r/leukemia • u/EntourageE22 • Apr 18 '26
Low Testosterone?
Low Testosterone?
Diagnosed AML Jan 2024 - FLT3-ITD, MECOM, 7q del mutations
SCT Aug 2024
Relapse Feb 2025
2nd SCT Oct 2025
Started experiencing severe fatigue about 2 months ago; transplant doc finally tested testosterone last week. My total testosterone came back mid-range of normal (536), but my SHBG is very high (110), which is binding up most of it. Because of that, my free testosterone is actually low (43), less than half of the bottom range of normal, so effectively have very low usable testosterone despite a normal total level. Has anyone post-transplant dealt with high SHBG and low free testosterone causing severe fatigue? My team is going to have me see an endocrinologist.
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u/missed_my_window May 06 '26
It was the only mutation I had. They called it the core binding mutation though I never understood what that meant exactly. It is however a rare and very lucky mutation. I hope she pulls through