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PubMed This is a summary of 23 peer-reviewed journal articles Updated
Endocrinology

Growing Up with CAH: Monitoring and Health

At a Glance

Managing Congenital Adrenal Hyperplasia (CAH) requires a lifelong balancing act of hormone medication. Regular blood tests, bone scans, and ultrasound screenings help prevent the severe complications of overtreatment and undertreatment while ensuring healthy growth and long-term metabolic health.

As a child with Congenital Adrenal Hyperplasia (CAH) grows, the focus of medical care shifts from initial stabilization to long-term health and the prevention of complications [1]. This requires a delicate, lifelong balancing act: ensuring there is enough medication to prevent an adrenal crisis and suppress excess androgens, while avoiding the side effects of taking too much [2].

The Balancing Act: Over- vs. Under-Treatment

Your medical team uses blood tests (like 17-OHP and androstenedione) and growth monitoring to find the “sweet spot” for medication dosing [3][4].

  • Risks of Overtreatment: Taking more glucocorticoids than the body needs can lead to “Cushing-like” side effects over time. These include rapid weight gain (obesity), insulin resistance (which can lead to type 2 diabetes), high blood pressure, and osteoporosis (weakening of the bones) [1][5][6].
    (Actionable step: You can help protect your bones and metabolic health by engaging in regular weight-bearing exercises and asking your doctor to monitor your Vitamin D and Calcium levels [5].)
  • Risks of Undertreatment: If the dose is too low, the body continues to produce excess androgens [2]. In children, this can cause bone age advancement—where the bones mature too quickly, leading to a “growth spurt” that ends early and results in a shorter final adult height [7][8]. In adults, it can contribute to acne, irregular periods, and infertility [9][10].

For Males: Understanding TARTs

A common but manageable complication for males with Classic CAH is the development of Testicular Adrenal Rest Tumors (TARTs) [11].

  • What they are: TARTs are benign (non-cancerous) growths in the testicles. They are made of adrenal-like tissue that “traveled” to the testicles during development before birth [12][13].
  • The Trigger: When ACTH levels (the brain’s signal to the adrenal glands) are chronically high—usually due to undertreatment—these “rest” cells can grow into small tumors [12][13].
  • Fertility: If TARTs become large, they can press on the tubes that carry sperm, leading to low sperm counts and infertility [13][10].
  • Screening: Because they are often too small to feel by hand, the Endocrine Society recommends annual testicular ultrasounds for males with CAH, often starting in early childhood or at the onset of puberty [11][14]. In many cases, optimizing medication can cause these tumors to shrink [15][12].

Monitoring Through the Years

A “typical” schedule for a person with CAH involves regular check-ins to ensure the treatment plan is still working as the body changes [4].

  1. Lab Work: Blood draws for 17-OHP and androstenedione are the most common [16]. Consistency is key—try to have labs drawn at the same time of day (usually first thing in the morning). Do not take your morning medication until after your blood is drawn, unless your doctor specifically tells you otherwise [17]. For women with NC-CAH, ask if your blood should be drawn during a specific time in your menstrual cycle (often the early follicular phase) [18].
  2. Bone Age X-rays: In growing children, an X-ray of the hand and wrist helps determine if the bones are maturing at the correct speed [19][20].
  3. Bone Density (DXA) Scans: For adults, a DXA scan may be used to ensure that long-term steroid use has not weakened the bones [2][5].

The Transition to Adult Care

One of the most critical phases in CAH management is the move from a pediatric endocrinologist to an adult specialist, usually between ages 18 and 21 [21]. Pediatric care focuses heavily on growth and puberty, while adult care shifts toward metabolic health, cardiovascular risk, and fertility planning [1][22].

  • Mental Health and Psychosocial Support: Growing up with a chronic condition can be exhausting. Navigating body image (especially regarding virilization, acne, or weight), chronic illness fatigue, and the stress of daily medication requires strong emotional support [21]. Connecting with a therapist or a CAH patient advocacy group can be just as important as managing your hormone levels [23].

A successful transition requires a clear “hand-off” plan to ensure you or your child continues to feel empowered and safe in managing this lifelong journey [21][23].

Common questions in this guide

How often should bone age be checked for a child with CAH?
Bone age X-rays of the hand and wrist are regularly used in growing children to ensure their bones are maturing at the correct speed. Your pediatric endocrinologist will determine the best screening schedule to prevent premature growth spurts that can lead to a shorter final adult height.
What are the risks of undertreating CAH?
Undertreating CAH causes the body to continue producing excess androgens. In children, this can cause bones to mature too quickly, resulting in a shorter adult height. In adults, undertreatment can lead to acne, irregular periods, infertility, and testicular tumors in males.
What is a Testicular Adrenal Rest Tumor (TART)?
TARTs are benign, non-cancerous growths in the testicles made of adrenal-like tissue. They can develop in males with classic CAH when hormone treatments are too low, which is why annual ultrasound screenings are highly recommended to catch and monitor them early.
How should I prepare for my routine CAH blood tests?
You should try to have your blood drawn at the same time of day, usually first thing in the morning. Unless your doctor specifically tells you otherwise, do not take your morning CAH medication until after your blood is drawn.
Why do I need a DXA scan for CAH?
Adults with CAH often need bone density (DXA) scans to check for osteoporosis or weakening of the bones. This is because long-term use of the glucocorticoid medications required to treat CAH can negatively impact bone density over time.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How often should we be checking my/my child's bone age to monitor growth progress?
  2. 2.For males: At what age should we start annual testicular ultrasounds to screen for TARTs?
  3. 3.Are my current 17-OHP and androstenedione levels indicating that my medication dose is in the 'sweet spot' (not too high, not too low)?
  4. 4.Can we schedule a 'transition visit' to discuss moving from pediatric to adult care?
  5. 5.When should I have my first DXA scan to check my bone density?

