Blood results after treatment

[Ganeshmouse]

Hi All! This is my first time posting. I was dx with PA in 2014. We are having a hard time keeping my numbers up and have tried front loading regularly and I am currently on a injection every 3 weeks (US). I also have been prescribed nasal B12 spray for weekly supplementation. My numbers are still regularly only in the 2-300 range and my MCV and MCH have never gone back down to "normal" range. I also have been iron anemic (which have never brought my MCV and MCH down surprisingly) and received a feraheme infusion last winter that is still holding me for now in that area.

My question is just to try to find that is "normal" for the rest of you on correct treatment. Do your MCV and MCH stay in the normal range when you are on the best injection schedule for your PA? We have wondered if maybe my B12 blood level isn't showing my real level and is falsely low, but I would think if that were true my MCH and MCV would be normal and that my blood cells wouldn't be fat if they weren't macrocytic. Am I understanding that correct?

My WBC and lymphocyte count have been flirting back and forth with below normal for the past year or so as well, so my hematologist and I have been thinking about the idea of doing a bone marrow biopsy to see if there is something besides PA going on.

I do also have secondary adrenal insufficiency, but am high functioning and very healthy otherwise.

Thanks! Alex

[clivealive Forum Support]

Hi Ganeshmouse

What's your Folate level like?

I too am on cyanocobamalin B12 injections (for P.A. since 1972) and now also every three weeks and personally I have taken 1 – Folic Acid 400μg and 1 – Iron Ferrous Fumarate 210mg tablet every day for more years than I can remember.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I'm not medically trained but there are others on here who will be able to give you good advice

[Ganeshmouse in reply to clivealive]

Folate numbers are good. Thank you for that thought though!

[GavinUK]

Ganeshmouse,

Afraid I'm not able to help much with the MCV side as mine appears to be normal although I have tested low B12 and symptomatic anaemia. I'm only in the loading dose at the moment and the initial PA test has come back negative. However I am sure there are people who will be able to help.

In my short experience, haematologists do seem to be the people to deal with this stuff so at least you seem to be in good hands. It appears to be very variable between people as to what constitutes 'normal'.

Have you had the separate newer test for 'active B12' as that seems to be more accurate at showing the level that your body is really working with. I was reading a document earlier that in some cases that level can actually be better(higher) that the serum value, although it is commonly lower - so that some people who show B12 deficient in the serum test are not actually so.

You are right as far as I understand it in that the macrocytosis does point to anaemia, although how long it takes to return to normal after treatment I'm not clear on.

The more recent UK guidelines and literature all seem to concentrate on the symptoms - are you still getting all the symptoms of PA or has that improved with treatment? In the same way that some people have the symptoms while showing 'normal' blood levels, I suspect it is possible to be managing the symptoms well, but still show at a low level.

In the UK in fact, a reading of over 150ng/L is often not considered deficient at all and regularly not given treatment, even when the symptoms are there (to the dismay of many people on this board and against some of the guidelines).

It sounds like there are still things for your haematologist to explore, so it may be that something else is going on.

I am sure there are people here with more experience of long term treatment who can offer further insight. Good luck with your ongoing treatment.

Gavin

[Ganeshmouse in reply to GavinUK]

Thank you Gavin - I haven't ever had an active B12 test done...I wasn't sure that was available yet, so will ask him about that.

[Gambit62 Administrator]

How long after your injections are your B12 levels being measured? Sounds like you need injections more than 3 weekly and need to use the nasal spray more.

Some people just seem to metabolise B12 much faster than others.

Also possible, assuming that injections and nasal spray are both cyanocobalamin that this may not be the right form of B12 for you.

One of the other admins recently shared this article in relation to some discussions on storage of B12 in liver but it mentions a number of genetic conditions that can cause problems with B12 (Table1)

researchgate.net/publicatio...

might be worth sharing with your doctor and seeing if any of the genes are relevant to you.

[Ganeshmouse in reply to Gambit62]

Thank you - I've actually been tested for the genetic mutations and other than MTHFR, others were all normal. I have blood tests done every other month, so some times my blood tests are right before my next injection and sometimes only a few weeks in. The other deficiencies have us thinking bone marrow issues, so that was why I was wondering if others MCV and MCH numbers returned to the normal range once on a successful replacement plan. Thank you for your insight.

[Gambit62 Administrator in reply to Ganeshmouse]

MTHFR is unlikely to be a problem gene - it affects folate a lot more than B12.

Hope you get an answer.