Persistent low white blood cell count? Mention of scary diseases.

[lula]

Ok, reasearching is making me crazy (and feeling like I need to go check my will immediately!) I have a low white blood cell count at 3.6 (the lab low normal end was 4.8) and I had this same count 5 months ago. My doctor didn't mention it until I looked at my chart and asked why my count was so low. He then decided to tell me that it can be a sign of leukemia, rattled off a few names of incredibly scary, incurable types of leukemia and that we should monitor it. At that point he chatted with me about literature and walked out of the room.Honestly, I felt like I was in shock and sort of froze through the whole literature conversation so I am sure it looked like I was incredibly calm.

 

Not suprisingly, I am FREAKED out, like so freaked out I can't sleep freaked out. I called the nurse back to get the numbers explained to me and she said we should just monitor this, not worry about it, even if I have a problem it may not show up for years. Um, yeh.

 

So I have an appointment in 3 weeks with a hematologist. (I called from the car today and that was the quickest they could get me in without it being a direct emergency. I will call a few more doctors tomorrow to get a quicker appointment.)

 

I did not have a cold, flu, or infection that I am aware or had any signs of for either blood test so it doesn't seem to be a temporary thing. I am now vaguely aware of having low white blood cell counts two other times but both of those times (a few years ago) I actually had an infection and so I just assumed that was the cause.

 

At this point I am sort of hoping for lupus however he ran a ESR test and it came back "normal." Ugh. Any thoughts? I honestly would never think to ask this question here normally but I can actually not sleep and my husband is gone so it's going to be a long night with WebMD and the Mayo website both of which are telling me to make a very short bucket list.

Edited November 8, 2011 by lula

[cloversandlions]

I'm not a medical professional, and I'm not familiar with the scenario, but I did a quick google search and on Medline, this came up:

Drugs that may lower your WBC count include:

• Antibiotics
  
• Anticonvulsants
  
• Antihistamines
  
• Antithyroid drugs
  
• Arsenicals
  
• Barbiturates
  
• Chemotherapy drugs
  
• Diuretics
  
• Sulfonamides
  

By chance, are you taking any of those?

 

Also, on this page, >here<, all of those scary things you mentioned are included in their answer to "What does a low White Blood Cell count indicate?", but it also has this:

 

Vitamin or mineral deficiencies, influenza, typhoid fever, and malaria can also result in a low white blood cell count.

If you are otherwise feeling healthy and well, perhaps taking vitamin/mineral supplements will help? It seems hopeful, anyway, that something this simple might be the culprit.

 

I hope you are able to bump up your visit to the hematologist; I know too well about staying up late and reading about scary diseases. I hope you get answers soon, and I especially hope you find that it's nothing serious after all. :grouphug:

[lula]

Thanks! Sadly (in this case!) I am not taking any drugs/medications, don't have malaria, typhoid, etc. Ugh, sometimes the internet is a curse to sleep. I don't like it when you can narrow down all of the "acceptable" options and the ones left are hideous! :glare:

 

Yes, I am hoping for a quicker appointment. much quicker!

[jplain]

Deep breath. Try to take a cue from your doctor's office staff. They're not freaked out, so while it is a great idea to be proactive and get a specialist's opinion, you needn't freak out either. Easier said than done, I know.

 

While waiting to see the hematologist, keep reminding yourself that while you may have had low WBC for a long time, it doesn't seem to be getting worse or causing problems. Things that are serious problems often get steadily worse over time. Things that are benign often get better or stay more or less the same. Tell yourself that you're in good health now, and there's no good reason to suspect that'll change anytime soon.

 

Call your doctor's office and get copies of all of your labwork, both for your own records and to take with you to the hematologist.

 

Have you had just a CBC, or have they drawn a CBC with differential? If it was a CBC with diff, it would include a breakdown of things like neutrophils, monocytes, eosinophils, basophils, etc. These are all specific types of white blood cells. Knowing whether one or more of your white cell subtype numbers is abnormal can help narrow down the possibilities.

 

If the last test was just a CBC, ask for a CBC with diff now, before you see the hematologist.

 

Hang in there. We had a small scare with DD a couple years ago. She had routine bloodwork done at the same time she was tested for Lyme disease (which was negative). Her WBCs were low, and two of her differential numbers were way out of whack. Our ped said he wanted to re-draw in 2 weeks; he said either she was recovering from a virus that can attack a particular type of white blood cell, or she had some more serious problem with her immune system and would need to see a hematologist. He leaned toward virus, even though she'd had no viral symptoms recently. When I Googled, I found lots of scary diagnoses, but it also confirmed that a virus could have caused the strange numbers. Thankfully, her numbers were back to normal at the next check.

