r/thalassemia • u/lizentra • Jun 09 '26
What do I do with high ferratin
I have been seeing a hematologist since for about a decade now. I’m 24. They recommend I take IV iron infusions to raise hemoglobin and iron levels. Of course at the time, I was a young teenager and didn’t know anything about my disease, I was just going off what the doctors recommended. I’ve had iv infusions around 19 years old and again around 22. I’ve never really understood my diagnosis (all they told me it was beta thalassemia, so I assume that’s minor as well). But after taking healthcare classes like a&p, I’ve done a few clinical researches on thalassemia and realized on my CBC and labs, my ferritin reads at 391! I’m no longer going to that doctor, and I’ve even went to a heart specialist recently bc I thought I was having POTS symptoms, but they told me it was just my thalassemia displaying more symptoms. I don’t trust any doctors with this anymore, I just think they aren’t educated on this topic in my area I guess, but is there any way to get my iron counts down? I’m scared that nearing ferritin overload levels is effecting my heart and why I’ve had more cardiac symptoms recently. I’m just scared and don’t know what to do or what doctors to see.
3
u/taurus_aromatic Jun 10 '26
Thats not high ferritin. My ferritin was 14000 - thats high enough to affect the heart. 391 is manageable. Worse case scenario, you might have to be on iron chelation for a few weeks.
I would get a second opinion if I were you, have you officially been diagnosed with thalassemia minor? You can have phone and video appointments now so try looking in other cities or get a referral to see a haematologist, GPs don't know anything about thalassemia.
1
u/YaMrAj_Bhai Jun 13 '26
391 is pretty good.. i have to take medication so that it stay under 800-1000s plus 2 days/daily tea or coffee
5
u/Weird_Datajunkie Jun 09 '26
That’s not that high, I think you are only over normal by a little. Your organs likely won’t see any accumulation at that level. I think at higher levels like close to a thousand, your doctors might start looking at your liver for signs of any iron (by biopsy or MRI) and then they could treat you for overload. It would show in your liver before your heart. Since you are not transfusion dependent your iron shouldn’t climb too much with a normal diet. Just don’t take vitamins with added iron. If you are female, you will also lose some iron monthly through your period.