Hypothyroidism in People with Learning Disabilities: A Forgotten Group?

Written by Verity Chester
Thyroid Patient & NHS Researcher
 
I was diagnosed with hypothyroidism in 2019 after two years of ill health, including weight gain, muscle pain, and exhaustion. I struggled to keep up with the demands of my job as a researcher, and my activity levels and quality of life declined. I didn’t know anything about hypothyroidism at that time, and I struggled to understand my diagnosis.

In my role as a researcher, I work with people with learning disabilities. Having a learning disability is defined by “significant limitations in both intellectual functioning and adaptive behaviour”. People with learning disabilities have a below average IQ, and difficulties reading, communicating verbally, and advocating for themselves. They often are dependent on family members or paid carers to support their everyday tasks, including navigating healthcare, and experience a poorer service within medical services. 

---

Following my own experiences, I began to wonder about hypothyroidism diagnosis and management with the patients I work with. I thought they might struggle to obtain the diagnosis, and to manage their condition. For example, I found understanding my blood test results difficult, and learned the most about hypothyroidism from my own online research, including information and resources from the Thyroid Trust. Many people with learning disabilities do not access the internet and are less able to access these kinds of resources. 

I tried to undertake some background research on hypothyroidism and learning disabilities. I have completed projects on lots of physical health conditions and how they affect the patients I work with. When I am doing background research for a project, it is very rare that I find absolutely no articles. However, that is what happened when I typed “learning disability” and “hypothyroidism” into my search engine.

​So this year, with my colleagues, we were able to investigate hypothyroidism among 463 patients with learning disabilities using NHS healthcare records. I expected hypothyroidism to be under recognised in this group, due to the lack of research, and I thought people with learning disabilities might struggle to communicate their symptoms for diagnosis. However, among the 463 patients, 43 (9%) had hypothyroidism, which is considerably higher than the general population (2%). 

While this was a preliminary study, with several limitations, the results suggest hypothyroidism in intellectual disability should be the focus of future research. We need to understand whether: 

• hypothyroidism is more prevalent in this population, in larger, more representative samples,
• those with learning disabilities, and their carers, understand the diagnosis, and how best to manage it,
• hypothyroidism is being effectively managed in this patient group, e.g. how many patients are accessing regular reviews of their bloods, are on optimal levels of medication, and are satisfied with their treatment.

Finally, there is a need to raise awareness of hypothyroidism and learning disabilities among healthcare professionals, and stakeholders such as thyroid charities, to ensure the needs of this group are being considered and advocated for at the national level. 

Bio: Verity Chester is a researcher in the NHS focused on people with learning disabilities and autism. She has authored over 75 peer reviewed publications alongside undertaking her PhD at the University of East Anglia. Verity is also an advocate for patients with hypothyroidism following her diagnosis of the condition in 2019