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  #26  
Old Thu Apr 28, 2011, 02:32 PM
Tohobo Tohobo is offline
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Neil/Marlene,

Thank you both so much for helping me with my questions lately, it helps me to be prepared for my appointment. I apologize if I sound like a broken record with questions, but it is nice to speak to others who have been in similar type situations and might know what to expect for testing needed.

Right now I'm on the boat of just wanting a BMB to ease my mind, so I can just drop it all together. My biggest concern is that I doubt my ABS retic count is just "normally" around 1-10 range or my retic % is just normal at 0.17% - 0.3%. I understand some people are different and a reference range is not for everyone, but I just can't see it being normal for such low numbers. I understand the fact that Retic count likely doesn't matter if your red blood cell counts are not too low, but I would think it would be an indicator that something may surface in the future.

I think I will go into the appointment with the main question of what is the harm/benefit of doing a BMB and see how she responds. From there I will see how she explains why my so called normal retic at the 15 range is now hovering much lower with all my counts spiking down with it. I know my counts recovered a bit, but who is to say that is always going to happen. I'm not really the worrying type, I think I am just sick of it being in the back of my head over the last year with no answers and with it getting worse, I am eager to find some.

Thanks again for the help you guys. Just out of curiosity, do you know if an extremely low retic count can be normal for somebody if their RBC/HB/HCT stays in at reasonable level or is most likely always going to point to something in the future? Thanks a lot.
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  #27  
Old Thu Apr 28, 2011, 08:39 PM
mausmish mausmish is offline
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I don't have an answer regarding your low retic count but I definitely understand why you want the BMB after a stressful year of not knowing what's going on. I'd have been diagnosed much sooner if a couple of my doctors had been more persistent in testing instead of saying there's probably nothing wrong when I had odd but minor symptoms early on that could be attributed to other less serious or even harmless causes. Sometimes you have to trust your knowledge of your own body and the feeling that something is not right. Peace of mind and conversely, stress play a big part in a person's well being and quality of life. Some people prefer to not know because they fear the worst. You sound more like me, i.e., a known is better than an unknown. Fence sitting is very uncomfortable and the truth is often less bad than all the possibilites running through your mind of things that could be wrong. I am fortunate to have found a hematologist who is empathetic to my point of view. I can't count the number of times when he's said something like, "I'm not too worried about [whatever] right now but I understand your worry so let's test further to make sure I'm right." Other times, he has not done additional testing but explained fully why he didn't think it was warranted. Even then, he left the final decision to me.
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Last edited by mausmish : Thu Apr 28, 2011 at 08:40 PM. Reason: Typo
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  #28  
Old Thu Apr 28, 2011, 09:01 PM
Hopeful Hopeful is offline
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I know viruses can wipe out reticulocytes. You mentioned that you were sick when you had the blood work done. Perhaps they could retest it when you are healthy. That would be an easy next step.
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  #29  
Old Fri Apr 29, 2011, 12:35 AM
Tohobo Tohobo is offline
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Thanks for the post mausmish, I appreciate the understanding.

As far as retesting when not sick, I was fine for the first test when my absolute retic was at 1. Also I had it low everytime I've ever been tested, unfortunately now it is just lower than before. So being sick wasn't likely any influence on the results. Thanks for the information though.
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  #30  
Old Fri Apr 29, 2011, 04:08 PM
Tohobo Tohobo is offline
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Unfortunately, I just spoke to my GP and now I'm quite frustrated. Apparently the hematologist does not want to see me. She thinks that the first test was just due to a virus and since my counts showed signs of improvement, I do not need to see her. She doesn't think my very low retic is anything to worry about. Why would they make a reference range of 25-80, if a 1-7 score is considered nothing to worry about??? I argued, but got no where. Anyways, what can you do. I guess I'll just see how things go and ask to be retested in a few months.

Thanks everyone and sorry if I wasted anybodies time.
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  #31  
Old Fri Apr 29, 2011, 06:25 PM
Marlene Marlene is offline
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Can you go to another hematologist? Or even get another opinion from a different GP?

BTW, you did not waste anyone's time. This why we're here....
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  #32  
Old Fri Apr 29, 2011, 09:12 PM
Tohobo Tohobo is offline
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Hi Marlene, thanks for the comment, I appreciate all of your help.

Unfortunately I live in Canada, so my GP is my source of referrals and she just listens to the Hematologist in this case. Also if I want another GP's opinion I have to switch doctors all together which is hard to do since their aren't many taking patients. I am going to request another test in a month and see if my GP will do it. I am also trying to get answers on the retic count but nobody cares unless I'm severly anemic. I just don't see the point of ranges if 1-7 is acceptable. Also my retic has always been low and my red blood cells have been at the highest borderline low. Also when I mentioned watching the blood levels every few months, the Hematologist said it was not needed. Blah...anyways, I guess that is a good thing.

