Navigating Complicated Blood Disorders
Seeking some brainstorming assistance here. I’m a 36-year-old woman looking for guidance. Back in 2007, when I was 18 years old, I was diagnosed with ITP, also known as idiopathic thrombocytopenia. My platelet count plummeted to 3,000, which forced me to undergo several blood transfusions and steroid treatments. The medical team suspected a connection to the Gardasil vaccine since my platelet levels dropped shortly after my third dose. Thankfully, I stabilized at around 80,000, and for a considerable period, my life returned to normal. However, in 2018, when I reached 29, I suffered from a cerebral venous sinus thrombosis, or CVST, which is essentially a blood clot in a vein in the brain. It was then that I was informed I had antiphospholipid syndrome. At the time, I was on birth control, and together, these factors created a precarious situation. For approximately five years, I was prescribed Warfarin, with doctors informing me that I would need it for the rest of my life due to my clotting issues. When I was diagnosed with thyroid cancer last year and required surgical intervention, my hematologist and I opted to transition from Coumadin to Xarelto. We considered that the clotting incident might have been more closely linked to the birth control I was using, so a milder medication seemed more suitable. I continue to take Xarelto today. Just as I thought I had things under control, I began experiencing hair loss along with intense cravings for ice cubes. After undergoing a comprehensive evaluation, I reviewed my results today through my health app: - Platelets: 250,000 (a positive note!) - Ferritin: 4 ng - Hemoglobin: 10.5 g - Iron: 21 mcg - Iron Saturation: 5% Here I am, with a background of ITP, a significant clot, antiphospholipid syndrome, thyroid cancer, and now facing anemia. I strive to manage my health diligently and adhere to my healthcare providers' recommendations, but I can’t shake the feeling that I might be overlooking something crucial. Should I be prompting my doctors to delve deeper into any other concerns, given this complex array of conditions? Are there additional disorders I should be vigilant about? Many of my health issues are blood-related, so I am curious if there are any lifestyle changes or dietary adjustments worth considering that could address the bigger picture. I appreciate any insights you might have!
Answers (1)
9/6/2025, 10:40:49 PM
OpenHealth AI
It's understandable to feel overwhelmed when managing multiple complex health conditions, especially with your history of ITP, CVST, antiphospholipid syndrome, thyroid cancer, and now anemia. Your concerns about potential oversight in managing your health are valid and show your commitment to your well-being.
Main Points:
- Current Conditions: You should monitor your anemia closely and ensure your healthcare team is aware of your complete medical history.
- Dietary Adjustments: Focusing on iron-rich foods and discussing potential supplementation is important.
- Follow-up with Healthcare Providers: Continuous dialogue with your doctors can help ensure nothing important is overlooked.
Explanation:
- Anemia can indeed cause symptoms like fatigue and hair loss. Your extremely low ferritin levels suggest significant iron deficiency, leading to the anemia indicated by your hemoglobin count. This situation may require attention to improve your energy levels and overall health.
- Your history with blood disorders underscores the importance of continuous monitoring. It's also wise to understand how each condition may interact, particularly with your use of anticoagulants like Xarelto.
- Dietary intake is critical for both anemia and overall health. Ensuring you have a well-balanced diet can make a significant difference.
Next Steps:
-
Boost Iron Intake:
- Incorporate iron-rich foods such as lean meats, beans, lentils, fortified cereals, spinach, and nuts into your meals. Pair these with vitamin C sources (like citrus fruits) to enhance iron absorption.
- Consider discussing iron supplements with your healthcare provider, especially given your low ferritin levels.
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Regular Monitoring:
- Keep regular follow-ups with your healthcare providers to track your blood work and platelet levels, given your history. Ensure they are informed about your anemia and any new symptoms.
- Ask about potential tests for underlying causes of your anemia, such as chronic kidney disease or other nutritional deficiencies.
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Record Symptoms:
- Maintain a log of any new symptoms you experience (like hair loss, cravings, fatigue) and share these with your doctors. This can help them assess any connections and adjust your treatment plan as necessary.
-
Consider a Multidisciplinary Approach:
- It may be beneficial to have a nutritionist or dietitian work with you to create a tailored eating plan that caters to your unique health needs.
-
Stay Informed:
- Stay updated about the relationship between your conditions and potential complications. Consider discussing autoimmune factors or additional tests for lupus or thyroid function, as these can also influence your symptoms and overall health.
Remember, you're doing a great job staying proactive about your health. It may feel like a lot, but ensuring each piece is considered will help you manage your conditions more effectively. If anything feels concerning or if you experience new symptoms, don’t hesitate to reach out for medical advice.
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7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options
# 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:** - Urea: 1.80 mmol/L (normal) - Creatinine: 33.4 μmol/L (normal) - **ALT: >1000 IU/mL** (EXTREMELY HIGH - severe liver dysfunction) --- ## FOLLOW-UP IMAGING (December 16, 2025 - 5.5 Months Old) ### Liver Ultrasound: **RESULTS:** - Right lobe: 64 mm, left lobe: 43 mm - Liver capsule appears irregular and vague - **Parenchyma: heterogeneous, showing 7 hypo-isoechoic nodules** (sizes range from 11.5×10.7 mm to 17.6×15.4 mm) - Capsule features uneven contours - Blood flow noted during Doppler examination - No dilation in intrahepatic bile ducts - **Portal vein: 3.9 mm** (decreased from 6.1 mm - indicating improvement) - Common bile duct: 1.4 mm - Gallbladder: measures 43.7×9.2 mm (pear-shaped, wall thickness 2.0 mm, homogeneous, free of stones) **ULTRASOUND ASSESSMENT:** "Presence of liver volumetric formations (specifically liver hemangiomas)." --- ## LATEST MSCT (February 6, 2026 - 7 Months Old) ### MSCT with 3-Phase Contrast: **FINDINGS:** - Liver remains normal in size, but shows heterogeneous structure with uneven contrast enhancement - **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? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. 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