Any thoughts on anemia with no bone marrow or genetic issues?
My hemoglobin, RBC, and HCT have been low ever since I had hip replacement surgery and then a few months later 2 days of gushing nosebleeds. This was all almost a year ago, but my counts have not recovered. I had a recent bone marrow workup showing nothing. My hemoglobin recently tanked down to 10.1, but my PCP is not as concerned as I am. My LDH is high and my haptoglobin is low. I have RA so my PCP thinks it is just from chronic inflammation, but my SED rate is low and has been consistently low for about 3 years as my RA is well controlled. I am having repeat lab work in a week. My iron is low normal, but saturation is low. Anyone have any thoughts? I am concerned with a GI bleed or with autoimmune hemolytic anemia.
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Bleeding gums too?
I'm going to throw something out there to consider...my husband has stage 4 esophageal cancer and is currently in remission. In July, he started feeling poorly, blood counts were extremely low and he was found to have hemolytic anemia. The cause was the question. He was in kidney failure, heart failure and still severely anemic after 2 blood transfusions. He underwent endoscopy to make sure the esophagus looked good (it did) and a colonoscopy because they were certain it must be from a GI bleed. Both tests were negative. His counts were still unusually low and the shape and size of his RBCs prompted our oncologist to order a Babesia panel (a tick borne illness). Sure enough, it was positive for parasites (nasty) that were literally destroying his RBCs, thus the hemolytic anemia. After 2 rounds of antibiotics and anti-parasitic medication, he is finally clear of the infection and feeling better. We live in CT and the entire Northeast is considered endemic for ticks. My husband was never aware of having a tick bite and this type of tick doesn't cause the bull's-eye rash so it'd be hard to notice if not in a visible area.
I just wanted to throw my idea out to you. You might want to ask your doctor about this simple blood test. I hope you find an answer soon.
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3 ReactionsThank you. I live in northern Vermont, and we have tons of ticks as well. I will ask my PCP. She has this idea that my new 'normal' is to have hemoglobin in the 9s and 10s. I would like to know why it has dropped and what to do about it since I have fatigue and increased shortness of breath. I have heart failure, so I already have some SOB, but I do not need more!
Thanks for the suggestion.
@barbarian1 A bit, but nosebleeds and bruising. Fatigue and shortness of breath are the biggest issues.
@lucyvt except for the tick bite, your story sounds very similar to mine. Unexplained fluctuations in my blood panel and my Dr. passing it of as near normal. I remi ded her that what typically happens is I hover just above the low mark to just below it for several months to a couple of years, then takes a sudden nose dive to 8.0 or so. I get a series of iron Infusions, and in a couple of months, I'm back to normal. 3 months later I'm back at the low mark. No idea why. I did learn that if it bothers you, KEEP being a squeaky wheel until you are satisfied. Be a problem until you get results and don't let the medical field off with "It's just inflammation".
Thanks for the response. Once they know you have RA, everything gets blamed on that. My sed rate has been 6 for years - no real inflammation, but let's blame everything on that. She doesn't even want me to get an iron infusion as the side effects might impact me. I already have heart failure, so the extra shortness of breath and fatigue makes me so blah everyday. I just want to be healthy for my hip replacement surgery. I usually do a good job of being an advocate, but sometimes I get so tired of fighting and pushing.
It sounds like you are using Dr. Google or "Dr AI" looking for help, which of course they can not do. After reading your history, as a non-doctor, but well-informed about medical issues, why are you not contacting/seeing a hematologist and/or other person like a rheumatologist to do these things:
1. All of the testing to rule in or out any possible autoimmune disorders.
2. A hematologist, versus your "unconcerned" PCP, who should be paying attention and ordering more tests, but apparently is not very on-the-ball, trying to figure out your abnormal labs.
???
I would not be wasting ANY time in connecting with a hematologist and rheumatologist, despite the lackadaisical attitude of your PCP!
@lucyvt Dump your PCP and see a hematologist, who, at this point, can order all necessary tests for AI diseases, ticks, parasites, and other relevant tests. Your PCP obviously thinks this is normal, and as a non-doctor, even, I would say IT IS NOT NORMAL, and is risky, especially with your CHD and your MUS and Dyspnea (which could also be your CHD, of course).
Quit wasting time online and make some phone calls. We cannot provide you with the tests.
@circawdm Sorry - I thought the subject line or header and the statement about a full bone marrow work up was enough to indicate that I had a recent workup with a hematologist - no bone marrow or genetic issues were found. I see my rheumatologist every other month or so, more frequently if warranted. She gives me good advice and helpful things to ask my PCP. She cannot order a colonoscopy or endoscopy or iron infusion. She also cannot refer me to gastro for any of that. My PCP has to. Thanks for the input. My hematologist had a lot of energy when I first saw him, but once all my test were negative, he was dismissive and told me to follow up with my rheumatologist and PCP.
@circawdm This anemia has been on-going for a year. I have not been wasting time online but just trying to find a community for positive thoughts and ideas - from people who have been through issues like this. I have seen my PCP a number of times, a hematologist twice, had a bone marrow biopsy and other work ups. I have seen my rheumatologist at least 6 times in that year. I have been asking the questions and do not need negativity from others online. I do not have CHD, but have HEpEF.