my body, painful sores...that right there made me remember, if i eat something, I need to take my binders.
So Angela, now that you've gotten your transplant, have those sores started going away like they said they would?
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I had a devil of a time remembering to take my pills every day, so I put them in those daily pill reminder containers and that helps me to remember to take them every morning. I forget binders too, so I agree with putting them everywhere to remind you to take them.
I carry a extra little prescription bottle in my coat with binders. I also keep one in the car just in case I forget my coat.
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I saw this today:
By reading nutrition labels of beverages, processed and packaged foods, you can identify and avoid these ingredients:
Phosphoric Acid
Sodium Polyphosphate
Monocalcium Phosphate
Dicalcium pyrophosphate
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I saw this today:
By reading nutrition labels of beverages, processed and packaged foods, you can identify and avoid these ingredients:
Phosphoric Acid
Sodium Polyphosphate
Monocalcium Phosphate
Dicalcium pyrophosphate
http://angieskidney.com/AK/Info.html#phosphate
We are told what foods are high in phosphate but what about the ingredients in foods we dont understand?
List B- Additives with suspect ingredients - USA and Canada
- Acetylated distarch phosphate
- Acid calcium phosphate
- Acid sodium pyrophosphate
- Ammonium phosphate dibasic
- Ammonium phosphate monobasic
- Ammonium phosphatides
- Ammonium polyphosphates
- Ammonium salts of phosphatic acid
- Bone phosphate, edible
- Calcium hydrogen orthophosphate
- Calcium phosphate dibasic
- Calcium phosphate monobasic
- Calcium phosphate tribasic
- Calcium polyphosphates
- Dicalcium diphosphate
- Dicalcium pyrophosphate
- Disodium dihydrogen diphosphate
- Disodium dihydrogen pyrophosphate
- Disodium hydrogen orthophosphate
- Distarch phosphate
- Edible bone phosphate
- Guanosine 5' - (disodium phosphate)
- Hydroxypropyl distarch phosphate
- Inosine 5' - (disodium phosphate)
- Magnesium hydrogen dibasic
- Magnesium hydrogen phosphate
- Magnesium hydrogen tribasic
- Monocalcium orthophosphate
- Monocalcium Phosphate
- Monostarch phosphate
- Orthophosphoric acid
- Phosphated distarch phosphate
- Phosphoric Acid
- Polyphosphates, ammonium
- Polyphosphates, calcium
- Polyphosphates, potassium and sodium
- Potassium dihydrogen orthophosphate
- Potassium phosphate dibasic
- Potassium phosphate monobasic
- Potassium phosphate tribasic
- Potassium polyphosphates
- Potassium tripolyphosphate
- Riboflavin-5'-phosphate sodium
- Sodium acid pyrophosphate
- Sodium aluminium phosphate, acidic
- Sodium aluminium phosphate, basic
- Sodium dihydrogen orthophosphate
- Sodium phosphate dibasic
- Sodium phosphate monobasic
- Sodium phosphate tribasic
- Sodium polyphosphates
- Sodium pyrophosphate
- Sodium tripolyphosphate
- Tetrapotassium diphosphate
- Tripotassium orthophosphate
- Tetrasodium diphosphate
- Trisodium diphosphate
- Trisodium orthophosphate
Also be wary of Milk Protein such as: Casein, Calcium Casinate, Sodium Casinate.
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You need to AVOID all of those? So what can you eat? Anything?
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You need to AVOID all of those? So what can you eat? Anything?
That is what binders are for :P
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You need to AVOID all of those? So what can you eat? Anything?
There are lots of foods we can eat!
But that's why it's better to prepare your own meals sometime and not buy processed foods all the time--you have control of what's in it. Whatever happened to the idea of "home made?" Cook 4 or 5 chicken breasts, put 2 in the refrigerator, and freeze the rest for another day. Do that with other meals as well. That way you always have something on hand to eat. Now that's home-cooked fast food!
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If I eat again, shoot me!
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As far as my experiences go good frequent bowel movement with renagel helps to lower your phospherous considerably. My latest phosphorus count was 3.1.
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Hi Angie:
You mentioned a rash you had. I have an itchy rash on my neck, chest, and it's now starting on my face and arms. I also have a high pth (800). Did they ever say if the rash was from your phosphorous? Did they give you anything for it? My doctor gave me Fluoconide (sp?) but it doesn't seem to be working. It's a petroleum based product so I hate putting it on my face and I'm supposed to do it four times a day! But it's really gross looking (looks like I have leprosy or something) and itches like crazy. Please tell me if they did anything for you!
Thank you
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Hi Angie:
You mentioned a rash you had. I have an itchy rash on my neck, chest, and it's now starting on my face and arms. I also have a high pth (800). Did they ever say if the rash was from your phosphorous? Did they give you anything for it? My doctor gave me Fluoconide (sp?) but it doesn't seem to be working. It's a petroleum based product so I hate putting it on my face and I'm supposed to do it four times a day! But it's really gross looking (looks like I have leprosy or something) and itches like crazy. Please tell me if they did anything for you!
