Can I get a second opinion on my thyroid eye disease?

This article will cover how to know if a second opinion is appropriate for you, and how to go about seeking one if needed.

Thyroid eye disease is a rare condition that challenges sufferers physically, functionally and psychologically. It is important that affected people receive appropriate care from healthcare professionals with an understanding of the condition. One of our goals at TEDct is to educate more doctors, nurses, optometrists and other healthcare staff to provide excellent care for the condition. However, we often hear from TEDct members that it can be challenging to gain access to knowledgeable professionals.

Why seek a second opinion?

You might start to feel that a second opinion would be helpful at a number of stages in the assessment and treatment process. This could be after consulting a GP or endocrinologist who is unaware of TED, underestimates its impact or may be reluctant to refer you to an ophthalmologist. You might also have seen an ophthalmologist but did not feel confident that they are experienced with managing TED.

Good reasons to consider a second opinion include:

• If you have seen a healthcare professional who did not seem well-informed about TED.

• You have undergone treatment and your symptoms continue.

• The recommended treatment has risks or possible side effects and you do not understand the doctor’s explanation well enough to weigh up your decision. (In this case you might also find a second appointment with the same doctor useful or request written information so you can consider the decision in your own time).

• Your gut reaction tells you something is not right. This could be because the recommended course of treatment differs widely from what you have learned about from TEDct or other reliable sources or complex surgery was recommended by a doctor who does not look after TED patients often.

• An “old-fashioned” endocrinologist tells you nothing can be done about TED.

It is useful to reflect on your reasons for considering a second opinion. Sometimes there can be a personality clash with the doctor which can be a valid reason to get referred to someone else. It is very important to feel comfortable with whoever is supervising your care for a long-term condition. However, in such cases it might be worth trying another consultation with the same doctor and being clear about your concerns and what you need to talk about.

Doctors are only human and may have busy or stressful days when their communication is not as good as usual! Sometimes doctors may have to tell us things that are true but can be difficult to hear (e.g. you must stop smoking; you need surgery). In this case a follow-up consultation may be useful if you found the first one very upsetting. A good specialist should be prepared to discuss the diagnosis and their recommendations with you – explaining why they suggest a particular plan. However, they will also not be pressured into providing treatments that are not in your best interest.

Am I entitled to a second opinion on the NHS?

As an NHS patient, you have the right within the NHS to see a GP or specialist who is competent to deal with your case. You have the right to request a second opinion, but you do not have an automatic right to a second opinion on the NHS.

You must therefore be able to explain why you think the second opinion would be helpful, and if you have a good reason your request will usually be granted. If your situation is that the GP does not wish to refer you to an ophthalmologist, you also have the option of seeing a different GP in the same practise or registering with a different GP.

If your doctor does agree to refer you for a second opinion, you may be offered a degree of ‘patient choice’ under the NHS, but you do not have an automatic right to be referred to a specific specialist of your choice. For example, a TED patient living in Worcester might reasonably be offered the option of second opinion referral to the Thyroid Eye Disease Clinic in Birmingham or Bristol, but the GP would be unlikely to grant a request for referral to Edinburgh or London without good reason when high quality care is available more locally.

In addition, you should not be referred to someone you do not wish to see, for example, a doctor with whom you may have had an unsatisfactory experience in the past.

How should I request a second opinion?

If you have decided that a second opinion is right for you, you should explain to your GP or specialist your reasons for the request. Try to be objective, i.e. state your opinions factually. For example, it is better to say “the doctor I saw recommended surgery but would not tell me how many times they have performed the procedure” rather than “the doctor seemed incompetent and didn’t know what they were doing”! You have several possible routes to seek referral to a specialist ophthalmologist through a GP, an optometrist or endocrinologist.

When asking for a second opinion, it is usually helpful to the doctor providing that second opinion, to be able to see your medical records pertaining to any assessment or treatment so far. Within the NHS, the referring doctor may be able to arrange this directly for you if they know details of where you have been seen before. You are also entitled to request copies of your own medical records but there may be a fee for this depending on how much printing and administrative time is involved. CT and MRI scans can also usually be digitally transferred between hospitals as needed, so if you have had previous scans it is worth asking for this to be mentioned on a referral so this can be organised ahead of your appointment.

The BOPSS (British Oculoplastic Surgery Society) website now has a thyroid eye disease service directory which provides information about specialist thyroid eye disease clinics and the range of services available in each hospital.

What about private second opinions?

If you are willing and able to pay for your second opinion privately, you can choose to see any doctor or specialist you wish – provided they offer private practice. If you go via this route, it is worth researching potential doctors before choosing. Look for ones who state a specialist interest in TED. Ideally, someone whose NHS work involves a role in a specialist thyroid eye disease clinic to ensure they are up- to -date in the field. The BOPSS website is a good way to find an oculoplastics specialist as all full members should have received training in TED.

Outside the UK, ESOPRS, ASOPRS and APSOPRS fulfil similar roles (European/American /Asia-Pacific Societies of Oculoplastic & Reconstructive Surgery). You should also ensure that you provide the doctor with medical records from any previous assessments and treatment where possible.

If you are looking for reconstructive ‘appearance-related’ surgery privately such as blepharoplasty this may not be funded on the NHS. While it is important to see a surgeon who has experience with TED, an oculoplastics specialist is usually the best choice.

Non-ophthalmic cosmetic plastic surgeons may not have sufficient experience with the changes in the tissues around the eye that occur in TED or with the higher risk of eye surface problems after surgery. If you have any doubt, ask the surgeon how often they have dealt with similar cases. Try and avoid those who don’t give you a straight answer! I hope this article helps readers decide whether a second opinion is right for them, and empowers TEDct members to ask for one when needed. Most healthcare specialists are open to listening to reasonable requests for second opinions, and they are rarely denied. In my practice, I am fortunate enough to work alongside another oculoplastics consultant with whom I often share opinions in more difficult cases. I would never feel bad if a patient requested a second opinion unless they were rude or vindictive about it. You should not worry that a polite request for an additional opinion will upset or offend your doctor.

Medical staff generally want the best for their patients! Do not hesitate to ask, should you feel that more help is needed in your particular case. TED is such an unusual condition – even the experts still have a lot to learn.

If you want to hear from other TED warriors who are going through similar experiences, our Facebook forum Thyroid Eye Disease Support UK now has more than 1000 members.

Article written by Rebecca Ford, consultant oculoplastic surgeon at the Bristol Eye Hospital for and on behalf of TEDct.