a patient s guide Radioiodine therapy for benign (non-cancerous) thyroid disease Patient Information Series PI 14

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Nuclear Medicine Department Mount Vernon Hospital Rickmansworth Road Northwood Middlesex HA6 2RN Telephone: 020 3826 2263 Mon - Fri: 8.30am - 4.30pm a patient s guide Radioiodine therapy for benign (non-cancerous) thyroid disease Patient Information Series PI 14 East and North Hertfordshire NHS Trust LJMC 2016 PI14 [yellow] published 04/16 review date 10/17

Consent It is a legal requirement to have a signed consent form from you before the start of your treatment. If you have already been given one of these forms, please bring the completed form with you when you come for your first appointment. If you have not signed a form, please telephone us before your appointment on 020 3826 2263 (Nuclear Medicine). Identification Please note that it is a legal requirement for the staff to check your name and details against your treatment sheet every time you attend. This leaflet has been produced by staff in the Nuclear Medicine Department, together with professionals, patients and carers from Mount Vernon Cancer Centre who have expertise and experience in the topics covered by this publication. All our publications are reviewed and updated regularly. Details of the references used to write this information are available from the Information Team at the Lynda Jackson Macmillan Centre. This leaflet has been written in accordance with the East and North Hertfordshire NHS Trust protocol for patients with thyrotoxicosis. Notes: 2 15

We hope this information has been a helpful guide. It is not intended to replace the advice given to you by your hospital doctor. If you have any questions at all relating to this information leaflet, please call us and we will advise you. A map of Mount Vernon Hospital can be found on the website: www.ljmc.org For more information see our Helpful Hint no. 232 - Getting to Mount Vernon Hospital Nuclear Medicine Department Mount Vernon Hospital Rickmansworth Road Northwood Middlesex HA6 2RN Telephone: 020 3826 2263 Mon - Fri: 8.30am - 4.30pm Radioiodine therapy for benign (non cancerous) thyroid disease Contents Introduction 4 What is radioiodine therapy? 4 Pre-treatment telephone call 5 Where is the treatment given? 5 How is treatment given? 5 Will I have to sign a consent form? 6 What about pregnancy, breast-feeding and fathering a child? 6 What must I do to prepare for treatment? 7 Are there any side-effects from this treatment? 8 Are there any long-term side-effects? 8 When will I know if the treatment has worked? 9 Will I have more than one treatment? 9 Will I be radioactive after the treatment? 9 Hygiene 10 When can I return to work after the treatment? 10 What about my family and contacts once I am at home? 11 What about contact with children/pregnant women? 12 What about travelling? 12 Can I change my appointment once made? 13 14 3

Introduction This leaflet is written for patients having radioiodine treatment for an overactive thyroid gland (thyrotoxicosis), toxic nodule or euthyroid goitre. Thyrotoxicosis is a disorder of the thyroid gland in the neck. This can affect both men and women and causes over production of thyroid hormones. One way of treating this condition is by using radioactive iodine (radioiodine). thyroid gland This treatment may be under the control of a cancer specialist. This is because it uses a radioactive form of treatment. Cancer specialists are trained in the use of radioactive treatment, whereas your physician may not be. Thyrotoxicosis, toxic nodule or euthyroid goitre are not types of cancer. Illustration: LJMC Information Team 2004 Air travel Journeys by air should be avoided for four weeks. Please be aware that some security scanners at airports and railways stations may be so sensitive that they may detect that you have had radioiodine treatment months after your treatment. When you come for your treatment you will be given a yellow sheet with details of your treatment. You should carry this with you for six months. Can I change my appointment once made? Yes, however, we have to order the radioiodine specially for you when your appointment is booked, so the hospital will still have to pay for it if there is a late cancellation. If you have to cancel or rearrange your appointment, please tell us at least one week before your appointment date. This is so that the order for your radioiodine can be changed. We understand if there are situations that arise at short notice, such as illnesses which are beyond your control. 4 What is radioiodine therapy? Your thyroid specialist has recommended that we treat you with radioiodine. Iodine is absorbed by the thyroid gland. The radiation from radioiodine targets some of the cells in the thyroid gland which stops them producing the thyroid hormone. The aim of the treatment is to slow down your thyroid gland so that it stops it being over-active or to reduce the size of the thyroid/goitre. 13

What about contact with children/pregnant women? For about three to four weeks after your treatment you should avoid all close contact with babies, children or pregnant women; close contact means being within one metre. For example don t cuddle children or allow them to sit on your lap. The exact number of days to avoid close contact will depend on the dose of radioiodine you have received. This will be explained and written down for you. If you have small children at home, you will need to arrange for others to look after them for the required length of time. The Nuclear Medicine Department will discuss all these times and details with you. When this time has passed these restrictions will no longer apply. What about travelling? Public transport For the first few days avoid journeys on public transport that take longer than one hour. Private transport You may travel by private transport. If you are travelling with someone else, ensure that you sit as far away as possible from the other person. You must avoid travelling with the same person for more than a total of six hours during the two week period after your treatment (i.e. one journey of six hours, three separate journeys of two hours and so on). 12 Pre-treatment telephone call About two weeks before your treatment, you will receive a telephone call from a member of the Nuclear Medicine Department. They will discuss the treatment and any restrictions with you and you will be able to ask any questions. Where is the treatment given? We will give you your treatment in the Nuclear Medicine Department at Mount Vernon Hospital. Gate 1 is closest to this department. The easiest way to find the department is to enter the building through the main entrance of the hospital. Once inside the main building, turn left just before the Oak Tree restaurant, walk to the end of the corridor and turn left again (staying on the ground floor). Then walk to the end of the long corridor where you will see the signs to the Nuclear Medicine Department on the left. Or you can use the automatic sliding door into the corridor, which is to the left of the main entrance. This gives better access for the disabled. Through this door, turn left and follow the signs to the Nuclear Medicine Department. How is treatment given? You will be treated as an outpatient. We will give you a capsule containing radioiodine with some water to help you swallow it, followed by a hot drink to dissolve the capsule in your stomach. Sometimes the radioiodine will be given as a drink instead of a capsule. 5

