Help with Phosphorus

[LostWife]

So here's the situation:   Husband's phosphorus and PTH levels have been really high.  He was taking Renagel for 2 years and it suddenly stopped working.  Now he takes Phoslo and eats Fosrenal with applesauce after meals.

We've REALLY been working hard on this problem - I mean, we're focused on it and we were so hopeful that it was resolved.  He's quit all Gatorade, which we thought was probably the cause.  Everything else he eats is on the low phosphorus list, I've really double and triple checked.  We thought it was better -- he's stopped itching like a meth addict.  We took that as a great sign, as did his doctors.

Labs just came in:  Phosphorus is 8, and PTH is 1100.  Now they're saying potassium is also high! We are both so frustrated!  Any ideas?  Does it sometimes take a bit longer to show up in bloodwork?

I just don't get it.  Why aren't these blockers working?

[Cordelia]

I know about Renagel, because I'm on it, but I'm not familiar with the other medications.

Does your husband drink a lot of milk and eat a lot of cheese? I cut these foods out and mine went down a lot as I was struggling with high phosper levels too. Once I cut those out, my levels went to almost normal.

[greg10]

..
I just don't get it.  Why aren't these blockers working?

Don't really know, but have you try slow niacin?  Have you thought about longer dialysis such as nocturnal or home, if you are on HD?

Niacin and Niacinamide for Hyperphosphatemia in Patients Undergoing Dialysis

phosphorus levels and parathyroid hor- mone levels fell in the NHHD group

[LostWife]

He's cut out all dairy - he never liked milk and quit cheese, dips, and creamer in coffee.  Cut the gatorade which we thought would solve the dang issue....he doesn't drink dark soda (he does drink ginger ale but they told us that was fine).  I literally have scoured the high phosphorus food list and can't find a thing on it he eats regularly.

He does PD at home.

I can't get to the article below b/c it wants a login - what is slow niacin?  A time release pill?

[greg10]

..
I can't get to the article below b/c it wants a login - what is slow niacin?  A time release pill?

Niacin is vitamin B3, slow niacin is just a slow release formulation to prevent a "flushing" effect with large niacin doses.
"Recent human clinical trials studies have shown that niacinamide and niacin inhibit intestinal transport of phosphorus and achieve clinically significant reductions in serum phosphate in patients undergoing dialysis."

It is available over the counter, such as:
http://www.amazon.com/Slo-Niacin-Polygel-Controlled-Release-Niacin-Tablets/dp/B000052YTD

[carson]

Greg10, that's really good info to know. I happen to have the opposite problem where I can' t keep my phosphorous high enough. Maybe i"m eating too much niacin?
Good luck with this LostWife. I know how much a balancing act our bloodwork can be!

[KICKSTART]

Usually where you have a high PTH you also have a high phosphorous . I have just had this same problem. It sound like it may be time for a Parathyroidectomy, which tends to lower the PTH and in turn the Phos as well. As for high potassium , bananas , tomatoes , chocolate, things like this will raise it.

[greg10]

@Carson, it's been a while that I have seen you on the forum, hope everything is good.   It is expected that patients on nocturnal HD will have low phosphorus levels, one of the benefits, which just means you can eat a wider selection of foods without to much restriction. 

@Lostwife, there are many more foods that you may not be aware that has loads of phosphorus, such as pancakes and biscuits.  The reason these baked foods are nigh in phosphorus is because of the phosphorus rich baking powder that is used.  Some baking powder phosphorus levels are in the thousands and tens of thousands.

http://www.nal.usda.gov/fnic/foodcomp/search/

[thegrammalady]

i struggled with high pth long before my kidneys failed and had a parathyroidectomy, but they only took one of them. it took a couple of years of sensipar before it finally dropped to normal levels. i'm also now on nocturnal which has made a big big difference. i no longer take any phos binders. at one time i was taking 4 renegel every time i put anything in my mouth. and there in, i think lies the problem with any phos binder. the doctor tells you to take them with meals. but they really need to be taken any time you eat. hungry between lunch and dinner. don't forget your binders. pie 3 hours after dinner...more binders. diagnosis is nothing more than an educated game of russian roulette. it may take some time and juggling of meds but you should get it figured out.

[LostWife]

Thanks for the niacin suggestion - we texted his doctor about that!!  Hope she'll ok it.   We have looked at the baking powder issue a while back - he's not really a carb monster...

