Seeking Guidance on Specialist Referrals for Ulterior Medical Issues (Leukemia, Hyperlipidemia, Smooth Muscle Antibodies, etc.)
Greetings r/AskDocs, I'm here to seek your insights regarding which medical professionals I should approach, considering the intricacies of my health background. I would appreciate any pointers on the right specialists and tips for handling my conditions. Below is a summary of my medical profile: **Demographics:** - Age/Sex: 36/M **Health Background:** - Diagnosed with T-cell leukemia at the age of two in 1990, and have been in remission since 2002. - For over ten years, my blood tests have consistently identified elevated triglycerides and lipids. - Currently dealing with high blood pressure, which I am managing with Olmesartan 40mg once daily. - A recent blood test indicated the presence of smooth muscle antibodies, a finding that my general practitioner noted as potentially worrisome but didn’t elaborate on. - I may have Hyperlipidemia or Familial Hypercholesterolemia, given my family history and lipid levels, yet no formal diagnosis has been provided to date. **Current Health Complaints:** - Experiencing mild fatigue, occasional bloating, and a discomfort similar to heartburn localized to the upper right section of my abdomen. **Current Medications:** - Olmesartan 40mg/day, Pantoprazole 40mg/day, Nexlizet 180mg/10mg/day. **Family Health History:** - A history of high cholesterol and high blood pressure, particularly on my father's side regarding blood pressure and my mother's regarding cholesterol levels. My GP recommended that I consult with a specialist but did not specify which kind would be most appropriate. With my history of leukemia, existing lipid challenges, and those concerning smooth muscle antibodies, I am seeking your advice: 1. Which specialists should I consider prioritizing? Should I see a hematologist for follow-up on leukemia, a cardiologist for lipid management, and possibly a rheumatologist or hepatologist for concerns related to the smooth muscle antibodies? 2. Is there a chance that the presence of smooth muscle antibodies is connected to my other medical issues, or could this represent an entirely separate problem (such as autoimmune hepatitis)? 3. Do you have suggestions for managing my elevated triglycerides and lipids? To note, I do not take any medications related to cancer now. Any guidance you could offer, especially with recommendations for specialists who can help connect and address these various aspects of my health, would be greatly appreciated. I am located in Orlando, FL, in case that information is relevant. Thank you very much for your assistance!
Answers (1)
7/23/2025, 9:20:54 PM
OpenHealth AI
Thank you for sharing your detailed health background and concerns. It's clear that you are navigating several important health issues, and it's great that you're seeking the right guidance. Here's a structured response to your questions:
Key Recommendations:
-
Specialists to Consult:
- Hematologist for ongoing follow-ups related to your T-cell leukemia and overall blood health.
- Cardiologist for managing your elevated triglycerides, hyperlipidemia, and blood pressure.
- Rheumatologist to assess the implications of smooth muscle antibodies and rule out autoimmune conditions.
- Hepatologist may be beneficial if liver-related concerns arise, particularly if autoimmune hepatitis is suspected.
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Connection of Smooth Muscle Antibodies:
- The presence of smooth muscle antibodies can be associated with autoimmune conditions, including autoimmune hepatitis. It’s crucial to evaluate this connection with a rheumatologist to determine if it's linked to your other issues or a separate concern.
-
Managing Elevated Triglycerides and Lipids:
- Focus on dietary adjustments:
- Adopt a heart-healthy diet rich in fruits, vegetables, whole grains, lean proteins (like fish and poultry), and healthy fats (like olive oil and avocados).
- Avoid saturated fats, trans fats, and refined sugars.
- Regular physical activity is essential: Aim for at least 150 minutes of moderate exercise weekly (like brisk walking or cycling).
- Monitor your weight: Losing even a small amount of weight can help lower triglyceride levels.
- Stay hydrated and limit alcohol intake.
- Consider discussing with your cardiologist the potential for medication adjustments targeting lipid levels.
- Focus on dietary adjustments:
Next Steps:
- Schedule appointments with the recommended specialists as soon as possible, prioritizing the hematologist and cardiologist.
- Maintain a symptom diary to track any new symptoms that may arise, particularly concerning fatigue and abdominal discomfort.
