Phosphate Control: Helping you stay in charge
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This booklet has been developed together with people currently receiving haemodialysis treatment and aims to: • Provide information to help you understand the importance of controlling your phosphate levels • Support you in understanding and making decisions about the food you eat and the number of tablets you take to control your phosphate levels • Put you in control of managing your own phosphate levels
How to use this booklet First, make sure you are comfortable, have set aside about 20 minutes to take your time reading the booklet and possibly have a drink or snack ready before you start. This booklet is different from others you may have seen because it aims to be more interactive. You can continue to use this booklet by adding additional information as you progress through your treatment journey. Throughout this booklet, you will see four different symbols. (See page 4.) They are there to help highlight important information, encourage you to make your own notes about phosphate levels, medication or food, and to think about how you can use the information to help you manage your own phosphate level. This is not a test – it’s about helping you to understand your condition and the role phosphate plays in it.
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Find a pen or a pencil to complete this booklet in the spaces provided. Responses to some frequently asked questions may help answer some of your own, but don’t forget, if the answer to your question is not in this booklet, ask your Dietitian; Pharmacist; Nurse; Doctor.
You may feel there is a lot of information to take in. Remember this is not a test – these boxes are here to help highlight some important points. Activities may help you to think about how the information provided could be useful and how it relates to the management of your phosphate.
The Kidneys Most people have 2 ‘bean shaped’ kidneys positioned one either side of the body towards your back, under your ribs, and above your waist. The kidneys are part of the body’s ‘plumbing’ system and act as a filter. Each kidney has a tube like drainage system, called a ureter, to take urine produced in the kidney to the bladder. The bladder also has a tube like drainage system, called the urethra, to allow us to pass the urine out of the body. Together all these parts make up the urinary system. Page 4
The main job of the kidneys is to make urine so the body can get rid of waste products from the blood along with excess fluid. Waste products are made after the body has broken down and digested the food we eat into simple pieces that can be used for energy, growth and repair. This waste is then present in the blood, which the kidneys ‘filter’, and we get rid of in the urine. Imagine the work of the gold miners in the gold rush, over a century ago, sieving for gold in the river beds of California, America. Your kidneys act like the sieve used to search for gold. Blood is pumped to the kidneys by the heart and they filter out all the waste and excess fluid (like the sand and grit falling out of the sieve) and leave the ‘good’ things from the food we eat in the blood so the body can used them (like the gold left in the sieve).
The Kidneys:
3 help control blood pressure
3 keep bones healthy and strong
3 help make red blood cells, which are important to carry
oxygen around the body to help it work properly. Page 5
When your kidneys are not working well the level of waste and fluid can build up in the blood and can make you feel unwell. You may also have problems with high blood pressure and anaemia (shortage of red blood cells). Most people start to feel unwell when their kidney ‘function’ is reduced to about 10% of its normal working. You may hear this described as Glomerular Filtration Rate (GFR). Healthy kidneys keep the right amount of the ‘good things’ in the body but when they are not working as they should even these good things can build up and make people feel unwell. This booklet is all about something call phosphate (you may see it written as part of its chemical symbol – PO4). The level of phosphate can rise when the kidneys are not working quite as well. Phosphate Phosphate is a naturally occurring chemical, known as a mineral and is found in food. Minerals are important substances required in small amounts by the body to make sure it works efficiently and we can go about our normal everyday business. They do not provide any energy but they help us to convert the food we eat into energy. We cannot survive on minerals alone but without them the body would not work as well and it may be harmful to you. Page 6
Bread, rice, potatoes, pasta and other starchy foods
Fruit and vegetables
Meat, fish, eggs, beans and other non-dairy sources of protein
Milk and dairy foods Food and drinks high in fat and/or sugar
Some foods have more phosphate than others. Foods that are high in phosphate are usually found in foods known as proteins, such as meat, oily fish like sardines, milk, cheese, eggs and nuts. The body’s phosphate level is measured by a simple blood test in units known as millimoles per litre (mmol/l). Normal levels should be between 0.8 – 1.4 mmol/l. When your kidneys are not working well this level will rise. Phosphate can be taken out of the body by an artificial process that mimics some of the work of the kidneys, called dialysis (from the Greek word ‘to separate’). During this process, phosphate passes out of the blood into a special dialysis fluid and is removed. Dialysis alone is not good enough to get rid of the extra phosphate from the blood so it is important to also make some changes to your diet and possibly take some tablets when you eat to help maintain levels that will not make you feel unwell. Page 7
Phosphate Binders Phosphate levels can be controlled in kidney failure by:
3 Diet
3 Dialysis
3 Medication
Phosphate binders help keep a balance of the right amount of phosphate in the body. They act by stopping the phosphate in the food you eat being digested and absorbed into your blood stream. This means that less phosphate goes into your blood and reduces the potential to cause damage to your body.
