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  #1  
Old Sun May 23, 2010, 09:54 PM
Rachel Rachel is offline
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Unhappy Macrocytosis with no explanation?

I am a 35 year old woman with an MCV of 101.9. According to my GP I have enlarged Red Blood Cells or Macrocytosis. My GP has been doing blood tests for 9 months having ruled out b12 and folate defiiciency as well as thyroid and liver disease. I am not a drinker. He sent me to a hematologist who wants to do a BMB and BMA. I am not anemic at this point. My hematologist predicts that I am 5q- and will become anemic in less than 5 years. He also believe that he will find that I have MDS.

I am scared to death of the BMB and the fact that I could have something that could kill me! I am a single mother and sole provider of a 6 year old and am having a really hard time right now!

Being that there are many people on here with MDS, I would love to know your thoughts!

I have no symptoms and the macrocytosis was an incidental finding in a routine CBC. I have no baseline to compare to. Is it possible that a mcv of 101.9 is normal for me? ( I would love to think that!)

HELP???

Rachel
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  #2  
Old Sun May 23, 2010, 11:00 PM
Neil Cuadra Neil Cuadra is offline
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Rachel,

I'm sorry to hear that you have undiagnosed symptoms and that your hematologist thinks it could be MDS. Your red blood cell count isn't low, despite the larger red cell volume. Are your white cell count and/or platelet count low? Low blood counts and the symptoms they produce (fatigue, headaches, bleeding and bruising, infections, etc.) are what commonly lead doctors to suspect aplastic anemia or MDS, in which case a bone marrow biopsy and aspiration is used for confirmation and for a more precise diagnosis. Without those symptoms and unless you've had previous chemotherapy, I don't know why you'd be suspected of having MDS. I'm not a doctor but I'm puzzled about it. Did your hematologist explain the reason?

Are you considering getting a second opinion from another hematologist before undergoing further tests? If so, I suggest going to the James Hospital at Ohio State University where they have MDS expertise, rather than to a local doctor. Don't worry that it's called a "cancer center"; if anybody can rule out MDS, it would be the hematologists/oncologists there. If they don't think you need a bone marrow biopsy I'd certainly take their advice.

The BMB procedure itself causes mild discomfort to some people and is painful to others. The key is having the right analgesics and for the doctor or treatment center to take your concerns about pain seriously. If you end up needing one, I recommend that you ask about it ahead of time to know what they typically use and what choices you have. There's a good forum discussion about it in the Bone Marrow Biopsy thread.

MDS is indeed a scary diagnosis, although 5q- is one of the most treatable forms and researchers are learning more about MDS every day, but you've got plenty of reasons to be optimistic and not assume the worst. Let's hope you can soon forget all about MDS.
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  #3  
Old Sun May 23, 2010, 11:43 PM
Zoe's Life Zoe's Life is offline
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Rachel,

I have to agree with Neil on this one. I can't imagine why the hemo would think MDS. I know lab values vary somewhat, however, my paperwork says MCV high end cut off is 101. This would mean you are barely over normal, which doesn't mean much. So, I would say that it wouldn't be unusual for you to run a tad high as a normal value for you.

If you get your paperwork with your labs, you will see your values, and a range for normal. It may be reassuring to see this.

Are there other blood counts that are off?

I do go to the James in Columbus. I love them. They always take time to answer questions and have been helpful with other health issues I have been having--giving me direction etc.

I also have 5q- Other than having to get a shot every 2 weeks, it hasn't been a big issue in my life. I have been on Aranesp for 3 years now. My last labs surprised everyone. My hemoglobin is 11! That is almost normal. I guess I am just trying to say that 5q, while an inconvienience (and admitedly expensive) is far far from a death sentence.

Zoe
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  #4  
Old Mon May 24, 2010, 10:09 AM
Marlene Marlene is offline
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I too cannot believe your hematologist is jumping to a diagnosis at this point. My husband, who is in partial remission from SAA continues to have a high MCV and never once did either of his hematologist suggest he had or has MDS base on the MCV.

IMO, I would get a second opinion before preceding with BMB at this point.

