Anemic for a year, still undiagnosed
I was diagnosed as being slightly anemic about a year ago. Stool sample had blood. I had a colonoscopy done, Doc removed 3 hyper plastic polyps, benign. I saw an oncologist after that. He said if anemia gets worse, you need to have a bone marrow biopsy. Biopsy was negative, undiagnosed. Since then I have blood/labs done every 3 months. Last labs were done 2 weeks ago. Hemoglobin is slightly low, but stable. Iron is 26, and iron sat is now %. Doc says to take 2 iron pills a day, instead of 1, and repeat labs in 4 months. This is concerning to me, as I'm still undiagnosed. Anyone else have same symptoms, etc?
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Good morning @pamrod02 . I can imagine that you’re very concerned about your health. Yes, the waiting period can be long and miserable. Actually, i went through the same thing. Many trips to the ER and lots of pats on the head. I was finally diagnosed with an autoimmune condition that nobody had ever heard of. The doctor may be studying everything, talking with his colleagues, and trying to figure it all out. All of your lab specimens may have been sent to a place like Mayo Clinic labs for more experienced eyes to review them. But that doesn’t make the waiting any easier.
Don’t give up hope. Remember that lots of medical care can be a waiting game.
Have you thought about going to a large medical center or university hospital for a 2nd opinion?
May I ask what is the condition you were diagnosed with?
@med08 I was diagnosed with an autoimmune disease: chronic lymphocytic inflammation. Autoimmune diseases are no fun and can take years to diagnose, but I’m under the care of a good doctor and am so much better than I was.
Are you asking because you suspect yourself of having an autoimmune disease?
I’m asking for my mom and honestly I was just curious. I like to hear that doctors actually did their job and got to the bottom of someone’s suffering. I’m so glad they figured it out for you. We always, because of what we are all going through, hear the bad side of doctors, etc. it’s nice to know there are some good doctors left. Thank you for sharing. 😊
Hi, no I'm just kind of frustrated because cause of anemia has not been diagnosed.
Hi, and thanks for your reply. How are autoimmune diseases detected? I've been poked, prodded, and tested. I feel like a pin cushion. I have HMO insurance, so choice of oncologists is slim.
CCUS , Clonal cytopenia of undetermined significance
I’ve had a really good experience with my doctor also. Diagnosed after 4 months of tests. Started treatment 2 months later with good response.
@pamrod02 Autoimmune diseases are difficult because the basic symptoms can be the same for many of the diseases. Almost all have fatigue as a major component. Doctors use blood work, detailed medical history, detailed symptoms, etc. You want to find a good rheumatologist, not oncologist, though. Good rheumatologists have their advanced training in autoimmune diseases. One of mine was found by a colon biopsy during a colonoscopy and the other was diagnosed by an MRI which found lesions on my brain.
I hope this helps!
How are you feeling nowadays when you are taking extra iron?
Waiting is difficult when you want an answer but necessary to see if this was a temporary anemia or beginning of something else.
Good point is that nothing serious have been found yet.
If you continue to show abnormalities you probably will see a hematologist- sometimes that could be an oncologist.
Hoping for good results.