Radioiodine treatment for thyrotoxicosis

Transcription

1 Radioiodine treatment for thyrotoxicosis A guide for patients and their carers We care, we discover, we teach

2 Contents Introduction 1 Your treatment 1 What is thyrotoxicosis? 1 What is radioiodine? 1 Why use radioiodine? 2 What are the benefits of treatment? 2 Are there any alternatives to this treatment? 2 What happens if I don t have this treatment? 3 Is the treatment dangerous? 3 Will I have treatment on my first visit? 4 Can I eat and drink before my treatment? 4 What about my tablets? 4 How is the treatment given? 5 How long does the radioiodine take to work? 5 Are there any short term side effects? 5 Are there any long term side effects of the treatment? 6 Are there any extra risks in having children after treatment? 6 Precautions you need to take 7 Can someone come with me to the hospital? 7 Should I tell anyone if I am pregnant or breast feeding? 7 How may I travel home? 7 How long will the radioiodine stay in my body? 8 Will the radioiodine affect other people? 8 When can I go back to work? 9 What are the precautions when I get home? 9 For low dose treatments 11 For medium dose treatments 12 For high dose treatments 13 Information for husbands/wives/partners 10 Travelling abroad in the next three months? 14 Further information 14 Benefits and finance information 15 Student training The Christie NHS Foundation Trust. This document may be copied for use within the NHS only on the condition that The Christie NHS Foundation Trust is acknowledged as the creator.

3 Introduction Your doctor has referred you to The Christie for consideration of radioiodine treatment for your thyroid gland, either because it is overactive or enlarged. This is not cancer, but it is a condition which can be treated with radiation. The Christie specialises in this type of treatment. Not everyone referred has this treatment, but we have sent you this information in case you are treated in this way. The information is in two sections: the first part is about your treatment, and the second part explains the precautions you should take after treatment with radioiodine. Your treatment What is thyrotoxicosis? Thyrotoxicosis arises when the body produces too much thyroid hormone from the thyroid gland. This gland is situated in the neck in front of the windpipe. When healthy, the thyroid gland is small and cannot be easily felt. The normal action of thyroid hormone is to keep all bodily functions occurring at the correct rate. It directly affects the heart rate, bowel activity, skin and other organs. What is radioiodine? Iodine is a natural element which is found in food. Iodine from your food concentrates in your thyroid gland. Radioiodine is a form of iodine which gives off radiation. We use radioiodine in carefully controlled doses to treat an overactive thyroid gland. 1

4 Why use radioiodine? Your symptoms are being caused by your thyroid gland. This gland uses natural iodine to make chemicals called thyroid hormones. These are used to regulate certain body functions. In your case, the thyroid gland is overactive or enlarged, and excessive amounts of these hormones are being produced. After you have had the radioiodine, it will concentrate in the thyroid gland. The radiation given off by the radioiodine will reduce the activity of the thyroid and so will improve your symptoms. Your doctor will discuss with you the reasons for this form of treatment. If there is anything you do not understand, please ask. The benefit of radioiodine treatment is that most people (about 90%) who have an over-active thyroid are cured by a single dose. About 80% then go on to have an underactive thyroid. What are the benefits of treatment? Radioiodine is an effective treatment for an overactive thyroid gland and can also be used to shrink an enlarged thyroid gland (goitre). Treatment of an overactive thyroid gland will control symptoms such as weight loss, anxiety, sweating, heat intolerance and reduce the risk of longterm complications, such as irregular heart beat (atrial fibrillation). Are there any alternatives to this treatment? There are three ways to treat an overactive thyroid gland: n tablets (carbimazole or propylthiouracil) n surgery n radioiodine. 2

