Download Radioiodine treatment for thyrotoxicosis

Radioiodine treatment for thyrotoxicosis
A guide for patients and their carers
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Contents
Introduction1
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
15
© 2012 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.
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
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)
nsurgery
nradioiodine.
2
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
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.
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.
4
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
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
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
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
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
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
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 21.
11
For medium dose treatment
550
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 20.
n If the child is less than three years old, avoid close contact from
Day 1 to Day 25.
12
For high dose treatment
800
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 22.
n If the child is less than three years old, avoid close contact from
Day 1 to Day 27.
13
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 0161 446 3664, or
n Nuclear Medicine Department on 0161 446 3946
nhttp://www.christie.nhs.uk/pro/cs/endocrinology/patient_
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: 01423 709707 or 01423 709448
http://www.btf-thyroid.org/
The Thyroid Eye Disease Charitable Trust,
PO Box 1928, Bristol, BS37 0AX
Tel no: 0844 800 8133
e-mail: [email protected]
http://www.tedct.co.uk/index.html
14
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 0800 882200 (Department of Work and
Pensions’ Disability Benefits Helpline)
 contact The Christie general and benefits adviser on
0161 446 8539
 contact your local social services department
 Macmillan Cancer Support has an advice line: Help
with the cost of cancer on 0808 808 00 00 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
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
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 0161 918 7296 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.
 Email us: [email protected]
For the visually impaired: Large print
versions of the booklets are available,
please contact Patient Information on
0161 446 3576 or you can download
these from the Christie website at www.
christie.nhs.uk.
Christie Website
www.christie.nhs.uk
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 [email protected]
Visit the Cancer Information Centre:
The Christie at Withington Tel: 0161 446 8100
The Christie at Oldham Tel: 0161 918 7745
The Christie at Salford Tel: 0161 918 7804
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. 0161 446 3000
F. 0161 446 3977
Email: [email protected]
Web: www.christie.nhs.uk
Christie
Patient
Christie HospitalThe
Tel:
0845
226Information
3000 Service
August 2012 - Review August 2015
CHR/NM/146-03/11.11.02