20 yrs B12 def

[brenanddave]

OMG! My doctors have given me all my past medical records that were in paper form as they are now computerized only. I have been reading them and discovered that the MCV AND MCH has been really high for at least 20 yrs consistently. It has never lowered. I am assuming this was also having an effect on my B12. I have always had memory problems low energy light-headed episodes depression etc. I feel gob-smacked this has not been addressed by a doctor there are just notes like Macrocytes are increased. I am wondering what this means as far as irreversible damage for the future.

[FlipperTD]

Scientist, not medic.

You tell us about your persistently raised MCV and MCH, but how high? It's a bit disturbing nevertheless. However, if your macrocytic picture is down to a deficiency of B12 and/or folate, it should resolve completely on suitable replacement therapy. For that, you need to see what's missing, rather than simply starting on 'shotgun therapy' where you attempt to replace everything at once. IN any case, if B12 is low, that MUST be treated before folate is addressed.

Good luck.

[brenanddave in reply to FlipperTD]

Hi Flipper 29 Apr MCV 100 (80-99)H MCH 33.7pg (27.0-33)H

[brenanddave in reply to brenanddave]

I'm thinking this may be why it has gone untreated because it is just on the cusp each time.

[FlipperTD in reply to brenanddave]

Thanks for that. Fascinating. It's something that requires a keen Haematologist's eye...

If it's always been like that for 20 years then that looks like it's 'Normal For You' and the reference ranges are typically 95% ranges, so one in 20 of us will be outside that range despite being normal.

Obviously the further out of range, the more convincing that it's 'abnormal', but it's hard to tell from here.

[tomdickharry in reply to FlipperTD]

Similarly a person could be just INSIDE the range but not be normal. GPs seem to forget that.

[FlipperTD in reply to tomdickharry]

I suspect they don't actually forget; most have probably never even thought about it!

[EllaNore in reply to brenanddave]

Hi brenanddave, I feel i have the same problem. My numbers are very similar . They refuse to look at my MCV and my MCH. Even though they're flagged as high and a low, they don't think it's THAT bad. And now a year into B12 treatment, I'm suddenly anemic. my RBCs are low and they weren't before. everything else seems to be okay. As far as ferritin and folate. I do take D3. So I'm not sure why with consistent daily B12 treatment, why my MCV and MCH aren't becoming normal and why suddenly my RBCs have lowered.

A year ago my doctors said I wasn't anemic and didn't believe that I had pernicious anemia even though my IFAB test came back positive and my second one came back undeterminable. even though my MCV and my MCH said differently. Now, a year later, with b12 treatment I am anemic. Yet my docs haven't even mentioned the change. Or discussed it with me. I'm confused. Anyway, I understand your frustration. Wish I had some answers for both of us.

[brenanddave in reply to EllaNore]

Thanks EllaNore Yes! It is all very confusing. Especially as we obviously are needing to make our own decisions for our own health without doctors support with aspects of it. It is a responsibility and I feel I need to really understand it in order to do right things. Good like! I will let you know if my doctor comes up with any advice.

[EllaNore in reply to brenanddave]

Yes, I feel I have nowhere to turn for help but here. Which has been the greatest help I've received. Everyone here in one way or another, I feel, is responsible for any progress I've made.

Good luck and if I find out anything, I will post it here for sure.