I wanted to share my experience of having babies whilst living with Graves’ disease. I was first diagnosed in November 2014 at the age of 26 after having symptoms such as weight loss, an increased heart rate, sweating and generally feeling tired. I remember going to my regular gym class and just feeling too weak to do it. So I knew that something was wrong. A blood test showed an overactive thyroid caused by Graves’ disease.

I looked online for information and I saw that it can affect fertility and increase the chance of miscarriage and stillbirth. This was a big worry for me as I knew I wanted children in the future and I didn’t know of anyone my age having a baby whilst living with Graves’ and I wondered if I would even be able to conceive and have a healthy pregnancy.

I was prescribed the antithyroid drug, Carbimazole and after a year my thyroid levels were back to normal and I was in remission. I took no medication for two years but in December 2017, the tell-tale signs started again and I knew it had come back. I went back on Carbimazole and discussed with my endocrinologist about wanting to start a family after my wedding in April 2019 and she suggested we change my medication to Propylthiouracil (PTU), which is the drug of choice during pregnancy, a few months before.

I was surprised but very happy to fall pregnant quickly in May 2019! The pregnancy was classed as high risk due to my Graves’ disease which meant I was under consultant-led care and had extra growth scans as Graves’ can cause babies to be small. My pregnancy was quite straightforward and regular blood tests showed my thyroid function was normal. My baby boy was born at 37 weeks weighing 5lbs 8oz so he was very small for his gestational age. He had a blood test when he was 48 hours old and it did show slightly increased thyroid levels. However, a follow-up blood test was normal so it was likely the raised thyroid levels were from where my blood had mixed with his.

He soon caught up on his weight and is now a tall, healthy happy two-year-old.

When he was seven months old, my Graves’ came back. Again, I recognised the symptoms especially when I couldn’t work out at the gym. I had a blood test and was put on 30 mg of Carbimazole a day. We had started discussing definitive treatment when I unexpectedly fell pregnant again two months later. I was quite worried about the baby due to the fact that my last blood test showed my thyroid function was high which increases the risk of miscarriage and also because I was taking Carbimazole which can cause abnormalities. I called my doctor straight away and she moved me back onto PTU and a blood test showed my levels were in the normal range although my antibodies were very high.

Again, the pregnancy was high risk and I was monitored as I was through my first. My second baby boy was born two days before his due date at 7lbs 5 oz and his blood tests were normal. He is very healthy and has not been affected by the medication. I then had routine blood test at six weeks postpartum which showed my thyroid was overactive again. I didn’t even notice this time because so many of the symptoms can be put down to being sleep deprived! So my medication has been increased again and we are again discussing definitive treatment.

Having two young children rules out radioactive iodine treatment as I wouldn’t be allowed in contact with them for a couple of weeks so that is not an option. Therefore it looks like it will be surgery. It is a big decision but I feel positive about it after the number of relapses I have had and the extreme debilitating symptoms these cause. But, for now, I feel very blessed to have my two happy healthy boys and I hope this can offer to hope to anyone that has been diagnosed with Graves’ disease and is worried about what this may mean for their fertility and pregnancy.

BTF comment:

Undiagnosed or uncontrolled thyroid dysfunction can make it difficult to conceive and can also cause problems during the pregnancy itself. It is important to let your doctor know if you are planning a pregnancy or are pregnant.

If you have active hyperthyroidism, you will need to take antithyroid drugs during your pregnancy. This will usually be PTU when trying to conceive and in the first three months of pregnancy. Once the thyroid levels are under control, there is no reason why you should not have a successful pregnancy.

It is also important for your thyroid levels to be monitored after your baby is born, as women who have previously had Graves’ disease (but not undergone thyroid surgery or radioiodine treatment) may relapse at any stage, but the risk is higher after giving birth and remains high for one year.

More information

BTF 'Your Guide to Pregnancy and Fertility in Thyroid Disorders' 

BTF thyroid disorders and pregnancy resources

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