Thank you
See about having them put you on Sensipar. That will lower the pth pretty fast. Also since the drug is fairly new doctors should be able to give samples of the drug until your ideal pth level is reached. The sensipar will help lower both calcium and the PO4 levels some.
On another note, Glad to see you back on the boards. ;D
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Good referral websites. :thx;
My phosphorus: 6.1 way to high but down from 6.4 praying for a better reading on my May labs. :banghead;
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Good referral websites. :thx;
My phosphorus: 6.1 way to high but down from 6.4 praying for a better reading on my May labs. :banghead;
OK Duane, we want to see that Phosphorus come down a little lower next time *or else* :popcorn; ;)
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Yep it has to come down for me.
That's the only way i'll know if i feel better, guess i'll try harder and see.
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Have they ever given you Kayexalate Duane? That's what I took before dialysis, and not eating, brought mine down to a normal range. It tastes gross and will have ya running for the bathroom, but it brings down your potassium right away.
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Have they ever given you Kayexalate Duane? That's what I took before dialysis, and not eating, brought mine down to a normal range. It tastes gross and will have ya running for the bathroom, but it brings down your potassium right away.
I think he is talking about his Phosphorus Chicken Little. But i have had that stuff, it is the gritty stuff that is like sand when you drink it? Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it :-\ Thank God i was in the hospital and didnt have to clean it ::)
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I think he is talking about his Phosphorus Chicken Little. But i have had that stuff, it is the gritty stuff that is like sand when you drink it? Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it :-\ Thank God i was in the hospital and didnt have to clean it ::)
Oh, yeah. Kayexalate is for the other P word. ;D
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I think he is talking about his Phosphorus Chicken Little. But i have had that stuff, it is the gritty stuff that is like sand when you drink it? Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it :-\ Thank God i was in the hospital and didnt have to clean it ::)
Oh, yeah. Kayexalate is for the other P word. ;D
Yeah, POOP lol :D
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Try keeping count of the phosphorus in the foods you eat per day, and try to stay within the limit of 1,000 mg per day. And of course, don't forget your binders. ;)
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Thanks i'm going to ask for that stuff. I also have to remember to take my binders after each meal. :thx;
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That is one thing I am very careful with this weekend. I am really taking binders like crazy.
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I think he is talking about his Phosphorus Chicken Little. But i have had that stuff, it is the gritty stuff that is like sand when you drink it? Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it :-\ Thank God i was in the hospital and didnt have to clean it ::)
Oh, yeah. Kayexalate is for the other P word. ;D
I cannot take that sgtuff... just the smell and site alone, makes me vomit. One sniff.. and PUKE. It's like an instant automatic respone to that nasty stuff.
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I also have a high pth (800).
Ideal pth should be around (300), phosphorus should be around 5.5
you are in the danger zone at 800.
A phosphorus food finder guide would teach you what to eat daily.
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I also have a high pth (800).
Ideal pth should be around (300), phosphorus should be around 5.5
you are in the danger zone at 800.
A phosphorus food finder guide would teach you what to eat daily.
Sometimes, like in my case, you can watch your phos intake to a T and still have very high phos and PTH... due to an enlarged parathyroid gland(s). Only solution to that is to remove it if the Sensipar and such arent helping decrease the numbers.
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Sorry again guys for ringing in late on this one.
My problem was I never wanted to acknowledge I was different than anyone else. I went to lunch with the people from work and ordered whatever I wanted. Hit and miss on the Renagel and just was basically stupid. :urcrazy;
When I went into the hospital this last month, my createnine was up to 10.1. Again, stupid.
Hey Duane how are your numbers?
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Whenever patients are blamed for bad blood chemistry results, I feel they should point out that the real blame belongs with the medical profession for having provided such an utterly inadequate treatment as hemodialysis and pd, since these are not able to permit people to live normally, or even to control their blood values with a strict diet.
It is also standard practice in medicine to blame the patient for not taking the medicine prescribed rather than call into question the omnipotent wisdom of the drug companies and the doctors in providing the medicine. I remember seeing every single patient at a glaucoma clinic in 1978 being blamed for not taking their eyedrops because their intra-ocular pressures were rising over time, but only later was it discovered that the drug prescribed lost its effectiveness over time! No apology was ever given to the patients for the scolding they had received.
My dialysis unit had a summer camp providing holidays for dialysis patients, and at the camp they were constantly fed hot dogs, even though these are very high in phosphorus. "Oh well, we just found anything else too difficult to prepare," was the excuse they gave when I complained. So I have to wonder, why is it all right for the institution to become lax about the diet but not the patient? They obviously find it harder even institutionally to comply with a regimen they expect us to endure as individuals.
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Whenever patients are blamed for bad blood chemistry results, I feel they should point out that the real blame belongs with the medical profession for having provided such an utterly inadequate treatment as hemodialysis and pd, since these are not able to permit people to live normally, or even to control their blood values with a strict diet.