Thanks again.
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  #33  
Old Sun May 1, 2011, 11:16 PM
MGirl MGirl is offline
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I wouldn't be as worried as much about B12--your MCV has normal. With B12 deficiency, your MCV gets higher and higher while your hemoglobin drops (otherwise known as Pernicious Anemia, the other cause being a folate deficiency). I would be watching that retic count of 7--you need to see a hematologist and I would think they would want to see a full screening set of labs + BMB to ascertain the source of the problem. Reticulocytes are like "baby red blood cells" and are an indicator of how many new RBCs are being made--you need the 'normal' range in order to keep up adequate supplies of matured RBCs--sort of like a "supply-and-demand" chain. Retics have a short life-span, but the average RBC then 'lives' for about 120 days--with less supply being indicated by the low retic count, your hemoglobin may be subject to continued dropping when not enough new RBCS are being produced. Other causes of pure red cell anemia (or 'red cell aplasia') should be considered--your hematologist will know all about this.
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  #34  
Old Mon May 2, 2011, 11:59 AM
Tohobo Tohobo is offline
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Thanks MGirl,

You have the same opinion as all my doctors about the B12. I do agree with what Marlene and others have said though, my B12 should be higher. I don't think it is the complete cause since my MCV is normal, but it is still not ideal at the current levels. I have never thought it was the real issue for the numbers, that is why I've been trying to get an answers.

I spoke to my doctor. She is willing to retest me in two weeks. The problem is, I've had 3-4 tests now come back showing a HB/HCT/RBC at borderline low or mildy anemic with a low absolute retic count each time. Yet even with this the Hematologist will not see me. She just keeps saying it is not a concern until my numbers are lower. My red cells have always been on the low side and they tend to randomly drop and then recover. They never drop to bad levels, but still seems odd to me.

Unfortunately I can't do much at this point. My GP WAS concerned, but now she is not as the Hematologist said I likely have an infection. Not sure how that explains the same results for the last year. From this point I am in wait until it gets worse mode.

Thank you so much for your post, it makes me feel like I am not making a problem out of nothing. I've said it a million times, but why have a reference range when being severely under it is still ok. All the outside opinions here help me justify wanting to find an answer. Thanks again.

As a little extra, I found all my latest tests, here are the results:

June 03 2010
HB: 119 (range 140 - 170)
HCT: 0.34 (range 0.39 - 0.49)
RBC: 3.61 (range 4.40 - 5.70)
ABS Retic: NOT DONE

July 14 2010
HB: 140 (range 140 - 170)
HCT: 0.40 (range 0.39 - 0.49)
RBC: 4.52 (range 4.40 - 5.70)
ABS Retic: 15 (range 25 - 80)

Sept 08 2010
HB: 141 (range 140 - 170)
HCT: 0.39 (range 0.39 - 0.49)
RBC: 4.40 (range 4.40 - 5.70)
ABS Retic: 13 (range 25 - 80)

April 11 2011
HB: 120 (range 140 - 170)
HCT: 0.34 (range 0.39 - 0.49)
RBC: 3.9 (range 4.40 - 5.70)
ABS Retic: 1 (range 25 - 80)

April 20 2011
HB: 128 (range 140 - 170)
HCT: 0.37 (range 0.39 - 0.49)
RB: 4.27 (range 4.40 - 5.70)
ABS Retic: 7 (range 25 - 80)
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  #35  
Old Thu May 5, 2011, 12:52 PM
lindajo lindajo is offline
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The hematologist may know that with those counts she would recommend no treatment for now. I have had little to no treatment for 20 years. Wait and see is a treatment protocol. I have had at least 12 BMB at 3 Centers for Excellence.

I have only been treated for infections as they come up,given transfusions as needed and given B-12 shots. I did try Procrit when my counts dropped suddenly but it didn't help.