- Review your current medications with your healthcare provider to ensure they are optimally addressing your conditions.
It's completely understandable to feel overwhelmed with multiple health issues, but approaching each with a focused plan will be beneficial. Remain proactive, and don't hesitate to ask your healthcare providers any questions during your consultations. You're doing great by advocating for your health!
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - **Portocaval shunt size: 9.9 mm** (blood bypassing the liver into the inferior vena cava) - **Arteriovenous shunt size: 4.4 mm** - **Portal vein size: 6.1 mm** (patent) - **Three nodular cystic lesions** located in the perivascular area, with largest measuring 11.6×20.7 mm, enhancing during the venous phase - Liver features a heterogeneous architecture, exhibiting irregular enhancement - Gallbladder appears elongated and slightly enlarged - Other abdominal organs exhibit normal findings **RADIOLOGIST’S ASSESSMENT:** "Congenital portosystemic shunt indicative of Abernethy malformation; less likely arteriovenous malformation (AVM); cannot dismiss the possibility of localized liver lesions." **ADVICE:** Seek consultations with an abdominal and vascular surgeon. ### Blood Tests (August 1, 2025): **Complete Blood Count:** - WBC: 10.44 × 10⁹/L (normal range) - **RBC: 2.1 × 10¹²/L** (LOW - indicating severe anemia) - **Hemoglobin: 69 g/L** (CRITICALLY LOW; normal is 117-166) - Platelets: 403 × 10⁹/L (elevated) **Biochemistry Analysis:** - 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**Portocaval shunt: 9.9 mm** (no change, continues to drain directly into the inferior vena cava avoiding liver acinus) - **Arteriovenous shunt: 4.4 mm** (no alteration) - **Three nodular cystic lesions** in perivascular space, maximum size 11.6×20.7 mm, enhancing in the venous phase - **Portal vein: 6.1 mm** (noted during porto-venous phase) - Arteries show no filling abnormalities - Intrahepatic bile ducts remain non-dilated - Gallbladder is elongated and slightly bigger, free from stones - Pancreas: normal - Spleen: measures 66.9×38.5 mm (not enlarged), splenic vein is 3.6 mm - Kidneys: normal placements and structure - No excess fluid detected in the abdominal cavity - No visible changes in lymph nodes **MSCT ANALYSIS:** "Congenital portosystemic shunt indicative of Abernethy malformation, unlikely to be AVM, presence of focal liver lesions cannot be ruled out." **RECOMMENDATION:** Engage with an abdominal and vascular surgeon. --- ## RECENT BLOOD WORK (December 2025 - January 2026) ### Complete Blood Count (January 19, 2026): - WBC: 5.8 × 10⁹/L (SHOWS IMPROVEMENT) - **RBC: 2.93 × 10¹²/L** (IMPROVED but still low) - **Hemoglobin: 72 g/L** (SHOWS IMPROVEMENT but still low) - Platelets: 223 × 10⁹/L (BACK TO NORMAL) - Neutrophils: 30.0% - Lymphocytes: 64.8% - Monocytes: 4.6% ### Biochemistry (January 28, 2026): - Total protein level: 67 g/L (slightly deficient) - Creatinine: 20.7 μmol/L - **Total Bilirubin: 242 μmol/L** (STILL HIGH - unchanged) - **Direct Bilirubin: 142 μmol/L** (VERY HIGH) - **ALT: 50 IU/mL** (DRASTICALLY LOWER from >1000!) --- ## OVERVIEW OF PROGRESS OVER 6 MONTHS | Parameter | August 2025 | January 2026 | Change | |------------------|-------------|---------------|--------------------------| | **Hemoglobin** | 69 g/L | 72 g/L | ↗ Slight improvement | | **RBC** | 2.1 | 2.93 | ↗ Improved | | **ALT** | >1000 | 50 | ✓✓ MAJOR IMPROVEMENT | | **Bilirubin** | 245 | 242 | → Unchanged (still elevated) | | **Portal vein** | 6.1 mm | 3.9 mm (US) | ↗ Decreased | | **Platelets** | 403 | 223 | ↘ Normalized | | **Shunt size** | 9.9 mm | 9.9 mm | → No Change | --- ## CURRENT SITUATION (February 2026 - 7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? 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