This is a new one for me. I had anemia on and off as a kid but it was always corrected with B12 and iron.
The last time I was in the ER, my bloodwork showed that I was anemic so my PCP followed up with iron tests and I’m not iron deficient. So she ran another panel and it showed that yes, I was anemic and she referred me to a hematologist. My appointment with the hematologist is in January but I’m also on a cancellation list so hoping it’s sooner than that…
Anyway, I was hospitalized on Saturday and again I was shown to be anemic. I was not hospitalized due to the anemia so it an incidental finding. The doctors have given me a preliminary diagnosis of something called Acquired Hemolytic Anemia (triggered by my autoimmune diseases). The treatment is usually some sort of blood infusion but my anemia hasn’t reached a point that I need that yet… so I wait for the hematologist for the next steps.
I’m just wondering if anyone else has dealt with an anemic condition that isn’t due to iron deficiency. Honestly, the idea of a blood transfusion kind of scares me… lol
Physician here. Yes, not all anemia is from iron deficiency, blood loss or absorption problems. There are many causes, one reason you are scheduled to see a specialist. Transfusing is done with attention to risks and benefits much more than decades ago so if you are told you should get blood, do so. The difference in how you feel with severe anemia and after a transfusion can be remarkable. From some of your other threads and posts it sounds like you have some chronic health issues- good luck managing them. You can do a search online and learn quite a bit- you can also misdiagnose yourself and scare yourself as well.
Thanks, wis. New area for me because I thought all anemia was iron-deficient.
The ER docs didn’t recommend the transfusion because I wasn’t that far along and deferred to hematology. My PCP wants me to get a blood test every few weeks until my hematology appointment to make sure it doesn’t get significantly worse.
One of the treatments my hospital doctor team suggested was prednisone but since I had such a horrible time with it the last time I had to take them, my rheum and PCP said no.
About 8 years ago, my mom had drug-induced autoimmune hemolytic anemia which was a reaction to nitrofurantoin that was prescribed to treat a bladder infection. Her main symptom was extreme exhaustion.
She had to take prednisone for years because of this condition. She might still be on it. She didn’t have a blood transfusion.
OP- your “rheum” doctor may have you on needed stuff that could be part of your problem. Perhaps you can discuss with that person while waiting for the other appointment. All drugs have side effects, some come after months/years.
I did send him an email and he said he doesn’t think any of the meds I’m on could trigger it. I have a face-to-face appointment with him in a few weeks though and it’s definitely something I’m bringing up.
I have been pretty badly anemic as a result of blood loss (hematocrit 24) in the past, and it was quite debilitating. Couldn’t climb a flight of stairs without panting, faint after working on my feet for a while, etc, even though I was taking an iron supplement throughout in an attempt to forestall the anemia. It too a number of months after the bleeding stopped for me to recover, They told me that they commonly infuse people with my hematocrit. Honestly, at the time I wished they would, because the exhaustion was not easy to remedy.
None of this helps your situation, I would gather, but I wish you well.
This is the tricky thing- we don’t know whether fatigue comes from the anemia or the lupus or anything else going on. It makes treating anything so difficult
My father and I both suffer(ed) from chronic anemia not related to iron deficiency. He and I both have autoimmune disorders. I was tranfused only once, after the birth of my first child and diagnosed for the first time as anemic when I was 6 or 7 years old.
Forgot to mention my hemoglobin is usually around 9 or 9.5. Every once in awhile it will come in at 11. A few years ago it was 14 for a whole year which was good to see but typically I don’t give blood when our company has blood drives.
A close friend discovered she had Celiac disease and her only symptom was anemia. No gastro issues at all. She also was diagnosed with Lupus several years before. Best of luck to you.
My hgb is usually in the 9s. Got to 6.6 thanks to an internal GI bleed (late effect of chemo plus cardiac blood thinners) and my cardio sent me straight to the hospital. She couldn’t believe I had taken the Metro downtown and walked half a mile to her office. I was tired, but no more than usual. Note to docs and self: this is twice I’ve had life-threatening illnesses and the fatigue didn’t faze me.
Anemia without low iron is a real thing. I hope your docs figure this out. Are they talking to each other? How are your courses? How is Mr. R doing?
I’m in the low 10s right now but it’s been dropping steadily for a few months.
They are talking to each other, but since I don’t have a hematologist yet, s/he’s not in the mix. My PCP and rheum especially are in close communication. I have an appointment with my PCP next week already.
Courses are going OK. I took ones specifically that I knew would be beneficial but not theory and reading heavy and then my third one is an independent study with my advisor. My advisor has gotten me out of teaching this whole year which has been helpful beyond measure.
Mr R is doing all right. He was in the hospital with me until my dad came and ordered him to go home and sleep. He wasn’t going to do me any good if he died of sleep deprivation (he had tried to sleep the first night but every time I or the machines made a noise, he woke up and then had a hard time going back to sleep). When my attack happened with the morphine, it was the first time I’d ever seen get teary out of fear. Overall though, he’s holding up very well. Better than I’d be in his position.
That’s interesting… I have a few friends who are anemic and have celiac’s. I always assumed it was because of their pretty limited diets (this was back in college when they were still trying to figure out how to live with their celiac disease).
I have been tested twice for celiac’s and came back negative both times (two different doctors). I haven’t actually been tested since I got sick though… is it possible to develop it later in life if you tested negative before?
Actually, I should go back and look through my blood tests and see if I have been tested for it since. I have had literally hundreds of different blood tests so it’s possible that it’s buried in one of the reports lol.
What ever’s going on, I hope they get it figured out and that the fix is easy and effective. Watch yourself over the holidays…it’s a great time to over do it and not rest enough. Keep things low key, and stay well. Your health comes first. Best wishes!
