Question:
Male, 32 years old, Deletion subtype
My son has been taking testosterone for 18 years, but his LH blood test is 1.1 low. Is it normal for him?
Nurse Lynn’s Response:
People with PWS often have something called hypogonadism. That means the part of the brain (hypothalamus) and the glands that control hormones (pituitary glands) don’t send strong enough signals to make enough sex hormones like testosterone. So even before your son started taking testosterone, his body wasn’t making enough on its own. That’s why doctors give testosterone medicine, to replace what his body doesn’t make.
When someone takes testosterone, the brain sees there’s already plenty in the blood and says, “Okay, we don’t need to make more!” That’s why the LH level goes down, his brain has turned off that signal on purpose.
So in your son’s case, the low LH (1.1) comes from two things:
- 1. His PWS-related hypogonadism, which already makes the signals weak.
- 2. His testosterone treatment, which tells the brain to stop sending those signals completely.
This means his low LH is normal and expected—it doesn’t mean anything is wrong or that the medicine isn’t working.
Doctors will keep checking his testosterone levels, blood counts, and other labs to make sure he’s getting just the right amount for his health and energy. If you ever have questions, it’s always a good idea to reach out to his doctor for guidance.
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.