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    Old 11-07-2004, 10:21 PM   #1
    Oldbones
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    Question Is anyone continuously anemic?

    My hemoglobin seems to be gradually going lower and lower. A few years ago, I always ran a healthy 14.0 - 15.3 or so. Since my lupus symptoms began in 1998 and my diagnosis confirmed three years ago, it seems that everytime I have a CBC, my hemoglobin/hematocrit drops a little. My rheumatologist has been watching it and my latest test was 10.7 (hemoglobin). I know that it's not so low that I should be too alarmed ........... my doctor feels like I probably have chronic disease anemia. I suppose my medications might affect it also. My platelet count has so far remained normal. He has ordered another CBC to be done in one month, plus serum iron, ferritin and Total Iron Binding Capacity. I crave ice all the time and walk around with a cup of ice all the time (typical anemia symptom). I've had upper and lower scopes done to make sure there's no loss of blood from those areas and I'm post-menopausal so no problems there. My creatinine level is also elevated so doc is really keeping an eye on my kidneys too. I'm off Bextra now for a while so maybe it will drop back to at least near normal. Bextra seems to affect my kidneys and I sure don't want kidney problems. Without Bextra, I have more joint pain. Oh well....if it's not one thing......it's another. Do many of you have problems with anemia?

    ~Oldbones

     
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    Old 11-08-2004, 07:48 AM   #2
    Mr. Strangeheart
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    Re: Is anyone continuously anemic?

    Hello,

    I am not anemic but my rbc count has been falling over the past one year. I have some type of undiagnosed autoimmune disease that stubbornly defies medical testing although it has characteristics similar to lupus or scleroderma.

    My white blood cell count has also fallen over the past year. Has your white blood cell count been affected at all? Like you, my platelets are fine.

    -Strangeheart.

     
    Old 11-08-2004, 09:53 AM   #3
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    Lightbulb Re: Is anyone continuously anemic?

    Hey Oldbones!! I've been wondering what was up with you!!!

    I just wanted to say that I have had severe anemia for the past 2-1/2 yrs, requiring two blood transfusions (Dec. 2002 and Oct. 2003). My hemoglobin was 5.3 at its lowest and I think HCT was 19. My last lab results have Hemoblobin at 9 and HCT at 30. But my ferritin level is so low it does not register (it was 1.0 in January and now it just says "less than 5." Only thing is my anemia is mostly related to chronic "bleeding angiodysplasias." But I don't know what is causing me to not respond to the iron pills I have taken 3 X per day for well over a year. Even though my blood counts are better than they have been, I still have shortness of breath, dizziness, lightheadedness and of course, awful fatigue.
    Good luck on getting help with your anemia!!!!!!!!!!!!!!!

    BTW, I have never craved ice even when I was severely anemic!!!! Maybe that is because I have "tooth senstivity???"

    wlm

    Last edited by NOTSONUTSO; 11-08-2004 at 09:55 AM.

     
    Old 11-08-2004, 07:25 PM   #4
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    Quote:
    I am not anemic but my rbc count has been falling over the past one year. I have some type of undiagnosed autoimmune disease that stubbornly defies medical testing although it has characteristics similar to lupus or scleroderma. My white blood cell count has also fallen over the past year. Has your white blood cell count been affected at all? Like you, my platelets are fine.
    Hi Strangeheart..... Thanks for responding. My white cell count is in the low normal range..... 4.6 with normal range being 4.0 to 11.0. My lymphocyte count is low @ 17 (normal is 19-48) and neutrophils are 75 which is a tad bit on the high side with normals being 40-74. I can't find my copy of the CBC done before this one but if I remember correctly, my white cell count was in the low normal range on that one also. Since I'm on an immunosuppressant, I can see where my white cell count could be on the low side. It shouldn't affect my red cells though.

    I find it odd that you have a low red cell count but a normal hemoglobin. Do you have the numbers (along with the normal values)? If you do, would you mind sharing them with me? Also, I was wondering if you have had an ANA done? If I'm being too nosy, just tell me so!

    ~Oldbones

     
    Old 11-08-2004, 08:03 PM   #5
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    Talking Re: Is anyone continuously anemic?

