I just got released from a very long hospital stay yesterday. It's been very trying going through this last two weeks. I got the wonderfull bacterial pneumonia and was admitted to my little hospital in Fairview. Low o2 sats, lungs full, fever the whole 9. No fun. After 3 days of IV Rocephin antibiotics and oral Z pack my WBC count was still rising. It was not to high around 13 at that point so doc switched me to IV Zoscyn and added oral Levaquin. My lungs cleared up and sputum samples came back negetive but after 4 more days my WBC count went to 17.1. So my GP sent me to OU hospital in the city. They have no clue on what is making my WBC count so high. I had two teams of doctors looking after me there and no real answers. I no longer have a fever but the fatigue is almost unbearable. The only other symptoms i have is recurring HA and the slightest bone aches. One of the teams had an Endo as the head doc and she suggusted that the steriod use could be the cause? I know that it can elevate WBC count a little but I've only been on the florinef 0.1mg for 3 weeks and for it to keep climbing that high seems unlikely to me. They have also suggusted leukemia or a lymphomia but have done no testing for either one. I got released on very strick instructions that if I had any fever or any new symptoms that I must call 911 and immediatly return to them and I have to stay close by so if one of the blood work tests come back with anything that I can return promptly. Waiting on MRSA and C diff and blood cultures. I'm sure its not C diff and MRSA seems unlikely. Also the other hospital did blood cultures and came up with no growth. They checked for endocardiitus also and was neg. So after that long story I guess I'm wondering does anyone have expierence with elevated WBC count in association with corticosteriod use and if so was or can it be that high from less than a month of taking it? Or should I be seeking a hemotolgist/ oncologist? Also want to mention that RBC showed anemia. I have POTS and adrenal insuffiency also. Getting very worried.
Hi, I do know that 60mg prednisone can make WBC >20. I suppose you could compare that to an equivalent dosage for fludrocortisone (it's likely not 1-to-1). As far as duration, I'd think that ~month is a long time, and if your dosage was high then you'll have to taper off.
It's not merely a linear relationship, either. IOW, it can fluctuate somewhat.
Neutrophils will increase in number yet show a decline in activity from the drug so immunity can ironically still be decreased.
If your lymphocytes are high then maybe you've got an underlying viral infection that set the stage for the bacteria pneumonia - and could possibly be producing viral hemolysis.
Thank you for your time. I have a couple more questions. Let me start by telling you that the Flurocortisone (Florinef) is a low dose and something that I will have as ongoing therapy for treatment of the POTS. I don't believe that it should cause such a dramatic raise in the WBC count. Also with the Hemoglobin being 9 and the continual rise in WBC despite the many antibiotics seems suspect to me. As for the viral hemolysis would the white count continue to rise after symptoms subsided?
The pneumonia symptoms all have gone except for the extreame fatigue and HA. While in the hospital my spine started hurting like pressure builing up periodically and since my release yesterday my hips and leg bones are achy. It just seems very odd to me that the WBC would increase while symptoms decreased?
Sorry, I see now that you did carefully mention in your original post that the dose is only 0.1mg. Then I'd agree that such a small dose would not likely cause such a high WBC. I'd suppose the endo was reasonably grasping at straws because there is no likely explanation in your case.
(AFAIK the effect comes from the amount of drug, not the amount of time on the drug - i.e., with a high dose the effect comes quite quickly.)
So next you look at the differential: what is making the WBC high, neuts or lymphocytes?
Your Hgb of 9 would account for the tiredness. Meanwhile, you don't have pancytopenia which maybe tends a bit against leukemia. I don't quite know what you mean by 'HA' unless you're referring to hemolytic anemia.
As to wondering whether the infection caused the blood counts to change, or if leukemia weakened your immunity and brought on pneumonia... well that can drive you crazy in speculating without more info. Did you get a blood smear, so they can examine the appearance of your cells under a microscope? That would seem to be the next logical step and could go a long way in alleviating your fears. I don't think you'd need a hematologist for that, so you won't have the wait to get an appt.
