How long b12 tablets to work - Pernicious Anaemi...

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How long b12 tablets to work

calbous profile image
17 Replies

Just been diagnosed with B12 deficiency 180 and been prescribed tablets,symptoms tired, foggy head cannot walk straight,taking them now for 10 days, can anybody tell me how long before i hopefully show some improvement. Thanks C.

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calbous
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17 Replies
greenbexy profile image
greenbexy

Unfortunately it's a bit like 'how long is a piece of string?' As you have neurological symptoms I believe that you should have loading injections. What was the range on the B12 results? Tablets may work if you are dietary deficient, as a vegan etc, but then again if you are really low only the injections will make a significant difference. I'm sure someone will be along soon with links which will really help such as Sleepybunny . Have you had iron and folate checked too?

Gambit62 profile image
Gambit62Administrator

what dose are the tablets you have been given?

what symptoms do you have?

do you know if your bloodwork showed any signs of anaemia (macrocytosis - red blood cells larger and rounder than normal)?

do you know what your folate levels were like?

are you based in the UK?

Are you vegan or do you basically eat no meat/fish/dairy/egg? ie was the cause of your deficiency lack of B12 in your diet?

if not dietary then you will have an absorption problem. Generally treatment for an absorption problem is injections rather than tablets. If you have an absorption problem then to have any hope of the tablets working the dose needs to be really high. 50mcg cyanocobalamin tablets will not have any effect on a B12 deficiency caused by an absorption problem..

if you have anaemia and this is causing your other symptoms it will take a couple of months at least to clear as the deformed blood cells are only replaced as old ones die and the average life of a red blood cell is about 4 months.

Tiredness can start to go quite quickly for some - and brain fog may lift quite quickly but it really depends on what is causing the tiredness etc - anaemia or another system that B12 is used for.

if your folate levels are a bit on the low side they can become depleted when your body starts to get the B12 it needs and starts using that B12 to heal.

Simplicity17 profile image
Simplicity17 in reply toGambit62

Thank you for the 'four month' explanation...I've been searching all over the Internet for those specifics. Suffering from peripheral neuropathy due to a B12 deficiency (megaloblastic anemia/MTHFR defect caused absorption issues), I just concluded my first month of megadosing and I'm SO much worse... exacerbated numbness, burning, etc. It's hard to wrap my head around that this is actually a GOOD thing, that the B12 is making me better if I'm experiencing these symptoms ~ and not worse, so you simply don't get frustrated and give up.

Gambit62 profile image
Gambit62Administrator in reply toSimplicity17

are you under medical treatment? -

Suggest that you get serum B12 checked to ensure that it really is increasing - also ask to have MMA and/or homocysteine levels checked as there is a possibility of functional deficiency (high serum but not much available at the cell level - not related to MTHFR but won't help with it).

Also, if you are using methyl then it might be worth trying hydroxo or cyano - methyl doesn't suit everyone and it doesn't always suit people with MTHFR ... and MTHFR is only really an issue with B12 in some specific genetic combinations. It affects processing of folate much more.

Are you also taking methylfolate - again it doesn't always work well for everyone and that can include people with MTHFR variants.

Whilst it is common for people to feel worse before they feel better what you are experiencing sounds more than that.

Simplicity17 profile image
Simplicity17 in reply toGambit62

Yes, I am under medical supervision.

My serum B12 issue WAS the problem ~ it read 1,410 BEFORE treatment. It indicated that the B12 was just staying in my blood, unable to be absorbed into my tissues, muscles, nerves, etc.

Hydroxo or cyano types will do nothing to address my issues ~ methyl B12 is the only kind that will work for absorption purposes. Addressing another question, I am on methylfolate as well ~ one, to address my MTHFR problems (homozygous A1298c), and two, one must take it in conjunction with methyl B12 to make it work effectively.

Doctor after doctor had warned me to prepare for the 'healing crisis' ~ that things will always get worse before they get better. With the instant gratification mentality of today, I had 'expected' to see things turn around in a just a couple of weeks. My doctor patiently explained that something that took YEARS to get to the point it is now, was not going to be repaired in just a matter of days.

Gambit62 profile image
Gambit62Administrator in reply toSimplicity17

what you are describing in relation to B12 is a functional B12 deficiency - and generally isn't related to MTHFR problems. MTHFR genetic mutations affect the efficiency of methylation processes and mean that your cells need more folate and B12 generally than other people. It also has a much bigger effect on folate than it does on B12.

In fact I am finding it difficult logically to see a way in which MTHFR could cause high B12 in blood - its another problem that causes B12 to be bound into blood so it can't pass into the cells. However, I am a long way from being an expert in biochemistry.

Have you tried hydroxo and or cyano? curious as to how you know that these will have no effect.

