Vitamin B12 affecting HCT ?

[Bobadog]

Hi

I’ve just started taking Peg(45mcg fortnightly)

My HCT levels have increased more than before taking Peg.

I have required 2 venesections within 3 weeks.(.47 and .48)

RBC 6.79

I have started taking vitamin B12 drops (1ml daily)

Has anyone else experienced a pronounced change in blood levels with Vitamin B12?

Thankyou for any advice

[hunter5582]

Your body needs Vit B12 to make RBCs. Some might caution about its use with PV; however, Vit B is essential for other body functions as well. Vit B is critical to neurological function. Vit B deficiency causes memory loss and other problems. This is a particular issue for us as we age. I have measured Vit B/folate deficiency despite a healthy diet. I take a high-quality supplement under the direction of my Integrative Medicine doc. The dose is titrated to match my needs based on pre and post measurement of Vit B levels. There was no apparent change in my HCT due to the supplement.

It s a really good idea to have a nutritional analysis done to see what your body needs to function properly. I am also Vit D and magnesium deficient. I base the dosing on measuring my response to the supplements.

hope that helps.

[Bobadog in reply to hunter5582]

Thankyou,I shall try and find a nutritional analyst ,otherwise I’m just taking the dose prescribed on the bottle.The haematology team have suggested that I take weekly peg now,so that may reduce the HCT levels.

Thankyou again

[hunter5582 in reply to Bobadog]

The standard weekly dose of PEG would make sense. I hope you tolerate and benefit from it as well as I have. Weekly 45mcg has everything well controlled and no adverse effects.

All the best.

[Bobadog in reply to hunter5582]

I’m sure a weekly dose will help.Thankyou for all your positive responses,

I hope your treatment continues to go well for you,

[EPguy]

Do you have blood test results showing low B12? From the posts here I asked my Dr to check during my regular Hem visit. (and Mg, C-RP). All in range in my case.

If your results are normal you might ask your Dr or advisor whether taking extra B12 is best.

[hunter5582 in reply to EPguy]

I would venture to sat that if your Vit B is within the normal range then there probably is not any advantage to taking it. There are certainly those that would disagree, but that just makes sense to me. My goal in taking Vit B is to just stay in the normal range. Note that magnesium is a bit different in that I take the most I can tolerate to prevent palinopsia episodes. (I am still in reference range for Mg anyway).

[Bobadog in reply to hunter5582]

Thanks Hunter...I shall hold fire on B12...it did make me feel much better fairly instantly though.Improved my energy levels /concentration etc.This is a balancing act ,as we all knowAll the best

[hunter5582 in reply to Bobadog]

If it made you feel better then there is likely no harm to taking it even in the absence of measured levels. You are already monitoring your CBC, so you would see a change if one occurred. I simply have a preference for measuring my response to interventions when I can. You know your own body best. If you feel better - better is good.

[Bobadog in reply to EPguy]

Thanks very much ETI shall do this

All the best

[jointpain]

My wife has MF and is jak2 POS. Due to gastritis and erosion of her stomach she is on omeprazole which is a known reducer of B12 blood serum, she takes a 1100mg B12 pill each day.and folic acid each day along with the rest of her pills. She is an absolute marvel how she copes with all the crap life has decided to throw in her direction.

[Bobadog in reply to jointpain]

I’m pleased to hear how well your wife is copingAll the very best

[ainslie]

A word of caution about dosing B12 based on B12 blood levels if we have a MPN.I don’t know if this applies to ET and MF but it does with PV. With PV B12 blood levels can appear very high but one may not be high in B12 in reality , in fact we can show very high B12 but still be deficient. There is a better way of measuring real B12 in MPN patients. If I remember correctly Clair Harrison wrote about it and it was possibly somewhere on MPN voice website, maybe Maz knows where it is.

[Bobadog in reply to ainslie]

Many thanks AinslieI shall look into this...I am under Prof Clare.

I will stop taking B12 until further research /blood tests done .

It Must have affected my HCT ...back to square one with vsections every fortnight, which isn’t logical at this stage.

Hopefully HCT will settle with Peg ,over the next few weeks

It’s worth pointing out the B12 caution for other PV folk here?

Many thanks for the info which is really helpful

All the best

[jointpain]

May I add that one cannot overdose on B12, and the people, of which I am one that have to inject vitamin B12 regularly have only found benefits from doing so, even if blood serum B12 levels are way above normal.

[AEROGUY]

Male,73 pv dx Oct'20, hct was high, lots of other symptoms, went vegetarian, lost weight, taking b12...hct not 43.5, hemo guy is very happy.