Tracking your B12 changes after injections? (Please share if so)

[Pante]

Hey everyone.

In November 2022 I tested positive for parietal cell antibodies with a B12 deficiency.

I started loading doses of B12 with weekly injections (of 1000 mcg/mL cyanocobalomine) over 1 month, then monthly injections since then.

A friend had a similar situation. After she started injections, her B12 shot way up right away after her loading doses. Mine has only been slowly inching up:

- November: 114 pg/mL

- January: 289 pg/mL (after 4 weekly loading doses, increased by +175 pg/mL since November)

- March: 320 pg/mL (after 3 months of monthly doses, increased by only +31 pg/mL since January)

I asked my doctor about the slow increase. Here's what she said:

RE: B12 levels not being as high as you thought after your 4 loading doses:

Previous guidance I've received from our hematology department (on a different case) was that it is actually not atypical for B12 levels to lag a bit behind repletion, and for clinical improvement to take even longer (6-12 months). After your comment, I went looking for data to help answer the question but didn't find much in the time I had to search.

So... Maybe it could take 6-12 months. But like her, I checked the National Library of Medicine and the National Institutes of Health (nlm.nih.gov/), and I did not find studies/articles indicating that it should take 6-12 months for B12 to recover after injections. I have found many anecdotal reports (from folks like us, via forums) saying their B12 bounced back quickly after injections.

What are your B12 levels over time before/following injections?

Please share the data if you're willing. Thanks either way.

*

Notes:

I am not vegan/vegetarian, which can cause low B12. I have an autoimmune-caused B12 deficiency.

No diagnosis of Pernicious Anemia due to a negative intrinsic factor antibody test in November.

I was tested for Autoimmune Atrophic Gastritis via an upper endoscopy; they found virtually no inflammation/irritation — no gastritis — but they diagnosed me with AAG anyway as a diagnosis of convenience (since it's clear I have *something* but they're not sure what).

[wedgewood]

Just because you don’t get a positive rest for Intrinsic Factor Antibodies, does NOT mean that you don’t have Pernicious Anaemia. All doctors should know this ! About 50% of Pernicious Anaemia patients test negative to the test . So bear that in mind !

There are other conditions that lead to B12 deficiency.and it’s symptoms.

An infestation of fish tape-worm

abuse of nitrous oxide ( laughing gas)

Long-standing use of Proton Pump inhibitors ( eg Omeprozole , and other PPIs)

infection of Helicobacter Pylori

Some medications eg Metformin and some others.

Gastric bypass ops used in weight -loss surgery .

Recovery will vary according to how long you have been B12 deficient . And anyhow we all vary wildly in recovery times . If b12 deficiency treatment is delayed too long , some symptoms may be irreversible.

It’s impossible to say how long recovery will take . We all vary so wildly in our make-up .

Best wishes. .

[Pante in reply to wedgewood]

Thanks for these notes.

For IFA: I recently asked my doctor for another IFA test.

I did have a prior h.pylori infection (I have a low level of antibodies for it), but they did a blood test and a stool test recently and both showed a negative result.

No prior stomach-related surgeries. No abuse of drugs like nitrous oxide. I'm not on any relevant medications. Also negative for celiac disease, which I forgot to mention.

I've never been tested for a tape worm though...

[Nackapan in reply to Pante]

I would concentrate on your symptoms improving and response to b12 injections .Helicobactor pylori I've been told hard to get rid of .

Some needing more than one round of treatment.

[JHEW0836 in reply to Pante]

Just curious as I can’t figure out why or how I’m B12 deficient either. I’m not vegan/vegetarian, nor am I on any medications that would cause a deficit. I was perfectly healthy until I started having deficiency symptoms after having an asymptomatic case of COVID. Since so little is known about the long term effects of COVID on your body, I’m wondering if B12 deficiency is of them. My original level was 252. After 2 injections 2 weeks apart and then one 30 days later it only went up to 316. I switched doctors because he did not think I needed more frequent injections and told me it was anxiety. I have since had 4 injections in 4 weeks but still symptomatic and have no idea where my level is at but I still don’t think it’s high enough.

[Skimmingstone226 in reply to wedgewood]

I’d be very grateful for some advice. A week ago I had an Endocopy and 3 biopsies. I’ve been told I have Gastritis and have been prescribed Lansoprazole and I’m still waiting for biopsy results. I’m reading here that taking this medication is contra to B12d but if I’m getting bimonthly B12 injection at docs and SI every four weeks myself is it okay to take this medication? Presumably I’m bypassing the absorption route anyway. I read that Auto immune Gastritis is common with PA. I also have been diagnosed with mixed connective tissue disease/Lupus.