Like Zoe said, get a copy of all your blood work, including your tests for B12 and folate. Hopefully they also check your iron levels, copper, zinc and B6. A low normal B12 does not rule out a B12 deficiency. More current thinking on B12 is that a normal level is at least 500. Many docs still go think that a B12 level of 200 - 400 are good. And to really rule out a B12, they should run an MMA and homocystein blood serum.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Mon May 24, 2010, 12:38 PM
tytd tytd is offline
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macrocytosis

Hello Rachel,
PLEASE do not worry too much. I have had a high MCV for almost 3 decades with no treatment and did not have a bone marrow test done until less than 2 years ago. So try not to let your hematologist scare you. This is just my opinion and not meant to be specific medical advice, but I would suggest that if your CBC is completely normal except for the high MCV, I would just monitor your CBC from time to time and then get a bone marrow test only if your counts drop significantly or if you develop some kind of symptoms. I have heard the experts say that there is no advantage to diagnosing MDS in its early stages, at this point in time, because there is presently no treatment to prevent it. I see no reason to do a bone marrow biopsy if it will not affect your treatment, that is, if you have no anemia, no low white count,no low platelet count or no elevated counts. Try to get a copy of your CBC to see that everything else is normal as perhaps there is some borderline change in your counts that you don't know about. Make sure you are not taking any medications or alcohol that might affect your MCV and like Marlene said make sure that B12 deficiency has been completely ruled out. I would ask your hematologist if it were him and he had a normal CBC except for an elevated MCV, would he agree to a bone marrow biopsy or would he just monitor it with CBCs. Good luck.
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  #6  
Old Mon May 24, 2010, 02:35 PM
Rachel Rachel is offline
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WOW!

Thanks for all of your help! I have another CBC scheduled for Friday along with a complete Thyroid as well.

I asked my GP (whom I have great trust in) for a second opinion and he believes that another doctor would tell me the same thing. We are going to wait for another CBC result before we go ahead with the BMB. If my mcv is the same or higher we will go ahead with the BMB. The hematologist told me that I would have versed and not remember or feel the BMB and BMA procedure.

If it gets to that point and my doctor won't offer a referral then I will go ahead and schedule at the James myself at least for a second opinion. Zoe, are they good with you for BMB's at the James???

I asked the hematologist what he would do if he was in this situation and he told me that knowledge is key and he would do the BMB. He did state that we were being very proactive with this but it would be good to find out. He thinks that if the BMB results show that Chromosome 17 and 6 are affected before I am anemic, than I can be treated with something other than CHEMO.

As far as the B12 deficiency tests, I am in the low/normal range. My doctor had me start taking B12 daily (lots of it) and I had a MMA test. The MMA test came back normal. I was told it would be high if I was truly B12 deficient. HOWEVER, that little thing called woman's intuition tells me there is a B12 problem. Maybe I am crazy but I originally went to the doc because of chest pains and when I was on the B12 the chest pains disappeared. I have stopped taking the B12 and there is a faint reminder of the original chest pain...

Anyways... I will be asking for a copy of all of the blood work results over this last 9 months soon! When I do, I will post and get more of your opinions.

I can't thank all of you enough for responding to my question! As you know this IS a scary thing to have to go through and is definitely changing the way I live my life! I suppose there is some good to that! But then there are days that I am just lost! Thanks for helping me out!!!!!


Rachel
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  #7  
Old Mon May 24, 2010, 04:42 PM
Marlene Marlene is offline
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Hi Rachel,

On the B12.....there are quite a few reasons why people are low in B12. If you are a vegetarian, it could be low; if you are on any acid reflux med, it will interfere with absorption of B12; if your gut flora is out of balance, meaning you have too much of the wrong kind of bacteria, that bacteria consumes the B12; you can have mal-absorption issues...that's where wheat and/or gluten is causing a problem where it disrupts your body's ability to breakdown and absorb B12, then there's the old "stand-by" lack of intrinsic factor" and finally, your body may need the more bio-available form of B12 call methylcolboamin because for some reason you cannot convert the cyno form to a usable form.

And when you supplement with B12, you must add in a B-Complex. The B's all work together.

IMO, I would continue with B12. If he did the MMA after you started supplementing, then you won't get a very accurate reading. It takes a while to really restore B12 and then to correct things that are not functioning as they should. It can take at a minimum of 3 months to restore B12 to a good level. And then it can take a while for things that are not functioning at an optimal level to come back to normal.

Unfortunately, there's not a really good conclusive B12 test. That's why a high normal level is better than a low normal level, especially when you are having symptoms. B12 not only effects blood production, it's critical to the functioning of the central nervous system which includes the autonomic nervous system.