He is looking to start sensipar again shortly.  He took it once and said it gave him crazy cramping in his stomach.  He said it was horribly painful.  I read on here that people said to take it with a big huge meal so we're going to try a lower dose with a big meal.

We've been working on the phosphorus and I mean we are both on top of it and making sure he's taking the binders.  They just aren't working, it is so disappointing.  So odd that the renagel was working great and then stopped.

What is the recovery like for a parathyroidectomy?  He missed about 6-8 weeks of work recently and we really can't have him miss much more anytime soon if we can help it.

[murf]

When I was hiving trouble controlling my phosphate, I nade up a food diary for one week for the nutritionist.. I was quite amazed how the little things added uo.

[RightSide]

It occurs to me that one way to eliminate diet as the culprit for high phosphorus, would simply be to switch to a vegan diet without dairy, for a month or two.

Even though veggies like broccoli contain significant phosphate, only about one-fourth of that phosphate is absorbed by the body.  Because broccoli also contains phytate, which binds to the phosphate.  I really don't see how a vegan diet without dairy can lead to high phosphate.  Even if you eat baked goods in moderation.

As for the high PTH, the parathyroids may no longer be responding to inputs like medication and blood calcium levels.  That happens sometimes--tertiary hyperparathyroidism.  In that case, a partial hyperparathyroidectomy can help.

[Lillupie]

Another thing is to avoid anything that is pre packaged.
 Everthing, I mean everything has to be made from scratch.

good luck,
Lisa
I know the diet is the worse part of this dialysis B.S.

[RichardMEL]

Since the PTH is also high the issue is more than just the Phosphates. The PTH being high suggests that the Phosphates are also being leached from the bones, which eventually will cause secondaryhyperparathyroidism and/or bone disease/brittle bones etc. Nasty. It's good that he's going to go back on sensipar as it hopefully will help control the PTH more and that should also help to bring down that Phosphate level somewhat. it's all a delicate balancing act.

One thing - you said hubby was taking the binders "after meals" - how long after? Ideally renagel and any of the other binders need to be taken during the meal to bind with the phosphates as they go down to prevent them being absorbed. Anything more than 30 mins afterwards and you might as well not bother.

Also another tip I learned is toNOT take sensipar at the same time as stuff like calcitricol(if he's on it) or even take it 30 mins after the meal..

good luck!

[Hazmat35]

I know that my PTH went through the roof when they changed my meds from ZEMPLAR to HECTOROL.  The dosages were not the same. 

It took 2.5 times the HECTOROL to equal what I was getting with the ZEMPLAR.  Finally, it started going down, and now my PTH it is back to normal.   Check the meds, and see if they changed anything recently. 

They never told me they changed the meds, I noticed it when I got my monthly blood work back and started asking questions. 

[texasstyle]

Are the binders being taken along with snacks as well? My husband takes his binders only with meals but it's under a different name. (Phosolo?) Sometimes small things are overlooked but can make a big difference when we notice them. I'm not even sure if you take them with snacks hmm... I don't why that came to mind. Does anyone know?

[Meinuk]

Beware of Hidden Phosphorus as well:
From:
http://www.case.edu/med/ccrhd/phosfoods/pdfs/Hidden%20Phosphorus%20in%20the%20Diet.pdf

Hidden Phosphorus in the Diet
Limit high phosphorus foods such as dairy, whole grains, dry beans, nuts and colas

 Most people are not aware of the sources of phosphorus additives in foods

 Convenience foods, ready to eat and processed foods frequently contain phosphorus additives

 Read ingredient labels to find phosphorus  additives such as:
Dicalcium phosphate
Disodium phosphate
Monocalcium phosphate
Monosodium phosphate
Potassium tripolyphosphate
Pyrophosphate
Sodium acid pyrophosphate
Sodium aluminum phosphate
Sodium hexametaphosphate
Sodium phosphate
Sodium triphosphate
Tetrasodium pyrophosphate
Tricalcium phosphate
Trisodium triphosphate

and

Food Products Commonly Containing Phosphorus Additives

http://www.case.edu/med/ccrhd/phosfoods/pdfs/Food%20Sources%20Containing%20Hidden%20Phosphorus.pdf
Read ingredient labels to find phosphorus additives.
Phosphorus additives are commonly added to ready to eat foods such as:

