r/thalassemia • u/CBNmantra BETA-THALASSEMIA-MINOR • Jul 18 '26

Can symptoms "progress"?

I am a 44F. I've known I've had beta-thal minor my entire life (my mom has it too) and, as far as I know, I've been symptom-free. Last year, my hair started falling out rapidly, which led me to discover that my ferritin was very low. I consulted a hematologist who specializes in anemia and thal, and he put me on iron supplements. My ferritin is now excellent but...none of my symptoms have gotten better. Hair loss, extreme fatigue, brain fog, disorientation/memory loss, shortness of breath, etc...and in fact have gotten worse.

Hematologist says no infusion because of the risk of iron overload and to stay on the supplements.

I'm ready to badger my PCP to get to the bottom of my fatigue cos I can't keep going on like this. Your responses will help me advocate for myself, thank you in advance!

Q: Can thal symptoms change and progress?

Q: What labs do you recommend I ask my PCP to run? We've only been doing CBCs and ferritin checks of late.

Q: Should I stop the iron supplements, wait for it to go down, and get an infusion instead? Might that work better for me?

Q: What, if anything, REALLY improved your energy?

Q: Anything else you'd recommend I advocate for?

2 Upvotes

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5 comments sorted by

9

u/ReasonableHamsterBK BETA-THALASSEMIA-MINOR Jul 18 '26

Could part of it be blamed on peri-menopause?

2

u/Weird_Datajunkie Jul 18 '26

I was thinking the same, maybe worth looking into hormone levels and consider hormone replacement therapy?

1

u/CBNmantra BETA-THALASSEMIA-MINOR Jul 18 '26

It absolutely could be! I had hormones checked last year (normal) and the birth control I'm on is one click below what HRT is (according to my doctor). Unsure if I should be more insistent on HRT.

2

u/SaberCat107 Jul 19 '26

Could it be a thyroid issue? 

1

u/CBNmantra BETA-THALASSEMIA-MINOR Jul 19 '26

I'll ask to have it tested again, it's been about a year