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Understanding Acromegaly: What Is It and Why Was It So Hard to Find?

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Acromegaly is a rare endocrine disorder typically caused by a benign pituitary tumor that produces excess growth hormone. Diagnosis is often delayed for 5 to 10 years because the physical changes develop very slowly and symptoms are frequently mistaken for other common health issues.

Key Takeaways

  • • Acromegaly is a rare endocrine disorder most often caused by a benign tumor on the pituitary gland.
  • • The condition results from the overproduction of Growth Hormone (GH) and Insulin-like Growth Factor 1 (IGF-1).
  • • Diagnosis usually takes 5 to 10 years because physical changes happen very slowly over time.
  • • Symptoms like joint pain, high blood pressure, and snoring are often treated separately before doctors connect them to acromegaly.
  • • Managing hormone levels is the primary way to stop abnormal tissue growth and improve long-term health.

If you have recently been diagnosed with acromegaly, it is normal to feel a mix of relief and anxiety [1]. You may finally have a name for the symptoms you’ve lived with for years, but you are also facing a rare condition that few people understand [2]. Please know that you are not alone; while this journey may have been long and frustrating, you now have the information needed to begin managing your health [3].

A Rare but Real Diagnosis

Acromegaly is a rare endocrine disorder [4]. Research shows that it affects approximately 11 people per million every year [5]. Because it is so uncommon, many healthcare providers may only see one or two cases in their entire career [2]. This rarity often leads to a “low clinical suspicion,” meaning it is rarely the first thing a doctor thinks of when a patient presents with common complaints like joint pain or fatigue [2].

Why It Took So Long to Find

One of the most difficult parts of an acromegaly diagnosis is the realization that the disease has likely been present for a long time [2]. On average, it takes between 5 and 10 years (and sometimes up to 12 years) from the start of symptoms to receive an accurate diagnosis [6][2].

This delay happens for several reasons:

  • The “Sneaky” Onset: The physical changes—such as a widening nose, a more prominent jaw, or larger hands and feet—happen so slowly that you and your family may not notice them day-to-day [1][2].
  • Symptom Masking: You may have seen different specialists for individual problems, like a dentist for new gaps between your teeth, a cardiologist for high blood pressure, or a sleep specialist for snoring [7][8]. Doctors often treat these as separate issues rather than realizing they are all connected to one underlying cause [8][9].
  • Low Awareness: Because the disease is rare, the motto “you must know it to think of it” applies; many clinicians simply do not consider acromegaly as a possibility for non-specific symptoms [2].

How Acromegaly Works in the Body

The biological “engine” of acromegaly is located in the pituitary gland, a pea-sized organ at the base of your brain that controls your hormones [4].

  1. The Adenoma: In almost all cases, acromegaly is caused by a pituitary adenoma, which is a benign (non-cancerous) tumor on the pituitary gland [4][10].
  2. Growth Hormone (GH) Excess: This tumor acts like a “stuck throttle,” constantly pumping out too much Growth Hormone (GH) [11].
  3. The Liver and IGF-1: When the liver receives these high levels of GH, it responds by producing another hormone called Insulin-like Growth Factor 1 (IGF-1) [11][12].
  4. Systemic Growth: Together, the excess GH and IGF-1 tell the soft tissues, bones, and organs in your body to keep growing long after they should have stopped [11][13]. This leads to the characteristic physical changes and internal health challenges associated with the condition [13][14].

Understanding this mechanism is the first step toward regaining control. By managing these hormone levels, doctors can help slow or stop these changes and improve your long-term health [3].

Read next: Symptoms & Comorbidities: Connecting the Dots of Your Health

Frequently Asked Questions

Why does it take so long to get diagnosed with acromegaly?
Acromegaly develops very slowly over 5 to 10 years. Because the physical changes are gradual and symptoms like joint pain or snoring are common, doctors often treat individual issues without realizing they are connected to a single rare disorder.
What causes acromegaly?
In almost all cases, acromegaly is caused by a benign, non-cancerous tumor on the pituitary gland called an adenoma. This tumor acts like a stuck throttle, constantly releasing too much growth hormone into your body.
What is the role of IGF-1 in acromegaly?
When your pituitary gland produces excess growth hormone, your liver responds by making high levels of Insulin-like Growth Factor 1 (IGF-1). Together, these hormones tell your soft tissues, bones, and organs to keep growing abnormally.
What are the early physical signs of acromegaly?
Early physical signs often include your shoes or rings feeling unusually tight due to growing hands and feet. You might also notice gradual changes in your face, such as a widening nose, a more prominent jaw, or new gaps forming between your teeth.

Questions for Your Doctor

  • • What was my specific IGF-1 level, and how does it compare to the normal range for my age and sex?
  • • Based on my MRI, what is the size of my pituitary adenoma, and is it touching any nearby structures like the optic nerves?
  • • Since my diagnosis was delayed, which of my existing health issues (like high blood pressure or joint pain) are likely related to acromegaly?
  • • How much experience does this medical center have in treating acromegaly specifically?
  • • What are the next steps for monitoring my hormone levels and the tumor size?

