My Phosphorous is now over normal

[Athena]

My Neph called me today to tell me that my Phosphate levels have come in a bit above normal. Normal max level is up to 1.5. I was at 1.6.

I do eat a good amount of cheese each day as well as about 50g of dark chocolate. In addition, have been nibbling on nuts as well. So if I just cut down on these 3 food items could I see myself going back to the normal range?

Neph wanted to prescribe calcium binders but I suggested I adjust my diet first to see whether that might work. I was once 1.53 in early 2015 but that was when I was eating a ton of dairy and I have been normal ever since.

Could this one just be a fluke?

Which phosphate binder is the best one to take anyway? I've heard that these meds are horrific by way of side effects.

[Vt Big Rig]

I have not had a bad experience.

I started with calcium acetate but that made my calcium creep up so I switched to aurixiya (sp?). That has managed the labs well.

Only problem .... it also helps with iron and my stool is jet black. Freaked me out the first time I saw that!!!

[iolaire]

I also have not had too bad an experience.  I use Renvela.  I am more constipated these days but not too bad.  I do urinate so I am drink a lot still so I don't know if that makes the binder effect softer on the body better.

That being said it would be good to experiment on your diet well you have more time to mess with things.  It will be harder to say no to binders so you can mess with your diet when its even more elevated.  So I would suggest you first focus on the food and move to the binders once you have tried to control it via diet - assuming you are strong enough to do that. 

Personally I moved to the binders and didn't really focus on diet changes.  I expect that will make the kidney friendly diet change a bit harder once I loose all my remaining kidney function which makes life easier now...

[Charlie B53]

I copied this chart from webMD   As you can see there are two measuring systems used.  This explains my immediate confusion with your posted number.  My labs use the mg/dL system so I am used to seeing the larger number.   Same thing, only different.

 Phosphate in blood 1    Milligrams per deciliter (mg/dL)    Millimoles per liter (mmol/L)

Adults:                                        2.7-4.5                                    0.87-1.45

Children:                                      4.5-5.5                                    1.45-1.78

Newborns:                                4.5-9.0                                    1.45-2.91

Your results are slightly above the general maximum.   This wouldn't necessarily worry me as I have also gone 'high' a few times over the years.  Most often as a result of eating a high phosphorus meal in the day or two prior to the blood drawn for the test.   I do have a bunch of bottles of the Renvula binder as every time I had one of those 'higher' labs my Neph would prescribe binders and pharmacy would send them right out.    I rarely use them, unless I KNOW a particular meal is high in phosphorus.

Watching your diet a bit and I would expect your next set of labs to come back much like your 'normal' labs.  But know you will eventually need to pay much more attention to phos and we both will become reliant on taking binders to keep our phos within range.   Just not yet today, Thankfully.

I am fortunate in that I still have a little remaining kidney function.  I believe this is helping my phos control, but I cannot count on that always being so.   I have a copy of the AAKP Nutrition Counter, the booklet from the American Association of Kidney Patients that lists many pages of foods, and the Na, K, Phos, Protein, Fat, Sat. Fat, Carbs, and Calories for each of a great number of foods.    A very informative chart that many should consider looking at and have available to consider if, or how many, binders to take with meals.    I am learning.  This chart is available for download somewhere on the aakp.org site.   I posted that link in another thread somewhere that was also discussing this issue.   Sorry, I  don't recall which thread.

[kickingandscreaming]

From what I understand (and I could be wrong), just the ability to urinate doesn't remotely guarantee that you are clearing solutes (inc. phosphorus).  I've been told that residual renal function (RRF aka peeing) is mainly useful for regulating fluids.  I still pee about 1800ml/day (that's on the high end of normal range) and that doesn't remotely clear the toxins or regulate electrolytes-- enough.

I take Renvela, but this month my phosph. hit 5.0 so I'm upping my dose which kills me because they are so expensive and last year threw me in Medicare's donut hole.

[MooseMom]

Athena, I think there is a very good chance that you can get your phos back into the normal range if you cut out cheese altogether.  I remember I would always decide whether or not a particular food was "phosphorus worthy" (reminiscent of a Friends episode when Phoebe had to decide whether or not a potential boyfriend was "sponge worthy"), and I always decided that no, no food was phos worthy.  Not in the least.  I personally couldn't be bothered with worrying about whether just this one little bit of this one little phos-food would be a problem, so I didn't have a problem foregoing cheese, nuts and chocolate altogether.  Anyway, give it a try before you begin binders; I think you have the right idea.

[MooseMom]

From what I understand (and I could be wrong), just the ability to urinate doesn't remotely guarantee that you are clearing solutes (inc. phosphorus).  I've been told that residual renal function (RRF aka peeing) is mainly useful for regulating fluids.  I still pee about 1800ml/day (that's on the high end of normal range) and that doesn't remotely clear the toxins or regulate electrolytes-- enough.

Absolutely correct.  I peed plenty but still had trouble with potassium and phosphorus clearance and had to use meds to balance those levels.