5 Carbimazole and propylthiouracil (see the separate leaflet available in the clinic) are the two drugs which are extremely effective at controlling an overactive thyroid. They are typically taken for 18 months with the dose being adjusted to keep the thyroid hormone levels under control. Side effects of treatment are rare but the major problem is that the thyroid may become overactive again when treatment is stopped. Modern thyroid surgery is extremely safe and effective. It is usually reserved for patients with large thyroid glands (goitre), or those who have failed with other forms of therapy but is an option for most patients if they wish. Typically the whole gland is removed and lifelong thyroxine replacement therapy is necessary. Radioiodine has the advantage of permanently curing an overactive thyroid in nine out of 10 patients without having to have an operation. What happens if I don t have this treatment? It is important that your thyroid is adequately treated. As described above, there are three ways of treating an overactive thyroid and it is important that if you do not have radioiodine that you are treated either with medication (carbimazole or propylthiouracil) or by surgery. Is the treatment dangerous? No. The safety record of the treatment is excellent. Radioiodine has been given to millions of people since it was introduced in the early 1940s. We know that it is both safe and effective. The rest of your body will receive a smaller radiation dose than your thyroid. Other people may be exposed to an even smaller dose if they come into close contact with you. We will help you to keep this as low as possible. 3

6 Will I have treatment on my first visit? Most people have treatment at their first clinic visit. Before you have treatment with radioiodine, you may have some more tests to make sure that it is suitable for you. If the doctor decides that you need some more tests, you may have to wait for the results and perhaps come back on another day to have the treatment. If you have treatment with radioiodine, there are some preparations and precautions which we would like to explain to you. Can I eat and drink before my treatment? Yes. You can eat and drink as normal, before and after coming to The Christie, and alcoholic drinks are allowed too. There is no need to have a low iodine diet before the treatment. 4 What about my tablets? Please follow the instructions in the appointment letter. Anti-thyroid drugs (carbimazole, neomercazole or propylthiouracil) or thyroid hormone tablets (thyroxine) interfere with the radioiodine treatment. The appointment letter will usually ask you to stop taking these one week before coming for treatment. Follow the instructions in the letter carefully as treatment can only start after you have stopped taking these tablets. You will be given instructions by the doctor about restarting medications when you come for radioiodine treatment. If you are taking any tablets which contain iodine or kelp (a seaweed which contains iodine), such as vitamin or mineral supplements, you will need to stop taking them at least a week before being treated with radioiodine. If you have thyroid problems it is best not to take any tablets or vitamin supplements which contain iodine or kelp.

7 Please bring with you any other tablets and medicines you are taking, including any you have bought from a chemist. Show them to the doctor who examines you. You should be able to continue taking them, but we would like to check. How is the treatment given? Having the treatment is very easy. We will give you a small drink (less than half a cupful) containing the radioiodine diluted in water. It looks and tastes just like water. You will drink it through a straw and then have some more water to rinse it down. How long does the radioiodine take to work? It can take between a few weeks and several months for things to settle and to control the thyroid. If the treatment has not worked within six months we can repeat the treatment. Are there any short term side effects? Most people notice no ill-effects from the treatment and feel entirely well afterwards. Occasionally, you may develop the symptoms of an overactive thyroid (such as palpitations and sweating), usually five to 10 days after the treatment. For this reason we ask most people to take a beta-blocker called propranolol, for two weeks after the treatment, and to restart carbimazole or propylthiouracil one week after the treatment. If you have thyroid-related eye disease, you may be worried that these eye problems may get worse after treatment. 5

8 The doctor will discuss this with you before you have any treatment he or she may suggest that you may need to take a steroid called prednisolone for up to two months. Are there any long term side effects of the treatment? Treatment with radioiodine may result in your thyroid gland becoming underactive. This could happen in a few months or even years. Your doctor will arrange for you to have regular blood tests to detect this. Underactivity of the thyroid is easily treated with the natural thyroid hormone thyroxine. This should prevent the symptoms of an underactive thyroid such as weight gain and lethargy. Are there any extra risks in having children after treatment? No. Many years of experience of using radioiodine shows no effect on children of patients who have had radioiodine. However, we must strongly advise you: n not to become pregnant for six months after radioiodine treatment n not to breast feed n not to father children for four months after radioiodine treatment. Precautions you need to take Can someone come with me to the hospital? Yes, but please do not bring anyone under the age of 18, or pregnant women with you. Should I tell anyone if I am pregnant or breast feeding? Please contact us immediately if you are pregnant or breastfeeding. 6