 Meats/ Poultry/ Seafood
Processed items such as chicken nuggets, hot
dogs, deli meats, crab
Items enhanced with a broth solution such as quick
frozen chicken, turkey
 Bakery products
Biscuits, snack cakes
 Cheeses
Processed and spreadable cheeses
 Instant products
Puddings, sauces
 Beverages
Colas, flavored waters, fruit drinks

Can you find the phosphorus additives in the ingredients? (I found two)

Ingredients: Enriched macaroni product (wheat flour, niacin, ferrous
sulfate [iron], thiamin mononitrate [vitamin B1], riboflavin [vitamin
B2], folic acid), cheese sauce mix (whey, milkfat, milk protein
concentrate, salt, calcium carbonate, sodium tripolyphosphate,
contains less than 2% of citric acid, sodium phosphate, lactic acid,
milk, yellow 5, yellow 6, enzymes, cheese culture)

[RichardMEL]

TS great point there. Really binders should be taken with ANY food not just main means though I admit I used a bit of common sense in that if I was having a snack I knew had phos then I'd have a binder, but if I was having something without, or something with low phos anyway then I tended to not bother. The rule basically is if you're going to eat something with phos you need a binder. Very good point.

[Meinuk]

There is also a VERY LARGE (zip file) toolkit with Fast Food high phosphorus (and healthy options)

Here:  Also broken down here (on the page, ther are links to all of these restaurant's info sheets along with healthy options):
http://phosfoods.wiki.zoho.com/HomePage.html

Arby's
Boston Market
Brueger's Bagels
Burger King
Dairy Queen
Domino's
Dunkin' Donuts
KFC
McDonald's
Panera Bread
Papa John's
Pizza Hut
Subway
Taco Bell
Wendy's

[LostWife]

 

You guys are really amazing.  So knowledgeable!

We really have cut back on everything on these lists.  He does take the phoslo right before meals and the other blocker after.  I think he probably needs to take it beforehand but he has to mix it with applesauce and he hates to eat something sweet before a meal. 

He just went to see a rheumotologist on Monday, b/c he has some unexplained pain in his legs, and that Dr. said it just is so odd that the Renagel suddenly stopped working for him.  I swear his body is a mystery to every doc we meet. 

I will say the phosphorus level was as high as 14, so we are making some progress, but I'd love to see it below a 6!

Thanks again.  We're still waiting on an answer from his doc about the niacin.

[KICKSTART]

Again regardless of diet , i would say get someone to look over his PTH. He is showing all the classic symptoms , high PTH , high Phos and now pain in legs (bone pain). No amount of watching diet will help if this needs addressing !

[Hazmat35]

I take [2] PhosLo tabs w/ every meal and or snack throughout the day.  Sometimes I take 6 pills a day, sometimes 8 or more.  Over the holidays was rough, but I took two each meal/snack, and have never had a problem w/ my phosphorus. 

And, I do not watch the Renal Diet, RELIGIOUSLY!!!!  I eat many things that I shouldn't!  I LOVE BROCCOLI!!!!!

[Lillupie]

another thing is if you HAVE to use milk, only use Non-dair creamer. There were so many foods that I like that call for even a tablespoon of milk and instead of not eating it all together, i just have replaced the milk with non-dairy creamer. It actually tastes the same and I cant tell the difference.

Always, Always take the binders before taking a bite. It he is starving like me, take only a bite of food then take the binders and then finish your food.
Avoid eating out, and pre-packaged food. If you must eat out (which I do a lot), take the chesse off it all, and take extra binders, atleast one. No pizza. My nurse did tell me if i get pizza, to order it with no chesse and extra sauce (sorry hemo people, but PD people here can have the sauce)

Lisa
Hope this helps

[texasstyle]

Rightside, I am often impressed with youir knowledge about many things not under any circumstances to block out the other knowledgeable people here. Do you Broccili? I no likey lol. Well...except if it's raw and with dip. Phoso.. hm. tmoday my husband ate LOTS od cheese. I think for every meal PLUS a snack or sandwhich with it. he eats worse tha the rest of us I think. Chocolate, choclate, hocolate... enought here to make a factory. "I can have what ever I want in moderation". I get it. You don't have to say anything ok? But I DO learn fro myou and all here. Thanks!

[RichardMEL]

Another good point to take extra binders if you know you'll have a "treat" out that is heavy in PO4.. I did have the odd pizza and definitely took extra renagel just in case.