Yikes! Phosphorus 8.9

[Melissa]

I actually thought I was doing great last month, and was extra careful last week because Monday was bloodwork day.
My phosphorus came back 8.9!  I had some mild itchiness, but nothing that would make me think it would ever be this high.  I keep a food log and found some things I could cut out but feel a little discouraged.  My dietician just gives me lists of foods to avoid and I do, so I know the foods. 
I am taking 3 binders with meals, 2 with snacks.
My daily limit is 600mg of phosphorus which is very difficult but I manage...or so I thought.
Does anyone else have issues with phosphorus?  I also have a high PTH...are they related?
All other numbers are normal.

I am concerned about my poor bones!

[CybeR]

I always have, this was my first month that I was within goal. I told the dietitian that I don't remember doing anything different lol.

Now I am wondering what food I didn't eat last month.

[Lillupie]

Oh Melissa,
 I am so sorry to hear your phos came back so high.!!! I know how you feel. I would do the best i could when i was on hemo to maintain my levels. (being on hemo was the only time that my phos was every out of range). My dietation (sp) would come around to me, and afterwards I would have tears swell up in my eyes because i just didnt know how they got up there. She wanted me to take phosrenal (sp?) IT s the nastiest drug ever! It tastes like you are eating chalk. Its so hard.

Yes the PTH and phos kind of do go hand in hand.
P.s. I do know of a guy whose phos has been as high as 14! Hang in there it will get lower

[peleroja]

Phosphorus seems to be one of the more tricky things we deal with.  For over 5 years I took 2 Phoslo with every meal.  Then 5 months ago my phosphorus was 2.2, so they took me off my binders.  It slowly began to rise again: 2.8, 3.4, 4.0, 4.5, so I figured this month it would be high enough that they would put me back on Phoslo.  Nope, it went back down to 3.5.  The funny thing is that I've always eaten cheese, ice cream, milk, etc. (I'm on PD).  I don't think I'll ever figure phosphorus out!

[Bajanne]

My neph told me my PTH was very high.  My phosphorus high and my calcium low.  I started taking my Tums conscientiously and everything became better.  I am glad for this thread because I started slacking again and I needed this wake up call.

[Zach]

Here are some additional IHD threads that discuss phosphorus:

http://ihatedialysis.com/forum/index.php?topic=12406.msg213126#msg213126

http://ihatedialysis.com/forum/index.php?topic=1742.msg67152#msg67152

http://ihatedialysis.com/forum/index.php?topic=8412.msg177207#msg177207

http://ihatedialysis.com/forum/index.php?topic=11469.msg195565#msg195565

Hope these help.

[thegrammalady]

my guess is you probably need to increase your binders. one of the keys go a good phos level is never put anything in your mouth without a binder. at one point i was up to 4. then when i started nocturnal it dropped so low i was taken off them all together now i'm taking 2 with meals and snacks. the thing to remember is if you have dinner, take binders. then 2 hours later, pie. the pie isn't part of dinner, you need more binders.

[pdpatty]

 http://www.nal.usda.gov/fnic/foodcomp/Data/SR15/wtrank/sr15a306.pdf PDF USDA Nutrient Database for Standard Reference, (mg) Content of Selected Foods per Common Measure, sorted alphabetically Potassium, K

Guess I got wrong one . Sorry about that. they really need to be used together.

USDA National Nutrient Database for Standard Reference, Release 17
) Content of Selected Phosphorus, P ( mg Foods per Common Measure, sorted alphabetically


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

EDITED: Fixed URL-kitkatz,Moderator

[aharris2]

.
My phosphorus came back 8.9! 
I am concerned about my poor bones!

Good for you Melissa, be concerned about your bones. I am surprised by how little emphasis there is on this, particularly when the loss of bone integrity and the resultant breaks can be so debilitating and so heavily impact quality of life. And it happens QUICKLY!

First, what binders are you using? They may need to be changed or increased. Next, phosphorus is insidious - it is hidden in so many things. You may have hit upon a hidden source of it. Look for it.