‘Calcichew’ ‘Fosrenol’ ‘Phosex’ (Calcium (Lanthanum (Calcium Carbonate) Carbonate) Acetate) not to scale
‘Renagel’ ‘Renvela’ (Sevelamer (Sevelamer Carbonate) Hydrocloride)
Think about the phosphate binder being like a magnet and the phosphate from the food you eat as metal coins. The coins are attracted to the magnet, stick to it and can then be collected. This is the same as the phosphate binder ‘mopping up’ the phosphate from the food you eat, before it is digested in the stomach and released into the blood, then getting rid of it in your stool when you go to the toilet. Page 8
Phosphate binders only work when you have eaten foods containing phosphate – they will not work when you haven’t eaten. It is important to take your phosphate binders with meals and snacks as recommended by your Dietitian, even when you are on dialysis. The name of my binder(s) is . . . . . . . . . . . . . . . . . . . . . I am recommended to take . . . . . . . per day The timing of your phosphate binders depends on the type you are recommended. Check with your renal team for the right times. Always remember to carry your binders with you - ask your renal team for handy containers to carry a small supply. Fancy a break? There has been quite a lot of information and reading so far, if you feel you need a break, why don’t you come back to the booklet later and look at phosphate found in foods and some of the frequently asked questions. You might want to note down any questions you have so far.
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Phosphate in Food Diet plays an important role in helping to keep you healthy and feeling well, especially with kidney disease. People often get confused over information they have been given as it can change as your condition changes. It is important to speak with your Dietitian to make sure you have the most up-to-date information regarding the best diet for you. Protein foods, such as meat and fish, and dairy foods contain lots of phosphate but they are important for the body’s growth and repair, and should be included in a healthy balanced diet. Small changes to your diet can help control your phosphate levels, as well as taking your phosphate binder medication regularly and attending dialysis sessions. Food Meat
Fish
High Phosphate Pate, liver, kidney, game e.g. venison, rabbit, wild boar Kippers, white bait, shell fish e.g. mussels, crab, shrimps
Dairy Foods
Milk, cheese, yogurt, eggs, ice cream
Biscuits
Chocolate biscuits, flapjacks, oat cake, scones Page 10
Lower Phosphate Alternatives Beef, lamb, pork, chicken, turkey Tuna, salmon, white fish e.g. cod, fish fingers/cakes Soft cheese, spreading cheese, double cream ** a milk substitute can be made using 1 part double cream, 2 parts water Digestives/tea biscuits, shortbread, crumpets, cream crackers
Food
High Phosphate
Lower Phosphate Alternatives
Breakfast Cereals
Cereals containing bran, nuts or chocolate
All other cereals
Other
Milk chocolate, nuts, marmite, marzipan, Horlicks, cola
Plain chocolate, boiled sweets, plain popcorn, jelly sweets or jelly, mints, chewing gum, lemonade
Your Dietitian may recommend a maximum amount of dairy foods for you to help reduce your phosphate intake but keep your diet balanced and healthy. Milk: . . . . . . . . . . . . . . . . . . . . . . . . . pint(s) per day This is the equivalent of . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . of my favourite foods/drinks Cheese: . . . . . . . . . . . . . . . . . . . . . grams/ounces per week This is the equivalent of . . . . . . . . . . . . . . of my favourite foods/drinks Yoghurts: . . . . . . . . . . . . . . . . . . per week This is the equivalent of of my favourite foods/drinks Eggs: . . . . . . . . . . . . . . . . . . . . . . . . per week This is the equivalent of of my favourite foods/drinks Remember not all foods high in phosphate are ‘bad’ or need to be completely avoided. It is important to have a good balance of different foods from all the main food groups so you remain healthy. Ask your Dietitian if you want to check anything about your diet. Page 11
Do you think your diet is high in phosphate? Write down all the things you ate yesterday. Using information you already know, and in the table above, circle the foods you think are high in phosphate. How would you rate your phosphate intake? How many phosphate binders did you take with each meal and snack?
Meal
Number of binders taken
Food
Breakfast
Lunch Evening Meal Snacks
Drinks
Do you think your diet was low
, medium
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or high
?
Watch out for ingredients added to some foods to improve flavours and extend shelf life called ‘E-numbers’. Some of these are phosphate based and can be harmful to people with kidney disease. Look at food labels on the food you eat. If you think it contains lots of ‘E-numbers’ speak with your Dietitian for more information.
Have you had any problems reducing phosphate in your diet? Have you or your family come up with any clever ideas of changes or substitutions to your diet? Why don’t you make a note of the problems you have already solved for yourself or any ideas you have discussed with the Dietitian? Completing this activity allows us to share good ideas with other people who have kidney disease so we can all help each other.
