Vitamin B12 deficiency

[Heather270240]

Hi. I have ET JAK2 diagnosed in 2017. I have now been told by my GP surgery that I have a Vitamin B12 deficiency despite the fact that I take a daily dose of D complex. Is this deficiency normal with people with ET? I am unable to have a further blood test until end of October and my GP in November. Is this something I should tell my haemo Nurse about?

[Pte82]

Low intrinsic factor in the stomach can be causing your deficiency. Using a sublingual B12 will bypass the problem and is better absorbed. Look for a fastmelt methylcobalamin form of B12.

[Deefen in reply to Pte82]

Low intrinsic factor?? What does that mean?

[Chicagopv]

I put brewer's yeast on food instead of sprinkling Parmesan cheese. It's high in B vitamins--may not be enough to make a big difference, but it's a start.

[Deefen]

I’ve read that it’s quite common - we apparently deplete our B12 stores quickly. My integrative medical doc gives me a B12 shot every few mths - plus I take a good B12 sublingual spray each day

[Pte82 in reply to Deefen]

Deefen, Your body needs a type of protein called intrinsic factor to absorb vitamin B-12. Intrinsic factor is produced by the parietal cells in the stomach.

After you consume vitamin B-12, it travels to your stomach where intrinsic factor binds to it. The two are then absorbed in the last part of your small intestine. If the immune system attacks and destroys the cells a condition called pernicious anemia occurs. Absorption of B12 can be affected by other factors as well. This article offers an insight:

ncbi.nlm.nih.gov/pmc/articl...

[wendycu]

I was getting the B12 injection every 8 weeks. It does help. But since shielding I was given the the tablets instead. I take them every day and I feel better than I was on the injection. (Don’t know why as it’s the same thing.)

[Hidden]

Hi Heather, what was your B12 level?

Did your GP also test your Folate, Iron, ferritin, vit D, TSH, FT4. You need to get a copy of your blood test results. Also look at your MCV as this can help indicate what is going on.

When I was first diagnosed with ET I also had low B12, And low Vit D. For me, treating my B12 deficiency was a real game changer, and it turned out almost all of my symptoms that I went to doctor with were B12 related as they went away within a month or 2 of correcting my deficiencies.

There are several causes of B12 deficiency. What is your doctor doing to find out why you are deficient. Are you vegan/vegetarian? . Do your have thyroid issues? Do you take PPI’s, metformin or other drugs that will caused B12 deficiency? Have you been checked for Pernicious Anaemia ?

You could ask your haematologist but if he is anything like mine, it will be a waste if time.

Did you tell your Doctor that you were already taking supplements? He should take that in to account, but bear in mind that Doctors get almost zero training in vitamins and minerals. (My newly qualified doctor daughter in law said she had a whole half day on vitamins in her 7 years of training 😳)

If they are going to do another blood test then stop taking all supplements as this will make your B12 look artificially high.

Are you in Uk? There are a couple of companies that do blood testing, not overly priced.

Do you have any B12 symptoms?

b12deficiency.info/signs-an...

If yes, print off the list, date it and tick/ grade your symptoms. Then you have something to show the doc and hopefully he can help you out. If not, plenty of folks, myself included, treat themselves.

If you have any questions, just keep asking. I get the impression there are plenty of other folk on here with B12 issues.

Treatmentwise, injections are superior to tablets as with a tablet you don’t know how much your absorbing. If you have to take a tablet, sublinguals are usually better as it bypasses the stomach. Methylcobalamin is generally regarded as the best form for sublingual. Tablets you swallow are probably a waste of money.

B12 is very safe and you can’t Overdose on it as you just excrete any excess when you pee. SerumB12 test is very inaccurate as most of what is floating around (90%) is not in a form that can be used by your cells. Ask for the active B12 test. Really though , as B12 is so safe, if you have symptoms they should do a therapeutic trial to see if it helps.

Good luck 👍

[Wyebird in reply to Hidden]

A really good reply xxx

[moo196]

I get monthly B12 injections and have still done so through the pandemic. The tablet form gave me no help but had bad side effects.

Most people in the UK need vitamin D supplements from September to March. Just restarted those.

Good luck!

[Wyebird]

Apparently so, I take b12 and magnesium supplements purely through other people posting. Hen I had a b12 blood test done a few months ago I was mid range. So with put them I think I’d have been deficient.

Yes do tell your heamo. Has your doctor given you something?

[Mazcd Partner MPNVoice]

Hi Heather, yes do speak to your haemo nurse about this and get her/his advice on what the result means and what you may need to do about it. Best wishes, Maz

[Heather270240 in reply to Mazcd]

Hi Mazcd. I have just spoken with Haemo Nurse and it appears you have to have at least 3 low readings of B12 before considering intervention or treatment. That to me sounds crazy.