Benefits of B12: How long before you... - Pernicious Anaemi...

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Benefits of B12

Woody26 profile image
12 Replies

How long before you start to feel the benefits of B12 My husband has had his super boost at Christmas and is due another in March, he’s just found out that he is also deficient in Vitamin D and is taking one capsule every 3days for 2 months, and he still has cloudiness with his memory ??

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Woody26 profile image
Woody26
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KimberinUS profile image
KimberinUS

Hi thete, cant really say how long it takes to feel better because it is different for everyone. On a side note please make sure your husband is taking at least 400 mg magnesium daily if he is taking vitamin D . vitamin D needs magnesium to work effectively.

Marz profile image
Marz

VitK2-MK7 ensures any additional calcium is directed away from the arteries and soft tissues and into teeth and bones. VitD improves the uptake of calcium from foods - too much is not a good thing :-)

Is hubby also taking Folate or Folic Acid with the V12 injections - both work together in the body and have an important connection. Check out the posts by clivealive by clicking onto his name - then Replies !

Maybe he needs B12 injections more often .... did he have neurological symptoms ?

Woody26 profile image
Woody26 in reply to Marz

He took medication for folic acid last year , that’s how all this came about !! The neurological problems all came about at the same time!!!

Marz profile image
Marz in reply to Woody26

He needs more frequent injections with neurological symptoms - they should be every other day until symptoms subside. Did he have loading doses in the beginning ?

Read on another page that you are on Statins - have you taken a look at ....

drmalcolmkendrick.org

Lots of videos on You Tube if you do not want to read his long blogs ! Do you have a low thyroid ? - often raised cholesterol goes hand in hand with low thyroid :-(

Woody26 profile image
Woody26 in reply to Marz

Yes he did have loading doses at Christmas!! He was on Simvistatin, but was taken off them because of side effects, now on Atoravastatin, seems ok with these, would it be worth asking Doctor if he could have more frequent B12 injections

Marz profile image
Marz in reply to Woody26

Look at other posts here and read the Guidelines which Sleepybunny often posts. Click onto her name and then click REPLIES. Yes ask for more frequent injections or take Jarrow Methylcobalamin lozenges 5000 mcg from Amazon. Keep under tongue until dissolved.

So are you both on Statins ?

Woody26 profile image
Woody26 in reply to Marz

I take atoravastatin

2paiges profile image
2paiges in reply to Woody26

What form of b12 is he taking?

Do you know if he has high levels of B12 in his serum?

Gambit62 profile image
Gambit62Administrator

assuming you are UK based then you need to refer your GP to the BCSH guidelines on daignosis and treatment of cobalamin and folate deficiencies which you can access here and your GP can access through the BNF

onlinelibrary.wiley.com/doi...

key point is that there are two treatments for B12 deficiency

- one if no neurological involvment = 3xweekly for 2 weeks followed by 3 monthly

- one if neurological involvement = 3xweekly until symptoms stop improving followed by 2 months

two months may still not be frequent enough for your husband - getting more frequent treatment than this can be quite difficult as hydroxocobalamin is only licensed for use at a frequency of 2 months in the UK - this isn't because it is dangerous or anything but reflects the vagaries of the licensing arrangements in the UK which are driven by suppliers applying for licences. However, many GPs get spooked by the license and think that must mean its dangerous to provide injections more frequently than 2 monthly.

when hydroxo was first introduced in the UK licensing was monthly but this changed in the 1980's - probably (short-sighted) cost cutting. B12 is a cheap medication but the insistence on using intra-muscular as a delivery method (sub-cutaneous seems to be just as effective from studies) and the assumption that this means it has to be done by a nurse means that it involves medical staff time which really bumps up the cost and makes it quite expensive (even though it's often only a minute or so of time).

You could try pointing your GP at the area of the PAS website specifically aimed at helping medics to improve the standards of diagnosis and treatment (which overall are pretty rubbish)

pernicious-anaemia-society....

and it is worth broaching the subject of more frequent injections if you find after the loading is done properly that his symptoms come back before a shot - but as I say can be difficult to get GPs to move.

Other options (as B12 has no known toxicity) - is supplementing - there are various sublinguals and sprays and even skin patches out there - you need a dosage of at least 1000mcg. The supplements are classed as vitamin supplements so aren't covered by the same regs that make injectable B12 prescription only in the UK. In other countries it is over the counter.

Do you know if your husband was anaemic - macrocytic = larger rounder red blood cells? It can take a few months for this to clear.

Suggest that you make a list of symptoms and start keeping a diary of how they change.

pernicious-anaemia-society....

B12 deficiency can take a long time to develop - years and even decades so it is worth monitoring everything that applies.

clivealive profile image
clivealiveForum Support

Hi Woody36

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 your husband is having injected starts repairing the damage done to his nervous system and his brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If your husband can get to see a doctor please also ask him/her to check his Folate level as this and B12 helps his iron to make red blood cells and to function properly

.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you and your husband well

.

Marz profile image
Marz

A rose by any other name will smell as sweet ..... well to most of us anyway !

Sleepybunny profile image
Sleepybunny

Hi,

Some links that may be of use.

What does GP think is the cause of his low B12?

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

UK b12 documents

If you're in UK, I'd suggest reading all of these.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Useful summary of B12 documents in third pinned post on this forum.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

If you suspect PA, may be worth joining and talking to PAS.

Has your husband had an Intrinsic Factor Antibody test? This can help to diagnose PA but is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

Coeliac disease

In UK, NICE guidelines Coeliac disease (2015 version) specify that anyone with unexplained B12, folate or iron deficiency should have tests for Coeliac disease.

nice.org.uk/guidance/ng20/c...

coeliac.org.uk/coeliac-dise...

H Pylori

Has he had a test for H pylori infection as this can lead to B12 deficiency?

patient.info/health/dyspeps...

UK b12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

links about blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

I am not medically trained.

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