PHOSPHORUS!!! HELP!!!

[jshabanian]

I am on hemo dialysis and recently my phosphorus level has been really high, like 10.7. This has been going on for about 1.5 months now.  I have switched binders several times and upped the doses.  I am now taking 2 Phoslo and 3 Renvela with each meal. I am aware of which foods contain phos. and am avoiding or limiting those foods.  I feel so frustrated because I know I am doing what I need to do and nothing seems to be working.  I was taking a generic phoslo type product and just added Renvela last week.  How long does it take for the levels to come down?

Has anyone of you struggled with Phos?

[Cordelia]

I completely undertand your frustration!!!!         
Phos is my weakness and I have to watch. Unfortunately, I don't know what to tell/advise you since I'm on Renagel. I've never been on any of the other binders you are on.

I hope it all gets sorted out. Hang in there though. It took me months-a good six months it seemed before my levels really started coming down. I hated having the docs on my case about it montly. It was a thorn in my side.       

[ChrisEtc]

I've had trouble with that the last few months.  It seems a lot of the drinks I buy have phosphorous and this surprised me.  Things like orange juice, lemonade, etc.  It's really not just what you eat!

[Cordelia]

You're right. From my understanding, there's a certain amount of phosphorus in pretty much everything         

[Whamo]

Lemonade?  It's on my list for good drinks for dialysis patients.

[deniferfer]

My phosphorus is always high!! Its the one thing that is the hardest to keep in check. But I take tums(3 or 4 depending on what I eat) and it works for me along watching what I eat and drink. I hate when I think I'm safe and eat something to find out later that it had phosphorus in it.

[sparklelady]

From my understanding, canned lemonade and iced tea have quite a bit of phosphorus.

[Cordelia]

Yup, so does Coca Cola

[mcclane]

From personal experience, frequent and long dialysis times help in reducing phosphate levels.  I was on home nocturnal hemo, which req'd dialysis 6 days a week/8 hour runs, and my phosphate levels were within range.

The closer I got to my surgery date, I slacked off my dialysis regimen and just did 3 hour runs but high flow rate, and my phosphate levels went through the roof.

As cordelia mentioned, all foods contain phosphorous, it is just a matter of how much. 

[MomoMcSleepy]

 

I've had trouble with that the last few months.  It seems a lot of the drinks I buy have phosphorous and this surprised me.  Things like orange juice, lemonade, etc.  It's really not just what you eat!

Probably depends on the type of drink, overly-processed drinks, or that you make forma powder, probably are worse.  I like to make things from scratch, so i know what's in it. 

Also, o don,t know what your function level is, Chris, but I don't even drink orange juice except for like, a shot glass full, because of the potassium.

[Zach]

Some more reading on IHD about phosphorus (PO₄):

Food labels hide phosphorus content
http://ihatedialysis.com/forum/index.php?topic=12406.msg213156#msg213156

Hidden Phosphorus -- In Jello Mix!
http://ihatedialysis.com/forum/index.php?topic=23235.msg378163#msg378163

Teaching Dialysis Patients About Phosphorus
http://ihatedialysis.com/forum/index.php?topic=18865.msg322661#msg322661

And these oldies but goodies:
High Phosphorus
http://ihatedialysis.com/forum/index.php?topic=1742.msg22626#msg22626

Effect of Phosphorus Binders
http://ihatedialysis.com/forum/index.php?topic=11307.msg192723#msg192723

[sbmyluv]

Speak with the Dietician at your center and tell him/her the things you eat or drink on a daily basis.  They will be able to tell you what is driving your levels up.  Almost everything includeds some phosphorus and when consumed in high doses it brings your levels up.  ESPECIALLY PACKAGED FOODS!!!!

[Arcticat2000]

Try Fosrenol
Worked for me!

[bleija]

tea is fine, my clinic told me it was low, and my phos levels are always high so i dnt know about the renvela which is what i take... but mine is only 5.7 to 5.9 they just tell me to be stricter with my renvelas... yeah so stqy away from dairys and beans, and anything that has taste... cordboard is ok... good fiber too i would think

[Restorer]

Freshly brewed tea is low in phosphorus. "Tea drinks" from a soda fountain or in a can or soda bottle - like Lipton Brisk or Nestea - have a lot of added phosphorus. There's a rule of thumb about tea in plastic bottles being bad, but tea in glass bottles is fine. Tea from a soda fountain is not good, but tea from a separate "freshly brewed" container is okay.

Any tea you make yourself is okay too.

[SteveK87]

Try Fosrenol
Worked for me!

 

This is the only thing that works for my wife.

[bleija]

okay because i mostly drink tea, soda makes me bloated and im not big on water unless it is ice cold, i was tols tea good

[Hazmat35]

My Phos went up around Easter time, up to 6.0 but I think it was the chocolate i ate and the oranges.  Fresh Oranges are my weekness and when they are falling off the trees, here in Florida, it is hard for me not to eat them. 

I would keep a notepad with you and make a list for a week or so of everything you eat/drink and when and how many binders you take.  Sometimes we forget to take binders, or even forget that you ate or drank something. 

[smcd23]

Try Fosrenol
Worked for me!

 

This is the only thing that works for my wife.

I third the Fosrenol! Only thing that works for my SO (when he remembers to take it) 
The pills are large and chalky and you eat them like a Tums. My SO's only complaint is that they are chalky and have no taste, so his dietician told him to crush them and eat them in some applesauce, which seems to have been doing the trick.
No lie, his phosphorus is high (like double digits) and when he is faithful about his Fosrenol he can drop it into the good range in one months time.
And depending on your prescription drug coverage, the company offers a co-pay assistance card. 

[pdpatty]

http://www.nal.usda.gov/fnic/foodcomp/Data/SR17/wtrank/sr17a305.pdf

Check this out By the way,the amount of phosphorus in a can of cola may surprise you.

[Lovebelle]

I had alot of issues with my phosphorus as well. Then after months of struggling they noticed my PTH and calcium levels were varying (not significantly, but enough to make them wonder). So they decided to put me on Sensipar. I have to say once I started sensipar, I have not had any issues with my phosphorus levels! My phosphorus levels are now usually between 3.5-4 when before they were upwards of 7+. I have not even taken my fosrenol in months now because the sensipar seems to be doing the trick.

Im not sure what your other lab values are, but its something you may be able to talk to your nutritionist about.

[kitkatz]

Drop all wheat products from your diet and no sodas. Check everything you eat for wheat.  Anything multigrain drop it now.

[RightSide]

You're right. From my understanding, there's a certain amount of phosphorus in pretty much everything         

True--but different foods vary in bioavailability--how much phosphorus actually gets absorbed into the bloodstream.

While vegetables like broccoli have significant quantities of phosphorus, they also contain phytate, a chemical which binds to phosphorus and prevents about 75% of it from being absorbed by the body.

Bioavailability is highest with liquids containing phosphorus, such as milk and cola drinks.