Edited November 8, 2011 by jplain

[kalanamak]

Deep breath. Try to take a cue from your doctor's office staff. They're not freaked out, so while it is a great idea to be proactive and get a specialist's opinion, you needn't freak out either. Easier said than done, I know.

 

 

Lots and lots of people who are not sick with other things have a ho-hum low WBC. Isolated low WBC without fevers, weight loss, etc. etc. and no other lab abnormalities is a NON-PANIC condition until clearly proven otherwise. Personally, having seen so many, unless I had other issues, I wouldn't be even following up on on it, but I am definitely anti-go-to-the-doctor. :D

[LizzyBee]

Thanks! Sadly (in this case!) I am not taking any drugs/medications, don't have malaria, typhoid, etc. Ugh, sometimes the internet is a curse to sleep. I don't like it when you can narrow down all of the "acceptable" options and the ones left are hideous! :glare:

 

Yes, I am hoping for a quicker appointment. much quicker!

 

Any update? I hope you are doing okay!

[kalanamak]

 

Yes, I am hoping for a quicker appointment. much quicker!

 

Red herring, I hope?

[iamrachelle]

Lots and lots of people who are not sick with other things have a ho-hum low WBC. Isolated low WBC without fevers, weight loss, etc. etc. and no other lab abnormalities is a NON-PANIC condition until clearly proven otherwise. Personally, having seen so many, unless I had other issues, I wouldn't be even following up on on it, but I am definitely anti-go-to-the-doctor. :D

 

:iagree:

 

Sometimes it helps to narrow down an illness based on the type of WBC that is low...

[Debbi in Texas]

Hopefully this will make you feel better:

One of the characteristics of leukemia is a High White count, not a low one. My dh has had chronic leukemia for going on 15 years, so I am quite familiar with the counts. at diagnosis his white count was 35,000.

 

Do get it checked out.

[eight_gregorys]

It could be anything or nothing. My white count was 2.9 when I was diagnosed with lupus. My sister had a wbc count in the low 3's and it went back to normal and nothing was ever found. I wouldn't worry until you see your doctor.

[LizzyBee]

Hopefully this will make you feel better:

One of the characteristics of leukemia is a High White count, not a low one. My dh has had chronic leukemia for going on 15 years, so I am quite familiar with the counts. at diagnosis his white count was 35,000.

 

Do get it checked out.

 

I was wondering about that too. I have CML and my wbc count was 317k at diagnosis. There are some people on the LLS CML chat boards who were diagnosed with high platelets and normal wbc, but I can't recall anyone saying they had low wbc at diagnosis.

 

If you don't mind me asking, does your dh have CLL, CML, or something else? It's kind of a lonely diagnosis since it's not that common. If it weren't for the internet, I wouldn't have any interaction at all with other CML patients.

 

ETA: I did just find this site about AML that says the wbc count can be high, normal, or low at diagnosis. http://www.nlm.nih.gov/medlineplus/ency/article/000542.htm. I hope Lula is okay.

Edited December 23, 2011 by LizzyBee

[TravelingChris]

You need to see a rheumatologist. Regular family doctors can't diagnose lupus or exclude it. I have had a close relative disease of lupus for years and only a few times have had elevated ESR. Most of the time I didn;t. It is not a diagnostic test. There are many other tests that are much better for lupus.

 

I usually have low white blood cells and it isn't considered unusual with my diseases and medications. Nobody thinks I have leukemia.

[Debbi in Texas]

I was wondering about that too. I have CML and my wbc count was 317k at diagnosis. There are some people on the LLS CML chat boards who were diagnosed with high platelets and normal wbc, but I can't recall anyone saying they had low wbc at diagnosis.

 

If you don't mind me asking, does your dh have CLL, CML, or something else? It's kind of a lonely diagnosis since it's not that common. If it weren't for the internet, I wouldn't have any interaction at all with other CML patients.

 

ETA: I did just find this site about AML that says the wbc count can be high, normal, or low at diagnosis. http://www.nlm.nih.gov/medlineplus/ency/article/000542.htm. I hope Lula is okay.

 

He has CLL. We know no one else with the disease, either. We were told that usually this is an "elderly"disease, but they are seeing more of it in younger people. He was 36 at diagnosis. What about you?

