Understanding Unexplained Splenomegaly
Age: 43 - Gender: Female - Height: 5'9" - Weight: 69 kg - Ethnicity: White British; Non-smoker, No alcohol consumption, No use of recreational drugs. Medications: Sertraline, Apixaban, Rosuvastatin, Bisoprolol, Vitamin B12 I am facing an issue with unexplained splenomegaly measuring 17 cm in size. Existing Health Conditions: - Ehlers-Danlos Syndrome Type 3 - Dyslipidemia - Postural Orthostatic Tachycardia Syndrome - 4 mm Polyp in Gallbladder - Unprovoked Bilateral Pulmonary Embolism - Indications of potential muscle weakness in lung function assessments Thorough Investigations: A bone marrow biopsy yielded normal results, except for a slightly reduced haptoglobin level of 0.25 and a marginally elevated reticulocyte count at 108. A myeloid molecular panel was performed to exclude any underlying myeloproliferative neoplasms, including JAK2, CALR, MPL, and CSF3R mutations, with no abnormalities detected. An autoimmune evaluation returned negative results, which included tests for ANA, rheumatoid factor, anti-CCP, antimitochondrial antibodies, anti-smooth muscle antibodies, Anti-GPC antibodies, and anti-LKM antibodies. A borderline Vitamin B12 level was found at 207. Blood tests for myeloma conducted in August 2023, May 2024, and May 2025 indicated an isolated elevation of IgA. Following my unprovoked pulmonary embolisms, I underwent a multitude of genetic assessments regarding blood disorders. I feel fortunate to reside in the UK, where extensive testing has been performed to uncover the reason behind my splenomegaly. Initially, the size was noted at 15 cm, and over approximately 18 months, it has only increased by 2 cm. Presently, I experience discomfort, a feeling of fullness, and issues sleeping on my side. The discomfort intensifies particularly during periods of illness or fatigue. Since all investigations have yielded no explanation for the splenomegaly, my doctor has opted for regular follow-ups every three to six months for blood tests to monitor any changes. Unfortunately, I am managing daily symptoms without any definitive answers. My attempts to research online only highlight that splenomegaly is unusual and emphasize the need for a diagnosis, which heightens my anxiety, especially when faced with the physician's uncertainty about its cause. I am reaching out in the hope of connecting with anyone who has navigated or is currently facing a similar situation. There is a scarcity of information available on the web regarding unexplained splenomegaly, which is why I find myself repeating this query, hoping that someone else may come across it and relate to my experience!
Answers (1)
8/28/2025, 4:45:31 PM
OpenHealth AI
I'm glad you reached out to discuss your situation with unexplained splenomegaly. It can be extremely frustrating and anxiety-inducing to deal with symptoms without clear answers. Here are the main points regarding your current condition:
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Understanding Splenomegaly: Splenomegaly, or enlargement of the spleen, can be caused by various factors, and in your case, extensive investigations have returned normal findings, which can be common but unsettling.
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Potential Causes and Symptoms: The size increase of the spleen (from 15 cm to 17 cm) along with your discomfort, feelings of fullness, and issues sleeping are important to manage. Splenomegaly can be linked to several conditions (e.g., infections, liver disease, or blood disorders), but it appears you have had thorough evaluations to rule these out.
Here’s what you can do moving forward:
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Symptom Management:
- Focus on managing discomfort: Use heat pads or gentle stretching exercises to alleviate tightness or fullness in your abdomen.
- Consider adopting sleep positions that may be more comfortable for you, such as lying on your back with pillows to support your side.
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Monitor and Document Symptoms:
- Keep a journal of your symptoms, including when they occur, their severity, and any potential triggers (e.g., stress, illness). This can be helpful to discuss with your healthcare provider during follow-ups.
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Manage Anxiety:
- It’s normal to feel anxious when facing health uncertainties. Mindfulness practices, such as meditation or yoga, may help reduce stress and improve your overall wellbeing.
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Stay Informed but Cautious:
- Be careful with online research as it might increase anxiety. Instead, focus on discussing any specific concerns with your healthcare team, as they are best suited to provide personalized advice based on your unique medical history.
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Follow-Up Strategy:
- Continue with regular follow-ups as recommended. Make sure to communicate any new or worsening symptoms to your healthcare provider. If discomfort continues to increase or interferes with daily life, discuss the possibility of additional imaging or referrals to specialists, if necessary.
Remember, while it can be disheartening to not have clear answers, staying proactive about symptom management and regular monitoring is important. Your health team is there to support you, so don't hesitate to express your concerns and advocate for further evaluations if you feel it's necessary.
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