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Could it be Leukemia with normal bloodwork?
I hope it is okay to post this question here, if not I can take it down or can move it somewhere else. There are not many cancer-related forums or resources for people who do not have a diagnosis.
It is possible to have leukemia-related fatigue, dizziness, nausea, bone/joint pain before it shows up in bloodwork?
I have had fatigue since my teens and I am now 27. It has gotten substantially worse in the last few months and I am once again unable to work because of it, but I have not had anemia until recently and it is only mild and have never had elevated WBC or abnormal platelets. Usually my RBC and hematocrit is high, but in the last 8 months my ferritin has been decreasing.
I have started taking iron supplements recently but am concerned that unless the cause of the anemia is found I am only masking the symptoms.
I am extremely nauseous every morning and it makes it hard to get out of bed. It has been that way since I was a child, especially when waking up early or when I haven't had enough sleep, but now as an adult the nausea has become more severe and happens every morning no matter how much sleep I have gotten. It takes hours to fall sleep even with no screen time hours before bed, I wake frequently due to pain and discomfort in my hips and low back, and never wake feeling refreshed.
In January I started physical therapy for chronic back pain I have had since I was a teen that has recently gotten worse. PT decreases my pain but progress has plateaued. I go twice a week, never miss an appointment and do 20-30 min PT exercises at home almost every day. I have been reasonably fit all my life. Since leaving my last job due to fatigue in February I have been trying to exercise more but despite pushing myself and being consistent I have somehow lost endurance and have become even more tired. It use to be that moderate exercise made me feel short of breath, dizzy, and makes me see spots, now only mild exercise is all it takes.
I have an appointment with the cardiologist next week (I have been waiting months) and my GP refuses to repeat my CBC from January because the anemia is only mild, there was no elevated WBC and does not see the need for a hematological workup. She thinks the cardiologist will get it sorted. I am not so sure. Resting EKG and echo were normal. BP is normal, HR normal but elevated by about 20 beats when going from laying to standing (not enough for a POTS diagnosis, referral for cardio was for dysautonomia workup).
Been to many doctors over the years, tried a billion dietary changes, supplements, and meds, some things have improved but the nausea, and abdominal tenderness, and fatigue remain. CT for abdominal pain in 2022 revealed mild hepatomegaly but was considered insignificant at the time.
The anemia and hepatomegaly may be "mild", but I feel like death and things have been slowly getting worse for years and I have no answers. I know something is wrong but all the tests are coming up negative, not antibodies for autoimmune disorders.
When I look up the diagnostic criteria for leukemia, I fit many of the symptoms. The stories of people with leukemia are similar to my own, especially with the fatigue, and nausea, and being told or thinking it wasn't a big deal or there was nothing wrong. If I have had this for years I don't want to wait until an inconclusive workup with cardio. But if I convince my GP to run another CBC and there is nothing to suggest leukemia or anything else I don't know what to do. I've heard it's possible to still have leukemia with normalish looking bloodwork. If I do have leukemia and my bloodwork is normal then how will I ever get a diagnosis if my doctor won't run the tests??
EDA: forgot to mention memory problems (lol), difficulty concentrating, and brain fog. Memory problems and nausea are partially remediated by compression socks but are still a problem.
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I am so exhausted with trying to be my own advocate, trying to find answers and being a medical mystery. Lots of symptoms, lots of years, lots of doctors, no answers. I wonder if maybe it could be leukemia but my GP won't repeat a CBC from January because my anemia was only mild and my WBC and platets were normal. I've heard you can have leukemia with normal looking bloodwork, but if that is the case how do people get referred for other diagnostic testing or referral to a hematologist if there is nothing in their blood to indicate a workup?
I wonder if you might have a vitamin deficiency, such as B vitamins. I had low B-12level which was diagnosed with a blood test and only learned about the ramifications afterwards. Mine was not low enough to cause problems.
Hello looking~
My husband's oncologist did Flow Cytometry for DNA / cell analysis -- it revealed leukemia. Specifically, testing revealed ZRSR2, RUNX1, TP53, ARAF, and TET2.3 mutations. All apparently acute myeloid leukemia markers.
