Macrocytosis Prognosis

by Toni
(Louisville, KY, USA)

I was diagnosed with macrocytosis about 13 or 14 years ago. I didn't think, nor was I led to believe, that this was anything to worry about. However during my last semi-annual visit to the doctor with blood work, I was told that my condition is worsening. Furthermore, I was told that they had ruled out thyroid functions and B12 and folate levels; therefore, "... the suspected culprit is alcohol intake, and I would sugest that you abstain from alcohol."


I'm 65 years old and have been a moderate social drinker all my adult life, but I didn't think it was a problem. However, since I received this latest news, I have quit drinking.

I have tried my best to find out what happens if you don't do anything about this condition. I keep finding information on "causes," but nothing whatsover on what happens if this gets worse or if you don't do anything about it. I did see a brief sentence in one of the articles that it can affect your organs, but it didn't specify which organs or to what extent. I basically am trying to find out how serious a condition this is.

Any information (NOT CAUSES) you can give me will be appreciated. Thank you very much.

Toni

Comments for Macrocytosis Prognosis

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Your doctors are ignorant
by: Kerri Knox, Registered Nurse

Hi Toni,

You've been duped for 15 years by ignorant doctors. You have NOT had B12 deficiency ruled out. Please read my pages on:

Vitamin B12 Levels

and

MCV Blood Test


Then simply follow the directions on the Vitamin B12 Deficiency Treatment page and get another MCV blood test in 3 to 4 months. Chances are extraordinary likely that your MCV count that has been elevated for 15 years will start going back to normal. If it does not, THEN you can start researching how bad off you will be with irreversible macrocytosis. But chances are, it's just B12 deficiency and your doctors are too idiotic to find it.


Kerri Knox, RN
Macrocytosis Outcome
by: Toni

I'm still not getting my questions answered. What happens if this is bad and goes untreated? What kind of disease will I get? Is this something that can kill you?

Thank you.
More interested in you NOT having it.
by: Kerri Knox, Registered Nurse

Sorry, I'm more interested in having you NOT having it by taking some simple vitamins. If you want to continue having an easily fixable problem, then you are welcome to get answers elsewhere. I'm not interested in giving you information on how you will deteriorate if you don't fix an easily fixable problem.

If you want to deteriorate from this problem, you can do it without my help. I try to help people and not watch them go down the tubes unnecessarily. It's strange that you are more interested in the gory details of how you will deteriorate, rather that how taking a few vitamins might help you.


Kerri Knox, RN
I UNNDERSTAND
by: Anonymous

I TOO WAS DIAGNOSED WITH MACROCYTOSIS, I TAKE MULTI VITAMINS AND B-12 EVERYDAY. SO THE INFORMATION YOU ARE GIVING IS NOT HELPING.

I DO NOT DRINK,SMOKE OR HAVE EVER DONE DRUGS. IS THERE A WAY TO FIX THIS AND WHAT KIND OF DAMAGES DOES IT CAUSE...IN DETAIL.
What kind and how much
by: Kerri Knox, The Immune System Queen

What kind of B12 are you taking and how much? Did you read my page on Vitamin B12 Deficiency Treatment and follow the instructions in it as I recommend below?


Kerri Knox, RN
Macrocytosis problem
by: Anonymous

I have macrocytosis as well, and I take B12 every day. Blood tests proved I am not deficient in B12 but rather, have an abundance of B12 in my blood. I too am worried about whether or not macrocytosis can lead to cancer or lymphoma. At least I'm not the only one who has it, but would like to hear from some professional doctors about this condition. I had more tests run by a cancer surgeon, and she could not determine why I had macrocytosis. It is a mystery, but it has worsened since 3 years ago.
MTHFR
by: Kerri Knox, RN- The Immune System Queen

You should check for the MTHFR Genetic Mutation by getting the 23 and Me Genetic Test With MTHFR Testing.

You are probably just not absorbing the vitamin B12, or you are taking the wrong kind of Vitamin B12 since, if you have the MTHFR gene, you MUST have Methylcobalamin B12 and the 'right' kind of folic acid that is MTHFR safe.

You can have high levels in the blood and not actually be absorbing the Vitamin B12 and need to take Methylcobalamin B12 rather than the Cyanocobalamin that you are almost surely taking. Rule this out before you and everyone gets all up in arms about cancer when there are no other reasons to believe that you would have cancer.

The #1 reason for macrocytosis is Vitamin B12 deficiency!

Kerri Knox, RN
B12 question for Kerri Knox, RN
by: Angela

Dear Ms. Knox:

I have been trying to find Methylcobalamin B12 for 5 years, because I read its better than Cyanocobalamin. I am told that it is not available in the US, only Europe. Insurance companies and doctors seem to be in the dark about this......most MD's never heard of Methylcobalamin.

I take monthly injections and am told that I do not absorb pills, but insurance companies & pharmacies TRY to give me a runaround about supplying this vitamin, as if it were a narcotic.

I am well aware of the "created" shortage because B12 is cheap compared to everything else they could prescribe which I don't need.

Unfortunately, B12 is monitored by hematologists working in Cancer Centers. By comparison B12 and the blood tests provide little revenue, whereas a cancer patient is more profitable.

I am searching for an honest, reliable MD who understands the problems of "Pernicious Anemia".

