This page aims to answer some of the questions most frequently asked by our members.
PLEASE NOTE: We are currently supporting the NIFTy clinical trial for people due to have thyroid surgery. We recommend that you ask your doctor about joining this important trial and get in touch with us for further details. Read more about the trial here
What is a thyroidectomy?
A thyroidectomy is an operation to remove all or part for the thyroid gland. It is the treatment for a number of different thyroid disorders including thyroid cancer, goitre, thyroid nodules and Graves Disease.
Watch Surgeon Professor Neil Tolley at Imperial College in London talking about thyroid and parathyroid surgery https://youtu.be/YOkM98efeio
Where can I find more information about having an operation?
We recommend the Royal College of Surgeons leaflets about having an operation and their patient group has produced a useful patient diary which you can use to help collect your thoughts, record details and list the questions that you need to ask.
This Patient Information Leaflet No.3: Surgery for Thyroid Cancer (Appendix 4: Patient information) accompanies the British Thyroid Association (BTA) clinical guidelines for the management of thyroid cancer and was written by a group of endocrine patient organisations, including Parathyroid UK (then Hypopara UK). It is for thyroid cancer patients but contains a lot of helpful advice from preparation to recovery for anyone about to be admitted to hospital for a thyroidectomy.
Where can I find more information & support about my thyroid?
If you have thyroid cancer you can get in touch with the Butterfly Thyroid Cancer Trust.
If you have any thyroid condition visit the British Thyroid Foundation for more information.
How safe is thyroid surgery?
Modern thyroid surgery is very safe but there can be complications which may cause bleeding or affect your voice. Apart from these, there is a 10% risk of damage to the parathyroid glands in your neck causing permanent hypoparathyroidism.
The main complication, of which you do need to be aware, is the possible risk of damage to the parathyroid glands during thyroid ( or parathyroid ) surgery.
Why do I need parathyroid glands?
Parathyroid glands produce parathyroid hormone which regulates the amount of calcium in your blood. Calcium keeps your body functioning properly. If parathyroid glands are damaged they cannot produce parathyroid hormone and, if permanently damaged, they cannot be fixed.
If your parathyroid glands are permanently damaged you will be left with a condition called hypoparathyroidism ( which means low parathyroid hormone). It is a rare condition and requires lifelong treatment. It causes hypocalcaemia (low calcium levels in your blood) which causes a range of symptoms and can be life threatening.
What if my parathyroid glands are damaged during surgery?
After your operation, parathyroid glands may take a few days before returning to normal activity. You may feel pins and needles in your hands and feet, or more rarely, cramps in your legs too. If this happens, or you start to feel unwell, you should tell your doctor immediately.
In up to 30% of cases hypocalcaemia is usually temporary (up to about 6 months) and quite mild. 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.
Can post surgical hypoparathyroidism be prevented?
During thyroid or neck surgery, care must be taken by the surgeon to identify and locate the parathyroid glands and to avoid damage to them, if possible. A very experienced endocrine surgeon should be sought.
We have been working with our medical advisors over many years to help educate and raise awareness about this condition and we continue to do all we can to prevent it happening to you. Sometimes, damage to or removal of the parathyroid glands is unavoidable even in the best of hands but the more operations a surgeon performs the less risk there is for the patient so we strongly advise you to check out your surgeon!
How do I find an experienced surgeon?
The British Association of Endocrine and Thyroid Surgeons (BAETS) collects information and published an audit. You can find out how many surgeries your surgeon performs annually here: De-anonymised numbers 2018 (1)
It is vital that your operation is carried out by a highly skilled endocrine surgeon. Do not hesitate to ask about your surgeon’s experience, the number of operations they perform and their complication rate.
You can also 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 Royal College of Surgeon’s provide a Find a Surgeon page on their website
I am having symptoms after my surgery, what should I do?
Anyone undergoing thyroid or neck surgery, radiotherapy to the neck or the chest, or chemotherapy (drug treatment for cancer) should be regularly monitored for symptoms and signs of low calcium levels.
If you feel unwell contact your hospital contact immediately to get a calcium blood test – calcium levels can fluctuate and you may need to have your medication adjusted. Failing that, go to A&E or contact your GP. Here is the list of symptoms you might be experiencing.
If you have just found this page after your operation please do get in touch. We have a telephone helpline (01342 324091) and a brilliant facebook support group where you can get immediate advice and find others who know how you feel. Join us here
Order our Emergency Medical Card to keep in your wallet and keep a diary of your symptoms and test results. Try to stay calm. Things will improve and over time we can help you learn to manage your calcium levels and get back to a normal life.
Is there anything I can do to prepare before my operation to help me recover more quickly?
Before your operation, check that you have good levels of magnesium and vitamin D as it is possible that these may help you to recover more quickly and keep your calcium more stable. Eat unprocessed, fresh food regularly, with calcium foods at each meal – what you eat can really make a difference to your recovery. Keep well hydrated and drink 1-2 litres of water a day. 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.
The Royal College of Surgeons Patient Group have produced a very helpful leaflet about recovering from a thyroidectomy called ‘Get Well Soon‘. This includes what to expect, how to recover well, planning your return to work and a recovery tracker.
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 procedure 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.
If you’re having parathyroid surgery please visit our Primary Hyperparathyroidism page