High Phosphorus

[goofynina]

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 

[angela515]

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!

[kitkatz]

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.

[AlasdairUK]

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.

[angela515]

I take Renegel.... big big pills ughhh, lol... 5 of them with each meal, geez its like a meal in itself! 

[jbeany]

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!!!!!   

[Zach]

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.

[Bajanne]

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.

[Rerun]

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?

                                                                     

[Zach]

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.

[angela515]

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.

[kitkatz]

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.

[goofynina]

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?

[BigSky]

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.

[Rerun]

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

[angieskidney]

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.

[sandman]

You need to AVOID all of those?  So what can you eat?  Anything?

[angieskidney]

You need to AVOID all of those?  So what can you eat?  Anything?

That is what binders are for

[Zach]

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!

[kitkatz]

If I eat again, shoot me!

[renal30yrs]

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.

[mmmmdeedee]

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

[BigSky]

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.

[Duane]

Good referral websites.

My phosphorus: 6.1 way to high but down from 6.4 praying for a better reading on my May labs.

[goofynina]

Good referral websites.

My phosphorus: 6.1 way to high but down from 6.4 praying for a better reading on my May labs.

OK Duane, we want to see that Phosphorus come down a little lower next time *or else*