Why can't I keep my hgb level wnl? - Pernicious Anaemi...

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Why can't I keep my hgb level wnl?

Remozeita
Remozeita

I am unable to keep my RBC and hgb count up wnl . my hematolo gist cannot figure out why. I am getting an egd and a Colo tomorrow to r/o loosing any blood there. My hgb is 6.3 this week. I am getting 6 infusions of venofer EOD. Last month my hgb was 5.2. I got 2 u prbc and one infusion of indfed, one school of thought is suppressed bone marrow, but why?

7 Replies

Hi There, I don't know if you've been diagnosed with PA, You don't say. I have and my problems are similar my RBC is down but my hgb stays within normal range. My platelets were really down before This latest round of intensive B12 injections which Is ongoing. This first Blood test since it started reveals a 30,0000 increase in platelets putting me Just back in the normal range. Lymphocytes however are still Much too low. I posted recently explaining That I showed my doctor médical papers which show That some PA patients have false positives. I have since discovered That some people have rare metabolic disorders which require massive doses of B12 in order for them to absorb enough. My Next Blood test is in decembee and I hope it shows further improvement. Are You recieving any treatment other than transfusions? I also have all the clinical signs of megaloblastic anemia , enlarged Blood celle etc.

Ashweb901
Ashweb901 in reply to expatkerry

Same boat here. Always too big and too low RBCs but HGB is low side of normal. Slightly elevated MCV MCH. Folate normal. I’m seeing a hematologist later this month and hopenronfind out more. I am homozygous for MTHFR variant a1298c and hetero for c677t and I believe this quirk in methylation affects my blood results.

expatkerry
expatkerry in reply to Ashweb901

that's interesting

fbirder
fbirder in reply to Ashweb901

The only MTHFR mutation shown to have any possible deleterious effects is homozygous for C677T. And that's only in women.

This is what the gene-testing company 23AndMe say about MTHFR

Based on the existing data, scientists at 23andMe have concluded that people should not interpret their genotypes at the common MTHFR variants as having an effect on their health.

These are the guys who should know - and who make money from persuading people to take their tests.

Ashweb901
Ashweb901 in reply to fbirder

Well then it’s coincidence, because out of nowhere my B12 was in the 100s back in 1995. I am homo for a1298c and hetero for c677t. Compound hetero is actually more disruptive than homo of either variant. I believe 23 and Me is following what the AMA says, which is that these mutations are no big deal. I did t even know they had a license to test for MTHFR. As it stood when i took their test, I had to get my raw data and run it through an online engine to find out my MTHFR status.

fbirder
fbirder in reply to Ashweb901

No, there is no evidence from repeatable, reliable, scientific studies to support the idea that there is any significant problem caused by being ‘compound heterozygous’. Which is fortunate because there are about a billion people in the world that fit into that category.

There are some clickbait websites that earn money by spreading FUD (fear, uncertainty and doubt) about MTHFR nad how it causes almost everything under the sun.

Besides which, one’s MTHFR status has absolutely zero bearing on one’s B12 levels.

If you do believe that MTHFR mutations are a problem then you can easily fix them all just by taking methylfolate supplements instead of folic acid. I’m homozygous for C677T and I take methylfolate because it can’t do any harm and it might do some good.

I’ve looked into the subject quite thoroughly. Here’s a post about it...

healthunlocked.com/pasoc/po...

That happened to my friend. Test your bone marrow to see if it's producing RBC's.

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