[wedgewood in reply to Skimmingstone226]

Yes , taking B12 as injections means that it by-passes the normal absorption route . I hope that you don’t take them for too long , as your stomach acid will be drastically reduced . Stomach acid is needed to aid breakdown and thus absorbtion of all the other vitamins , minerals and trace elements .

Autoimmune Gastritis is a better name description for Pernicious Anaemia.

Best wishes .

[Skimmingstone226 in reply to wedgewood]

Thank you for your reply. It has been so helpful. If it hadn’t been for this forum I wouldn’t be getting x 8 weekly. I wouldn’t have a diagnosis of PA and to be honest I’d be incontinent, been diagnosed with early onset dementia, menopausal and MS. My PA symptoms were dismissed for so long and now I am told I have Lupus. I don’t know how or if these autoimmune conditions are linked but I’m just grateful to be able to control my PA . The rest is in the lap of the Gods. If anyone has dietary advice to share I’d be very grateful.

[Orchard33]

Four months after my loading shots my level was in the 340s. It had been 90. It fell with only 12 weekly injections so I repeated the loading shots privately about 7 months after the original ones. After SI for 5 months my level was 2000 plus. This was shown by a blood test for an unrelated matter. I was concerned my GP would stop my treatment but he didn't do anything other than confirm I was having, by this time, 8 weekly injections. I will continue with SI twice weekly for the foreseeable future.

[Gambit62 Administrator]

Testing B12 levels after starting on injections may well be a waste of time. If you measured levels just after the shot it would be off the scale and then it falls over time as it is removed (mainly by the kidneys). In someone who doesn't have an absorption problem B12 levels are regulated by using stores in the liver. These are released in bile and the B12 is then reabsorbed in the ileum. If you have an absorption problem this mechanism doesn't absorb the B12 so it ends up passing all the way through the gut.

Unless you had a B12 baseline before you were diagnosed you won't know what the right levels for you - different people have different levels that are right for them and they vary a lot.

The last two results you have are not materially different - the serum B12 test is only accurate to 20% so they are within the range for testing on the same sample so it could be that 300 is about the right rate for him.

As Wedgewood says- focus on what is happening to your systems and forget about trying to test B12 levels.

[Hidden]

My doctor keeps including B12 in my blood tests and it is always high. Last one was a day after my injection and it was 2,000. Of course it would be high as it was still floating around in my blood but what it is doing on a cellular level is anyone's guess. She says it has been replaced and I should be on 3 monthly injections by now. I've tried to space my injections further but I continually find 1 and a half weeks is my limit. I have just gone 4 weeks and the last 3 have been terrible. Most of my symptoms (numb feet, extreme tiredness, lethargy, almost depression, balance issues and memory and mixing my words) now I am also having numb fingers. I have an appointment tomorrow for my injection and I'm going to insist on getting the next one in a week or just over. I'm working on increasing my stomach acid because I've done a ton of research into low acid and vitamin B12 deficiency. Look it up. It is very interesting and just confirms why I will never take a PPI or any other acid reducing medication. Especially long term.

[Wwwdot in reply to Hidden]

jennyettie

You sound on the right track. Be led by symptoms is the only way forward. I self inject every other day for almost 6 months and trying to increase the intervals if I can based on my symptoms.

Keep what energy you have to enjoy life rather than battling and educating the NHS!

Best of luck.

[Litatamon]

It is a dangerous slope to get your b12 levels tested on a regular basis.. Why? Maybe your own GP understands that it does not mean much, but he or she could retire, change practice, you could move and those documented levels could be in the hands of someone who has no clue what they are doing..Too many people are taken off injections because they are now in the 'normal' range. This erroneous mistake by many medical professionals can wreak havoc on people's health. My own sister had that on/off erroneous practice for years & I wonder if there is damage that will never repair itself, because it went on for so long.

Some good reads -

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

And to answer the question I went from 103 to 440 after loading doses When my GP continued to test, I had a direct talk with her. I said I know you have a good handle on b12 deficiency (a stretch) but not everyone does and by testing you put me behind the eight ball when/if I need to see other doctors and specialists. As they might not understand, as you do. And it did happen. A neurologist did not understand at all - he told those shadowing him I needed to eat more meat, and a clinic doctor told me your b12 level is fine, I don't know why you are still having shots.

[Cherylclaire Forum Support in reply to Litatamon]

Sorry to hear that, Litatamon .

How disheartening it is that your neurologist has people shadowing him that might take as gospel every personal opinion that he throws their way. Another generation of patients that will have to fight to keep symptoms from returning.

Not to mention your own experiences: the months of waiting to see a consultant, the hope, the preparation, the anxiety - just to be dismissed like that. Another door slamming shut.

What you say is true. My GP, like many others post-pandemic, has now left the practice. Two others from the same practice left recently too. All three now work in hospitals. What a loss for this area.