9 Radioactive iodine cannot be given if you are pregnant or breastfeeding. We will ask all women whether you are or might be pregnant or breast feeding, before you have the treatment. We may also ask you to have a pregnancy test. If you are pregnant, or even if you think you may be, the treatment must be delayed. These precautions are to protect your baby. How may I travel home? This may depend on the amount of radioiodine you have been given and also on the length of the journey. We will advise you about this. Generally, you may travel home alone, for instance, driving or walking. Usually you may travel by private car or taxi, as the only back-seat passenger, provided you are not travelling with children or pregnant women. If you travel to The Christie by public transport, we will tell you whether it is all right to go home the same way or not. It is normally possible to travel home by public transport as long as you do not spend more than one hour sitting next to the same person on the bus or train. How long will the radioiodine stay in my body? Within a few hours, most of the radioiodine will be taken up by your thyroid gland. The treatment effect will be concentrated there. Other parts of the body will absorb smaller amounts. The radioiodine will gradually disappear from your body, mainly in your urine. You should drink plenty of fluids during the first two days after your treatment, so that you go to the toilet more often. Emptying your bladder regularly will help to remove the iodine that has not been 7

10 taken up by your thyroid. Very small amounts of iodine will also leave your body in saliva, faeces and perspiration. Also, because the radioactivity gradually decays, the amount of iodine in your body will reduce each day. How long it takes to disappear depends on how much you are given. If you have any problem with incontinence, please mention this to the doctor when you come for treatment. Will the radioiodine affect other people? Because the iodine is radioactive, you will be radioactive for a while after the treatment. Anybody who comes into close contact with you will get a small radiation dose which is best avoided. Things that you touch such as the telephone, or books you handle do not become radioactive. The treatment is for your benefit, but you will have to follow some precautions for a while, until the amount of radioactivity has fallen to the right level. The advice we give you is to protect other people from the radiation, especially your own family. You may continue: n to cook for other people n to use the telephone n to have usual contact with pets. When can I go back to work? You will probably need to take some time off work. The length of time will depend on what you do, particularly on how close you are to other people during the working day, and whether you are close to the same person or people all the time. It also depends on the amount of iodine you are prescribed. We will ask you about your work to give you the right advice, but some examples are below as a rough guide:- 8

11 n full-time nursery nurse - three weeks from treatment day n full-time office worker sharing an office - two weeks from treatment day n half-time shop worker - one week from treatment day n lorry/van driver working alone - no time off work is needed. What are the precautions when I get home? When you are ready to go home, the staff will give you a card with some instructions. Although the radiation dose to other people will be small, it is necessary to make sure that it is as low as possible. You will reduce the radiation dose to other people if you follow the instructions on the card. Please follow the instructions for the lengths of time stated after the treatment, starting with Day 1 as the day you have your treatment. The main instructions aim to limit the time you spend close to other people. During the periods of restriction, it is possible to be close to other people for a few minutes, a few times a day. So hugging every now and then is OK, but sitting next to your child for two hours watching a film is not. We hope that these precautions don t make the time following your treatment too hard for you. We would rather you have the information in advance, so that you can discuss it with your family at home, and at work, if necessary. If you look after children either at home or work please discuss this with us. The instructions depend on the amount of iodine you are prescribed. Most patients receive low or medium dose treatment. We suggest that you look at and plan for the instructions for the medium dose treatment, 9

12 before you come for your appointment. If it is then decided that you need high dose treatment, you could ask to defer the treatment for a week or two if you need to make extra arrangements. Information for husbands/wives/partners If you follow the information and restrictions listed in this booklet, the radiation exposure of all your family will be below the national limits for members of the public. It is permissible for an adult family member (except for a pregnant woman) to look after you before the time periods shown above have passed, for example to look after you if you are unwell or disabled. Also, if sleeping separately is difficult, then it may be that you both choose to share a bed before the suggested times have passed. Because your husband/wife/partner might then receive a higher radiation exposure from doing these things, we must be sure that they are aware of the small risk involved, and that they have given their consent. If your partner or other family member is in this position, please ask them to read and sign the separate letter which will be included with your appointment letter. It contains some more information for them. Please then bring the letter with you when you come for treatment. More information is available via the phone numbers listed on the next page. 10

