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PubMed This is a summary of 29 peer-reviewed journal articles Updated
Endocrinology · Classic Congenital Adrenal Hyperplasia (Simple Virilizing Form)

Long-Term Health: Growth, Fertility, and the Future

At a Glance

Long-term health in simple virilizing CAH requires careful hormone balancing to optimize adult height and preserve fertility. Regular monitoring, including bone age X-rays and scrotal ultrasounds for males, is essential as patients transition from pediatric to adult endocrinology care.

While daily medication is the foundation of managing Simple Virilizing (SV) CAH, long-term health involves looking beyond the next dose. Because CAH affects hormones that control growth, puberty, and reproduction, specialized care continues throughout every stage of life [1][2].

Growth and Bone Development

In SV-CAH, the body must manage a delicate trade-off between too many androgens and too much medication [3].

  • Bone Age: If androgen levels are too high, they can cause “advanced bone age.” This means the bones mature and fuse too early, which may lead to a shorter final adult height [4][5].
  • Final Height: Conversely, if the glucocorticoid dose is too high, it can directly stunt growth [6][7]. Regular height checks and periodic hand X-rays (bone age scans) help your care team find the “sweet spot” for growth [8][9].

Male Health: Testicular Adrenal Rest Tumors (TARTs)

Males with classic CAH are at risk for Testicular Adrenal Rest Tumors (TARTs). These are benign (non-cancerous) growths that develop from adrenal-like cells that were “left behind” in the testicles during fetal development [4][10].

  • The Risk: TARTs are often triggered by poor hormonal control (high ACTH levels) [11][12]. If they grow large, they can press on healthy tissue and lead to infertility or pain [13][14].
  • Monitoring: TARTs cannot always be felt by hand. Specialists recommend regular scrotal ultrasounds, often starting around the onset of puberty (ages 10–12) or earlier if hormone control is difficult [15][16].

Reproductive Health and Fertility

Most individuals with SV-CAH can have children, though it may require extra coordination with an endocrinologist [17][18].

  • For Females: High androgen levels can interfere with regular ovulation and menstrual cycles [19][20]. With good hormonal control, many women with CAH successfully conceive and carry healthy pregnancies [17][21].
  • For Males: In addition to TARTs, males may have lower sperm counts if their disease is not well-controlled. Optimizing medication can often reverse these effects and improve fertility [22][23].

The Transition to Adult Care

Moving from a pediatric specialist to an adult endocrinologist is a major milestone. This transition usually begins in the mid-to-late teens and is a critical time for maintaining health [24][2].

  • New Challenges: Adult care focuses more on long-term risks like metabolic health (weight, blood pressure, and cholesterol) and bone density [25][26][27].
  • Patient Independence: A successful transition means the patient understands their own “sick day rules,” knows how to use an emergency injection, and can manage their own pharmacy refills [28][29]. Your pediatric team should help provide a “transition roadmap” to make this move as smooth as possible [29].

Common questions in this guide

How does simple virilizing CAH affect a child's adult height?
CAH can affect final height in two ways. High androgen levels can cause bones to mature and fuse too early, while high doses of glucocorticoid medication can stunt growth. Regular bone age X-rays help your doctor find the right medication balance.
What are Testicular Adrenal Rest Tumors (TARTs)?
TARTs are benign growths in the testicles that can develop in males with CAH, often triggered by poor hormonal control. Because they can cause infertility and aren't always felt by hand, regular scrotal ultrasounds are recommended.
Can women with simple virilizing CAH get pregnant?
Yes, most women with simple virilizing CAH can have children. While high androgen levels can sometimes cause irregular menstrual cycles, proper hormonal control usually allows for successful conception and a healthy pregnancy.
When should a patient with CAH transition to an adult endocrinologist?
The transition to adult care typically begins in the mid-to-late teens. This shift focuses on long-term metabolic health, bone density, and ensuring the patient can independently manage their daily medications and emergency care.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Is my child's bone age currently advanced, and what does that mean for their predicted final adult height?
  2. 2.(For males) When should we schedule the first baseline scrotal ultrasound to check for TARTs, and how often will we repeat it?
  3. 3.How are we balancing the need for androgen suppression with the risk of glucocorticoid side effects like weight gain or bone loss?
  4. 4.When can we begin the formal transition process to adult care, and do you have a specific adult endocrinologist you recommend who is familiar with CAH?
  5. 5.What markers should we be tracking long-term to monitor for cardiovascular or metabolic risks?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (29)
  1. 1

    Glucocorticoid replacement regimens for treating congenital adrenal hyperplasia.