[Laurie4b]

Wow. What a jerk of a doctor you have. So sorry! You'd think anyone with half a brain and half a heart would know that it would upset a patient to rattle off scary sounding diseases with no other context or explanation. I would, however, take a cue from the fact that you have had low white counts for some time and your doctor has not sent you to a specialist. (When you have an infection, your white counts should be high, not low.) Try to set it aside and wait until you've talked with the hemotologist. Try to think of it this way: if nothing is wrong, scaring yourself with worst case scenarios for the next few weeks will have stolen some precious days of your life! If something is wrong, scaring yourself with worst case scenarios also does nothing to help you. You have done what you can that is productively helpful: you've gotten an appointment with a specialist. Stay off of google, remind yourself that your doctor wasn't particularly worried, and enjoy your Christmas. (After Christmas, I'd get another primary care doc. No one should have to go through that.)

Edited December 24, 2011 by Laurie4b

[LizzyBee]

He has CLL. We know no one else with the disease, either. We were told that usually this is an "elderly"disease, but they are seeing more of it in younger people. He was 36 at diagnosis. What about you?

 

I was diagnosed in June at 47 yo. I think my age is pretty average for a CML diagnosis.

[LizzyBee]

Wow. What a jerk of a doctor you have. So sorry! You'd think anyone with half a brain and half a heart would know that it would upset a patient to rattle off scary sounding diseases with no other context or explanation. I would, however, take a cue from the fact that you have had low white counts for some time and your doctor has not sent you to a specialist. (When you have an infection, your white counts should be high, not low.) Try to set it aside and wait until you've talked with the hematologist. Try to think of it this way: if nothing is wrong, scaring yourself with worst case scenarios for the next few weeks will have stolen some precious days of your life! If something is wrong, scaring yourself with worst case scenarios also does nothing to help you. You have done what you can that is productively helpful: you've gotten an appointment with a specialist. Stay off of google, remind yourself that your doctor wasn't particularly worried, and enjoy your Christmas. (After Christmas, I'd get another primary care doc. No one should have to go through that.)

 

Lula's hema appt should have been around the end of November since her original post was on Nov 8. She hasn't been on the boards since December 4. I emailed her and haven't heard back, so I am hoping she is just busy with Christmas preparations and not sick.

[Guest shiggity]

A follow up on what the cause was is probably the most valuable data for others searching for this topic. That said, she seems to be doing OK based on her profile activity.

 

I have a similar condition with a similar upcoming visit to the hematologist, I'm similarly freaked out about it, and you can imagine what it's like to find people in a similar situation, only to see they never followed up on what happened. Makes the anxiety worse.

 

I realize most of the time people post such topics to ask other people what they think is wrong with them, rather than to provide data to others, so they aren't very inclined to post back. Either way, they eventually get their answer from the doctors and there's no innate motivation to share. But if you have the time, please share. I dream of a world where people provide so much public data that it could be statistically analyzed and provide not only a probability that someone has a certain condition but help develop cures for diseases with that kind of information. Unfortunately, as a species, we are inherently selfish, and humanity's own progress is continuously working against that.

[lewelma]

My son officially has "chronic benign neutropenia." It is as you describe - chronically low white blood count. yes, we went through ALL the tests when he was 6. Leukaemia was one of them.

 

Let me explain how it works. The human white blood cell count is on a bell curve. Every person does not have exactly the same number. The tests give a STAR when your number falls below the 2 standard deviate mark so about 2.5%. This means that you are in the bottom 2.5% of white blood cell numbers. I assure you that 2.5% of people do NOT have nasty horrible immune deficiencies. However, at that low level is when they need to start checking. They will run a bunch of tests, probabilistically they will find nothing. But they need to look in case you are one of the unlucky ones. So don't get worried. Just wait for additional test results.

 

Also, statistically Africans have lower neutrophil numbers, so if you have any African heritage you numbers will likely be lower. We always say that my blond haired, blue eyed boy is perfectly normal for an African. Recently, we found out my dh also has low neutrophil numbers. There is a genetic component.

 

Ruth in NZ (who has gone through a leukaemia scare with her oldest and a spina bifida scare with her youngest)

[Twigs]

resurrected thread by 1st time poster

[Parrothead]

Hopefully the OP has a firm diagnosis. Now that it is a year later.

 

(((Ruth))) I'm glad your babies are okay.

[Guest sohmic]

Lula's hema appt should have been around the end of November since her original post was on Nov 8. She hasn't been on the boards since December 4. I emailed her and haven't heard back, so I am hoping she is just busy with Christmas preparations and not sick.

[Guest sohmic]

Hi there.. I wanted anyone who is reading this to know that I had the exact same issue. A really careless doctor who kept using words like cancer, leukemia, aids,, etc. Test after test, she did not let up. I was very worried. I finally when to see a hematologist who took one look at my records and said he was not concerned. He did another round of every test imaginable and I got clear results. Some people just have lower white blood cells.

 

 

Hope this helps.