Please bear with me completely new to this! Up until May this year I'd never heard of B12 or PA but after a blood test I discovered my B12 level was low, too low to take tablets and I needed 5 booster injections weekly.
I've gone 12 weeks and feel pretty crap, been having headaches, IBS attacks and severe tiredness but trying to get information from the doctors about what's going on is like getting blood out of a stone.
I've been back today for my bloods done again to check the level of B12 but they are not checking the instrinsic factor in my stomach like some other blogs have mentioned. Surely if I've had these these booster injections my levels shouldn't be that low?!
I suppose my main concern other than that I'm feeling rubbish is that I'm 29, looking to start a family in the not so distant future and I've read up about how it can cause fertility problems or even cause a baby to be born disabled.
If anyone has any advice for me going forwards it would be much appreciated. As a lot of people have already said it is very frustrating how medical professionals seem to just brush it off as something and nothing.
Thanks
Written by
Becky88C
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My original test was 148 and will get the result back from today on Thursday. Folates I'm sure were tested first time round and must have come back normal as they haven't flagged up a problem.
I have suffered with tummy troubles and IBS for about the last 10 years so well before any injections but I've not taken any medication for it other than over the counter buscopan.
My diet is ok- I don't like red meat and never eaten it all my life. Im very careful with eggs as I was told I am intolerant- as a component is something else seems to be ok but I don't eat them on their own. Everything else on that list I eat a fair bit of in all honesty.
I shall wait to see what they come back with on Thursday but I'm assuming that if the levels are ok they are just going to put it down to a blip and leave it at that 😑
Becky, would also be useful to know what country you are based in - loading regime you have had isn't one that is associated with the UK - might be used in the US.
Using serum B12 as a single measure of B12 deficiency is problematic before you have started treatment - becomes even more so after injections as they introduce a new factor that means that the normal range really doesn't apply - on average people who are being treated with B12 injections seem to need levels of 1000pmol/L to feel okay - which doesn't mean everyone does - just that there is so much variation afterwards that normal range isn't a good guide at all.
In general GPs don't really know much about B12 - and because of the way specialisms work most specialists don't know much either as its symptoms cut across many different specialities.
You may find it useful to take a look at the PAS website and think about getting one of their books and build up your understanding of B12 deficiency that way.
Was it the doctor who put you on the five weekly loading doses? Perhaps it's a local standard, as different areas do seem to vary a lot, but the National standards are clear that the normal loading dose is 6 doses over two weeks, and then every 3 months for life (with a more robust regime if you have neurological symptoms like tingling/numb fingers or toes).
With a few exceptions (infection that is cleared up, or clear dietary deficiency as in some vegans), then the treatment is needed for life, as a B12 deficiency does not just 'clear up'.
The guidelines also make it clear that testing bloods for B12 after the injections have started is mostly not necessary, unless they are concerned that the levels are still too low. Having a high B12 after an injection is expected, but it does not mean the issues is solved. At the very least, the bloods should be taken after the 3 monthly period, to see what your levels have dropped to. Bloods taken shortly after the dose are normally to check whether any anaemia signs present in the blood have reduced (Not everyone with B12 deficiency has these signs anyway, but I don't know in your case - if a full blood count was taken that would tell us)
Unfortunately, these all seem to be noticeably absent from many GPs understanding of the subject, and out of date ideas or guidelines are regularly being used.
The test for Intrinsic Factor antibodies should usually be taken before you start on a loading dose, although the test is notoriously inaccurate, so a negative result doesn't rule out you having PA (a positive result means it's fairly certain though).
In one sense, the test is not that important as long as the GP is following the correct guidelines. B12 deficiency is supposed to be the treated the same as PA - with the 3 monthly (or sometimes 2 monthly) injections for life.
There are some reasons for B12 deficiency though, which your doctor should possibly be looking to rule in/out. Given your stomach issues, have you ever considered coeliac disease or Chron's disease, as they can both be a of cause B12 deficiency, even when they are relatively mild. I've had mild IBS symptoms for years and may be seeking that test at my next doctors appointment, just to be sure,
Given the lack of clarity, I wonder if it would be worth writing to your doctor, asking for a written diagnosis of your condition and the treatment for your records (perhaps also asking what guidelines he is following in relation to your dosage). Letters are usually placed as part of your medical record, so are useful to make sure things are clear for you and for him.
It may be worth seeking a referral to a haematologist to consider all your symptoms together and try to get a grip on a treatment that will improve your symptoms (that is supposed to be the whole point after all!), or possibly a gastroenterologist. They should both be more aware of the issues B12 deficiency can cause.
Finally, you should be able to ask at your surgery for a print out of your blood test history. Depending on what was done, the other figures may help some of the experienced people on this forum get a better idea of the situation. Doctors tend to ignore results that are within the range, but a progression over multiple tests, or a certain combination can be indicative of the best direction to seek further info on.
The 148 figure you were given will either be in pmol/l (in which case it is right on the bottom of the 'normal range' in the guidelines) - or ng/L, which would be below the range in the guidelines - the range varies depending on who did the test though, which is why it is necessary to know before being able to say much more.
There are people here who will be able to give you good advice, so do keep us updated - I have only found the forum recently, but suspect I already know more than most of the medical professionals I have spoken to about B12!
Yes the doctor put me on 5 injections, I had noticed most people had been receiving 6. I also received my injections once per week for 5 weeks instead of every couple of days over a fortnight because they didn't have the available appointments.
Initially, I asked the nurse why I couldn't take supplement tablets and that's when she replied that my levels were too low for that- people within normal range should be over 180. I don't know if that helps anyone identify what it was measured in- from your comments I know that there's different ones depending on your GPS. This is why I suppose I'm finding it hard to believe that after that they are saying it could have 'cleared up', I don't want to go another few months down the line, them to be low and need 5 again.
I have been tested for Coeliac's and as far as I am aware they tested me for Crohn's at the same time all of which came back normal. I did noticed that I seemed to have a severe IBS attack 2/3 weeks before the 3 months were over so perhaps it could be down to this. I think it maybe a good idea as you say to either request a print out of all the test results I have had or even write a letter in the hope that they can clarify things for me a bit more. By the time the latest blood tests come back and I can get an appointment I will be nearly 4months since having any B12.
I suspect I will have to phone up to find out the results, will keep you updated.
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