AIHA Diagnosed, Not On Treatment Yet. I Need Some Answers From People Who Has Been Through This. | myAIHAteam

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AIHA Diagnosed, Not On Treatment Yet. I Need Some Answers From People Who Has Been Through This.
A myAIHAteam Member asked a question 💭

Hello everyone. I've just been diagnosed with AIHA. I also have b12 deficit, which it seems is not linked. I'm already on treatment with b12. My haematologist sent me to get a tomography done. Already done. Still I won't see her until 11th March. I have extensive blood test on the 7th. Lots of autoantobodies, serology, tumoral markers and so. The tomography shows spleen enlarged and cervical adenopathy. Everything I read it says treatment for AIHA must be instaured immediately. I was diagnosed… read more

posted February 18
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A myAIHAteam Member

if you have AIHA and you wont see your doctor until 11 march i think is very late. your haemoglobin might drop too low and you start to feel very sick and it can be dangerous. maybe you can see another doctor until then. the hg levels can drop fast in some cases but i dont know how high is yours or why your doctor didn't give you any medication. this is not something to play with. but maybe doctor has their reasons not to give any medication until 11 march. but still, it seems to me that 11 march is too far away for treatment. i would go to another doctor until then and after i would compare the results and what each has to say. the doctor should have told you the reasons why is postponing the treatment for AIHA.

posted February 18
A myAIHAteam Member

☺️

posted February 19
A myAIHAteam Member

Yeah, I just know about América health care system, what we see on tv or people who have lived there tell. But I think is right we have social security here. But sometimes we go private to get things done quicker. In fact on Wednesday I'll visit a private haematologist in a private hospital to have a second opinion. I also thought maybe is just the b12 what is wrong. But, I have the hemolisys I don't know if b12 deficiency can cause it. I have a PAD test positive. And positive for IgG and C3d. Also the LDH elevated. Hb <8. I feel less tired since b12 administration but I still can do normal things without feeling fatigue and shortness of breath. I still feel dizzy. What it has improved is the exhaustion. She wrote in my history AIHA as a diagnosis. She send me for another blood test that is due on 7th March and she is asked for crioblogulins, antibodies, serology and lots of things. What I don't understand is she told me AIHA and she let me go without treatment just saying I see you in 5 weeks, and we will see the blood test result, the CT scan results, and we will see how the levels of b12 are. "If you feel very tired and your skin is pale or jaundice you have to come to the ER" that was her recommendation. CT scan showed cervical adenopathy and spleen enlarged. That's what my GP told me as she could see the result. She told me maybe the haematologist wants to know the underlying cause before give you treatment. But I think for what I've read on Internet it doesn't matter, I should be on treatment while they find the cause...thank you for all your comments really.

posted February 19
A myAIHAteam Member

5 weeks of waiting for being diagnosed with AIHA is just not right. i think the doctor wants to find the cause behind the aiha but until then they should have made a treatment plan. i incline to think it has something with the doctor having a busy schedule and time slots or something like that, if they made you wait 5 weeks.
if u went to a big hospital , like a big city hospital, they would have admitted you there and made all the tests while supervising you and give you the treatment you need . like, keeping u in hospital until u get better and they find out the things they need. i hope all goes well with you and get well soon. i thought u are from usa and medical care is expensive but i see you are from Spain and in Europe things are more affordable in terms of money and insurance related things which is good.

posted February 19
A myAIHAteam Member

Thanks for your reply. Is what I was thinking that this is a dangerous condition that needs treatment immediately. I also have b12 deficiency I don't know if it has something to do with AIHA. I haven't read anything about that. On the 7th I have a blood test in which she ask for a lot of antibodies, tumoral markers, and viruses and things I don't understand. She diagnosed me with AIHA because in my previous blood test I showed the PAD positive, IgG and Cd3...bilirubin high, hg 8, HDL high, and haptoblobin not found. I think that suggested her about AIHA. She sent me for a tomography and she wrote down that my diagnosis was that. So I don't know why I'm not on treatment yet. Maybe she wait for the next blood test. She told me I see you in 5 weeks to see the results and to see how the b12 vitamin is going. But really it puzzles me. I'll go to another doctor next week and I'll take him/her the blood test the haematologist gave me. Thank you really

posted February 18

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