For now they seem intent on the possibility of the bacterial infection recurring.
Well the doc called and the blood cultures show no growth and the other tests are neg. So, they are reffering me to a hemo-oncologist for further testing. She thinks my blood counts are indicative of leukemia. Here's to hoping she's wrong. Thank you for the support. Can I ask one more thing, sorry. What makes you think that its NOT leukemia? Might ease my mind. I'd love another answer/option to look into. Thanks again!
Hi, as you know modern medicine is all about probabilities. So e.g. they suspected MRSA because you had bone/joint pain associated with a hospital stay. In the progression, the next thing to test for is leukemia because of the pain + elevated WBC..
Meanwhile, it's not probable that you independently had the pneumonia and the cell count abnormality. It's more probable that one caused the other... or else a third condition caused both.
My thought is to suspect a virus. A virus could have caused your POTS, which came before all else - affecting among other things the blood vessels, especially veins so your blood pools in the legs and causes fainting, etc. Did you happen to have a period of stress before the POTS? Or something else that weakened immunity?
Who knows, maybe the steroid decreased neutrophil activity and that allowed a bacteria to flourish in the lungs already weakened by the virus.
If so, the scenario is rare enough and little understood so that no doc will likely diagnose it. I've encountered some people with a similar condition that had every test in the book, and no successful conclusion. Viruses are mysterious.
Do you have an Fx of autoimmunity or severe allergy? That could account for an immune system that reacts more than usual.
Anyway, if it were me I'd call my GP and say that the hema will want a smear anyway so can the GP write the order so I can take the results to the 1st meeting with the hema. Will it show abnormally structured lymphocytes or not? Will it show excess reticulocytes, or maybe schistocytes (IOW as a clue to whether your anemia is due to lack of production or to destruction)?
Also I'd ask for an order to get a CBC the day before the meet with the hema, unless they've got a counter right there in their practice (which they likely do have).
Also, I'd twice mentioned the WBC differential. If you don't have a copy of the CBC, I'd suggest getting every single one from now on. As a very general indication, neutrophils rise due to bacteria and fungus, while lymphocytes more for a virus. Also, a clue to the type of leukemia is possibly in the % of cells and absolute counts in the differential.
Thank you so much for all the helpfull information!!!! I called my GP today and set up an appointment for Monday to get the WBC diff and the blood smear.
As for the POTS it is genetic for me. There are several different types of POTS, one is brought on by a virus but others from major stresses or surgery and there's the Hyperadrenergic form that is genetic like mine. I have a cousin and his daughter who are formally diagnosed with it and two other suspected people with it in the family. It is a more slowly progressing form and my symptoms started 10 or more years ago but were never bad enough til recently to get the correct diagnosis. So I don't think there is a correlation btwn the POTS and the suspected leukemia. However I did read about a study on a virus that linked POTS and lymphoma. Only one study and nothing solid so who knows.
I don't remember if my leukocytes or neutrophils were high but I do know one was and the other was normal. I know because of my counts they kept me in the hospital for way to long. I'm really hoping it's not leukemia but if it is at least we will be catching it early. Thank you again for all the information. I thrive on knowledge. lol. When I do get my differential and smear back I will post the numbers and hope for more knowledge on what it all means. It's easy to look up the info but I find it so much more helpful to speak with people with actual expirence in the illness.
Thriving on knowledge? That's the best attitude to have :) Especially if it turns out that you have some very unusual condition, and you might help a lot in identifying it.
If it were me, here's what I'd do on Monday: I'd do my absolute best to get a copy of the pathologist's report on the blood smear. The pathologist will write up some paragraphs on what is seen on the blood smear. I'd ask for a copy to be sent directly to me, rather than me having to wait to talk to any doc first. Some places say that they won't do it, that you have to wait for the doc to give it to you. In cases like that, I do my best to go elsewhere and leave them behind. It's your health information, not theirs.
