Why do some people need to inject every week?

[fx9898]

Seen many stories of folks who have to continously inject weekly or there symptoms return even after having done this for years. Isn't the body suppose to store excess B12 from injections? Why are so many injections needed for so many years? Are we missing something? I could see symtoms returning after 2 months or so but 1 week or sometimes even days? What gives?

[Sleepybunny]

Hi,

Might be something of interest in this thread I started recently.

healthunlocked.com/pasoc/po...

[wedgewood]

People who have B12 injections mostly have Pernicious Anaemia / Autoimmune Gastritis. They cannot benefit from B12 stored in their liver because it goes through their digestive system , like food does , for which they need stomach acid and the Intrinsic factor in order for absorption to take place . Their parietal cells , which produce the stomach acid and the Intrinsic Factor , have been destroyed by the antibodies that they produce . Only about 1% of the B12 which takes that route can be absorbed in the ileum by PA/ Autoimmune Gastritis patients .

Pernicious Anaemia / Autoimmune Gastritis cannot be cured , so B12 injections are needed FOR LIFE . Also P.A. has not been thoroughly researched as yet . So why some patients need more injections than others to keep well , is a mystery. Maybe depends how long they have had P.A. before ADEQUATE treatment was commenced ? …… We don’t know. There is a lot we don’t know about it . Adequate research needs to be carried out . The people with the big money needed are not going to do it ( The Pharmaceutical industry — it’s not to their financial benefit)

The PAS is trying very hard with little money. It’s a marvellous Society . This forum is a god-send to us .

Best wishes .

[Mysteriillness in reply to wedgewood]

Thats such a good explanation thank you

[Casurvior in reply to wedgewood]

For me PA is caused by a genetic predisposition. In my case my liver fully stopped producing intrinsic factor after a medical issue where I had started organ shutdown due to severe dehydration. I was showing signs of vitamin B12 deficiency prior to this but no one recognized the symptoms. It still took time after the episode to the point I was within 6 months of dying that I finally received proper diagnosis and injections. I found out shortly after that my great aunt had died of same issue before it was fully understood what Vit B was. Many family members a B anemic. So to answer your question, there can be a genetic predisposition, a breakdown due to medical event or even as an autoimmune response. Others may have different stories. These were my medical answers.

[Raven_Cat]

fx9898, Sleepybunny and wedgewood are wise, both posts have much merit. Your question is valid, not one I asked, but wished to. I guess the valid answer is no one knows and as wedgewood mentioned.

This could be for many reasons as mentioned, as well as perhaps individual bodily functioning, genes, other conditions that are diagnosed/undiagnosed. No two people in good health are the same, lifestyle, diet etc... so it makes sense that with B12 malabsorption issues how they present and how they need to be treated is individualistic.

I believe that I am at the same stage (4 months since diagnosis and injections), but we would have had different treatment for a condition that we have (B12 deficiency).

I know full well that my previous doctor misdiagnosed me in 2022 because my bloods had Macrocytosis (MCV 112), but she did nothing, so I sat with this for two years before I crashed and was ordered to hospital by my new doctor. My life changing issues from 2022 were not addressed, lost my job etc... I have had this for a long time, therefore perhaps what my body needs is different to yours.

I believe at this moment that I should have injections at one to two week intervals, but have been playing ball with my doctors to get them on board. My current regimen of 3 monthly injections for life is in no way sufficient and I will be limping in with my current bloodwork to prove that next week.

By the same token, I am listening to everyone on this forum as they all have the same issue (malabsorption of B12) because they all have the experience of living with this condition, some for many years. I weigh their knowledge highly against any doctor that browses their sources without understanding this quite rare condition that they have not encountered, nor treated.

Anyway, good luck, I have put more information on your previous posts because, like you I am quite new to this and just trying to figure this out to gain optimal health.

[Iheartb12]

I don't have an answer for you but after having been on injections for about a year (3x a week, then 2 then 1). One time I stopped injecting for about 6 weeks. Blood work showed I had macrocytic anemia again after only 6 weeks no injection. So that's why I do weekly. Now I have been on injections for almost 2 years. If I miss a week I feel it.

[Cherylclaire Forum Support]

Are we missing something ? Aside from adequate B12, I'd say not much.

Mainly help from GPs and consultants who are generally insufficiently educated about B12 deficiency. The wide range and severity of symptoms have a huge impact on lives - and yet this fact seems to have bypassed those who should be equipped to help us.

There is a lack of understanding, a lack of research addressing this problem, and so B12 deficiency seems to have become trivialised as a condition, undertreated because of this and those who identify a need for an increase in treatment marginalised. Criticised if medical professionals, called hypochondriacs or addicts if patients.

The recent trend for GPs to suddenly stop treatment by injection and replace treatment with either tablets or a suggestion that the patient buy their own tablets or complete silence is becoming an epidemic. The only possible immunity appears to be a recent positive IFab test result.

Well, the only trouble with that is that the antibodies have to be active at the time of the test for a positive result. So in all likelihood, someone with little or no Intrinsic Factor left, so nothing left for the antibodies to attack, would be refused the necessary injections on the grounds of having returned a negative IFab test..

Do they know that 40-60% of those with PA will have a negative test result returned ? On balance, I'd hope not, although the evidence is there. But better it be that than any alternative.

I was diagnosed with functional B12 deficiency in 2016, after failing to respond to the usual loading dose treatment and then deteriorating on the usual maintenance regime. My MMA was raised - with no other cause. I was given 2 injections a week for 6 months. I now self inject twice a week. This mainly works in keeping symptoms manageable, but not always. My MMA dropped into range after three years.

We are all different - as with other condition/s. At different stages, with different sets of symptoms, in both range and severity, which unsurprisingly necessitates a variety of treatment frequencies. Some are lucky enough not to have permanent nerve damage, some not so lucky with that. Some are still able to work and even exercise and some can't get back there. An observant, intelligent and tenacious GP is vital initially, then continuity of care to ensure another GP doesn't mess this up further on.

But for many, this becomes an individual experiment because of the lack of useful guidance for GPs. If you look at the right hand column on this page you will see under "Topics", a subheading "All things Pernicious Anaemia Society". There is a survey, with results, about how often people feel they need to have B12 injections.

[Hockey_player]

The mechanism that healthy people have for "storing" B12 sends it to the liver and back through the digestive system where the intrinsic factor picks it up and sends it back into the body. When we are missing the intrinsic factor (because we have PA) , you can think of it as missing the delivery truck that is supposed to pick up the B12 and deliver.

[Hockey_player]

One thing that affects the frequency is the type of B12. I use cyanocobalamin because it is available without a prescription in Canada. I have seen some studies that measure how fast B12 is excreted. Cyanocobalamin is excreted faster than hydroxocobalamin. A very large percentage of both are excreted in a day or two.