What you need to know:
- Empty Sella Syndrome involves a defect in the bony structure in the base of the skull that houses the pituitary gland
- This defect allows for accumulation of cerebrospinal fluid
- It causes the gland to be compressed, with various levels of dysfunction
Connie* was always tired. She complained about her incessant fatigue for most of her adult life but all she got was ‘gentle’ advice to lose weight and all would be well. She was at her wits’ end.
Connie was big throughout her childhood. She was the lastborn in a family of three, coming 12 years after her twin brothers.
Mostly, she grew up alone, as her brothers were off to high school by the time she was starting kindergarten. In class, she was always the biggest but the youngest.
She was a gentle soul who avoided drawing attention to herself but this did not shield her from the cruel comments about her size.
As she grew up, she found solace in her two passions — cooking and technology. These gave her the solitude she craved, to remain invisible, her default mechanism for handling the body-shaming.
She would cook for family and friends, tantalising them with her delicious recipes, yet nobody noticed she hardly ever ate what she cooked. She ate very little but remained on the heavier side of life.
When she was not cooking, she was tucked away in her room on her laptop, exploring the magical world of technology. Her family knew a technology guru was in the making and she did not disappoint.
By the time she was graduating from college, she had several job offers lined up and she transitioned smoothly into the technology industry.
Connie was a night owl by nature. She worked best late into the night, sleeping in till noon. Her job supported flexible work hours as long as her targets were met.
The first doctor attributed her fatigue to her unusual work hours and recommended more regular sleeping hours. It did not work.
The next one referred her to a nutritionist to help her with weight management. The nutritionist did not believe her when she said she did not eat much. Instead, she was put on a diet plan that failed. She stopped honouring her appointments after the fourth visit.
Two years later, she enrolled into a postgraduate programme abroad and for the first time, Connie stopped paying much attention to her weight.
No one noticed it because she did not stand out. She was living in a country with a lot more obese people hence everyone was tolerant. She loved school and living alone made her eat even less because no one was watching.
However, during one of her mandatory routine medical checks, the doctor took note that her thyroid function was abnormally low.
She was put on treatment, thyroxine, and she responded fairly well, with a lot more energy than she had experienced in a long time.
A few weeks later, she noticed a watery discharge from her breasts on and off but the doctor reassured her that this was likely a side effect of the low thyroid function. She developed prolonged, irregular menses, still attributed to her weight.
She wondered whether she was imagining her symptoms. At 24, Connie was at her peak in life but felt isolated and unheard, the beginning of a long duel with depression.
It was a relief to complete school and get back home but she realised that her problems had crossed the Atlantic with her. The periods would not let up and all she got was temporary reprieve from short courses of hormones prescribed by various doctors.
By the time she walked into my office, she was almost unhinged.
We spent the afternoon going over Connie’s history and previous tests. Nothing was considered insignificant. Though her symptoms did not neatly add up to a single diagnosis, she was relieved.
For the first time she felt heard. It was going to take a lot more tests and a tonne of patience to get to the bottom of this but she was patient.
Two weeks later, we sifted through the various reports and like a jigsaw puzzle, things began to fall into place. Connie’s brain scan showed she had Empty Sella Syndrome, finally explaining her symptoms.
The condition involves a defect in the bony structure in the base of the skull that houses the pea-sized pituitary gland. This defect allows for accumulation of cerebrospinal fluid, causing the gland to be compressed, with various levels of dysfunction.
This tiny gland produces multiple regulatory hormones that control the function of various hormone-producing organs in the body. This includes the thyroid, adrenals, and the ovaries or testes.
This is the reason Connie’s body was askew as her hormones were affected. It explained her weight, the low thyroid hormone levels, the breast discharge from high prolactin levels and the irregular periods.
Further, she was diagnosed with diabetes, which was no surprise as she had a positive family history and a high body mass index.
For Connie, despite the diagnosis being a handful, she was grateful to have one. She will spend her life shuttling between the various doctors in her multidisciplinary care team but she will never have to doubt herself again.
She even honoured an appointment with the psychiatrist to get help for her depression.
It is not enough to listen, patients need to feel heard.