I now monitor all my own blood tests & MMA & Hcy levels because my last MD dropped the ball.

Can you help......in NJ or NY?
Yes, Methylcobalamin available in the US
by: Kerri Knox, RN - The Immune Queen

Yes, Methylcobalamin in available in the US. I suspect that you are just talking to your DOCTOR and trying to get it by prescription. Indeed, it is not available by prescription in the US, but you can just get it over the counter. I offer an excellent Methylcobalamin B12 Supplement in my shop.

Happy shopping! I'm glad that I could solve your problem.

Kerri Knox, RN
MTHRF, Macrocytosis and Infertility or Miscarriages
by: Anonymous

Hi, a while ago a doctor diagnosed me with macrocytosis, at the time, I was drinking fairly regularly and he also tested me for folate and other vitamin deficiencies and ruled those out. So I assumed that was that and lightened up on the beverages.

After a recent miscarriage following a successful IVF, I did a full panel auto immune bloodwork to see if there might be any autoimmune diseases (I"m 41, so we don't have a lot of time left to make a baby).

My bloodwork came back normal except for one MTHFR mutation. My fertility doctor wasn't concerned, she said we'd go on MethylGuard Plus around our next IVF transfer (potentially 7/10).

Is there any connection between any of these disparate dots that I should know about? Thanks, M
Maacrocytosis without anemia
by: Lana R

Does all this information people are commenting on pertain to Macrocytosis without Anemia? Initial blood test shows no anemia, no vit. B12 deficiency. But reading your pages, I think you are saying the normal blood test do no show a true reading of B12. I am being referred to a hematologist so should I ask for the urine test for vit B12?
Please read the page
by: Kerri Knox, RN, The Immune Queen

Please read the page on MCV again. By definition, macrocytosis is anemia. Large red cells are CALLED Macrocytic anemia. Please read the page thoroughly to address the rest of your questions, they are covered on that page or in the pages I link to with the blue underlined links.
alcoholic?
by: Anonymous

Sorry, but that nurse is the one who sounds like an idiot. I'm 82, and have been a "normal" drinker my entire life. I'm always tired, can sleep 11 hours and still take a 2 hour nap, RBC is always under 4, MCH is 33.1, Osmolality is 265, and I have Macrocytosis.

BUT...my last B-12 was 980, and MCV is always great. I do NOT have a death wish, but at 82 I'm not going to give up pasta or wine. So what's the prognosis with my not making any changes in my life?
MCV high for years
by: James

My NP reviewed my labs and said it was all normal. My MCV is high and as I look over my past labs I find it's been rising each year for several years. I have many of the listed symptoms. She said it's not anemia because my HGB is high normal. Is she wrong?
Anemia vs b12 deficiency
by: Kerri Knox, The Immune Queen

Anemia is a general term. A high MCV is, by definition, called Macrocytic Anemia. This type of anemia has zero to do with a hemoglobin and hematocrit being low. She's talking about iron deficiency anemia.

Please go back and read the thread and follow the links and it explains a high MCV.
Longstanding macrocytosis
by: Anonymous

I was in a car accident brought the fact that I was anemic to the picture and at that time I needed a transfusion. Since then,(as I am now 56) my hgb has been stable at 98 up until 6 years ago when it started to decline about 5 points a year. The last two years my hgb has reached transfusion levels and I have finally convinced my dr to give me b12 injections. My wife also has put me on 1000mcg of methycobalamin orally. It has been 5 weeks and my MCV has gone down from 114 to 102 but I have also received a transfusion. Of 2 units of red cells. Would the transfusion complicate the true picture? I am also going to start the 5000mcg of methycobalamin s/l , as I am thinking I may have pernicious anemia as my mother who had 14 children in 19 years, nursed us all and may have passed on the gene? Any info you can give me would be great ! Does transfusions mean it's too late to reverse it all ? Or just confirm it is pernicious anemia "fatal" ?

[Kerri's note: it sounds like you are confusing iron deficiency anemia, which would affect your hemoglobin and hematocrit, with pernicious anemia or macrocytic anemia, which would affect MCV levels and is caused by low B12 levels]
Macrocytosis without anemia
by: Anonymous

I think most people are asking what to do about macrocytosis without anemia.

I have macrocytosis (large RBC) and it is without anemia.

My MCV is very low (82,5)and MCH is 27.1 with the range being 27.0 o 33

I am not anemic...my hemoglobin is 12.4 and i have no deficiency of b12 or folic

I do like wine and my doctor said to stop the wine for 3 months and retest...to give the rbc to die off. hope this answer some questions about mastocytosis due to drinking not vitamin dif.

Also you can take B1 because this vitamin is deficient when you drink
Macrocytosis and anemia
by: Kerri Knox

Macrocytosis is a type of anemia. It's also called 'macrocytic anemia'. There are lots of different types of anemias, but most people equate the low blood iron anemia with 'anemia'.

However, you are contradicting yourself. You said that you have large RBC's but a low MCV. MCV IS the size of the RBC's, so you can't have a large RBC and a low MCV. They are literally the opposite things.

In fact, a low MCV is called microcytosis also, so you are saying you have microcytosis and macrocytosis at the same time. They are mutually exclusive. You cannot have them both at the same time.

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