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 (23)
  1. 1

    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
  2. 2

    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
  3. 3

    An integrated PK-PD model for cortisol and the 17-hydroxyprogesterone and androstenedione biomarkers in children with congenital adrenal hyperplasia.

    Al-Kofahi M, Ahmed MA, Jaber MM, et al.

    British journal of clinical pharmacology 2021; (87(3)):1098-1110 doi:10.1111/bcp.14470.

    PMID: 32652643
  4. 4

    Treatment and Follow-up of Congenital Adrenal Hyperplasia Due to 21-hydroxylase Deficiency in Childhood and Adolescence

    Peltek Kendirci HN, Ünal E, Dündar İ, et al.

    Journal of clinical research in pediatric endocrinology 2025; (17(Suppl 1)):12-22 doi:10.4274/jcrpe.galenos.2024.2024-6-26-S.

    PMID: 39713876
  5. 5

    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
  6. 6

    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
  7. 7

    Anastrozole Improves Height Outcomes in Growing Children With Congenital Adrenal Hyperplasia Due to 21-hydroxylase Deficiency.

    Al-Rayess H, Wiersma R, Turner LE, et al.

    The Journal of clinical endocrinology and metabolism 2025; (110(7)):e2198-e2207 doi:10.1210/clinem/dgae771.

    PMID: 39492684
  8. 8

    Growth curves for congenital adrenal hyperplasia from a national retrospective cohort.

    Bretones P, Riche B, Pichot E, et al.

    Journal of pediatric endocrinology & metabolism : JPEM 2016; (29(12)):1379-1388.

    PMID: 27852974
  9. 9

    Congenital adrenal hyperplasia.

    Auer MK, Nordenström A, Lajic S, Reisch N

    Lancet (London, England) 2023; (401(10372)):227-244 doi:10.1016/S0140-6736(22)01330-7.

    PMID: 36502822
  10. 10

    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
  11. 11

    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
  12. 12

    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
  13. 13

    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
  14. 14

    Clinical manifestations of testicular adrenal rest tumor in males with congenital adrenal hyperplasia.

    Yu MK, Jung MK, Kim KE, et al.

    Annals of pediatric endocrinology & metabolism 2015; (20(3)):155-61 doi:10.6065/apem.2015.20.3.155.

    PMID: 26512352
  15. 15

    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
  16. 16

    Adrenal adenoma secreting 17-hydroxyprogesterone mimicking non-classical 21-hydroxylase deficiency.

    Woźniak B, Leszczyńska D, Szatko A, et al.

    Frontiers in endocrinology 2024; (15()):1499836 doi:10.3389/fendo.2024.1499836.

    PMID: 39640880
  17. 17

    11-Oxygenated Androgens Useful in the Setting of Discrepant Conventional Biomarkers in 21-Hydroxylase Deficiency.

    Jha S, Turcu AF, Sinaii N, et al.

    Journal of the Endocrine Society 2021; (5(2)):bvaa192 doi:10.1210/jendso/bvaa192.

    PMID: 33447690
  18. 18

    Diurnal salivary androstenedione and 17-hydroxyprogesterone levels in healthy volunteers for monitoring treatment efficacy of patients with congenital adrenal hyperplasia.

    Adriaansen BPH, Kamphuis JS, Schröder MAM, et al.

    Clinical endocrinology 2022; (97(1)):36-42 doi:10.1111/cen.14690.

    PMID: 35150157
  19. 19

    Audit of management of children and adolescents with congenital adrenal hyperplasia as per recent Endocrine Society guidelines.

    S L, Krishna Prasad H, Ramjee B, et al.

    Pediatric endocrinology, diabetes, and metabolism 2023; (29(1)):10-15 doi:10.5114/pedm.2022.122547.

    PMID: 36734395
  20. 20

    Divergent Gender Identity in a Phenotypic Male with 46XX Karyotype Caused by a Mutation in CYP21A2 Gene with Congenital Adrenal Hyperplasia.

    Kumar KCP, Banik S, Joy P, Sahoo S

    International journal of applied & basic medical research 2024; (14(2)):134-137 doi:10.4103/ijabmr.ijabmr_473_23.

    PMID: 38912360
  21. 21

    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
  22. 22

    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
  23. 23

    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

This page is for informational purposes only and does not replace professional medical advice. Always consult your endocrinologist regarding your specific CAH treatment, medication dosages, and monitoring schedule.

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