B12 how much and how often

[Jeep13]

I’ve been struggling with PA for 2 and 1/2 years. No one would listen. Finally from Israel I was advised to get the Intrinsic Factor Antibody Blood Test and the Parietal Cell Antibody Blood Test. Pernicious Anemia. I have to take a shot of Methylcobalamin daily. The Israelis recommend taking a shot a day for 3 months as that is how long it takes for the blood cells to recover from the damage PA does. What I don’t have is the initial load dose. My symptoms and PA were caused by Nexium prescribed by Doctors for GERD for over 8 years continuously. I believe I have zero stored B12. I’m looking for initial load dosing but will continue to take a daily shot before I go to bed until further notice.

[wedgewood]

If your symptoms of B12 deficiency were caused by Nexium ( a Proton Pump Inhibitor) , you don’t necessarily have Pernicious Anaemia .

Of course it is possible that you acquired P.A.,an autoimmune condition , which is also called Autoimmune Gastritis , whilst taking Nexium . But certainly Nexium could be the cause , because it totally depletes ones stomach acid, which is essential for the absorption of B12 , along with the Intrinsic Factor.

The Intrinsic Factor Antibodies cannot be relied upon ,as about 50% of P.A. patients test negative . This is because sometimes the antibodies show up in the blood and sometimes don’t .

It’s usual to inject every other day until you experience no improvement . Here in U.K. the usual B12 is Hydroxocobalamin.

Here are most of the causes for B12 deficiency .

Causes of Vitamin B12 deficiency .

Pernicious Anaemia ( also know as autoimmune gastritis) is the most common cause of vitamin B12 deficiency . It is an autoimmune condition.Autoimmune conditions seldom come alone . The most common autoimmune “companion”of P.A. is a thyroid condition . Rheumatoid arthritis is common .But there are over 100 autoimmune conditions!

There is definitely a genetic link to be considered with Pernicious Anaemia, if you have blood relatives with Pernicious Anaemia, or if you know that they have or had B12 injections .

In P.A. the body turns on itself and produces antibodies which destroy the parietal cells in the stomach . These cells produce the Intrinsic Factor and stomach acid , both of which are essential to the process of absorption of vitamin B12 .

Atrophic gastritis , which thins the stomach lining causes Pernicious Anaemia .

Unfortunately the Intrinsic Factor Antibodies do not always show up in the test for P.A. ( Intrinsic Factor Antibodies test). This happens about 50% of the time in P.A. patients — Often takes several tests before they show up .. …. Often doctors do not have this knowledge , and conclude that a negative test means no Pernicious Anaemia . Symptoms must always be treated .

Pernicious Anaemia is incurable and must be treated FOR LIFE with B12 injections.The regularity required to keep symptoms at bay can vary from daily to 3 monthly .. It is not known why there is such variation in need. More research is needed . Tablets are NOT the answer. If deficient for too long ( this is also of variable length ) a symptom can become irreversible . That’s why it’s essential to get prompt treatment.

OTHER CAUSES

Vegan or strict vegetarian diet .B12 is only found in meat, fish, dairy products and eggs.( some food stuffs are supplemented with B12 ) eg marmite . There is no plant source for vitamin B12. Take tablets , unless seriously deficient , when injections are called for till your levels are boosted . Then take tablets daily always .

Certain medications e.g. Metformin .Proton Pump Inhibitors ( P.P.I.s) cause depletion of vitamin B12. There are many others — look them up . If you can’t stop taking these medications, you’ll need injections .

Gastric surgeries Bariatric and others .eg Gastric Bypass, Sleeve Gastrectomy. B12 injections FOR LIFE required .

Also radiation treatment of the stomach , for a cancer , can destroy the parietal cells .— injections FOR LIFE required .

Infestation of fish tape worm ( different to meat tapeworm) caused by eating raw fish or insufficiently smoked fish that is eaten uncooked . Treat with an anti-parasitical medication. Then a few B12 injections till levels are satisfactory .

Helicobacter Pylori, the cause of peptic ulcers , a bacterial infection of the stomach, can cause vitamin B12 deficiency.Treatment with anti-biotics . Injections to quickly restore b12 levels.

Lyme disease caused by a bite from a tick ( Borrelia burgdorfei) can cause vitamin B12 depletion( and also vitamin D and magnesium depletion ) . A very nasty disease . Can cause many problems . Look up how you can identify such a bite when you have been walking in long grass etc . It makes a specially marked bite ( Bulls eye,circular ) Later a rash appears . Not all ticks carry the infection , but always see a doctor if you are worried . Treatment with antibiotics .

Abuse of nitrous oxide ( laughing gas) Midwives should take great care when administering nitrous oxide . Stop using nitrous oxide and have a few injections to boost B12 -

As we age , we produce less stomach acid, which can lead to B12 deficiency.. Take b12 tablets daily.

[ClaireWF1346 in reply to wedgewood]

Such an informative post, thanks! Some of this I didn't know and as someone still trying to figure out the root cause of their issues, it's been useful.

[Narwhal10]

Hi Jeep13,

Welcome here. You really need to learn about this illness because it is totally bizarre. Become a member of the Pernicious Anaemia Society

pernicious-anaemia-society.org

You do not need to have an exact diagnosis, you can be involved in research and they are the only organisation that can produce statistics. Please know the misdiagnoses too :-

b12info.com/misdiagnosis/

Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice.

b12d.org/book

There are lots of myths and misconceptions about this disease/condition. Even in the Medical Profession. Please get hard copies of your blood results especially the Intrinsic Factor Antibody Blood Test and the Parietal Cell Antibody Blood Test. Please note the range and the cut-off levels for B12, ferritin, vitamin D and folate in YOUR area of the USA.

Recovery will depend on how old you are, length of deficiency, severity of deficiency, how active you are. So, whether you run your own business, and have dependants. Whether you have other illnesses or diseases. There is no set formula for Recovery (i.e. 3 months of daily injections). Plus, we can have relapses due to pushing ourselves too hard, having to reach deadlines, alcohol or viruses. We know that when the apple cart has been upset, it takes TIME to re-balance again.

I think there may be a little confusion over the meaning of loading dose. It means the first injection you received. You know the information which includes the time, date and which part of your body the needle was inserted. So, you have received ‘a loading dose’. Equally, in medicine it can be a set of injections or a medication given for a set period of time (example : - 2 weeks) given at specific intervals (example :- Every Other Day).

One of the common misperceptions by the medical community is that we are capable of storing B12 in our livers after a certain period of treatment. We cannot. Within 48 hours of injection, the excess of the methylcobalamin will have been flushed down the toilet via our kidneys and is excreted in urine. Unless, it is a scorching hot day or we exercise. Then, we will loose a larger proportion via our sudoriparous glands. Through perspiration or in layman’s terms, Sweat.

🐳

[Jeep13 in reply to Narwhal10]

I found that 90 days of daily injection would be the loading dose as red blood cells fully recover after this period. After that gradually reduce until you find your sweet spot. It’s increasingly apparent that each individual processes and uses B12 differently, so experiment after the initial loading dose.

[FlipperTD]

Scientist, not medic.

Your symptoms may have been secondary to use of a PPI, but that doesn't cause PA. PPI use can and will impair your ability to absorb B12,so you end up B12 deficient That's not the same as PA, although cases of PA are typically B12 deficient.

If you have IFAb [you don't state your result] then that's PA, although 50% of PA cases don't have IFAb. Parietal Cell Antibodies are helpful but not specific.

If your B12 stores were normal when you started on PPIs, then it might take 3-5 years to use up your stores.