Gen shares her story for Rare Disease Day 2023

My name is Gen and I’m from New Zealand. So far I have been diagnosed with central hypothyroidism and premature ovarian failure and we believe it may be Lymphocytic Hypophysitis going back nearly 11 years ago when I gave birth to my daughter.

My MRI of the pituitary showed a partial empty sella*. Unfortunately nothing was ever picked up over the years in and out of the doctors’ office, until I initiated my own testing over a year ago due to being so unwell. It took several endocrinologists to finally get this far with my diagnosis and I am still on the path to looking at other deficiencies. Fortunately I may have had some recovery also.

I had to stand my ground and research and educate the endocrinologists as they are not all familiar with rare conditions and didn’t want to believe I have postpartum hypopituitarism.

I finally got diagnosed by an overseas endocrinologist in the USA based on all my bloods and symptoms. I have now found a wonderful knowledgeable Endocrinologist in New Zealand, who understands the condition, so we are working on specialised testing for the condition.

After the dismissal and gaslighting I have experienced, I am glad I didn’t give up. It has made me stronger and more determined to get to the root cause.

Never give up if you don’t feel right. Keep testing and don’t let anyone tell you it’s all your mental health or in your head if you believe something is wrong.

#rarediseaseday2023

* An enlargement or malformation of a structure in the skull known as the sella turcica. Sella turcica literally means "Turkish saddle" in Latin, due to its shape resembling a saddle. The Pituitary Gland sits within this saddle. Women with Postpartum Hypopituitarism can have an empty sella or partially empty sella.