    Quote:
    Originally Posted by NOTSONUTSO
    Hey Oldbones!! I've been wondering what was up with you!!! I just wanted to say that I have had severe anemia for the past 2-1/2 yrs, requiring two blood transfusions (Dec. 2002 and Oct. 2003). My hemoglobin was 5.3 at its lowest and I think HCT was 19. My last lab results have Hemoblobin at 9 and HCT at 30. But my ferritin level is so low it does not register (it was 1.0 in January and now it just says "less than 5." Only thing is my anemia is mostly related to chronic "bleeding angiodysplasias." But I don't know what is causing me to not respond to the iron pills I have taken 3 X per day for well over a year. Even though my blood counts are better than they have been, I still have shortness of breath, dizziness, lightheadedness and of course, awful fatigue.
    Good luck on getting help with your anemia!!!!!!!!!!!!!!!
    BTW, I have never craved ice even when I was severely anemic!!!! Maybe that is because I have "tooth senstivity???"
    Well Hellooo Wana Lee

    I can't imagine how you felt when you hemoglobin was at 5.3! I don't see how you kept from fainting every time you stood up. Even though your hemoglobin is now 9.0, that's still low enough to cause lightheadedness, fatigue and everything else you mentioned. I just feel tired a lot but I think most of that is from Lupus. Sometimes I can feel my heart pounding in my head if I get up too fast. My hemoglobin went from 11.9 to 10.7 in two months time. My hematocrit is 34.3 which is barely normal. Some of the other tests in the CBC differential are a little out of whack too. MCV is 98.3 (N=80-100) MCH is 30.6 (N=27.0 - 34.0) Red Cell Count is 3.49 (N=3.80 - 5.10) MCHC is low at 31.1 (N=32.0 - 36.4). My white cells are a little reversed with more neutrophils than normal and too little lymphocytes. Like I said in my post to Strangeheart........I'm not too concerned with that.

    I'm not familiar at all with bleeding angiodysplasias but just guessing, I would think that you have some leakage from your vascular system. I'll have to research that or you can enlighten me in your next post. I know of one lady that lives nearby who has scleroderma. She has problems all the time with the blood vessels in her stomach leaking blood causing anemia and a host of other problems.

    It's probably good that you don't crave ice. It's not good for your teeth.

    ~Oldbones

     
    Old 11-09-2004, 07:53 AM   #6
    Mr. Strangeheart
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    Re: Is anyone continuously anemic?

    Hi Oldbones,

    You certainly are not being nosy. I appreciate this disucssion. Before I share these results I want to clarify though that nobody has said I am anemic in any way, shape or form. It is just that over the past year I see a definite trend downwards in both my rbc and wbc numbers - even though they are all still completely in the "normal" range.

    Here are my latest results:

    WBC count = 4.8 (normal 4-10.5). This is down from 5.2 ten weeks ago which was down from 6.3 six weeks prior to that which was down from 7.3 six months prior to that!

    RBC count = 4.78 (normal 4.20-6.0). This was essentially the same ten weeks ago but is holding at a lower level than I used to be a year or two ago when I was always over 5. I have been dieting, however, so who knows maybe that can affect the rbc numbers!

    Others: hemoglobin = 15.5, hematocrit = 45.5, MCV = 95 (this has gone up as my rbc count has reduced in the last year), MCH = 32.4, MCHC = 34.0, RDW = 12.8. Platelets were fine and have stayed at a consistent number. My sed rate was "1" and my ANA was negative. My sed rate and ANA have always been negative - nevertheless I have had definite symptoms consistent with some type of inflammation for over three years now. Although rare, there are apparenty cases where the blood tests do not "work" on some people.

    I know these numbers are not that "off" from normal but it is the apparent trend (particularly with the wbc numbers) that concerns me.

    Oldbones, what was your "RDW" at?

    -Strangeheart.

     
    Old 11-09-2004, 08:17 AM   #7
    NOTSONUTSO
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    Lightbulb Re: Is anyone continuously anemic?

    Hey Oldbones!!!!!!!!!!!!!!
    I just wanted to clarify "bleeding angiodysplasias." Angiodysplasias are a tangled knot of blood vessels (of which I have 4 according to endoscopy which diagnosed them). They don't always bleed but mine are very leaky. The condition is chronic (50 to 80 percent chance of re-bleed) but is never life-threatening. Bleeding angiodysplasias are much more common in the elderly (not there yet although I feel I am getting close!!!!)
    I do have vasculitis and I remember asking gastro-doc if vasculitis could cause this condition. He said no, but I STILL wonder (who am I to second-guess the doctor, huh???!!!)

    I wish I could figure out why I don't seem to be absorbing the iron pills and my ferritin level has continued to fall. TIBC is normal range so that leaves me CORNfused. Obviously, I am absorbing iron from my diet or I would be falling flat on my face with ferritin level so low it no longer registers (???!!!)

    Last edited by NOTSONUTSO; 11-10-2004 at 10:17 PM.

     
    Old 11-10-2004, 06:58 PM   #8
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    Arrow Re: Is anyone continuously anemic?

    Quote:
    Originally Posted by Mr. Strangeheart
    Hi Oldbones,

    You certainly are not being nosy. I appreciate this disucssion. Before I share these results I want to clarify though that nobody has said I am anemic in any way, shape or form. It is just that over the past year I see a definite trend downwards in both my rbc and wbc numbers - even though they are all still completely in the "normal" range.