Questions for You

  • • When did I first notice changes like my rings or shoes getting tighter, and did I mention these to a doctor at the time?
  • • Looking back at photos from 5 or 10 years ago, what specific changes do I see in my face or jawline?
  • • What are my biggest concerns right now—is it the physical changes, the long-term health risks, or the treatment process?
  • • Which symptoms, such as headaches, joint pain, or fatigue, are impacting my daily life the most?

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References

  1. 1

    Acromegaly: clinical features at diagnosis.

    Vilar L, Vilar CF, Lyra R, et al.

    Pituitary 2017; (20(1)):22-32 doi:10.1007/s11102-016-0772-8.

    PMID: 27812777
  2. 2

    Acromegaly: 'You must know it to think of it'.

    Boguszewski CL

    European journal of endocrinology 2020; (183(1)):C1-C4.

    PMID: 32487776
  3. 3

    Acromegalic Cardiomyopathy: An Overview of Risk Factors, Clinical Manifestations, and Therapeutic Options.

    Goldberg MD, Vadera N, Yandrapalli S, Frishman WH

    Cardiology in review 2018; (26(6)):307-311 doi:10.1097/CRD.0000000000000215.

    PMID: 29794808
  4. 4

    Treatment of acromegaly with oral octreotide.

    Remba-Shapiro I, Nachtigall LB

    Best practice & research. Clinical endocrinology & metabolism 2024; (38(4)):101888 doi:10.1016/j.beem.2024.101888.

    PMID: 38443224
  5. 5

    Genetics of gigantism and acromegaly.

    Hannah-Shmouni F, Trivellin G, Stratakis CA

    Growth hormone & IGF research : official journal of the Growth Hormone Research Society and the International IGF Research Society 2016; (30-31()):37-41 doi:10.1016/j.ghir.2016.08.002.

    PMID: 27657986
  6. 6

    6'6" United States Marine Seeks Treatment for Gynecomastia Only to Learn It Is All in His Head.

    Young DB

    Military medicine 2015; (180(12)):e1290-2 doi:10.7205/MILMED-D-15-00248.

    PMID: 26633678
  7. 7

    [Acromegaly in the differential diagnosis of hearing loss].

    Dzeranova LK, Lepeshkina LI, Shutova AS, et al.

    Problemy endokrinologii 2023; (69(2)):31-37 doi:10.14341/probl13249.

    PMID: 37448269
  8. 8

    [Acromegaly and it's cardiovascular implications].

    Cadena-Obando DA, Remba-Shapiro I, Abreu-Rosario CG, Mercado M

    Revista medica del Instituto Mexicano del Seguro Social 2021; (59(1)):73-80 doi:10.24875/RMIMSS.M21000054.

    PMID: 33667046
  9. 9

    Presence of cerebral microbleeds is associated with cognitive decline in acromegaly.

    Xie Z, Zhuang Y, Zhang Z, Liu J

    Frontiers in oncology 2022; (12()):948971 doi:10.3389/fonc.2022.948971.

    PMID: 36505847
  10. 10

    LIMITATIONS OF CURRENT APPROACHES FOR THE TREATMENT OF ACROMEGALY.

    Shanik MH

    Endocrine practice : official journal of the American College of Endocrinology and the American Association of Clinical Endocrinologists 2016; (22(2)):210-9 doi:10.4158/EP15825.RA.

    PMID: 26437214
  11. 11

    Exosomal hsa-miR-21-5p derived from growth hormone-secreting pituitary adenoma promotes abnormal bone formation in acromegaly.

    Xiong Y, Tang Y, Fan F, et al.

    Translational research : the journal of laboratory and clinical medicine 2020; (215()):1-16 doi:10.1016/j.trsl.2019.07.013.

    PMID: 31469974
  12. 12

    Neutrophil-to-Lymphocyte, Platelet-to-Lymphocyte Ratios, and Systemic Immune-Inflammation Index as Potential Biomarkers of Chronic Inflammation in Patients with Newly Diagnosed Acromegaly: A Single-Centre Study.

    Szydełko J, Szydełko-Gorzkowicz M, Matyjaszek-Matuszek B

    Journal of clinical medicine 2021; (10(17)) doi:10.3390/jcm10173997.

    PMID: 34501445
  13. 13

    Post-treatment heterogeneity of cardiometabolic risk in patients with acromegaly: The impact of GH and IGF-1.

    Heydari M, Hashemi-Madani N, Emami Z, et al.

    Endocrine research 2022; (47(1)):1-7 doi:10.1080/07435800.2021.1931298.

    PMID: 34102938
  14. 14

    A legendary sumo wrestler with gigantism or acromegaly? The case of Ikezuki Geitazaemon (1827-1850).

    Takada K, Sasano M, Hayakawa S

    Medical hypotheses 2020; (144()):110174 doi:10.1016/j.mehy.2020.110174.

    PMID: 33254497

This page provides an educational overview of acromegaly and its causes. It is not a substitute for professional medical advice, diagnosis, or treatment from a qualified endocrinologist.

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