I have not come across anything that says that methylcobalamin is needed in order to make methylfolate work - even if homozygous for A1298c (which is actually a long way from being the genetic variant combination that has the most impact on use of B12 in methylation processes .... and the effects on the efficiency of using B12 tend to be 80% at the worst.

What I understand of the metabolism of B12 and how it gets into cells suggest that the form of B12 is pretty irrelevant so a bit surprised.

If you have been given any background research that you have links for I would be interested.

There is things getting worse and there is something really not being right - if the not being able to walk straight etc are things that have happened since you started taking the tablets then you definitely need to go back to your doctor.

fbirder profile image
fbirder in reply toGambit62

You are correct. MTHFR defects cannot cause high B12. Especially not the A1298>C mutation. There is no proper scientific evidence for this doing anything.

Taking methylcobalamin isn't needed. When methylcobalamin is taken into the cell the very first thing that happens is that the methyl group is removed to produce cob(II)alamin. Which is exactly what happens to hydroxo- cyano- or adenosyl cobalamin; the top ligand is removed to produce cob(II)alamin.

ncbi.nlm.nih.gov/pubmed/258...

keithw profile image
keithw in reply tofbirder

Hi, I have the homozygous 1298C mutation. Confirmed with abnormal high homocysteine, levels, abnormal low red blood cell folate,and B12 Deficiency. I have just started taking methylcobalamin , and 5\L -methylfolate. I asked my Dr specially for the methylcobalamin injections. I will provide a few links on why shortly. It's too early for me to tell how successful it will be but I am hoping for the best. I have issues with small muscle fiber, muscle spasms, peripheral neuropathy,chronic fatigue. All this despite not having the primary Gene mutation that is said to cause the most issue.

fbirder profile image
fbirder in reply tokeithw

A MTHFR defect cannot cause low B12. Indeed, it can cause high B12 if it is serious Anouilh to initiate the folate trap.

So there must be a different reason for the low B12. Either low B12 or low folate can cause elevated levels of homocysteine.

Did you have MMA measured?

Simplicity17 profile image
Simplicity17 in reply toGambit62

I'll pass along your thoughts to my physician.

clivealive profile image
clivealiveForum Support

Hi calbous as greenbexy says it's difficult to put a timescale on how long it will be before you see any improvement as a lot will depend on the cause of your deficiency.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Can you "see" yourself in any of the above people?

calbous profile image
calbous

Thanks for the replies. I live in Spain, test result 176 pg/ml 180-914 everything else seems ok, am 71 years of age, had recent stomach problem which is now healing. Doctor said to come back after one month if no improvement so hopefully he knows what he is doing,will update in a few weeks. C.

calbous profile image
calbous

Forgot to add that the tablets are 500 micrograms.

Sleepybunny profile image
Sleepybunny

Hi,

I don't know how B12 deficiency is treated in Spain, hopefully there will be a Spanish forum member who will be able to pass on information specific to B12 treatment in Spain.

In the UK, there are guidelines on how to diagnose and treat B12 deficiency. See link underneath.

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

Are you able to find out whether there are national B12 deficiency guidelines in Spain?

Is there a national Haematology Society of Spain?

B12 info

PAS (Pernicious Anaemia Society) website

Charity based in UK but has members from around the world. Lots of B12 and PA information.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response

Martyn Hooper is the chairman of PAS. He has a blog about PA and B12 issues.

martynhooper.com/

B12 Deficiency Info website

b12deficiency.info/

Lots of B12 information, some may be specific to UK. Blog about B12 issues.

B12 books

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

"Could it be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart

It's available in Spanish "La Vitamina B12; la Cobalamina puede salvar muchas vidas"

Good luck with getting the help you need.

Clematisa1 profile image
Clematisa1

I have just been given Vit B12 tablets - last December I was given folic acid tablets... are they related? And how long before I see any difference? Not been feeling tired but have had funny sensations in my fingers - thought I'd been sleeping on my arm, but now reading up I find this is a symptom of VitB 12 deficiency.. The nurse wasn't very helpful and said just "google" it and see what you like to eat! I asked if I'd get another blood test and her response was... You''ll get another blood test in about 10 weeks just to see if the tablets are working! Can anyone enlighten me about this, please?

calbous profile image
calbous

What strength tablets are you taking as I have increased mine from 500 to1000 micrograms over the last two weeks which has helped.

palmier profile image
palmier

500 or 1000 mcg tablets may sound like a lot, but if you have an absorption problem you may absorb only around 1%, that is around 5 or 10 mcg from each tablet.

So you may absorb only around two or four times the daily requirement, which isn't much if you're trying to correct a deficiency.

(Sorry, I didn't realise how old this post was.)

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