    Here are my latest results:

    WBC count = 4.8 (normal 4-10.5). This is down from 5.2 ten weeks ago which was down from 6.3 six weeks prior to that which was down from 7.3 six months prior to that!

    RBC count = 4.78 (normal 4.20-6.0). This was essentially the same ten weeks ago but is holding at a lower level than I used to be a year or two ago when I was always over 5. I have been dieting, however, so who knows maybe that can affect the rbc numbers!

    Others: hemoglobin = 15.5, hematocrit = 45.5, MCV = 95 (this has gone up as my rbc count has reduced in the last year), MCH = 32.4, MCHC = 34.0, RDW = 12.8. Platelets were fine and have stayed at a consistent number. My sed rate was "1" and my ANA was negative. My sed rate and ANA have always been negative - nevertheless I have had definite symptoms consistent with some type of inflammation for over three years now. Although rare, there are apparenty cases where the blood tests do not "work" on some people. I know these numbers are not that "off" from normal but it is the apparent trend (particularly with the wbc numbers) that concerns me.

    Oldbones, what was your "RDW" at?

    -Strangeheart.
    Hello again.....
    My RDW is 15.0 with normal values being 11.0 - 15.0. I suspect that because I am mildly anemic, it would make my RDW high because it increases in iron deficiency anemia and some other forms of anemia. Abnormal red cell shapes caused by anemia can increase the RDW.

    I noticed that you Hemoglobin and Hematocrit are in really good shape. It's good that they are stable. Your MCV would change rather easily because your MCV is arrived at by dividing you hematocrit by your red blood cell count. So any variation in your hematocrit or your red cell count could cause a change in your MCV.

    I can see a cause for your concern since you white cell count is steadily dropping. However, it is still in the normal range. There are a lot of different things that can cause a variation in your white blood cell count but since you have a pattern of it gradually decreasing, your doctor should monitor it (as it seems that he is doing). Your hydration level can change your white cell counts as well as medications, low grade infections and even laboratory variations. How is your differential on your white count i.e. neutrophils, lymphocytes, monocytes, eos, and basophils? Are they remaining about the same and are they in the normal range? Doctors not only look at the white cell count but the prcentage of cell types that make up the total count. My neutrophils and lymphocytes are both abnormal but that is most likely because of the immunosuppressant I'm on. At least that's what I blame it on.
    Has your doctor identified what kind of inflammation you are having? Do you have achy joints, fatique or any other significant symptoms? You are right about Lupus not always showing a positive ANA. It's not too often that it happens but it does (something like 5% of Lupus cases).

    Wishing you well.....
    ~Oldbones

     
    Old 11-10-2004, 07:34 PM   #9
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    Re: Is anyone continuously anemic?

    Thanks for your thorough response,

    My situation is bizarre. I have firm diagnoses of raynaud's, sinus tachycardia and supraventricular tachycarida, a hyperdynamic heart (beats too fast all the time for some reason), acid reflux, irritable bowel. I have had many other symptoms besides these diagnoses including: fatigue, swollen and painful lymph nodes, esophagus spasms and swallowing discomfort, a past phase lasting several months of muscle aches and stiffness, neurological symptoms, a past phase of debilitiating fatigue, etc. These things started at the same time after I got hit with a bad case of the flu three years ago.

    Even though I have been diagnosed with raynauds through doppler vascular testing, I am skeptical as to whether it is truly raynauds. I never have the classic color change plus my circulation problems are ALWAYS there - and I mean always. I have to wear chemical warmers in my shoes all the time to keep my toes and feet comfortable because the circulation is so poor to them. My hands are not as bad as my feet but they too are cold much of the time. And the circulation problems seem to affect the rest of my body too as I am just plain cold all the time since getting sick. I also have a strange change in my skin whereas it "blushes" more than it used to and it "dents in" too. My socks and ring, etc. leave impressions in my skin which I never used to have. I asked my doc once what would cause such a thing and he said that blood vessel constriction as occurs in collagen vascular disease could cause these changes. So, it seems reasonable that some type of inflammation could be causing all my problems - yet as I stated the blood tests are always negative and therefore I have no diagnosis. My doc does believe it is theoretically possible that I do have some type of strange inflammation that defies testing and he has even agreed that I could try a round or two of steroids - but I am reluctant to do so.

    You asked about my wbc differential. It is still quite normal although I noticed this last time that the proportion of lymphcytes is as high as it has ever been whereas the neutrophils are getting proportionately lower.

    I appreciate you thoughts Oldbones. If I learn anything new I will let you know. I wish you nothing but the best.

    -Strangheart.

     
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