I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LostWife on February 02, 2011, 07:45:16 AM
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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?
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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.
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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 (http://www.medscape.com/viewarticle/583485)
phosphorus levels and parathyroid hor- mone levels fell in the NHHD group (http://cjasn.asnjournals.org/content/4/4/694.full.pdf)
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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?
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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
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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!
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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.
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@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. :clap; :clap;
@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/
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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?
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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)
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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.
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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
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:grouphug;
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.
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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 !
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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!!!!!
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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
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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!
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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.
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Thanks again, everyone.
Doc ok'd the slo-niacin, so we just have to order it. Last night he took the Fosrenal before his meal (as in the minute before) instead of after, so that was a good change, maybe.
He really eats a lot of rice & meat - we grill a lot at home. He doesn't have a sweet tooth hardly at all (no chocolate), he hates milk, and always has. He's given up cheese. He's given up dark colas and gatorade...We just realized he'd been snacking on cashews which are bad, so we cut those too.
I think something is just out of whack. We'll keep working on it but may have to have the PT removed. Anyone know the recovery for that?
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Im sorry this is the last time im going to say this ..everyone keeps going on about avoiding phos foodstuff and you keep saying hubby does. Ive tried to tell you he is showing classic symptoms of high PTH .
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Forgive my ignorance - his PTH is high, but I thought the Phosphorus and the PTH were tied closely together? That's why I was focused on that. His doc and nurse told us if Phos drops then so does PTH?
We're going to try sensipar (it really made him have bad abdominal cramping before) and we're thinking of getting the PT removed, but I need to know recovery time for that. He's already missed 6 weeks of work recently. We need his job for health insurance, unfortunately.
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PTH *is* closely linked with phos, but it is ALSO closely linked to calcium also. It's the so called PTH triangle, and it's so hard to keep everything in check because you manage one, and something else can easily go out of whack (eg: you take a calcium based binder for phos, it pushes up your Ca, and that in turn effects PTH, or you take something to lower the PTH which lowers Calcium too, but affects Phos...). It's quite visious. I must say though that for me I found that using renagel (as a non calcium PO4 binder) and sensipar to control PTH (which also lowers serum calcium) was a real winner. Every so often had to modify the dose of one or another, but in general it worked pretty well. Of course that's not to say it's a good idea for anyone else - everyone's situation is different, but I found that worked for me.
This link may provide some more information: http://www.kidney.org.uk/Medical-Info/Calcium-Phosphate/index.html#8
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Forgive my ignorance - his PTH is high, but I thought the Phosphorus and the PTH were tied closely together? That's why I was focused on that. His doc and nurse told us if Phos drops then so does PTH?
We're going to try sensipar (it really made him have bad abdominal cramping before) and we're thinking of getting the PT removed, but I need to know recovery time for that. He's already missed 6 weeks of work recently. We need his job for health insurance, unfortunately.
Sorry i wasnt having a go at you , like RM said all 3 are linked , but sometimes if PTH is high then no matter what you do , phos will not come down ! We dont use Sensipar over here we use Cinacalcet but i expect others will give you the same advice , take it after a large meal (t-time).
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It's just such a puzzle. I think he'll start the sensipar soon, and he has to get labs done again this Thursday, so I can put out an update when we have it.
The great thing here is that we're finally working on it together. And although he's frustrated (as am I) I feel more knowledgeable now than I ever have. We had the baby so close to this happening that I wasn't able to get super educated (while also trying to figure out diaper rashes and what kind of bottles to use!). I really feel quite ignorant. I never even knew about the PTH until very recently. :oops;
Thanks again. You all are really a treasure trove of info. :clap;
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KS honey how many times do I have to tell you!! Sensipar and Cinacalet are the SAME THING!!!!!! did you not see the scan of the med package I posted for you? :) Sensipar is just the trade name (like Prozac or whatever) that isn't used in the UK for whatever reason. Cincacalet is the actual compound. :) :rofl; :grouphug;
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RM honey are you SHOUTING at me ? :rofl; I KNOW they are the same product , what i probably should have said is ...Over here its called Cinacalcet ! not Sensipar ! Keep ya bloomers on :sir ken; Im going to send you some Prozac :rofl; (or do we call it something else ? ) :rofl;
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:rofl; :rofl; :rofl; :rofl; :rofl; I think it's Prozaxc here too :rofl; :rofl; :rofl; :rofl; he he
As for the bloomers... it's my job to gey them off others :)
>:D >:D >:D
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Queen Victoria's bloomers were recently auctioned here in the UK. Click this link (http://www.independent.co.uk/news/uk/home-news/queen-victorias-bloomers-revealed-1783555.html#Scene_1)
You missed your chance to add to your collection RichardMel :rofl;
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I go Commando !!! :rofl; :rofl; :rofl;
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Queen Vic's a tad too old for me :p I like them around my own age.... well ok, maybe a bit younger
:shy;
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A few updates - he has started the sensipar and isn't having the weird reaction to it he had last time! :clap; He does seem to be having some acid/gas on a more regular basis but I am not sure they are linked. Does seem to help if he takes prevacid but I am not sure that is allowed? Does anyone know? (like I know Advil is a no-no but I don't know what else)
So we'll get blood drawn in a week or so. Been on the sensipar for about 3 weeks, so I am so hoping it shows in the numbers. Thanks to all of the advice here, I managed to talk him into trying the sensipar (with a BIG meal) - he was totally opposed to it before.
On to other news: our transplant center called and said he was pretty much at top of the list (a few ppl ahead of him) and we need to come in for a stress test!! OMG. I think we are both trying so hard not to get our hopes up but wow would we be so grateful if this happened soon (and super happy if it was spring or summer and not flu season!) Doing everything we can think of to keep him healthy. He had peritonitis last week so we have to get over that hurdle now.
Any good resources for us to read about what to expect after transplant? I honestly haven't looked into it much b/c I didn't want to hope for it.
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Queen Victoria's bloomers were recently auctioned here in the UK. Click this link (http://www.independent.co.uk/news/uk/home-news/queen-victorias-bloomers-revealed-1783555.html#Scene_1)
You missed your chance to add to your collection RichardMel :rofl;
Why on earth, would anyone want a pair so someone else's underwear!