If you have just been told you need an operation, for whatever reason, you are probably feeling shocked and upset. Take time to get used to the idea and please do come to our forum or facebook group for a chat. When the shock has subsided you will probably have some questions so this page provides the answers to some of the questions most frequently asked by our members. If you have any more questions please get in touch. We’re here to help.
I’ve never had an operation before. Help!
Don’t panic. There is plenty of information and support available these days – you don’t have to do this on your own. The Patient Liaison Group at The Royal College of Surgeons have produced a patient diary which you can use to help collect your thoughts, record details and ask the questions that, later on, you may wish you had remembered to ask. The have also produced a general guide to ‘Having an operation’.
What is a thyroidectomy and where can I find out more ?
A thyroidectomy is an operation to remove all or part for the thyroid gland.
We strongly recommend that you read this British Thyroid Association Patient Information leaflet 3: Surgery for thyroid cancer which a group of endocrine patient organisations, including Hypopara UK, collaborated to write. Although written for thyroid cancer patients it contains a lot of helpful advice from preparation to recovery for anyone about to be admitted to hospital for a thyroidectomy.
The Royal College of Surgeons Patient Liaison Group have also produced a leaflet about having a thyroidectomy called ‘Get Well Soon’.
Surgeon Radu Mihai explains the whole process here
How safe is thyroid surgery?
Modern thyroid and parathyroid surgery is very safe indeed. There is a small risk of bleeding or damage to the voice in thyroid surgery but these are quite low. However, the main complication, of which you do need to be aware, is the possible risk of damage to the parathyroid glands during thyroid surgery.
After parathyroid surgery, your bones may absorb more calcium from the blood causing sudden but temporary hypocalcaemia (low calcium levels), a condition called “hungry bone syndrome”.
What will happen if my parathyroid glands are damaged during a thyroidectomy?
When parathyroid glands are damaged they cannot produce enough parathyroid hormone to regulate your calcium and you will experience hypocalcaemia (low calcium levels). Even undamaged glands may take a few days before returning to normal activity and you may feel pins and needles in your hands and feet, and more rarely, cramps in your legs too. If this happens, or you start to feel unwell, you should tell a nurse immediately.
In up to 30% of cases hypocalcaemia is usually temporary (up to about 6 months) and quite mild and you may need to take calcium supplements until your levels stabilise. In more severe cases, you may need to have calcium by drip and take active vitamin D capsules as well until stable.
In up to 10% of cases, the damage is permanent, a rare condition known as post surgical hypoparathyroidism. It is a lifelong condition. If this happens to you, you will need daily vitamin D and calcium medication and you will receive free prescriptions ( ask your GP for a Medical Exemption Certificate form). You will need to be referred to a consultant endocrinologist who is experienced in managing calcium levels and you will need to be monitored by them 2 or 3 times a year with your GP providing interim care if necessary.
Check that you have good levels of magnesium and vitamin D before your operation as it is possible that these may help you to recover more quickly and keep your calcium more stable.
Will my voice be affected?
Immediately after a thyroidectomy your voice may sound different and feel weak but this is usually temporary. It can take up to 6 months to regain full strength. Sometimes there may be changes in the voice, due to injury of the recurrent laryngeal nerves, which control the movement of the vocal cords in the larynx (voicebox). These may recover spontaneously or, rarely, be permanent.
Surgeon Radu Mihai has provided some voice exercises designed to strengthen vocal cord movements and to improve the quality of the voice. There is also a voice exercise video to watch.
Is there anything I can do to help me recover more quickly?
Yes! Check that you have good levels of magnesium and vitamin D before your operation as it is possible that these may help you to recover more quickly and keep your calcium more stable. If you feel unwell contact your GP or outpatient department to get a calcium blood test – calcium levels can fluctuate and you may need to have your medication adjusted. Get in touch with our forum or facebook group where you can meet others, ask questions and learn how to manage your calcium levels.
Eat unprocessed, fresh food regularly, with calcium foods too, and drink lots of water – what you eat can really make a difference to your recovery. Stop smoking, limit alcohol, stick to a routine to help you get back to normal and don’t be embarrassed to ask for help and visitors – keeping your spirits up is important.
How do I know if my surgeon is properly qualified?
Your local hospital may have details on their website or you can check the the Royal College of Surgeon’s Find a Surgeon page. Alternatively, a doctor’s registration details online using the General Medical Council’s List of Registered Medical Practitioners. You can contact the GMC by telephone 0161 923 6602 or visit the GMC website.
How do I find an experienced surgeon?
It is important that your operation is carried out by a highly skilled surgeon. Do not hesitate to ask about your surgeon’s experience, the number of operations they perform and their complication rate. You can find out more about your surgeon here
This information is collected by the British Association of Endocrine and Thyroid Surgeons (BAETS) and is updated annually.
This leaflet from BAETS explains what information is collected for the audit. https://www.baets.org.uk/wp-content/uploads/Patient-Information-Leaflet-%E2%80%93-UKRETS.pdf
You can search by name, hospital or postcode for information about the outcomes of endocrine and thyroid surgeons on the British Association of Endocrine and Thyroid Surgeons (BAETS) Surgical Outcomes website page. This gives further data about an individual surgeon’s practice, number of operations and late hypocalcaemia rates ie the percentage of patients still requiring calcium or vitamin D supplements 6 months after total thyroidectomy.
An experienced surgeon should be doing about 50 thyroid/parathyroid operations a year.
The individual results of around 5,000 consultant surgeons have been published for the last 2 years by the NHS and are available on the MyNHS website
What if I have a complaint?
The General Medical Council provides guidance on what to expect from your doctor and a guide for patients on who to complain to. The Royal College of Surgeons provide ‘Good Surgical Practice’ guidelines and their own advice on making a complaint.
Always talk to the doctor concerned first in case the matter can be resolved informally. Most complaints about doctors can be settled locally, and quickly, by the doctor’s employers. The NHS hospital, GP practice, private hospital or clinic where you received care have their own complaints procedures. The NHS complaints precedure is explained here
Most hospitals have a Patient Advice and Liaison Service (PALS). They offer confidential advice, support and information on health-related matters to patients, their families and their carers. Find your local PALS office.
Where can I get more support?
Parathyroid UK has a telephone helpline and facebook groups where you can talk to someone about your operation.