It is also standard practice in medicine to blame the patient for not taking the medicine prescribed rather than call into question the omnipotent wisdom of the drug companies and the doctors in providing the medicine. I remember seeing every single patient at a glaucoma clinic in 1978 being blamed for not taking their eyedrops because their intra-ocular pressures were rising over time, but only later was it discovered that the drug prescribed lost its effectiveness over time! No apology was ever given to the patients for the scolding they had received.
My dialysis unit had a summer camp providing holidays for dialysis patients, and at the camp they were constantly fed hot dogs, even though these are very high in phosphorus. "Oh well, we just found anything else too difficult to prepare," was the excuse they gave when I complained. So I have to wonder, why is it all right for the institution to become lax about the diet but not the patient? They obviously find it harder even institutionally to comply with a regimen they expect us to endure as individuals.
Well said :clap;
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I totally agree with everything about Phosphorus. First this was never a problem before my kidneys started failing. I do have a question, does Renegel have an side affects like constipation. I have not been regular since I started Dialysis so maybe its the Dialysis treatment that is doing this. Any thoughts?
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I feel like I'm on Oprah. She's always talking about Poo on her show!
I was always regular. But again, I was always drnking fluids (no restrictions in my head) and eating a normal diet.
Did you talk to the doc about this?
Hate to take another pill to resolve another issue though and that's probably what they'll tell you.
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My phosphorus is usually pretty high, the renagel dosent do much except give me indigestion. the sensipar helped me feel a bit better tho. Either way the doctors still complain about my phos. hopefully hemo will help.
its almost like they're trying to sneak as much phos into foods as possible :p its always written real small too
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You know...I had problems with Renagel.... Next to the fact that it was EXPENSIVE as all heck to get and the insurance really fought to pay for it, I found that it didn't really work all that well for me. Instead, I was placed on Phos-Lo.... It is calcium acetate and it seems to be doing the trick.... The hardest part is remembering to consistently take the dang thing.... But when I do...it does work WONDERS!!! And this is coming from someone who's had the subtotal parathyroidectomy and is consistently battling hypocalcemia......
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Has anyone tried Fosrenol? Very expensive but I have no side affects and it does control my phosphorus levels. With the new Medicare drug program(through Humana) it is $60 for a months supply.
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I used to use Fosrenol but after awhile the chalkiness got to me and i would make myself sick just think of having to chew it, now i eat Tums Smoothies which work well too (as long as my calcium doesnt go up) and so far so good ;)
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im on renagel and sensipar, no side effects from the sensipar but with renagel i get godawful indigestion. when i complained to the doctor he said "thats what its supposed to do"
luckily i live in canada and with our prescriptin drug insurance i pay a maximum of 73 dollars for all my meds
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my husband has been using Fosrenol and Phos-Lo --two swallow and 1 chew per meal, but i am concerned about his calcium which is a high- his PO4 is 5.5, but his calcium is like 9.8- he has changed to 1 phoslo and two fosrenol for this month-
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it sure is an ongoing and ever-changing battlefield, phosphorous is. there is no such thing as adequate labelling for it, or potassium either. my doc is presribing sensipar after my last blood work and has cut my useage of tums in half because my calcium is a little high.
i guess its a lot like surfing, hey?
;)
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I've been battling Phos for the 10 yrs I've been on PD. It's only in the last couple of years that I started taking my diet and meds, or maybe I should say just my meds seriously. Now my phosphorous is low but my PTH is 400 and rising. It really is a battle, isn't it!?! :boxing;
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It really is a battle, isn't it!?! :boxing;
You can say that again. And so far, I am not winning. I keep forgetting to take binders. My last two blood results made my nephro come and chat with me. I want to do well, but I need to do something very serious about it.
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yes the binders are a very important thing, mine is at 3.5 at the moment, the thing that annoys me a lot through is when ever somethings high they say, YOU CAN'T EAT THAT or YOU CAN'T EAT THIS, but never just wtf we are allowed to eat. I mean even the list they gave me is all what you are not supposed to eat.
But most of the time I have good levels and eat bad pretty mich every day, like now I'm eat a big mac, where are my binders?
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You know, this whole situation is hard. It's hard to have to remember to take so many pills and consistently take everything on time. It's obviously not very fair, but I realize that these are the cards that I was dealt and it's up to just me to figure out how I choose to play them. It's difficult to remember binders at every meal and snack...but I really don't have an excuse to forget them. Or maybe it's realizing that the life I have at the start of each new day is the reward I get for doing what I need to do.....
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But most of the time I have good levels and eat bad pretty mich every day, like now I'm eat a big mac, where are my binders?
*sniff sniff* Is that a Big Mac i smell? I could swear i smell a Big Mac, oh thats it, i am going to go get me one for dinner too dangit, :2thumbsup; better find them binders SpeedFlex, i pop Tums, those seem to work the best for me (until my calcium gets too high) :-\
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A transplant coordinator once said to me: "If you can't remember to take you phosphate binders, how do you expect me to believe you'll take your anti-rejection medications?"
And you know what? She's right.
8)