13 For low dose treatment 400 From Day 1 to Day 4 n Don t share crockery (plates, bowls, cups etc), cutlery (knives, forks, spoons etc) or toothbrushes with others. Rinse your crockery and cutlery after use, then wash with other people s. n Avoid sexual contact and open-mouth kissing. n Avoid food preparation that involves a lot of handling of food that cannot be washed, like making pastry or bread or wear thin plastic gloves during food preparation. n Flush the toilet twice after use, and pay extra care with handwashing afterwards. n Make sure that no-one else uses your towels and face-cloths. From Day 1 to Day 11 n Try to stay more than an arm s length away from other people, and limit the time you spend close to them. n Sleep in a separate bed please see the Information for husbands/wives/partners section later in the booklet. Advice about contact with children If you are a main carer for young children, the amount of time you normally spend close to them probably depends on their age. For this reason, the periods of restriction below depend on the children s age. n If the child is more than five years old, avoid long periods (more than a few minutes, a few times a day) of close contact (less than an arm s length) from Day 1 to Day 11. n If the child is three to five years old, avoid close contact from Day 1 to Day 16. n If the child is less than three years old, avoid close contact from Day 1 to Day

14 For medium dose treatment From Day 1 to Day 4 n Don t share crockery (plates, bowls, cups etc), cutlery (knives, forks, spoons etc) or toothbrushes with others. Rinse your crockery and cutlery after use, then wash with other people s. n Avoid sexual contact and open-mouth kissing. n Avoid food preparation that involves a lot of handling of food that cannot be washed, like making pastry or bread or wear thin plastic gloves during food preparation. n Flush the toilet twice after use, and pay extra care with handwashing afterwards. n Make sure that no-one else uses your towels and face-cloths. From Day 1 to Day 14 n Try to stay more than an arm s length away from other people, and limit the time you spend close to them. n Sleep in a separate bed please see the Information for husbands/wives/partners section later in the booklet. Advice about contact with children If you are a main carer for young children, the amount of time you normally spend close to them probably depends on their age. For this reason, the periods of restriction below depend on the children s age. n If the child is more than five years old, avoid long periods (more than a few minutes, a few times a day) of close contact (less than an arm s length) from Day 1 to Day 14. n If the child is three to five years old, avoid close contact from Day 1 to Day n If the child is less than three years old, avoid close contact from Day 1 to Day

15 For high dose treatment From Day 1 to Day 4 n Don t share crockery (plates, bowls, cups etc), cutlery (knives, forks, spoons etc) or toothbrushes with others. Rinse your crockery and cutlery after use, then wash with other people s. n Avoid sexual contact and open-mouth kissing. n Avoid food preparation that involves a lot of handling of food that cannot be washed, like making pastry or bread or wear thin plastic gloves during food preparation. n Flush the toilet twice after use, and pay extra care with handwashing afterwards. n Make sure that no-one else uses your towels and face-cloths. From Day 1 to Day 16 n Try to stay more than an arm s length away from other people, and limit the time you spend close to them. n Sleep in a separate bed please see the Information for husbands/wives/partners section later in the booklet. Advice about contact with children If you are a main carer for young children, the amount of time you normally spend close to them probably depends on their age. For this reason, the periods of restriction below depend on the children s age. n If the child is more than five years old, avoid long periods (more than a few minutes, a few times a day) of close contact (less than an arm s length) from Day 1 to Day 16. n If the child is three to five years old, avoid close contact from Day 1 to Day n If the child is less than three years old, avoid close contact from Day 1 to Day