BTW, an important question: do you get flushing attacks, whether or not associated with the POTS?
I do get flushing attacks but not very often. I more turn pale/gray colored. I have been having night sweats also recently. :(
Are you thinking something that maybe I haven't looked into??? That would be awesome. I might add that I have had my thyroid checked several times and its always normal. They checked it b4 my POTS diagnosis. So if that's the path you were headed already a negative on that.
I will be able to get a copy from my GP tomorrow. He always gives me copies of my records. I've asked for them so often that he just already has a copy for me. Do you know how long in general it take to get the final report from the blood smear? I know that the CBC w/diff is only a 30 min or so process. so I'm hoping the smear is a short time also and I can leave my appointment with the results.
Well, I believe I've seen that Hyperadrenergic POTS can cause bone pain. It also causes flushing, if it increases the number of mast cells. Mast cells are almost like blood cells called basophils. So there's a connection to blood cells.
That's all just speculation, of course.
Some quick thoughts:
- I think that night sweats might usually be associated with a blood cancer that has reduced the number of immune cells. But your WBC is high, not low.
- a CBC takes a few minutes for the finger stick, and the automated counter prints a result right after
- a smear has to go to the pathologist to look at, so they have to mail the report to you
Yes, post your results when you get them. Good luck today.
I am suspected to have the Hyperadrenergic form of POTS. I will have a blood test to confirm on my appointment with my Cardio wednesday. I have relatives with confirmed diagnosis of POTS and they think that The H form is the genetic type.
How are you so familiar with POTS? Did you look is up or have some history in dealing with it? I just wonder cause it's not a very common problem and even most doc's don't have an understanding of it.
My basophils count wast normal. I don't remember the exact numbers but I do know it was in the normal range. The numbers that were off were leukocytes and hemo.
Doc said today he didn't want to do another CBC w/diff because I have 10 from the last two weeks and he didn't see the need to puncture my skin yet another time when we have so many already. He is trying to get me into a very good oncologist but he is not taking new patients. So my GP is trying to argue with him cause he want's me to see this one particular doc. Hope to hear today. He wrote on my chart as the dx "Leukocytosis w/anemia indicitive of probable hemotological malignancy" So my second opinion was possible leukemia also. So off to the oncologist I go.
Yes, if you read back, you'll see that I had suggested getting a blood smear right away. But that you get another CBC not now but immediately before any visit with a hema/onc -- unless the hema has a CBC automated counter machine right in his office, which they probably do have anyway.
You can also get copies of your old CBCs from wherever you first obtained them.
Although mast cells are like basophils, they are not the same.
Anyway, I was just speculating that H POTS can cause a Mast Cell Activation (MCA) disorder. I don't want to be an alarmist.
I had my first oncologist apt Tuesday. My blood work didn't indicate leukemia that day but was still really messed up. So he is thinking there is definately something wrong with my bone marrow but probably not leukemia. Although he is not ruling it out yet. He really wants to do a bone marrow biopsy but with all my other health problems he's concerned of the risks for it so, for now we are doing a lot of blood work and a full body and bone scan this next Tuesday. He is thinking it's a lymphoma, multiple myeloma, or lupus. I don't know which it could be cause my symptoms fit all of them to an extent. I'm thinking it sounds more like multiple myeloma though unfortunately.
Here's my Tue blood work findings: CBC showed - Neutrophilia, lymphopenia, aniocytosis, thrombocytosis and microcytic platlets.
My blood smear showed - Nuetrophils at 90 and lymphocytes at 8 the ansio was 1+ and increased pets. Don't know what the pets are been looking but no luck so far. It was hand written at the bottom of the report on the blood smear. Any idea's on any of my new findings would be appreciated!!! Thank you so much for all the other info.
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