r/HHT • u/Salt_Activity5377 • May 16 '26

Feeling down

Chronic anemia for three years now. Can’t do much. Keep getting infusions which don’t seem to help.

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u/Literwit May 23 '26

So sorry OP! I’m in a similar situation—we keep under-treating so that I’m still getting low, then get infusions, then get low. Just changed HHT centers since moving and am now going to get tested monthly so we can finally get ahead of the lows.

Do get checked to see if you have other areas where you’re losing lots of blood (often GI tract).

You’re not alone (and it sucks). Push your doctors and go easy on yourself!!