PTH, calcium, phosphorus - yes they are related - they are a metabolism (which I don't understand that well). But, here goes - you eat phosphorus, it binds with calcium, the available calcium in your blood drops, the parathyroids see that as a threat to your heart and dump PTH into the bloodstream which goes and rips some calcium out of your bones (Zach, please feel free to correct this...). Phosphorus is most immediately under our control (diet and meds), pth too, but not so easily (meds, parathyroidectomy).

Regarding Fosrenal, we have found it to be very effective and yes, "It's the nastiest drug ever! It tastes like you are eating chalk." My brother used to choke on it every time. We have found a way to get past that - "Chocobanana Fosrenal, "not good for "on the road" but excellent when we are at home:

http://ihatedialysis.com/forum/index.php?topic=9266.0 (2nd page, halfway down)
http://ihatedialysis.com/forum/index.php?topic=8629.0

Best of luck and protect those bones!

[Rerun]

It could have been a mistake in your labs.  Ask for a redraw.

[Melissa]

Thanks guys!
I had it redrawn - still 8.0 )-:
I increased my binders (Renagel and Phoslo), but my dr. thinks it is most likely related to  my out of control pth and could be partly due to my kidney being removed - things working differently now.  He will probably put me back on Sensipar - hate that drug! 

I also had this issue at age 15 when my kidneys first failed, and ended up with renal rickets - painful and debilitating - so hopefully I can get this under control.

thanks for the previous links and all the info too!

[sico]

My phosphate and calcium were high last bloods, changed from cal-sups to renagel recently.
Hopefully this makes things a bit better.
I can just remember at my dialysis unit a poster on the wall had pastries and beer as high in phosphate.
Hopefully your figures look better soon Melissa.
 

[Restorer]

One thing about that chocobanana Fosrenol recipe - make sure you crush up the Fosrenol very well before you mix it in - powderize it. They say you need to chew Fosrenol very well or it will upset your stomach and not be as effective, so crushing it up very well is important in getting your worth out of it. You might even want to mix it into some kind of thin liquid: water, milk, or something else, before mixing in the chocolate and banana just so you don't get clumps of powder that don't break up later.

[aharris2]

Chocobanana Fosrenal - I use a mortar and pestle and crush the fosrenal into a very fine powder. I then take a thin slice of ripe banana (less than 1/4" thick) and mash it into the fosrenal powder until it is a homogenous cream - the banana tends to liquify. Then I add chocolate syrup "to taste". It is at this point that you will be able to tell if you have failed to crush up the fosrenal sufficiently. (The fosrenal can also be successfully crushed up with a spoon.)

[Lillupie]

Lol did you use the quote from my post of "its the nastiest drug ever, it tastes like chalk". Well it does. My nurse says that some people say it is the next best thing to sliced bread. I'd like to meet these people!
Lisa

.
My phosphorus came back 8.9! 
I am concerned about my poor bones!

Good for you Melissa, be concerned about your bones. I am surprised by how little emphasis there is on this, particularly when the loss of bone integrity and the resultant breaks can be so debilitating and so heavily impact quality of life. And it happens QUICKLY!

First, what binders are you using? They may need to be changed or increased. Next, phosphorus is insidious - it is hidden in so many things. You may have hit upon a hidden source of it. Look for it.

PTH, calcium, phosphorus - yes they are related - they are a metabolism (which I don't understand that well). But, here goes - you eat phosphorus, it binds with calcium, the available calcium in your blood drops, the parathyroids see that as a threat to your heart and dump PTH into the bloodstream which goes and rips some calcium out of your bones (Zach, please feel free to correct this...). Phosphorus is most immediately under our control (diet and meds), pth too, but not so easily (meds, parathyroidectomy).

Regarding Fosrenal, we have found it to be very effective and yes, "It's the nastiest drug ever! It tastes like you are eating chalk." My brother used to choke on it every time. We have found a way to get past that - "Chocobanana Fosrenal, "not good for "on the road" but excellent when we are at home:

http://ihatedialysis.com/forum/index.php?topic=9266.0 (2nd page, halfway down)
http://ihatedialysis.com/forum/index.php?topic=8629.0

Best of luck and protect those bones!