Most of the radioiodine goes to the thyroid gland within a few hours. The rest will pass out of your body in your urine during the first few days after treatment. Will I have to sign a consent form? Yes, as with all medical procedures we will ask you to sign a form giving your consent to this treatment. If you are worried or unclear about any aspects of this treatment, please ask the team treating you. They will be pleased to answer your questions. Because your treatment is given at Mount Vernon Hospital that is why a cancer centre consent form is used. If you work with children or pregnant women then this time will be increased to three to four weeks. You will be told how long you must remain away from work, and it will be written down for you. This is to make sure that you and anybody near you are safe. What about my family and contacts once I am at home? At home you will need to take some measures to protect those around you. The exact number of days you must take care will be written down and explained to you. During this time you must: What about pregnancy, breast-feeding and fathering a child? As with all procedures involving radiation, you should not undergo treatment if you are pregnant. You must tell the staff if there is any chance of you being pregnant. You will be asked to sign a consent form to that effect. You must not have this treatment if you are breast-feeding. You are advised not to become pregnant for six months after the treatment. For men who have been given radioiodine therapy, we recommend that you do not father a child for four months after the treatment. Fifty years of experience in using radioiodine to treat thyrotoxicosis has shown no effect on fertility, or on the health of children of patients who have had this treatment in the past. avoid sharing a bed with another person avoid close contact (closer than one metre) with your family or anyone else. For example, if you are watching television do not sit beside anyone. Sit in a separate chair avoid places such as the cinema or restaurants where you are close to other people avoid (non-urgent) dental appointments and (nonurgent) visits to the GP avoid staying in a hotel or boarding house as there may be pregnant women and children present 6 11

Hygiene Most of the radioiodine goes to the thyroid gland; the rest will pass out of your body in your urine. For three days: drink plenty of fluids and don t allow your bladder to get too full men should urinate sitting down to avoid getting urine containing radioiodine on the edge of the toilet after going to the toilet, put the lid down and flush it twice always wash your hands well after going to the toilet A very small amount of the radioiodine will be in your saliva and sweat. Remember: do not do open mouth kissing or have any sexual activities for 14 days make sure all the crockery and cutlery you use is well washed for a few days you may still prepare food for your family, but remember to wash your hands first. You should avoid making bread and pastry for a few days. This is because of having to knead and touch the food When can I return to work after the treatment? Although the treatment will not make you feel ill, you will have to stay off work for a while because of the radioactivity in your body. What must I do to prepare for treatment? To allow the radioiodine to work, you must stop taking certain medications before treatment. Your doctor will explain this and will write it down for you. You must also follow the dietary instructions below. Dietary instructions you must follow: [a] For one week before your treatment: Stop taking over the counter medicines such as vitamin supplements, fish oil tablets and cough mixtures which contain iodine. If in doubt read the labels or check with the pharmacist. Avoid fish, seafood, kelp (a seaweed which contains iodine) and any other products containing iodine. [b] For four hours before your treatment: It is very important that you do not eat anything for at least four hours before your treatment. You may drink normally. [c] For 24 hours after your treatment: Continue to avoid all the food and medications mentioned in [a] above. If your doctor wants you to restrict your diet for a longer period of time before your treatment, they will tell you. If any of these dietary instructions are unclear, see the Nuclear Medicine Department contact details on page 14 (Mon - Fri: 8.30am - 4.30pm) and we will help you. 10 7

8 Are there any side-effects from this treatment? Most people do not have any unpleasant side-effects from this treatment. It will not make you drowsy and you may drive afterwards. Sometimes you may get a sore throat, but this should last for only a few days. If this does happen, drink plenty of cool drinks which will help soothe your throat. If the soreness in your throat lasts for more than three or four days or if you have any other symptoms, please consult your family doctor (GP). This is because the radioiodine treatment may not be the cause. If you do visit your GP, please take this leaflet with you, as it will explain your treatment. There is a small chance that some patients with thyrotoxicosis will be made worse for a short time after having radioactive iodine. If this happens to you it is very important that you discuss this with your doctor. This effect is only temporary. Are there any long-term side-effects? Most people do not have any unpleasant long-term effects from this radioiodine treatment. This treatment aims to stop your thyroid gland from producing too much thyroid hormone. It is likely that the thyroid gland will become underactive and not produce enough of this hormone. This condition is called hypothyroidism, and can be very easily managed with thyroxine tablets. This will usually happen within a few months. It is usually found early without the development of symptoms. It may however develop some years after your treatment. You will have regular blood tests to check your thyroid function. When will I know if the treatment has worked? Your treatment will work slowly over a period of weeks. You may have to go back to taking your thyroid medication for a while until the treatment has had the full effect. Your hospital doctor will explain this to you. Follow-up appointments are usually given four to six weeks after your treatment. It is important that you have a followup appointment. If you do not receive an appointment please contact your doctor. Will I have more than one treatment? We often give a standard dose that works for most people, but for some people the dose may have to be topped up at a later date. Will I be radioactive after the treatment? For a short time after your treatment your thyroid will be slightly radioactive. This is quite normal, so don t worry. There is a small risk to people around you from the radioactivity in your thyroid gland. The easiest way of dealing with this is to reduce the time you spend being near to them. The restrictions that apply to you are explained in this booklet. This will also be written down for you. 9