B12 Levels How quick can they fall?

[cfc_b12]

Some quick info... I was diagnosed with severe B12 deficiency last year with a test reading of 94. I really was quite ill and close to collapse. I had a negative antibody test so I probably don't have PA. However, because of the COVID issue I haven't been able to have any more B12 injections since I was topped up 10 months ago. I had a B12 retest in June and it had already fallen to about 250 despite me taking 1mg B12 tablets several days a week. I'm starting to feel quite ill again but I'm not sure the local GP surgery will help. Back in June they seemed to think that 250 is OK so I'm not sure when I will get another injection. They just say 'keep taking the tablets'. It's as if they really don't want to give out any more injections and so far they haven't indicated when I might be tested for B12 again. My worry is that my B12 level will keep falling. One doctor predicted my B12 would be over 1000 last June because it was only 7 months since I had 5 injections. However, it was only about 250. Is it possible for the PA antibody test to give false negative?

[SunnyWorld]

Once you start injections you shouldn't be tested again it will always read high. The test for PA is very unreliable so you may have PA. The tablets won't work if you have PA. You will get more advice from people on here with much more knowledge than I have. It is a very frustrating journey. All the best

[Nackapan]

Yes it is. You obviously are not absorbing enough of the oral form.

Insist on injections if you are getting ill again .

[Seth12345]

You need Injections with a level that low..

Although the numbers don't mean much once you begin Injections, I've seen my value drop over 200 points in 3 days.

[fbirder]

Not only is it possible for the IF antibody test to give a false negative, it does so half the time. Download this - onlinelibrary.wiley.com/doi... and highlight the section on page 500 that talks about AbNegPA. That is what you have.

Engrave that section on a block of granite and beat your doctor about the head with it until your injections are reinstated.

Or just write a letter saying that you are worried about permanent nerve damage (as mentioned in the first summary (point 4). Include a copy of that BCSH paper with the highlights.

[cfc_b12 in reply to fbirder]

Thanks. One thing I noticed a few weeks after I had the injections was that I developed pins and needles in my hands and feet every morning. The GP said this was my nerves repairing themselves now that I had enough B12 in my system. However, this hasn't really gone away so I think I'm stuck with it.

[cfc_b12]

Thanks for all the replies. I do think I have more than just a diet problem with B12 but unfortunately the GPs at my local surgery will probably make me wait until December for any kind of retest. I had to wait a month for my first injection despite having a B12 score of 94. Back then they told me to try taking tablets whilst they tried to organise a free appointment. That was not a good month. However about two months after the injections I felt really good but it only lasted a few weeks before the gradual decline I've experienced since about February. I've been taking 1mg B12 tablets probably two or three times a week since then but it doesn't seem to help much. My symptoms seem to come in waves and it was like this when I was really ill with a very low B12 last year. I'd feel close to collapse but then have a reasonable day or two before feeling even worse a few days later. By the time I finally had my first injection I couldn't type on a keyboard properly and was struggling to walk in the evenings. I don't want to get that bad again.

[Gambit62 Administrator in reply to cfc_b12]

you don't need any further testing - you need to be treated correctly

whilst high dose oral B12 can work for some people it doesn't work for everyone and it sounds as if it isn't working for you

This is link to the current advice on treating B12 deficiency and absorption problems.

b-s-h.org.uk/media/18275/bs...

Suggest you share it with your GP and point out that the guidelines say that the period of use of high dose oral should be as short as possible, and that the tingling you mentioned hasn't gone away. You could try taking more of the tablets and see if that works but where they do work they are best used starting immediately after an injection.

[StaceyNZ2020]

I was having injections once a month, blood test in May gave a level of 1476. Got another blood test last week after no injections since May and level was 871. Hopefully that gives you a bit of a guide!

[Retteacher]

The aim of treatment should be to achieve clinical improvement in your symptoms not to simply return your serum levels to the normal range. The latter is not appropriate for a variety of reasons, which is why the British Haematological guidelines say that retesting after or during treatment is not necessary. Many reported attempts to treat with oral supplements do not even mention clinical improvement. If they do there is an improvement in as few as 20 to 30% of patients. The best figures that my husband has seen were reported by a French group treating gastrointestinal patients who helped only 46.5% of their patients. When patients are deprived of their injections, symptoms return much faster than would be predicted from studies on B12 storage in normal subjects. Neurological symptoms that develop can become permanent which is why the guidelines are very cautious about maintaining injection frequency especially whilst symptoms are improving. Dr Chandy, a GP who practiced in Co Durham describes in his book what happened to his many patients who were deprived of their injections by order of a PCT. A very eminent Professor of Medicine who reviewed all the patient records and met with many of the patients, described the stopping of injections as unethical.

[cfc_b12 in reply to Retteacher]

Thanks again to everyone for the replies. In my case I was very ill back in early October but didn't have an injection until November. I think I had five or six injections in about 12 days. I felt no improvement until about two weeks after the last injection and then I started feeling better and better as the weeks went by. By early/mid January I had excess energy which was a long forgotten feeling. However this only lasted a few weeks and the peak was probably only for two weeks. I've been taking oral 1mg tablets since February and I think this helped a bit. But I've generally lost energy and some weight and I tire very easily now. I've some way to go to decline to the awful way I felt last October but the most frustrating thing of all is that it only takes a nurse/doctor a few seconds to deliver a low cost injection to me. But they seem so keen to deny me this. It is as if they think I'm now cured and I won't get another injection until I fall really ill like last time.

[cfc_b12 in reply to cfc_b12]

I'm going to print off some of the info in the very useful replies and email/show them to a GP. I think my questions have now all been answered! Thanks again!

[Jojo565]

I hope you got into a hematologist by now? The cause of my B12 deficiency is unclear (though it seems genetic since I have 6 relatives with issues) but that specialist seemed to know the most about how to treat it. Oral megadoses work for some people in my family, but I need biweekly shots to stay at an optimal level.