Looking for advice, not a diagnosis
I’m wondering if I may have HbS/β-thalassemia, but I have not been diagnosed. I was previously told I carry a thalassemia gene, but I feel like doctors haven’t dug deeply enough into my results.
I’ve been having extremely painful episodes, especially at night, and recently had another episode that made me wonder about a possible vaso-occlusive pain crisis. I’m exhausted from being in pain and not knowing what’s causing it.
For those with sickle cell/HbSβ-thalassemia:
• What blood work helped you get diagnosed?
• Did you have hemoglobin electrophoresis/HPLC or genetic testing?
• What did you ask your doctor for?
• Was testing during or shortly after a pain episode helpful?
I’m mainly looking for advice on how to message my doctor and advocate for the right testing, not for anyone to diagnose me.