They did every blood test in the book, they were mostly just doing normal blood work to determine it, because they were seeing what was happening with my blood and noticed that my bilirubin was high, RBC going down and high amount of antibodies, if you’re suspicious if you have this I wouldn’t worry only 1-2 out of 100,000 people are diagnosed with this, usually caused by a secondary condition like a certain cancer or lupus. But it can also just show up out of nowhere (my case, suspected COVID caused it) but they were able to diagnose me with it 8 hours in the hospital
There are a few Facebook groups dedicated to AIHA. My infant son was diagnosed last year - once you’re connecting with people it doesn’t seem so rare which is nice. Did you need any transfusions or did the steroids do the trick?
Sorry for the late reply, the first symptoms was jaundice, I noticed I was having bad headaches, then the only consistent symptom I had was every time I did any exercise I could feel my whole head thumping, it did cause me to pass out in the hospital when I went on my walks.
My autoimmune system starts attacking my red blood cells basically dropping my hemoglobin, I have to take steroids to stop my immune system from destroying the healthy RBC and now my hemoglobin levels are rising!
There is a Coombs test or DAT but it sounds like yours is a different type of anaemia. AIHA is not necessarily chronic- it can be a one time occurrence after a virus- just a freak way if the body responding. My little man had some blood tests done today after the family all came down with a virus and his results are perfect.
Just got a referral for hematology because I have cardiolipin ab igm as well as antiphospholipid syndrome (evident with beta 2 glycoprotein elevation.) I have had both tests run 3 months apart and since they're still elevated I believe I have antiphospholipid syndrome and may have AIHA. I only have to wait a few weeks to see hematology thankfully. I have folate deficiency anemia that we've been trying to find the source of with gastroenterology. Nothing to cause anemia there but I do have severe gastroparesis(that was not on my bingo card for the year.) Rheum just started working me up in the fall and I have collected too many -ologists already.
I'm curious though. I'm a former vet tech. I have seen and treated dogs with AIHA. Some didn't make it unfortunately because it's usually not caught until it's really bad. I'm curious, in my experience some animals could be treated for it and would rebound. Animals don't always work like humans though so did they tell you-is this something you'll/we'll always have or do you get treated and they check you to make sure you don't have recurrences over time?
Hey sorry to hear that. So basically the doctor told me that this is something that could be life long, right now I’m on prednisone treatment and my blood and everything is looking perfect, so they think it’ll go away. There’s a chance though that I could relapse and have another reaction but they said the treat it the same. The doctors believe COVID was the reason it came up so they think there’s a possibility that a relapse is unlikely. As far as I’m concerned if you do have AIHA you will live a normal life. There’s always chance for something but very low.
That's a relief to hear. I have many of the symptoms. My hands and feet are always really cold and they hurt when they're cold. I have had palpitations/light headedness/dizziness and fatigue for many years. More recently I have sudden tachycardia out of nowhere when I'm at rest.
AIHA cured!
I was diagnosed with hemolytic anemia back in 2016 or so. Docs told me I had two choices. 1. Prednisone for life. 2. Splenectomy and likely pred for life.
Prednisone helped but every time I got off of it, the AIHA came back.
I finally took the leap of faith to get GFT (gut flora transplant) as I had done a ton of research on it regarding a different autoimmune issue (Colitis). I got the GFT in a country where it was accessible, which was Canada. Thanks to big pharma, that operation got shut down. Fortunately, GFT can still be obtained. In the US, back then, you could only get GFT/FMT if you had Cdiff after multiple waves of antibiotics. How idiotic can a system be. Thanks America! 💲💀💲
Anyways. I came here to say THERE IS HOPE!
It has been many YEARS since I got GFT and I have not even had a hint of AIHA. My blood results are consistently fantastic and I have not needed to even consider putting Prednisone back in my system. I'll hold onto my spleen too, thank you very much.
They did every blood test in the book, they were mostly just doing normal blood work to determine it, because they were seeing what was happening with my blood and noticed that my bilirubin was high, RBC going down and high amount of antibodies, if you’re suspicious if you have this I wouldn’t worry only 1-2 out of 100,000 people are diagnosed with this, usually caused by a secondary condition like a certain cancer or lupus. But it can also just show up out of nowhere (my case, suspected COVID caused it) but they were able to diagnose me with it 8 hours in the hospital
Interesting thanks for sharing. Hope you’re feeling better.
