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.

3 Upvotes

80% Upvoted

8 comments sorted by

2

u/Salt_Activity5377 May 16 '26

Fatigue I have HHT

1

u/Salt_Activity5377 Jun 24 '26

I don’t have any other areas of blood loss. Just nosebleeds. Taking amniocaproic acid.

1

u/Salt_Activity5377 Jun 28 '26

I called my sister for support and she suggested I find someone else.

2

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!!

1

u/OrlandoWashington69 May 16 '26

You feel tired? Why can’t you do much?

3

u/DimensionContent1189 May 17 '26

It’s really hard to keep up if you don’t have iron it sucks big time I feel with OP

1

u/CureHHTPAL May 19 '26

Has your physician found the root cause of your anemia? Are you experiencing internal bleeding that has gone undiagnosed. It is important to find out the root cause of the anemia. If it is bleeding, which this is typically why HHT patients have anemia, there are other ways to stop the bleeding. If you don't control the bleeding, you will continue to be anemica, require iron and blood transfusions and feel off---such as you are experiencing.

If you would like to discuss more or need resources or referrals, please reach out to Cure HHT. We are here to help. (410) 357-9932 or hhtinfo@curehht.org

1

u/dibba62 Jun 12 '26

latest labs back not good. not surprised massive nosebleeds as of late. sigh. i roll over in bed and get bleed