|Undiagnosed anemia - they say Im a rare case!
Jun 25, 2003
Hello from Vancouver,Canada.
I am a 40 yr old HIV + woman. Im on meds - undetectable VL and around 450 CD4s. I have had severe anemia (actually red cell aplasia) since January. My hemoglobin has been as low as 6 and I have had 6 blood transfusions during this time. The cause of my anemia is still not confirmed. I've had a bone marrow biopsy which showed nothing except that Im not producing new red blood cells (reticulicytes). I also had a CAT scan which showed my thymus gland is enlarged. It apparently does not look like a thymoma so now Im being tested for myasthenia gravis. I feel like Im being bounced from specialist to specialist. Do you have any suggestions of what else to investigate? Also wondering if I do need a thymectomy, what are the implications of that in the context of HIV? The thorasic surgeon and my HIV doc certainly don't know. What should I do next. I am really learning the importance of being empowered in taking charge of my own health care but I am running out of ideas here! Thanks very much for any suggestions Dr. Bob.
Response from Dr. Frascino
Red cell aplasia is indeed a relatively rare condition. You will need to work closely with a hematologist to sort this out. Specific causes of aplastic anemia can include viral infections, such as parvovirus B-19, cytomegalovirus, Epstein-Barr virus, and hepatitis. Other potential specific causes can include exposure to ionizing radiation, chemotherapy, benzene, alcohol, arsenic, phenylbutazone, choramphenicol, gold salts, and carbonic anhydrase inhibitors. Up to 50% of the cases may remain "idiopathic," which means a specific cause cannot be determined. Your hematologist should work with your HIV specialist to evaluate all potential causes. Get a second opinion from an academic medical center, if necessary.
Your question about thymectomy is a good one. Certainly there should be very clear indications for considering this operation. Why exactly are they considering removing your thymus gland? Simply because its enlarged? If this is the case, I would definitely recommend a second opinion before considering this option.
I wish I had an easy answer for you, but I dont. Try not to get discouraged. Continue to persevere and work with your health care team. Your problem is challenging, but not insurmountable.
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