[iolaire]

From what I understand (and I could be wrong), just the ability to urinate doesn't remotely guarantee that you are clearing solutes (inc. phosphorus). 

My point with urinating is I wonder if helps my digestive system and possibly helps prevent side effects of binders.  I consistently assume that some of the reason why I deal very well with dialysis is residual kidney function and urination as well as my overall good health.

[Charlie B53]

I was under the impression that the 1 Jan 2016 Medicare change placed a requirement on the treating clinic to provide all renal related medications.   Yet I still see a number of people are still paying for their binders.   I looked up CMS and using their system submitted the question if binders should be included and provided by the Dialysis Clinic as they are a necessary medication in treatment of renal disease.

Hopefully I will get an answer spelled out which I will repost here.

Keep your fingers crossed!

[kickingandscreaming]

I was under the impression that the 1 Jan 2016 Medicare change placed a requirement on the treating clinic to provide all renal related medications.

That would be great!  But I'm not holding my breath on that one.

[sahern]

If you are taking Renvela you can go to their website and get a coupon and pay $5.00 for each refill for a year.  There are a couple exceptions so look at their web site. It saved me about $150.00 the first time I used it.

[Athena]

Thanks everyone for your very helpful replies. Has anyone heard of a type of chewing gum called renagum (?) or similar. I've been meaning to look that one up as a kind of preventative med. Apparently, it has a more natural type of ingredient, chitosan or something.

[kickingandscreaming]

Apparently, it has a more natural type of ingredient, chitosan or something.

Unfortunately, chitosan is derived from shellfish which are lethal to me.  So be careful with it if you have a shellfish allergy.

[kickingandscreaming]

If you are taking Renvela you can go to their website and get a coupon and pay $5.00 for each refill for a year.

Unfortunately I just checked and if you have Medicare you're not eligible.

Patients filling prescriptions that are covered by or submitted for reimbursement under Medicaid, Medicare, VA, DOD, TRICARE, or similar federal or state programs including any state medical pharmaceutical assistance program are not eligible for this offer.

I have a Medicare Advantage plan.  My 3 month copay is "only" $147 but the expense of the drug (nearly $3,000 for 3 month supply @6/day)  throws me in Medicare's donut hole where I have to pay out of pocket for all my medications during the "donut" time.  That will add up.  So I'm really skimping on taking them and my phosph. level has gone up.

[Athena]

I'm sorry to hear this K&S. How high is your phosphorous level now without these binders? Do binders do a good job in reducing levels as a general rule?

I'm thinking of trying them regardless of whether I go back to normal levels without them. I think I read a study somewhere that taking binders early can have a certain preventative effect on CKD. Which kind of makes sense when you look at it from the point of view of easing the kidney of the some of the burden of excreting minerals.

[kickingandscreaming]

My levels were in the normal range last month, and this month they are at 5.0.  Not astronomical, but moving in the wrong direction.  Binders do help maintain a normal phosph. level, but you need to take enough of them.  And I've been cutting corners because of the cost issue.

I don't think I've ever heard binders spoken of as helping with the underlying CKD.  They are a symptomatic fix. CKD is officially called Chronic Kidney Disease and Bone Mineral Disorder (BMD).  That's where phosphorous comes in--with the BMD part.  Too high a phosph. level eventually eats away at your bones and dispaces calcium in all the wrong places (arteries).  Before dialysis I was able to control my phosph level with a single Tum per day.  Now my calcium is too high to rely on a calcium based binder.

[Charlie B53]

No response from CMS yet.  I better check my spam filter, it may have tossed it without me knowing.

My PD Nurse did call yesterday and she explained that although the Medicare change did place the requirement on our Clinic to provide renal meds, mmedicare also published a list of those meds.  I have not found a copy yet.   Renvula and cinicalcet/sensipar both are NOT on that list.  Figures, I take both of those.

About all we can do is Hope that Medicare makes these additions to the med list.   I don't know if they have a set schedule of reviews.

[Athena]

Well I failed the new phosphorous challenge  I ate a mozzarella cheese and salad Subway roll today and had 6 cubes of dark chocolate afterwards. But I hadn't eaten cheese & chocolate for 2 days prior to this.

Does anyone else imagine their kidneys as organs with a personality? I somehow am starting to imagine they're looking at me with a very stern troubled expression on their 2 faces.

[kickingandscreaming]

I don't feel that my kidneys are judging me.  But do give signals of my transgressions.  But only with blood work.  Without the testing, you wouldn't know (until too late) that your bones are disintegrating and that your arteries and blood vessels are calcifying. Cheese and chocolate are definitely 2 things to stay away from unless you can eat just one small square (1") of 85% cacoa dark, high phenolic chocolate/day for medicinal purposes.  Not is you're a chocoholic.  Then it is best to go cold turkey.

[Athena]

Without the testing, you wouldn't know (until too late) that your bones are disintegrating and that your arteries and blood vessels are calcifying. Cheese and chocolate are definitely 2 things to stay away from unless you can eat just one small square (1") of 85% cacoa dark, high phenolic chocolate/day for medicinal purposes.  Not is you're a chocoholic.  Then it is best to go cold turkey.