    Ng SM, Stepien KM, Krishan A

    The Cochrane database of systematic reviews 2020; (3()):CD012517 doi:10.1002/14651858.CD012517.pub2.

    PMID: 32190901
  2. 2

    Management issues of congenital adrenal hyperplasia during the transition from pediatric to adult care.

    Choi JH, Yoo HW

    Korean journal of pediatrics 2017; (60(2)):31-37 doi:10.3345/kjp.2017.60.2.31.

    PMID: 28289431
  3. 3

    Congenital adrenal hyperplasia.

    El-Maouche D, Arlt W, Merke DP

    Lancet (London, England) 2017; (390(10108)):2194-2210 doi:10.1016/S0140-6736(17)31431-9.

    PMID: 28576284
  4. 4

    Testicular Adrenal Rest Tumors in Boys and Young Adults with Congenital Adrenal Hyperplasia.

    Kim MS, Goodarzian F, Keenan MF, et al.

    The Journal of urology 2017; (197(3 Pt 2)):931-936 doi:10.1016/j.juro.2016.09.072.

    PMID: 27840017
  5. 5

    Quantitative targeted GC-MS-based urinary steroid metabolome analysis for treatment monitoring of adolescents and young adults with autoimmune primary adrenal insufficiency.

    Kamrath C, Hartmann MF, Wudy SA

    Steroids 2019; (150()):108426 doi:10.1016/j.steroids.2019.108426.

    PMID: 31228484
  6. 6

    Hydrocortisone dosing in children with classic congenital adrenal hyperplasia: results of the German/Austrian registry.

    Hoyer-Kuhn H, Huebner A, Richter-Unruh A, et al.

    Endocrine connections 2021; (10(5)):561-569.

    PMID: 33909597
  7. 7

    Height Velocity Defined Metabolic Control in Children With Congenital Adrenal Hyperplasia Using Urinary Steroid GC-MS Analysis.

    Kamrath C, Wettstaedt L, Hartmann MF, Wudy SA

    The Journal of clinical endocrinology and metabolism 2019; (104(9)):4214-4224 doi:10.1210/jc.2019-00438.

    PMID: 31112272
  8. 8

    The utility of annual growth velocity standard deviation scores and measurements of biochemical parameters in long-term treatment monitoring of children with 21-hydroxylase deficiency.

    Ozdemir Dilek S, Turan I, Gurbuz F, et al.

    Hormones (Athens, Greece) 2022; (21(3)):391-397 doi:10.1007/s42000-022-00354-1.

    PMID: 35243601
  9. 9

    Clinical Manifestations and Challenges in Adolescent and Adult Females With Classic Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency.

    Engberg H, Nordenström A, Hirschberg AL

    The Journal of clinical endocrinology and metabolism 2025; (110(Supplement_1)):S37-S45 doi:10.1210/clinem/dgae696.

    PMID: 39836618
  10. 10

    Screening for testicular adrenal rest tumors among children with congenital adrenal hyperplasia at King Fahad Medical City, Saudi Arabia.

    Huneif MA, Al Mutairi M, AlHazmy ZH, et al.

    Journal of pediatric endocrinology & metabolism : JPEM 2022; (35(1)):49-54 doi:10.1515/jpem-2021-0291.

    PMID: 34757702
  11. 11

    Semen quality and testicular adrenal rest tumour development in 46,XY congenital adrenal hyperplasia: the importance of optimal hormonal replacement.

    Rohayem J, Bäumer LM, Zitzmann M, et al.

    European journal of endocrinology 2021; (184(4)):487-501.

    PMID: 33524003
  12. 12

    Testicular Adrenal Rest Tumors in a Patient With Congenital Adrenal Hyperplasia.

    Yu SY, Freed KM

    Cureus 2022; (14(8)):e28350 doi:10.7759/cureus.28350.

    PMID: 36168332
  13. 13

    Experience in optimizing fertility outcomes in men with congenital adrenal hyperplasia due to 21 hydroxylase deficiency.

    King TF, Lee MC, Williamson EE, Conway GS

    Clinical endocrinology 2016; (84(6)):830-6 doi:10.1111/cen.13001.

    PMID: 26666213
  14. 14

    Testicular adrenal rest tumor in a pediatric patient with congenital adrenal hyperplasia: A case report.

    Ibdah MG, Tos SM, Giacaman N, et al.

    Radiology case reports 2023; (18(11)):4149-4152 doi:10.1016/j.radcr.2023.08.081.

    PMID: 37745756
  15. 15

    How to manage puberty and prevent fertility disorders in men with CAH?

    Claahsen-van der Grinten HL

    Annales d'endocrinologie 2022; (83(3)):186-187 doi:10.1016/j.ando.2022.04.005.

