As injection schedule decreases, symptoms are returning!

[HopetoB12better]

So as some of you know (Seth12345), I was diagnosed with b12d about 8 weeks ago. My loading doses were: once a day for 7 days, once a week for a month and once a month for a year. I just completed the once a week for a month, with the last injection being one day late, on the 8th day. Two days later (yesterday), I stated to get that familiar burning feet syndrome where the top of my feet and ankles feel like they are severely sunburned. My next injection is in a month. There is no way I can make it that long so I will probably be joining the self injecting club. Although I know this is a roller coaster, I felt absolutely great for 6 weeks. My 2 concerns are 1) if I did bloodwork right now (which I did have early on when I first stated injections), I know my b12 levels wood be good or even elevated, so how can I feel symptoms?? And 2) I tested neg for intrinsic factor so I still don’t know why I don’t absorb it. I eat plenty of meat and dairy and always have. I had an endoscopy and my GI didn’t really have a reason as to why I don’t absorb it.

I’m the kind of person that seeks an answer for everything and I am wondering what everyone’s “reason”’is for not absorbing b12?

Ugh. Seth12345 warned me of the ups and downs. So depressing to be going backwards.

[wedgewood]

Yes if I were you I would seriously consider self-injecting when the symptoms start returning so soon . Yes if you had blood tests now , your B12 would certainly be very high , of not totally off the scale . So why , you ask, are symptoms returning ,now that you have so much B12 ? Well someone on this forum tried to describe the phenomenon like this . —Imagine we all have a container in side of us ,which fills with B12 when it’s injected . The cells that need the B12 can’t get it until the container is full and overflows. We all have differently sized containers , so we all differ as to how often we need the injections that keep the symptoms at bay . No use telling that imaginative tale to your doctor though ! We don’t know the reason it happens , but a well-informed doctor will know about this

Not enough research has been done on Pernicious Anaemia . I know people who inject 1-2 times a day . I know someone who is fine on 3 monthly injections . I need weekly , so I have to self-inject . .

Don’t forget that the Intrinsic Factor Antibody cannot be counted on to reveal all those patients that have P.A. About 50 % of the time the test does not reveal any I.F. antibodies in those who have P.A. . Our Chairman had to do the test 3times before he received a positive result . He had been B12 deficient ( caused by P.A. ) for years .

So think about self -injecting if you get no joy from your doctor .. We will all help you .

[HopetoB12better in reply to wedgewood]

Thank you wedgewood - I enjoyed every word of your reply!!!!!

[HopetoB12better]

Where do you live, Wedgewood? I’m near Cleveland, OH.

[wedgewood in reply to HopetoB12better]

I’m in Cheltenham , Gloucestershire , England , so only about 3 1/2 thousand miles ! 💐

[HopetoB12better in reply to wedgewood]

🤣🤣🤣🤣🤣

[Nackapan]

K would list your neurological symptoms and try and stay on weekly.

I still dont know why I dont absorb b12.

The timing is spot on for menopause though 2 years later deficient . So I think just not producing enough stomach acid. ??

I've not been given an intrinsic antybody test.

I was tested by outdated. P C A

I was negative

If I remember rightly only 10% can have PA with a negative test. I dont think positives are reliable with this test?

Ar the present I'm just trying to get better . Like you i like reasons.

The very low b12 caused many falls do that might be involved??

None of the neurologists agree. I seen 3.

Like most if not all on here a very good diet. So assumed ab sorbing.

Folate I can from food. Have needed iron for the first time ever.

All my examinations MRi ct have concentrated on my brain a nd neck.

[Hidden]

I have microscopic colitis but also a family history of PA and I had the same in the beginning so was put on injections every two weeks. I SI every week now because I like to run and it's so much less stressful taking control yourself. Good luck ♥️