A guide for those seeking diagnosis

Maternal pituitary conditions tend to fall into these categories:

  • Acute presentation, where there is a sudden or early onset of symptoms, perhaps combined with being very unwell. This might be for example if you had an adrenal crisis, or the intense headaches and visual disturbance that can come with Lymphocytic Hypophysitis.

  • Chronic presentation, where it takes a while to find a diagnosis and explanation for symptoms. This can be a long and frustrating journey for many women.

Tests you will need

Chronic presentation

  • This section provides information for those seeking a diagnosis, which usually means a chronic presentation.

  • Symptoms can be insidious and difficult to pinpoint.

  • You may have been searching for a diagnosis for years, questioning your symptoms, or feeling you’ve been misunderstood by others.

  • Some mothers say they assumed their exhaustion and fatigue were just down to being a new mum.

  • For some mothers, their pituitary condition is discovered following years of feeling unwell, then an additional stress such as surgery or injury causes an adrenal crisis.

No clear link between blood loss and pituitary damage

  • There is no clear link between the amount of blood lost and the degree of pituitary damage. There has been a case of Sheehan’s Syndrome described in 2020 where there was no blood loss or low blood pressure at all.

  • There can also be a gradual deterioration in hormone deficiencies over time, which may also be why it takes longer to reach diagnosis.

  • In Sheehan’s Syndrome, the average time to diagnosis for women in countries with more access to healthcare is 9 years. In countries with less access to healthcare resources the average time to diagnosis is 20 years.

  • For Lymphocytic Hypophysitis, we need more data on average time to diagnosis.

Often overlooked

  • We believe this is too long for women to be suffering in silence. Sadly, these medical conditions are often overlooked, and misunderstood. Their early signs and symptoms can be missed.

  • There is also an assumption that Sheehan’s Syndrome no longer occurs in countries with more access to healthcare due to improvements in obstetric care.

  • We need to understand more about these rare pituitary conditions. Scientists have called for more research into why they happen and how.

  • We don’t yet know why some women are affected and not others.

Maternal Pituitary Support is passionate about raising awareness and campaigning for early detection for all patients. We understand from experience the frustration and challenges that come from living with untreated hormone deficiencies.

You can find support around seeking diagnosis in our community. There’s more information about symptoms and hormone deficiencies here.

Next steps

  • Many of the symptoms of hormone deficiencies overlap with each other (and overlap with completely different medical conditions). Think about keeping a diary of your symptoms to help you communicate with your healthcare professionals.

  • It’s also useful to bring together information such as any symptoms or events in pregnancy, estimated blood loss, blood transfusions, blood pressure or any emergency care you received. You are entitled to request copies of your medical records; usually the process to follow is on the website for your hospital.

  • You will need to be seen by an Endocrinologist, who will perform tests to check how your pituitary is functioning. It is likely you will also be referred for a Magnetic Resonance Imaging scan (MRI) to check if the structure of your pituitary gland has been affected.

You might also like to read our information on what to expect in an endocrinology appointment and going for an MRI scan.