There are a few Facebook groups dedicated to AIHA. My infant son was diagnosed last year - once you’re connecting with people it doesn’t seem so rare which is nice. Did you need any transfusions or did the steroids do the trick?
I needed 3 transfusions to get my hemoglobin up and now I’m on steroids and they’re working
That’s great!
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Sorry for the late reply, the first symptoms was jaundice, I noticed I was having bad headaches, then the only consistent symptom I had was every time I did any exercise I could feel my whole head thumping, it did cause me to pass out in the hospital when I went on my walks.
AIHA admitted me for 2 months! Awful It was attributed to liver transplant immunodeficiency
Wow what is this
My autoimmune system starts attacking my red blood cells basically dropping my hemoglobin, I have to take steroids to stop my immune system from destroying the healthy RBC and now my hemoglobin levels are rising!
What tests did they do for this ? I am prone to anemia and have positive speckled ana
Just a full blood count. If you have antibodies they’ll do further tests.
A cbc shows antibodies? Or something would be low on the cbc ?
The cbc would show haemoglobin levels and reticulocyte count- if the retic. Count is high then it could indicate haemolytic anemia.
Interesting. My cbc doesn’t include reticulocytes. Just shows low hemo, Mcv, mch, high rdw and Rbc. I’ll look into what you’re saying. Thanks.
Did you have any spherocytes?
No I don’t have that either
There is a Coombs test or DAT but it sounds like yours is a different type of anaemia. AIHA is not necessarily chronic- it can be a one time occurrence after a virus- just a freak way if the body responding. My little man had some blood tests done today after the family all came down with a virus and his results are perfect.
I was diagnosed this past summer with WAIHA adding to my ITP (attack platelets) from 3 1/2 years ago. Let me know if you ever want to chat.
Just got a referral for hematology because I have cardiolipin ab igm as well as antiphospholipid syndrome (evident with beta 2 glycoprotein elevation.) I have had both tests run 3 months apart and since they're still elevated I believe I have antiphospholipid syndrome and may have AIHA. I only have to wait a few weeks to see hematology thankfully. I have folate deficiency anemia that we've been trying to find the source of with gastroenterology. Nothing to cause anemia there but I do have severe gastroparesis(that was not on my bingo card for the year.) Rheum just started working me up in the fall and I have collected too many -ologists already. I'm curious though. I'm a former vet tech. I have seen and treated dogs with AIHA. Some didn't make it unfortunately because it's usually not caught until it's really bad. I'm curious, in my experience some animals could be treated for it and would rebound. Animals don't always work like humans though so did they tell you-is this something you'll/we'll always have or do you get treated and they check you to make sure you don't have recurrences over time?
Hey sorry to hear that. So basically the doctor told me that this is something that could be life long, right now I’m on prednisone treatment and my blood and everything is looking perfect, so they think it’ll go away. There’s a chance though that I could relapse and have another reaction but they said the treat it the same. The doctors believe COVID was the reason it came up so they think there’s a possibility that a relapse is unlikely. As far as I’m concerned if you do have AIHA you will live a normal life. There’s always chance for something but very low.
That's a relief to hear. I have many of the symptoms. My hands and feet are always really cold and they hurt when they're cold. I have had palpitations/light headedness/dizziness and fatigue for many years. More recently I have sudden tachycardia out of nowhere when I'm at rest.
AIHA cured! I was diagnosed with hemolytic anemia back in 2016 or so. Docs told me I had two choices. 1. Prednisone for life. 2. Splenectomy and likely pred for life. Prednisone helped but every time I got off of it, the AIHA came back. I finally took the leap of faith to get GFT (gut flora transplant) as I had done a ton of research on it regarding a different autoimmune issue (Colitis). I got the GFT in a country where it was accessible, which was Canada. Thanks to big pharma, that operation got shut down. Fortunately, GFT can still be obtained. In the US, back then, you could only get GFT/FMT if you had Cdiff after multiple waves of antibiotics. How idiotic can a system be. Thanks America! 💲💀💲 Anyways. I came here to say THERE IS HOPE! It has been many YEARS since I got GFT and I have not even had a hint of AIHA. My blood results are consistently fantastic and I have not needed to even consider putting Prednisone back in my system. I'll hold onto my spleen too, thank you very much.