SAT392 A Case Of Idiopathic Intracranial Hypertension in Gender Dysphoria: Is Testosterone The Culprit?
Authors: Saad-Omer Suhail , John Dieula , Matos Moises , Suarez Carlos Botero , Suryanarayanan Sowmya K 
Published: October 2023

Disclosure: S. Saad-Omer: None. D. John: None. M. Matos: None. C. Botero Suarez: None. S.K. Suryanarayanan: None.

Background: The role of gender affirming Testosterone therapy in female-to-male patients with idiopathic intracranial hypertension (IIH) remains controversial.

Case: A 32-year-old transgender male (Female-to-Male) was admitted after ophthalmologic evaluation for difficulties with night vision revealed papilledema. On admission, the patient reported a 2-month history of worsening bifrontal headaches accompanied by nausea, photophobia, and hyperacusis. Physical examination revealed papilledema and photophobia with BMI (34) and BP (132/86mmHg). CT Head was normal. Lumbar puncture showed an opening pressure of 22 cm water consistent with elevated intracranial pressure. Cerebrospinal fluid (CSF) lab results were grossly unremarkable. He reported being on 4 pumps daily of testosterone gel 1% (50mg) which was started approximately 3 months prior to admission with the last dose administered the day prior to admission. Initial labs showed bioavailable testosterone of 48.7 ng/dl, sex hormone binding globulin 29 nmol/l, free testosterone 24.2ng/dl, albumin 4.4g/dl, total testosterone 178ng/dl, estradiol 67pg/ml, FSH 6.7 mIU/ml, and LH 3.66 IU/ml. MRI Brain and Orbits revealed signs consistent with intracranial hypertension with no masses or bleeding to suggest an alternative cause. He was treated with Solumedrol, Acetazolamide, a brief course of Topiramate. Due to the suspected role of testosterone therapy in development of IIH, it was held during hospitalization. The risks and benefits of testosterone were discussed with the patient and he elected to restart it for gender affirmation at the time of discharge. However, his severe headache recurred after one week and he was asked to hold therapy for 30 days. He had no significant symptomatic improvement while off testosterone and therapy was resumed.

Discussion: Several theories have been proposed to explain the occurrence of IIH in transgender patients with the leading hypothesis suggesting a “physiological window” of abnormal hormone levels, shared by women with elevated androgen levels and men with low androgen levels, where the risk of developing IIH is increased. Testosterone levels in women who have hyperandrogenism is similar to those in men with hypoandrogenism and these levels are likely contributing to the increase in volume of visceral fat and decrease in the size of muscles. It is therefore feasible that IIH is a distinct neuro-metabolic complication of circulating testosterone levels within this range.

Conclusion: Our patient reported no symptomatic improvement despite withholding testosterone therapy for 30 days. Given the scarcity of evidence, it is important to discuss the potential risk of IIH with transgender patients, but not to withhold gender affirming hormone therapy for these patients. More research is required to better explore the mechanism of this association and possible methods to prevent its occurrence.

Presentation: Saturday, June 17, 2023