I hope you pursue the second opinion. It's your right.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #8  
Old Fri May 28, 2010, 01:04 AM
Zoe's Life Zoe's Life is offline
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Rachel,

I am about to sign off because it is late and I am tired. However, I wanted to take just a moment to respond to your question about the BMB at the James. All I can say is that I wouldn't want to go anywhere else for one. My first BMB was done by a local hemo. I was stressed, nothing but a local for pain, and they wouldn't let my friend stay with me.

At the James, my friend stayed (that alone helped immensely), I was given ativan, and the CNP who did the BMB was incredible on so many levels. She was very skilled, and expertly finished the procedure quickly, and accurately (my first BMB didn't have an aspirate because, in the words of the hemo, my "bones are deep," read I am overwieght). Additionally, the staff at the James set a tone of calm and even humor which helped dramatically. I did know what to expect at the James since it was my second BMB, that helped, but the staff were the biggest help.

Zoe
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  #9  
Old Fri May 28, 2010, 02:46 PM
Rachel Rachel is offline
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Help with CBC results with diagnosis of Macrocytosis?

Hello Again! I posted a question at the beginning of the week about my mcv results! Thanks for all of your opinions! You are all truly wonderful people! Based on your recommendations, I requested all of my blood test and received the results today! I also had another CBC done today and complete thyroid! Am really hoping those results come soon.

I also contacted the James and scheduled for a second opion! (THANKS MARLENE AND ZOE!) Unfortunately it will not be until July 20!

Here are my results from my CBC's. I will list them as a "range" from the first blood test till the latest. If anyone you can look at them and tell me what you think I would really appreciate it! I will put the out of range values in bold.

August of 09 January 10 March of 10

B12= 273 WBC 4.9 WBC 5.5
Folate 12.4 RBC 3.71 RBC 3.82
MCV 103.8 MCV 102.2 MCV 101.9
MCH 35.5
MCH 34.7 MCH 35.1
White Blood Cell count 5.3 Methylmalonic Acid .14
Red Blood Cell Count 3.91 Ab Monocytes 176L
TSH (3rd Gen) 4.89
(T4, Free 1.1)
(TSH, further testing 4.22 normal)


Agai I really appreciate all of you who are helping me out! So Glad I found this site! Anything you could offer is GREAT!

THANKS!

Rachel
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  #10  
Old Sat May 29, 2010, 12:09 AM
Zoe's Life Zoe's Life is offline
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Rachel,

Everything, except your abs monocyte count looks close to normal if not normal. The normal range I have for absolute monocyte count is .1 to 1.0. Is there supposed to be a decimal in there somewhere? I can't imagine someone having an abs mono count of 176. That would be outrageously high. On your paperwork you should see your result, then in another column you should see a range (for example 0.1-1.0). This range is considered normal. Slight variations outside of this range are not unusual. If I recall, the range means 95% of people will fall into this area with normal counts. That means 5% will still be normal outside this range.

Keep us updated.

Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #11  
Old Sat May 29, 2010, 01:38 AM
lotusbud lotusbud is offline
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Rachel,
two years ago my GP gave me B12 shots, even though my B12 was around 500 with MCV around 100-101, ... I was tired and dizzy; he said that I am using a lot of B12 so I needed a little extra. In fact it helped some for the fatigue, but then I started a rash.. It did not bring the MCV down however.
Red cells seem to have about 120 day life cycle normally, so the red cell that plops into the blood stream should stay there another three months. Consequently things do not happen normally so fast in that realm. As opposed, white cells can fluctuate within days or hours, as I understand.
Good luck!
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  #12  
Old Sat May 29, 2010, 11:28 AM
Rachel Rachel is offline
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Abs Monocytes level

Zoe, according to my paperwork by latest abs monocyte count is 176. It states normal is 200-950 cells/uL. Over the last 9 months this count has changed from 286 to 211 to the 176. It also lists a percentage on the same report with no "reference range guidelines." Maybe this is what you are referring to? Those numbers are 5.4% 4.3% and the latest is 3.2. This is really the number that is most concerning to me because after looking up the function of absolute monocytes I am finding that if they are low, it is showing that there is some kind of bone marrow damage and this seems like quite a rapid drop over the last 9 months. All of the other levels could be attributed to a B12 deficiency.

