Thyroid eye disease and pregnancy: planning a family, the nine months, and life after the birth

Thyroid eye disease is an immune inflammation of the tissues in the eye socket, linked to Graves disease, the autoimmune cause of an overactive thyroid. When a woman with either condition is planning a pregnancy, is pregnant or has just given birth, two questions arrive together: what does this mean for the thyroid, and what does it mean for the eyes? This article is about the eye half. Thyroid hormone treatment is for you to decide with your endocrinologist, the doctor who manages glands and hormones, and the pregnancy itself belongs to your obstetrician. I explain what the eyes need and which eye treatments are affected. The condition is described in my main guide to thyroid eye disease.

Should Graves disease be settled before trying for a baby?

The American Thyroid Association (ATA) pregnancy guideline says yes, as far as it can be. It recommends that a woman with Graves disease who wants a pregnancy has preconception counselling, and that thyrotoxic women are rendered stably euthyroid, meaning thyroid hormone levels are steady and normal, before trying. It describes three routes: radioactive iodine, thyroid surgery or antithyroid tablets, each with its own risks and benefits. As a guide to stable, it suggests two normal sets of thyroid tests at least one month apart with no change in treatment between them, and it strongly recommends contraception until the disease is controlled. Which route suits you is a decision for you and your endocrinologist.

The eyes enter that decision in one place. The EUGOGO guideline, the European consensus on Graves orbitopathy, states that radioactive iodine carries a consistent risk of causing progression, or new onset, of eye disease. In a large trial it cites, progression occurred in 15% of patients given the treatment. The risk is higher in smokers and is reduced by a short course of prednisone alongside, which is why the page on steroids and disease activity matters if that route is chosen. The ATA adds two timing points: pregnancy should be deferred for six months after radioactive iodine, and antibody levels tend to rise after it and may stay raised for many months. If you already have active eye disease, tell your endocrinologist so that the eye picture is part of the discussion.

Why does smoking matter so much?

Because the link is evidence-based and it is something you can change. EUGOGO says all patients with Graves disease, whether or not the eyes are involved, should be urged to quit smoking. Smoking raises the risk of eye disease, smokers have more severe disease, and progression after radioactive iodine is more frequent in them. EUGOGO also reports that smokers respond more slowly or less well to immunosuppressive treatments, and that stopping is possibly associated with a better outcome.

That is a strong case for stopping before conception, and not only for the eyes. If stopping is hard, ask your doctor about support that is suitable in pregnancy.

Can thyroid eye disease start or worsen during pregnancy?

It can, although it is uncommon. A 2020 case report and literature review in BMC Endocrine Disorders states that thyroid-associated orbitopathy may develop or worsen in 0.2 to 0.4% of pregnant women. Pregnancy is a state of enhanced immune tolerance, so improvement is expected, but the authors note that less is known about the course of the eye disease than the thyroid disease, and that the two may follow separate courses. They recommend follow-up of the eyes throughout pregnancy, preferably in a thyroid-eye clinic, and they note that during pregnancy the treatment options are limited.

Thyroid control matters to the pregnancy too. The ATA links poorly controlled thyrotoxicosis to pregnancy loss, high blood pressure in pregnancy, prematurity and low birth weight. It also notes that antithyroid drugs are avoided in the first trimester where possible because of an association with birth defects, and that the risk of relapse after stopping them is higher in people with active orbitopathy. That is one reason the eye findings reach your endocrinologist. The antibodies behind Graves disease can also cross the placenta, which is one reason pregnancy care is shared. None of this is something to adjust yourself.

Scans follow the same principle. The case report postponed an MRI until after delivery in line with radiology guidance, so imaging in pregnancy is planned with your obstetrician and radiologist.

Which thyroid eye disease treatments are avoided or timed around pregnancy?

Two have clear statements in their prescribing information. Teprotumumab, the drug that blocks the insulin-like growth factor 1 receptor, may cause fetal harm according to its US prescribing information, which says it should not be used in pregnancy and that appropriate contraception should be used before starting, during treatment and for six months after the last dose. If a patient becomes pregnant during treatment, it should be stopped. EUGOGO also lists it as contraindicated in pregnancy. The same label says there is no information on its presence in human milk. What the drug does, and what to ask before considering it, is in my article on the newer infusions, which mentions pregnancy only in passing.

Mycophenolate is the second. EUGOGO places it, combined with intravenous steroid, as first-line treatment for moderate-to-severe active disease. The US label for mycophenolate mofetil, written for transplant patients, carries a boxed warning that use in pregnancy is associated with increased risks of first-trimester pregnancy loss and congenital malformations, advises avoiding it if safer options exist, and asks for contraception during treatment and for six weeks after stopping. It also notes that mycophenolate may reduce the effect of oral contraceptive pills, so a barrier method is added.

For the other treatments, steroids given by infusion or tablet, orbital radiotherapy, ciclosporin, azathioprine, rituximab and tocilizumab, the guidelines cited on this page give no pregnancy-specific rule, and those choices are made case by case by the thyroid-eye team with your obstetrician. Local care, such as lubricating drops, is part of EUGOGO advice for all patients, and you should ask the pharmacist or doctor that each product suits pregnancy.

When is eye surgery usually timed?

EUGOGO divides it into two. Rehabilitative surgery, meaning orbital decompression, squint surgery and eyelid surgery, is indicated for inactive residual disease, after the inflammation has burned out. Decompression in the active phase is reserved for severe corneal exposure and for compression of the optic nerve that does not respond to steroids, and sight-threatening disease needs urgent treatment.

For a family, that has a practical meaning. Planned operations wait for stable, inactive disease, so they can usually be scheduled before a pregnancy or after the birth and recovery, and not squeezed in around it. Sight-threatening disease is the exception, and it is treated when it arises, with the obstetric team involved. What decompression does is in the page on orbital decompression.

What changes after the birth and while breastfeeding?

The immune system returns to its non-pregnant state, and autoimmune disease can flare. The BMC review notes that a relapse in the postpartum period is common and cites one study in which 30% of women with pre-existing eye disease worsened after delivery. Have your eyes and thyroid rechecked after the birth, and report new bulging, double vision, redness or lids that will not close.

Feeding changes the choices. The ATA states that radioactive iodine is absolutely contraindicated in the breastfeeding mother. It says antithyroid drugs can be used while breastfeeding, at the lowest effective dose, and that breastfed children are monitored for growth and development. For teprotumumab the label has no information on milk, so any plan waits for the discussion. If you want a specialist who covers both the eyes and the thyroid, the page on who treats thyroid eye disease in Malaysia sets out what to ask. For the wider map, see the orbit and thyroid eye disease section and my hub article on why eyes look tired.