I think even if you got a new hematologist that they would wait 4-6 weeks before running more blood unless other symptoms such as fever presents itself. Running too much blood work too soon can skew the results and make it harder to recover if it was a virus. I know it is hard but try and be patient.
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  #36  
Old Thu May 5, 2011, 12:58 PM
Tohobo Tohobo is offline
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Hi Lindajo,

Thanks for the response. What you said makes sense and I'm happy to hear you haven't had much need for treatment over the 20 years :-) I completely understand the wait and treat method, that is fine with me. My problem is I'm in the disregard status with the Hematologist right now. It is only my GP who wants to retest, the Hematologist doesn't want to even see me. I also just felt since my Retic is always so low, even with anemia, that I should have at least one BMB done (never had one before). I'm fine with the fact that the only treatment is wait and treat when needed, but I'd like to know what the cause of my dropping number is by having a BMB. Also if the BMB is not possible, at least regular blood work like every 3-6 months to monitor it, but at the moment I don't have a Hematologist, just my GP who is concerned. Anyways, thanks a lot for the input, I appreciate what you said and staying patient is a good point. Thanks again.
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  #37  
Old Thu May 5, 2011, 04:58 PM
mscrzy1 mscrzy1 is offline
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I completely understand your frustration. My counts are slowly dropping and I think that the only reason why I'm being taken seriously is because I've had AA before. Had I not, I believe that I would be in the same boat as you. I will tell you that I sort of pushed for a BMB to see if we could see if anything was going on. Now that I've had it, though, I can see why they prefer to wait on the BMB because now we have a BMB that didn't really show much. The drs. have said that a BMB taken too early may not show a thing which is exactly what happened to me. The drs. believe that it's too early to see what's going on yet. That may be the case with you. I would definitely push for regular cbc checks, though. There's no harm in checking your counts every 3-4 months and staying on top of it.
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36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #38  
Old Tue May 17, 2011, 03:43 PM
Tohobo Tohobo is offline
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Thanks for the post mscrzy1, I'm glad to see you are being taken seriously. Best wishes to your continued health :-)

I just saw my doctor last Friday and she decided to do another CBC/Retic test, just to see how things have changed over the last few weeks. Here are the results below. The weird thing is, my retic count has now gone up into the normal range (even though the correct retic production index is low), but my red blood cells and white blood cells have gone back in the opposite direction. I decided to calculate my retic production index, just to see if it was adequate. The calculation I found was:

RPI = (reticulocytes% x (hematocrit ÷ 45)) ÷ maturation factor

Since my absolute count is 37 and my RBC is 4, my retic% would be around 0.93%. With my 36 hematocrit, my maturation factor is around 1.5. So if I add in my numbers I get:

RPI = (0.93% x (36 ÷ 45)) ÷ 1.5 = 0.496

I read that a healthy RPI with anemia is greater than 2, so mine is not adequate. The only reason I'm calculating it, is so I can bring it to the attention of my GP when I see her about the results. I see her in 3 weeks since she is away until then. I'm hoping with these new numbers, I will be able to see the hematologist. The hematologist's original theory is this was all an infection and since my 2nd set of numbers went upwards, this test should be normal again. Also my WBC are low again for a 2nd time. Anyways all, I just wanted to give you an update. Thanks a lot!!

Hemoglobin: 123 (range 140 - 170) LOW
Hematocrit: 0.36 (range 0.39 - 0.49) LOW
RBC: 4.0 (range 4.4 - 5.7) LOW
MCV: 89 (range 80 - 97)
MCH: 31 (range 27 - 32)
MCHC: 345 (range 320 - 360)
RDW: 13.5 (range 11.5 - 15.5)
Platelets: 194 (range 150 - 400)
MPV: 8.5 (range 7.4 - 11.3)

WBC: 3.5 (range 4.2 - 11.0) LOW
ABS Neutrophils: 1.82 (range 1.8 - 7.0)
ABS Lymphocytes: 1.09 (range 1.0 - 3.0)
ABS Monocytes: 0.35 (range 0.0 - 0.80)
ABS Eosinophils: 0.25 (range 0.0 - 0.40)
ABS Basophils: 0.00 (range 0.0 - 0.20)

ABS Reticulocytes: 37 (range 25 - 80)


April 11 2011
HB: 120 (range 140 - 170)
HCT: 0.34 (range 0.39 - 0.49)
RBC: 3.9 (range 4.40 - 5.70)
ABS Retic: 1 (range 25 - 80)
WBC: 3.8 (range 4.2 - 11)

April 20 2011
HB: 128 (range 140 - 170)
HCT: 0.37 (range 0.39 - 0.49)
RB: 4.27 (range 4.40 - 5.70)
ABS Retic: 7 (range 25 - 80)
WBC: 5.9 (range 4.2 - 11)

May 13
HB: 123 (range 140 - 170)
HCT: 0.36 (range 0.39 - 0.49)
RB: 4.01 (range 4.40 - 5.70)
ABS Retic: 7 (range 25 - 80)
WBC: 3.5 (range 4.2 - 11)
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