As for now, I have cancelled the BMB that was scheduled for July 13 with the original Hema, and am anxiously looking forward to my appointment with the hema at the James Hospital.

This is quite a life changing experience and I am definitely so grateful for every day that I have to watch my son and my family! If this turns out to be a B12 problem, I will definitely remain an advocate for those with MDS! People need to know about this especially with it happening now with so many more people! If it does turn out to be the beginning of MDS, I am still here too and will ride this rollercoaster until they figure it out! I am not a person who will give up at this point! I have so much to stay here for

Have a great Memorial Day weekend friends!
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  #13  
Old Tue Jun 15, 2010, 08:10 PM
Rachel Rachel is offline
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update

I originally was to have a 2nd opinion at the James on July 20 but called and was able to get an earlier appointment. I went to see a hematologist named Dr. Wurster. After looking at my results and hearing my story so far he was a liitle shocked at the first hematologists ideas. He said that diagnosing me with MDS would be about #37 on his list! A little comforting! He ordered all kinds of blood tests and asked me to come back in 6 weeks (which ends up being mid July) He suspects that I may have a thyroid problem but with my past thyroid test results, that diagnosis is not clear to me either. My past tests for Thyroid were TSH 4.89 (high), 2nd TSH testing was 4.22 (normal) T4 Free 1.1 (normal)t4 total 11.9 (high).

The tests that Dr. Wurster ordered include
CBC differential platelet
Basic Metabolic Panel
Ferritin
Reticulocytes
Folate
Vitamin B12
Bilirubin
Haptoglobin
Lactate Hydrogenase
C Reactive Protein
P1 Linked AG
T4 Battery
TSH

I am not supposed to go for results until mid July but am hoping I can call and request a copy before then!

I have done some research on the tests that have been ordered but wonder if these tests are looking at a bigger picture?

Hope you are all doing well! Thanks for all of the help!
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  #14  
Old Wed Jun 16, 2010, 10:23 PM
Rachel Rachel is offline
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Newest Results!

Hello Everyone!

I picked up my newest set of results today. Unfortunately I am not to go back to the doc until the end of July. Maybe they will mean something to some of you?

T4 Total Thyroxine 12.7 H
T-Uptake .73L
Free Thyroxine Index 9.3
TSH 4.272

HEMATOLOGY
WBC 4.9
RBC 3.76
HGB 13.8
HCT 38.8 L
MCV 103.2
MCHC 35.5
RBC Distribution 12.0
Platelet Count 268
Mean PLatelet Volume 6.5L
Grans, Electronic 69.3
Lymphs, Electrom 24.5
Monocytes, Elect 3.1
Eosinophils 2.4
Basophils .74
Grans, Absolute 3.4
Monos, Absolute .2
Lymphs, Absolute 1.2
EosAbsolute.1
Baso, Absolute .0

Retic Count 2.5 H
Retic Asbolute .0940

B12 300
Folate Serum 24
Folate RBC 730
Ferritin 171

Haptoglobin 116
C REactive Protein 12.80H


Thanks for your help! I am hoping this means something to someone because I can not find an answer.

THANKS!!!
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  #15  
Old Wed Jun 16, 2010, 11:04 PM
Neil Cuadra Neil Cuadra is offline
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Rachel,

It must be frustrating to have theories thrown at you when you have no symptoms of anything wrong, and no diagnosis from the doctors. I hope this turns out to be much ado about nothing and that the doctors tell you that when they have all the facts.

It's hard for us laypeople to give you guidance, and I know nothing about thyroid problems, but in my opinion we're the wrong website for you, and that's good news! It again seems far-fetched to suspect MDS with blood counts like yours and no symptoms. Still, if you learn what's going on at your appointment next month, I hope you'll let us know.
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  #16  
Old Mon Jul 12, 2010, 08:29 PM
ocelot ocelot is offline
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Thumbs up Re: Macrocytosis and low RBCs

Rachel,

As a patient with a very similar set of lab results and clincal experiences, I would try to reassure you that, whatever your present symptoms, it doesn't look like you have MDS.

For what it's worth, aside from your thyroid, C reactive protein and low monocyte results, I have had nearly identical lab results over the last 18 months. The CBC has shown MCV in the 103 to 108 range, with RBCs of 3.2 to 4.1, slightly low hematacrit, hemaglobin at the low end of the normal range and MPV of 6.4-6.9. By the way, all of the CBC results can vary out of the normal ranges from time to time; 5% of the healthy population will show an abnormally high or low result on a test on any given day. It is only where the abnormal result persists for months that you should be concerned.

