Hematologist (Blood Specialist) Questions Hematologist

Nutritionist thinks I might have Thalassemia?

I have a long-standing history of anemia. At first, I thought that it was due to my endometriosis, but I just recently had some labs drawn and my nutritionist thought that my high Iron and low Ferritin levels seemed a little strange and was concerned about Thalassemia. To add some background, a doctor noticed that my ferritin was low in Oct 2019 and ordered 4 iron infusions. I, unfortunately, had an anaphylactic reaction to the last infusion. Ferritin was then rechecked at the end of November and had increased substantially. As a result of the infusions, I felt like I had more energy. My doctor told me that I would not have to supplement with iron for at least a year. I then had a hysterectomy in December and stopped having periods. I am currently on Trileptal 300 mg 2x/day and Onfi 5 mg 1x/day for epilepsy. In terms of my symptoms, I have been feeling more tired in the past few months, but have been attributing it to other things.

Female | 26 years old
Complaint duration: 1 year
Medications: Trileptal, Onfi
Conditions: Epilepsy, history of endometriosis

3 Answers

I recommend you see a hematologist. Take lab results with you to a consultation appointment. Check your health insurance website for hematologists that are contracted with your plan.
Best wishes for a good outcome.
It is a good idea to have tests done for thalassemia: Hemoglobin electrophoresis(for beta thalassemia) and alpha thal DNA test for alpha thalassemia.
Stay Healthy!
Your issues are a little more complex than the average patient. First, endometriosis is a disorder or female hormone imbalance, with Estradiol (E) at a higher percentage than Progesterone (P4) with likely anovulation which further contributes to E/P4 dominance. To have a hysterectomy by age 26 is highly unusual and means that your case is severe enough that you were not diagnosed early enough to stop the progression of endometriosis implants. However, that cannot be undone but you still have to manage the E/P4 imbalance or your are at risk of ovarian cysts, ovarian cancer, growth of endometriosis implants that were left behind and even breast cancer! If you are wondering where the research to back-up these claims comes from, check out Full Bloom; Perimenopause, Menopause and Beyond and the research is laid out for readers. Full Bloom is available on Amazon for only $20.

Regarding the possibility of thalassemia, you really need to have a hemoglobin electrophoresis (a blood test) to help determine if that is going on; it’s something that should be covered by your insurance. Ferritin is the protein that carries your iron in your bloodstream so it’s quite a valuable test result to know about; high iron levels usually indicate tissue damage so it is not as helpful as ferritin levels. Interestingly, ferritin is actually a COVID test so be certain that a high ferritin is not due to a chronic viral illness such as Epstein-Barr, Lyme’s dz (tick-borne) or other significant viral disease, including COVID. Your nutritionist has made a great observation; now proper work-up with an internist or family practice practitioner or even a good OB-GYN who is interested in total body health is whom can do your blood work-up.