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Frequently Asked Questions Healthy kidneys help to keep the right amount of phosphate in the body and get rid of the rest but when they are not working efficiently the level of phosphate in the blood may rise. Renal patients frequently ask questions about phosphate which we answer below. What happens when my phosphate is too high? Initially, high phosphate levels may cause you to feel itchy. You may not be aware of any symptoms if phosphate levels stay high for a long time but this can cause serious damage. Phosphate and calcium can deposit in parts of the body other than bones (known as Calciphylaxis – ‘cal-ci-fal-axe-sis’). This chalky substance can cause parts of the body to appear like bones even when they are not. If this happens in the vessels carrying the blood around your body and your heart, it can make them narrow and in some cases cut of the blood supply and may cause a heart attack. What happens if I don’t take my phosphate binders? In kidney failure, phosphate can be controlled by diet, medication and dialysis. Diet and dialysis alone might not be enough to control phosphate levels so phosphate binder medication may be required (see pages 6 and 7 for how they work). If you do not take phosphate binders regularly, and phosphate levels remain high, this can lead to a condition known as renal bone disease or renal osteodystrophy – ‘ost-e-o-dis-tro-fi’. This means the bones become unhealthy and weaken, which can be Page 14
irreversible. Renal bone disease can lead to severe pain in the bones, especially the hips, back, legs and knees, and may increase the risk of bone fracture. The condition can start early in kidney failure but is often not detected until after starting dialysis. It is monitored via a blood test and is treated mainly with dialysis and phosphate binder tablets so it is extremely important, if you have been recommended phosphate binder tablets, to take them when you eat. If you have had, or are still having, any problems taking any phosphate binder tablets that have been recommended for you, please discuss this with your specialist kidney team. There may be alternatives that could be tried. It is more common to have high phosphate levels if you have kidney failure, however, low levels may be possible if you have not been eating your normal diet or have been unwell. What should my phosphate level be? Don’t worry, your renal team check your monthly blood results and will provide you with the right information if there is any problems. Can my phosphate level go low or will it always be high? The target blood level for phosphate for people with kidney failure, not on dialysis, should be 0.9-1.5mmol/l and for people on dialysis, 1.1-1.7mmol/l. Do you know what yours is? . . . . . . . . . . . . . . . . . . . . . . . . . . . mmol/l Page 15
Try and fill in the blanks to test your knowledge on phosphate • Phosphate levels are more frequently . . . . . . . . . . . . . . . in dialysis patients • High phosphate levels may make you feel . . . . . . . . . . . . . . . . . . . . . . . . . . • Long term high phosphate levels can cause serious damage to your bones, blood vessels and . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . • You may not feel any symptoms of long term . . . . . . . . . . . . . . . . . . . . phosphate until the ‘damage’ has been done
Phosform Some people found this ‘phosform’ graph a useful way of keeping track of their monthly phosphate results – try it. Each month ask your specialist kidney nurse for your results and plot them on the chart to see how you are doing. Page 16
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What do I do if I have more questions? This booklet does not provide all the answers; its only natural to have questions. Please feel free to speak to your specialist kidney Dietitian/Nurse/Doctor/Pharmacist if you have any other questions. Family and carers are also important – don’t forget they may have questions as well and it may be worthwhile contacting your dialysis team for more information. There is lots of information and advice available, especially on the internet. Some of the information you might find useful but remember, everyone is individual and may not follow the same diet, take the same phosphate binder tablets or need the same length of time on haemodialysis. Make sure you discuss issues with your specialist kidney Dietitian/Nurse/Doctor/Pharmacist to make sure that advice is right for you and your needs. Other places you might like to look for information are: The kidney patient guide http://www.kidneypatientguide.org.uk The U.K. National Kidney Federation http://www.kidney.org.uk NHS Renal Patient View https://www.renalpatientview.org/infoLinks.do
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Notes Date
What is my goal?
How will I reach it?
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Notes Date
Comment
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Notes Date
Comment
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Personal Details Date: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . My Name: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . My Dietitian is: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dietitians contact details: . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...................................................... ...................................................... Telephone: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Copies of this information are available in other languages, formats or large print upon request. We will try to make this information as accessible as possible to individuals with disabilities to allow them to access this service. If you have any comments or suggestions on how this information can be improved in the future please contact the Renal Dietetic Team, Western Infirmary, Glasgow. Tel: 0141 211 2026.
This booklet was developed by: Haemodialysis Patients at Glasgow Royal Infirmary and The Dietetic Service, NHS Great Glasgow and Clyde Special thanks to James Paget University Hospital Supported by an educational grant from: Shire Pharmaceuticals Š NHS Greater Glasgow and Clyde, 2012; Shire Pharmaceuticals Design by GND. Email: info@weareGND.com No part of this book may be reprinted or reproduced or utilised in any form or by electronic, mechanical or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.