After my hematologist followed my test results monthly for seven months, and having ruled out all other causes of the low red blood cell counts and macrocytosis (including a few medications that theoretically could affect folate metabolism), I had a bone marrow biopsy last winter.

I resisted the biopsy but now feel it was worth the trouble and expense. The biopsy results showed: some megaloblastic changes (i.e., malformation) in red blood cell precursor cells, increased iron stores and lymphocytic aggregates with some fibrotic infiltration. There also were no cytogenetic abnormalities. The biopsy was deemed non-diagnostic, but the pathologist could not rule out either early MDS, myelofibrosis or idiopathic cytopenia of undetermined significance (a mouthful simply meaning they don't know why some of your blood counts are low). The hematologist told me that there is something amiss in my bone marrow but that it is not anything serious or worth worrying about.

The bottom line is that the blood counts you and I exhibit are not low enough to qualify for inclusion in the MDS diagnosis unless there are significant dysplasic (malformed) changes in the blood cell precursors in the marrow or cytogentic abnormalities in cells taken from the bone marrow aspirate. In your case, the thyroid, monocyte and C reative protein results probably require further investigation. C reactive protein can be a marker of many conditions that involve inflammation as either a primary or secondary aspect of disease. I would ask your hematologist for a further explanation of the thyroid and CRP results at your next appointment. The monocyte values should also be followed. If they remain low it would be further confirmation of the need for a biopsy.

I would not be hesitant to undergo a bone marrow biopsy of your hemo cannot attribute your CBC results to a thyroid condition. The biopsy was quite painless, in part because they gave me small amounts of fentanil, which they sometime use to knock you out when you have a tooth pulled. It didn't render me unconscious, and in fact I talked with the staff throughout the procedure. I went through a whole lot of worrying about it beforehand and wish I had had it done much sooner.

I happened to have gone in for my most recent six month follow-up today. My CBC is unchanged and the doctor wants me back in another six months. If things remain stable then he will put me on a 12 month follow-up schedule.

In short, there is no reason to assume or expect that you have MDS or any other serious bone marrow problem at this point. I would be interested to hear how it goes for you from here.

Best of luck.



Quote:
Originally Posted by Rachel View Post
Hello Everyone!

I picked up my newest set of results today. Unfortunately I am not to go back to the doc until the end of July. Maybe they will mean something to some of you?

T4 Total Thyroxine 12.7 H
T-Uptake .73L
Free Thyroxine Index 9.3
TSH 4.272

HEMATOLOGY
WBC 4.9
RBC 3.76
HGB 13.8
HCT 38.8 L
MCV 103.2
MCHC 35.5
RBC Distribution 12.0
Platelet Count 268
Mean PLatelet Volume 6.5L
Grans, Electronic 69.3
Lymphs, Electrom 24.5
Monocytes, Elect 3.1
Eosinophils 2.4
Basophils .74
Grans, Absolute 3.4
Monos, Absolute .2
Lymphs, Absolute 1.2
EosAbsolute.1
Baso, Absolute .0

Retic Count 2.5 H
Retic Asbolute .0940

B12 300
Folate Serum 24
Folate RBC 730
Ferritin 171

Haptoglobin 116
C REactive Protein 12.80H


Thanks for your help! I am hoping this means something to someone because I can not find an answer.

THANKS!!!

Last edited by ocelot : Wed Jul 14, 2010 at 08:58 PM. Reason: typo
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  #17  
Old Mon Sep 27, 2010, 02:58 PM
Carole in Sudbury Carole in Sudbury is offline
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Question Macrocytosis

Hi Rachel,

I'm in the same boat. My red cell were affected only. As their mass went up...their volume went down. My first initial sign was the macrocytosis. I first noticed it on blood work I had done 9 years prior to my first episode of anemia.
My Hmg dropped to 61 or 6.1. Here in Sudbury, Ontario they say 61Hmg. Someone just mentioned to me that it could red cell aplasia. But normally that's either viral or a immune issue. I don't know what to think. I got a clean bill of health 10mths ago and I am very grateful but to sit and wait and see if it returns is "tuff".

Could you give me more detail on what's going on with you? It seems Zoe is also going through the same kind of stuff
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