If you have insurance to cover the cost and a doctor willing to actually perform these precise tests, you may get information that rules out leukemia. A GP may not be up for this, but a hematologist or oncologist may be interested in finding what's going on with your blood. Your normal platelets and WBC would seem not to indicate leukemia, but anything's possible.
Flow Cytometry is costly. I'm looking at provider charges of $3,200 on one Flow Cytometry test, for which insurance approved and paid $715. Tests were performed three months in a row, and I cannot tell for sure if there were different tests or the same tests three different times- the Dr. is not "very" forthcoming with detail. I don't push him to answer when he avoids answering because I want to maintain goodwill, and insurance so far has paid. If you pay out of pocket, I suspect the full cost would be charged.
I wish you well with your search, and suspect you'll need that hematologist or oncologist to solve this.
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1 ReactionThe National Institutes of Health (NIH) has, or had, a man who specialized in hard-to-diagnose diseases. He was something like a real-life "Dr. House." They might be interested in your case. See https://www.cnn.com/2009/HEALTH/02/03/undiagnosed.diseases/index.html
Next, if you can change doctors to one who is affiliated with a medical school's teaching hospital, you might get a diagnosis.
I would make sure your doctor knows about the iron supplements. Too much iron, especially for men, can be a bad thing.
It might be useful to get a notebook and start recording the diagnostic tests you get, and the results.
If you know a computer geek, maybe look into medical diagnostic software, like Caduceus. See https://en.wikipedia.org/wiki/CADUCEUS_(expert_system) I saw a Nova TV program about it 50 years ago. There was a decision-tree paper version of the program's logic that was made for use in third-world countries also. Maybe there is still research on software-aided diagnosis today, and maybe there is a researcher who could use you as a test case for his software.
Finally, don't let my wild ideas distract you from the ordinary path of keeping appointments and following up with your doctor.
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1 ReactionHave you ever been evaluated for GERD and sleep apnea?
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1 ReactionI've had Vitamin B12 deficiency since 2013, did B12 & B complex injection weekly with no response. Recently my Vitamin B3, niacin, nicotinamide are completely undetectable. Now doing weekly infusions with same results. I have significant neurological related as well as degenerative disk disease. No one can seem to find any answers.
@5qdeletion
You are so right about finding the right specialist. My heart hurt a bit when you said that you don’t get all your questions answered in order to maintain good will with the specialist. Holy moly I’m so sorry to hear that. That’s why we go to specialists, not only to get treatment but to understand what is tormenting our bodies. We should feel as though we are part of the treatment team, not just a passive observer.
I was a medical social worker for the last 15 years of my career and part of what I did was facilitate those difficult conversations with providers when providers are not forthcoming. I always encourage patients and their families to make a list of their questions and take it into the exam room with them when they are seen. Take good notes and check off questions as they are answered to your satisfaction. This way, the provider knows that you want to be an active participant and also as a reminder to him or her that you have every right to know this information.
One can ask questions without making a provider feel defensive. In fact, many are encouraged because of your curiosity and involvement.
I’m so glad that you spoke about this and I hope that you feel supported. Will you let us know how things are going with your husband’s treatment?
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2 ReactionsI noticed your posts were from March. I hope by now you have made some progress getting to the bottom of your problems. I would be suspicious more of an auto immune disorder than a malignancy with your symptoms. I can’t imagine a doctor not repeating a simple CBC to follow the trend of anemia and would certainly consider finding a new one or getting a second opinion. It’s very common for autoimmune disease symptoms to precede laboratory evidence. I have Lupus and had many classic symptoms of it for 10 years before my lupus labs became positive. With your usually high HCT turning to anemia coupled with constant nausea in the morning especially makes me wonder if you have excess acid or an ulcer in your G.I. tract that could be slowly bleeding. You really need a good basic work up to start with and a Doctor who cares enough to investigate and help you. On your CBC the MCV, which stands for mean corpuscular volume indicates the size of your red blood cells. If the MCV is low, it is typically iron deficiency. If it’s normal, it’s an anemia of chronic disease and inflammation. If the MCV is high, it is likely a B12 or folic acid deficiency. Looking at that number on your previous blood count may help determine a direction for future diagnostic tests. Anemia of chronic disease and inflammation would fit with autoimmune disease, and a rheumatologist would be helpful for that. Wishing you better health care and treatable answers soon!