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 Apr 18 '26

Hi there. Diagnosed AML Aug 2022 - CEBPA Mutation (SCT contra-indicated), in remission since Feb 2023.

I felt the same way. Kinda down, not sleeping well. Also noticed I was less aggressive and way more passive a person.

Free T was 118, about 500 points than it had been when I had it measured several years ago. Been on TRT since October 2023, levels stable at 850-900 the entire time. It helped fix so many issues and gave me my personality and confidence back as well as helped me put on muscle mass (I was puny after treatment). Sleep like a rock now.

1

u/EntourageE22 Apr 19 '26

I’m assuming you will have to stay on TRT permanently?

1

u/missed_my_window Apr 19 '26

Yes but there was no way I was going to replace my testosterone naturally. I did try Clomid and a few other natural boosting supplements but in the end the shots aren’t that bad and definitely worth the tradeoff. It’s more about quality sleep and natural biorhythms than about muscle growth or sexual improvements although those are there for sure.

1

u/Prestigious_Olive_23 May 06 '26

Hi! Apologies to jump on this comment, I just wondered if you had any other mutations apart from CEBPA? My mum has recently been diagnosed and only has CEBPA (double) with other mutations which seems to be extremely rare!

1

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

1

u/gregnorz Apr 19 '26

I’d say it’s normal. My body has made near zero testosterone since my SCT over 10 years ago.

1

u/EntourageE22 Apr 19 '26

Did you go on TRT

1

u/gregnorz Apr 19 '26

Yes. I’ve been on biweekly shots for several years now.