Table 1.
Reported cases in the literature of idiopathic intracranial hypertension (IIH) in transgender patients.
| Case | Age | Gender | BMI | Hormone tx | Symptoms start | Treatment of IIH | Evolution |
|---|---|---|---|---|---|---|---|
| 1 (12) | 28 | MTF | 30.13 | Estrogens, spironolactone | 8 M post-tx start | Hold estrogen; change to sublingual estrogen + DMX 1 g/day | Resolved at 5 M |
| 2 (12) | 31 | FTM | 56.5 | Testosterone | 1Y post-tx cessation | DMX 1 g/day + resume testosterone | Resolved at 6 M |
| 3 (5) | 22 | FTM | 27.91 | Testosterone, progestin | Rapid onset post-tx start | Shunt | Resolved at 18 M |
| 4 (6) | 36 | FTM | 25.0 | Testosterone | 50 M post-tx start | DMX 1 g/day → 1.5 g/day, furosemide 20 mg/day, topiramate 25 mg/day, endovascular stent | Resolved at 1 M; atrophy without edema at 6 M |
| 5 (7) | 23 | FTM | 27.05 | Testosterone | 2W post-tx start | DMX 0.5 g/day + 50% decrease testosterone | Resolved at 5 M |
| 6 (8) | 22 | FTM | <30 | Testosterone | 3W post-tx start | DMX 1 g/day with taper + change to long-action testosterone | Resolved |
| 7 (9) | 33 | FTM | NA | Testosterone | <10 M post-tx cessation | DMX 1.5 g/day → furosemide 80 mg/day, topiramate 150 mg/day; fenestration OD | Improved at 1 M |
| 8 (10) | 39 | MTF | >40 | Estrogens, spironolactone | 3-5Y post-tx cessation | DMX 2 g/day + fenestration OD | Improved subjectively at 1D, lost to follow-up |
| 9 (11) | 34 | MTF | 41.9 | Estrogens, progestin | 2.5Y post-tx start; 1 M post-op | DMX 1 g/day → 2 g/day → 2.5 g/day, topiramate 50 mg/day, therapeutic LP, fenestration OS | No symptoms at 2W; resolved + 50 lbs loss at 2 M |
| 10 (4) | 24 | FTM | NA | NA | NA | DMX 1 g/day + 50% decrease testosterone | Resolved + increase testosterone at 2 M |
| 11 (13) | 23 | FTM | 29.1 | Testosterone | 11 M post-tx start | DMX 500 mg/day | Improvement at 5 M |
| 12 (13) | 29 | FTM | 35.0 | Testosterone | 19 M post-tx start | DMX 325 mg/day + topiramate | Persistence at 2 M |
| 13 (13) | 19 | FTM | 31.9 | Testosterone | 2Y tx, many months of symptoms | Topiramate | Improvement at 6 M |
| 14 (13) | 22 | FTM | 36.1 | Testosterone | 13 M post-tx start | DMX | Worsened at 1 M, lost to follow-up |
| 15 (13) | 23 | FTM | 44.0 | Testosterone | 15 M post-tx start | DMX 1 g/day + nortriptyline 75 mg/day | Improved over 2Y |
| 16 (13) | 25 | MTF | NA | Estrogens | No symptoms, referral after 4Y tx | None | Stable at 3 M and 1Y |
FTM = female-to-male transition, MTF = male-to-female transition, BMI = body mass index, tx = therapy, g = grams, mg = milligrams, lbs = pounds, OU = oculus uterque, OD = oculus dextrus, OS = oculus sinister, DMX = acetazolamide, D = day, M = months, Y = years, NA = not available/unknown.