Well that's sure a way to put it into perspective for me, K&S! Thanks. The chocolate has been put back in the pantry as of today.

I think I should not delay in getting myself some binders. Here, Nephs can't prescribe it unless the patient has symptoms of elevated phos. I think I qualify for a script now. I shouldn't have argued with the Neph when he was ready to write one. If I start taking binders early, will they allow me to eat a fairly normal diet - which for me includes lowered salt cheese, dark chocolate, nuts & some yogurt.

[kickingandscreaming]

If I start taking binders early, will they allow me to eat a fairly normal diet - which for me includes lowered salt cheese, dark chocolate, nuts & some yogurt.

If you have unlimited funds, you could probably "cover" most of your deviations from the recommended renal diet.  Except for Tums (which can have serious consequences when too many are used) most of the decent non-calcium binders are verrrrrrrry expensive, and they don't bind much phosphorous.  If I recall, each Renvela pill binds up only 77mg of phosph.  That's not much.   A small piece of cheese (1oz) contains the following mg. of phosph.:  Brie=52.6;  Cheddar=143; cottage=44.5; feta=94.4; cream cheese= 30;mozzarela=130.   etc.

It adds up.  I do eat the occasional feta (goat or sheep milk) and I remove the abundant salt by soaking it for several days in water.  I actually prefer it that way as I can actually taste the cheese, and not just the salt.

Nuts are another issue.  There is some question about how much of their phosph is bioaccessible due to the presence of pjytates.  That being said, i'm very careful with them.  I used to eat a lot of nuts.  Now I eat about 10 macadamias/day, spread out.  They're the lowest in phosph.

You should bookmark sites like http://nutritiondata.self.com  and https://ndb.nal.usda.gov/ndb/search  where you can learn about what different foods contain.

[Charlie B53]

Bookmarked both.  I really like the search feature found in the first link.   Not knowing what foods contain this is neat to simple check off what we want as well as what we don't want in an item, and it gives a whole list of foodstuffs that fit those parameters.

[Fabkiwi06]

I've had decent luck in using Tums as a binder. I wouldn't recommend it as a long term solution - definitely discuss it with your neph - but when I'm between prescriptions it's better than nothing.

I love cheese. I love all dairy. That's been a struggle for me over the past few months. I've gotten to a good place where I let myself have two days a week where I can ease up on those restrictions and eat cheese with my eggs or have some chocolate. Moderation in all things.

[Athena]

Athena, I think there is a very good chance that you can get your phos back into the normal range if you cut out cheese altogether.  I remember I would always decide whether or not a particular food was "phosphorus worthy" (reminiscent of a Friends episode when Phoebe had to decide whether or not a potential boyfriend was "sponge worthy"), and I always decided that no, no food was phos worthy.  Not in the least.  I personally couldn't be bothered with worrying about whether just this one little bit of this one little phos-food would be a problem, so I didn't have a problem foregoing cheese, nuts and chocolate altogether.  Anyway, give it a try before you begin binders; I think you have the right idea.

I've just had a good laugh about the "sponge worthy" analogy - I think Elaine in Seinfeld may have been the first comic character to use that line, btw!

My only problem with cutting out cheese is that I have pretty much given up on eating animal protein at dinner time, so guess what? Cheese has become like a staple food item to replace the meat. If no cheese then I'm going to be only eating breads or pasta with salads and vegetables. I eat the lower sodium cheeses like mozzarella and swiss cheese only.

Nuts are great for diabetics due to their low carb nutritious content and you can nibble on them endlessly without getting into trouble. But, again, it's a kidney no-go zone.

[Athena]

If I start taking binders early, will they allow me to eat a fairly normal diet - which for me includes lowered salt cheese, dark chocolate, nuts & some yogurt.

If you have unlimited funds, you could probably "cover" most of your deviations from the recommended renal diet.  Except for Tums (which can have serious consequences when too many are used) most of the decent non-calcium binders are verrrrrrrry expensive, and they don't bind much phosphorous.  If I recall, each Renvela pill binds up only 77mg of phosph.  That's not much.   A small piece of cheese (1oz) contains the following mg. of phosph.:  Brie=52.6;  Cheddar=143; cottage=44.5; feta=94.4; cream cheese= 30;mozzarela=130.   etc.

It adds up.  I do eat the occasional feta (goat or sheep milk) and I remove the abundant salt by soaking it for several days in water.  I actually prefer it that way as I can actually taste the cheese, and not just the salt.

Nuts are another issue.  There is some question about how much of their phosph is bioaccessible due to the presence of pjytates.  That being said, i'm very careful with them.  I used to eat a lot of nuts.  Now I eat about 10 macadamias/day, spread out.  They're the lowest in phosph.

You should bookmark sites like http://nutritiondata.self.com  and https://ndb.nal.usda.gov/ndb/search  where you can learn about what different foods contain.

Thanks K&S for all the wonderful tips you have given in this post. I have bookmarked the 2 sites you have provided. Thanks!