This is my first time posting since diagnosis in September 2022. I am a 63-year-old female, who has otherwise been healthy. I presented with just the higher than normal WBC, but I was sent to the ER after my routine blood draw revealed a drop in my HGB from 13 to 7. I had felt okay -/ mildly tired. However, I had just started experiencing pulsatilla tinnitus. I thought it was from my TMJ. I also have some pain down left side of my neck. No problems with lymph nodes other than those near my breasts, as revealed in recent mammograms. My FSSH test was inconclusive with no info about mutated or unmutated or t/cell deletion.
Oncologist said I might need a transfusion and sent me to the ER. She did not even want me to drive. Now, the ER doctor says I did not even need to come because my count would not drop overnight. What the heck?!
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Goopteal
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Sorry to hear of your confusing experiences with the medical profession. Your oncologist was correct to recommend you seek medical intervention and not to drive. With haemoglobin that low, your concentration would be lacking, given your blood would only able to deliver about 60% of the oxygen your brain needs to function.
The ER doctor is probably not that familiar with CLL, after all it's a reasonably rare cancer. While your haemoglobin is unlikely to drop all that quickly, you may have developed Auto-immune Haemolytic Anaemia (AIHA), which occurs more often with CLL, in which case it could drop faster than the ER doctor appreciated. Irrespective, I expect that you do meet the requirements for a packed red blood cell transfusion (the threshold is under 8 in Australia, but may vary depending on where you live). There's a risk of organ damage when our haemoglobin drops under 6, so you do need reasonably urgent medical attention, to at least find out why your haemoglobin has dropped so that the appropriate treatment can be given to you. That might mean addressing nutritional causes, or treating AIHA or your CLL.
I assume you have informed your oncologist what happened?
Thank you for your fast reply. I am in CT in the U.S. I was with my oncologist for my regular blood draw when the low count was recorded. She sent me to the ER. She is not a CLL specialist, so I am looking at finding one at Dana Farber or MSK. I thank this site for opening my eyes to the need for a specialist. At diagnosis a year ago, the expectation was that I would not need treatment for about ten years. I would like to choose a CLL hospital that is most open to integrated care because I have used alternative medicine for years. In addition to the conventional oncologist, I go to a naturopathic oncologist who found I have B12, zinc, vitamin A deficiencies. I also have Epstein Barr Virus issues.
Please get on the phone today and start making calls to your oncologist, GP, etc. How about an urgent care office? Maybe they could figure out how to get you a transfusion. I had a similar experience early on in my journey and my general oncologist called me and told me to get to his office for a transfusion the next day. He didn’t get much right but he was correct on that point. I felt fine but followed his advice and it worked out. Your longer term goal to get a CLL specialist is spot on but you need help right now.
Definitely echo what Neil has said. You will definitely need urgent medical attention to find out what's behind the dramatic Hb drop as yes, you will absolutely need a blood transfusion. I'm surprised you felt OK. I had a very low Hb but since mine was dropping slowly, I didn't feel "too bad" to begin with but as time went by, I felt extremely tired all the time, could not really do daily tasks unless I really planned ahead (e.g. stopped going shopping as it was too exhausting and spent the time either sorting out the kids or cooking, couldn't do e.g. going for a walk with kids and cook on the same day, or cook and do the laundry on the same day, it was exhausting to plan what I can do so I can still function). It also effected my brain function - I actually thought I was going "crazy" or that I had dementia or something like that. I was extremely forgetful and when sending work emails and checking over them, I still skipped words in sentences, gave incorrect info, used incorrect tenses, it was really quite alarming and I honestly thought something was going seriously wrong with me until I met with a psychologist who explained this is just the effects of my brain not getting the right amount of oxygen over a long period of time...When my Hb dropped to 72, I had a very low blood pressure and felt dizzy when sitting up in bed etc. I was in a hospital then so did not do much else but the nurses were definitely not happy with my low blood pressure.
I've had a Hb of around 75 for many weeks now and I agree with Poodle2 it makes daily functioning very challenging. Everything, literally everything, is such an effort and I want to sleep a lot of the time. Yesterday, I finally agreed to a transition and I'm hoping to feel a bit better.
I agree with the other comments that a dramatic drop from 13 to 7 needs urgent investigation, although if you're well in yourself, maybe not the ER.
Sorry to hear about your low Hb levels. It is really difficult and you only fully realise just how difficult it was once you increase your Hb levels. Hope you get over this period soon and that you get better. I am not sure how I would function at home when it was 72, I was in the hospital at that point with other issues and didn't have to do much apart from eating, sleeping and watching the world go by from the hospital window.
What a nutty/thoughtless doc. When my hemoglobin dropped 30% over a few weeks I got really weak, could barely make it up stairs, and it was higher than yours. How does the ER doc know you don't have a hemolytic process from the CLL, unless they did the tests that take some days to come back? There's no way that ER person could state it would not drop. I doubt ER people have much experience with CLL problems.
I hope you are having some follow up testing from your hem-onc. It possibly might be time to treat your CLL, if another cause of the anemia can't be found.
The kooky comment reminded me of an experience I had with a very young nurse who administered my last Evusheld shot. It's supposed to be a slow SC injection, and an experienced RN will be looking carefully at the injection site during administration. If the patient reports pain, the injection is usually slowed a bit. In my case, I wondered if I was bleeding because I could feel a liquid dripping down my rear end. The RN commented "oh you aren't bleeding, it's the injection, it squirts out sometimes." I was shocked; why on earth wasn't she slowing the injection rate, especially if she noticed this was occurring with some frequency? That's also another thing an experienced RN knows to check for/is a reason why they are supposed to pay attention & slow down the injection rate during a larger volume SC injection. So my last Evusheld got only a fraction of the med inside me.
As a surgeon I can tell you there are multiple causes for a sudden drop in hbg. A major source is the GI tract top to bottom where a lot of blood can be lost very quickly.
You should consider upper and lower GI endoscopy as part of your evaluation. At bare minimum at least 3 separate guiac tests on stool.
Also, a bilirubin level can tell you a lot about heamolytic anemia.
CBC with retic, folate, iron, TIBC, cell size, B12, kidney function etc levels that can help diagnose non CLL causes.
Thank you for the excellent information. If it is GI based, wouldn’t I have some symptoms (pain, blood in stool and/or urine? The team here at Yale, including CLL specialists, are suspecting CLL cause. I was just given a contrast CT scan to check lymph nodes. I was also given steroids and folic acid. They are monitoring my blood leveld and said I will probably need s transfusion. No real physical symptoms other than heartbeat thumping in my ears. (I also have had TMJ for many years.)
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