16 Travelling abroad in the next three months? There are sensitive radiation detectors in airports and ports, as part of increased security. Please tell staff in Nuclear Medicine when you have your treatment if you are planning to travel abroad within three months they will give you a letter to confirm the treatment you have been given. Further information If you have any questions, or if there is anything about the treatment you do not understand, please ask either when you are seen at the clinic, or by telephone to: n Prof. Trainer on , or n Nuclear Medicine Department on n information.aspx Christie leaflet: Taking Carbimazole or Propylthiouracil (PTU) The British Thyroid Foundation 2nd Floor, 3 Devonshire Place, Harrogate, North Yorkshire, HG1 4AA Tel no: or The Thyroid Eye Disease Charitable Trust, PO Box 1928, Bristol, BS37 0AX Tel no: ted@tedct.co.uk 14

17 Benefits and finance information You may have had to stop work and had a reduction in your income. You may be able to get benefits or other financial help. You may be entitled to Disability Living Allowance (in 2013 this will be replaced by Personal Independence Payments) for under 65s or Attendance Allowance 65+. Find out more today: freephone (Department of Work and Pensions Disability Benefits Helpline) contact The Christie general and benefits adviser on contact your local social services department Macmillan Cancer Support has an advice line: Help with the cost of cancer on or www. macmillan.org.uk Student training The Christie is a training hospital for postgraduate and undergraduate trainees so you may meet male and female students in all areas of the hospital. We train doctors, nurses, radiographers and other therapists in the treatment and care of cancer patients. Placements at The Christie are an important part of student training, so by allowing them to assist in your care, you will be making a valuable contribution to student education. Students are always supervised by fully qualified staff. However, you have the right to decide if students can take part in your care. If you prefer them not to, please tell the doctor, nurse, radiographer or other therapist in charge as soon as possible. You have a right to do this and your treatment will not be affected in any way. We also try to respect the concerns of patients in relation to the gender of their doctor and other health professionals. 15

18 Do you have Private Medical Insurance? Patients with Private Medical Insurance or those who choose to pay for their care can access a full range of treatment at The Christie Clinic. This includes initial consultation, diagnostics, surgical, chemotherapy and radiotherapy treatments in one place. The Christie Clinic is the Private Patient facility within The Christie NHS Foundation Trust. We work with The Christie NHS Foundation Trust as a joint partnership with HCA International. The partnership means that a share of the profit from The Christie Clinic is invested back into the NHS for the development of care and future service enhancement. If you wish to use your private medical insurance or pay for your treatment yourself there are three simple steps: 1) Check your insurance cover: In some instances your insurance company may suggest that you have your care and/or some aspects of your treatment on the NHS. It is your choice. You have paid your premiums. You cannot, however, be treated for the same condition by using some NHS services and some of your private medical insurance. If being treated in the NHS you choose to exercise your private medical insurance or wish to pay privately you may of course do this, but your consultant would guide you as to the best clinical option. Arranging a referral back into the NHS for your treatments such as radiotherapy may cause some delays in beginning your treatment. 16

19 2) Make an appointment: There are no waiting lists. An appointment can be easily scheduled to suit you. 3) For more information or advice: Speak to your consultant about continuing your treatment as a private patient Call us on if you have any queries about accessing our services or if you need a quotation if paying for treatment or if you have private medical insurance and wish to clarify any points. us: info.christieclinic@hcahealthcare.co.uk For the visually impaired: Large print versions of the booklets are available, please contact Patient Information on or you can download these from the Christie website at www. christie.nhs.uk. Christie Website Many of The Christie booklets and a list of UK help groups are available on The Christie website, the address is above. You can also access other patient information sites in the UK. We try to ensure that all our information given to patients is accurate, balanced and based on the most up-to-date scientific evidence. If you would like to have details about the sources used please contact Patient.Information@christie.nhs.uk

20 Visit the Cancer Information Centre: The Christie at Withington Tel: The Christie at Oldham Tel: The Christie at Salford Tel: Open Monday to Friday, 10am to 4pm. Opening times can vary, please ring to check before making a special journey. The Christie NHS Foundation Trust, Wilmslow Road, Manchester, M20 4BX, United Kingdom T F enquiries@christie.nhs.uk Web: Christie Hospital Tel: The Christie Patient Information Service August Review August 2015 CHR/NM/146-03/