    PMID: 35436502
  16. 16

    Testicular adrenal rest tumors in children with congenital adrenal hyperplasia.

    Al-Ghamdi WM, Shazly MA, Al-Agha AE

    Saudi medical journal 2021; (42(9)):986-993 doi:10.15537/smj.2021.42.9.20210257.

    PMID: 34470837
  17. 17

    The management of congenital adrenal hyperplasia during preconception, pregnancy, and postpartum.

    Maher JY, Gomez-Lobo V, Merke DP

    Reviews in endocrine & metabolic disorders 2023; (24(1)):71-83 doi:10.1007/s11154-022-09770-5.

    PMID: 36399318
  18. 18

    Pregnancy management of IVF-ET pregnancies in a patient with classical 21-hydroxylase deficiency: A case report and review of the literature.

    Yu J, Lu S, Fang L, et al.

    European journal of obstetrics, gynecology, and reproductive biology 2024; (293()):50-56 doi:10.1016/j.ejogrb.2023.12.008.

    PMID: 38104394
  19. 19

    Management challenges and therapeutic advances in congenital adrenal hyperplasia.

    Mallappa A, Merke DP

    Nature reviews. Endocrinology 2022; (18(6)):337-352 doi:10.1038/s41574-022-00655-w.

    PMID: 35411073
  20. 20

    Cognitive impairment in adolescents and adults with congenital adrenal hyperplasia.

    Karlsson L, Gezelius A, Nordenström A, et al.

    Clinical endocrinology 2017; (87(6)):651-659 doi:10.1111/cen.13441.

    PMID: 28771762
  21. 21

    Pregnancy, delivery and neonatal outcomes among women with congenital adrenal hyperplasia: a study of a large US database.

    Badeghiesh A, Ismail S, Baghlaf H, et al.

    Reproductive biomedicine online 2020; (41(6)):1093-1099 doi:10.1016/j.rbmo.2020.08.036.

    PMID: 33008769
  22. 22

    Restoration of reproductive capacity in a male patient with congenital adrenal hyperplasia and bilateral testicular adrenal rest tumors (TARTs) after six months of glucocorticoid intensification: A case report.

    Ahmad J, Ahmad A, Hadid L

    Medicine 2023; (102(49)):e36061 doi:10.1097/MD.0000000000036061.

    PMID: 38065885
  23. 23

    Testicular Adrenal Rest Tumors: Current Insights on Prevalence, Characteristics, Origin, and Treatment.

    Engels M, Span PN, van Herwaarden AE, et al.

    Endocrine reviews 2019; (40(4)):973-987 doi:10.1210/er.2018-00258.

    PMID: 30882882
  24. 24

    Adult endocrinologists' perspectives on transitioning adolescent patients with congenital adrenal hyperplasia.

    Hall ME, Kremen J, Boskey ER, et al.

    Journal of pediatric endocrinology & metabolism : JPEM 2024; (37(8)):722-729 doi:10.1515/jpem-2024-0158.

    PMID: 39008686
  25. 25

    Epidemiology and Long-Term Adverse Outcomes in Korean Patients with Congenital Adrenal Hyperplasia: A Nationwide Study.

    Kim JH, Choi S, Lee YA, et al.

    Endocrinology and metabolism (Seoul, Korea) 2022; (37(1)):138-147 doi:10.3803/EnM.2021.1328.

    PMID: 35255606
  26. 26

    Review of Health Problems in Adult Patients with Classic Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency.

    Reisch N

    Experimental and clinical endocrinology & diabetes : official journal, German Society of Endocrinology [and] German Diabetes Association 2019; (127(2-03)):171-177 doi:10.1055/a-0820-2085.

    PMID: 30812049
  27. 27

    Bone mineral density and fractures in congenital adrenal hyperplasia: Findings from the dsd-LIFE study.

    Riehl G, Reisch N, Roehle R, et al.

    Clinical endocrinology 2020; (92(4)):284-294 doi:10.1111/cen.14149.

    PMID: 31886890
  28. 28

    Toward Improving the Transition of Patients With Congenital Adrenal Hyperplasia From Pediatrics to Adult Healthcare in Japan.

    Takasawa K, Kashimada K

    Frontiers in pediatrics 2022; (10()):936944 doi:10.3389/fped.2022.936944.

    PMID: 35799687
  29. 29

    Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative.

    Dennis J, Pitts L, Matalka L, Mays LC

    Health care transitions 2024; (2()):100057 doi:10.1016/j.hctj.2024.100057.

    PMID: 39712594

This page provides educational information on long-term care for simple virilizing CAH. Always consult your endocrinologist regarding specific growth, fertility, and medication concerns.

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