Following my low b12 I was prescribed loading injections of which I have had three and starting to feel a lot better! Hurrah!!!
However I had a call from a GP today to say they requested further testing and my intrinsic factor has come back as normal, therefore they believe the cause to be dietary and because of this I have no need for the injections and can just take supplements instead.
Now, I have insisted that I complete the course of injections because they have made me so far feel a lot better, to which she agreed I could. I have also made an appointment to see in person the original GP that prescribed the injections because he seemed to be a bit more aware.
I did tell her I have only been vegetarian and vegan for a year and was supplementing with fortified foods, therefore was unlikely to be dietary, but she went quiet and didn't seem to be able to offer any further advise. Basically she wanted to withdraw the current course of injections and any further injections.
My appointment with the doctor is on 26th - I would really like to go with some verified research about testing, diagnosis and treatment.
My main concern is breast feeding a baby with b12 deficiency and the harm that could cause.
Any links to any verified research that I could print off and take with me would be most grateful.
Thanks a lot! Hope you are all feeling well
Hannah
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Hannahroobs
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The anti-IF antibody test is notorious for giving false negatives around half the time. Download my summary - frankhollis.com/temp/Summar... - and the BCSH and NICE documents linked to therein. Those two documents should persuade the doc that your deficiency is ABNegPA (antibody negative pernicious anaemia) and needs to be treated with injections.
Glad to hear that you got the loading shots and managed to keep them reinstated - and best of luck with the other doctor - really important that the B12 levels are kept high.
You might find it useful to get hold of Could it Be B12? by Sally Pacholok - has a lot on B12 and paediactrics and has numerous references to scientific studies.
May also be worth making sure that your GPs are aware that macrocytosis isn't always one of the first symptoms to appear with a B12 deficiency and certainly isn't the cause of all of the symptoms. I had neuropsychiatric symptoms that I can trace back over 40 years and neurological symptoms that go back over 25 years ... and I've never shown any signs of macrocytosis - but I've always had a diet that would have been high in folate - and high folate levels can mask the macrocytosis. Basically GPs shouldn't be using macrocytosis as a way of gauging the severity of the the B12 deficiency.
I now this is going to get blamed on my diet even though I was supplementing and eating fortified foods. I don't know how I am meant to argue against that... Is there any evidence out there of how long b12 stores take to deplete?
Also I understand from the documents linked by fbirder (thank you) that half of people with PA have negative results from intrinsic factor but not sure it explains why that is or how to treat people that have b12 deficiency but neg IF?
If you are talking about depletion of the stores in the liver then the answer is that there isn't going to be anything out there because it will depend on the severity of the absorption problem which will vary from person to person and will also vary over time- but it is known that it can take years and in some cases even decades - I can trace my symptoms back over 40 years so definitely decades in my case.
Whilst PA is a cause of a deficiency there are many others - including gastric band surgery and low stomach acidity - which is frequently mistaken for high stomach acidity as the symptoms are pretty much the same - and mistreated as high stomach acidity making the problem worse.
In some instances people can get enough B12 from really high oral doses but it doesn't work for all people and the doses available on the NHS don't fall into this category - but are just about treatment for people who genuinely do have a dietary B12 deficiency.
I don't think the reasons why the IF test is inaccurate - which are likely to be quite technical around the testing process - should matter to your GP - they just need to be aware that the tests aren't 100% accurate - but for some reason many don't seem to be able to grasp that simple fact ... because very few tests are actually 100% accurate - almost everything about B12 is surrounded by tests that really require interpretation and looking at the symptoms - ie a holistic approach to looking at the patient that most GPs just don't have (may in part be because the system doesn't allow them the time but ....) It is unfortunate that the guidelines tend to focus on PA as the cause whereas really they should make it quite clear that dietary deficiency is unusual and would only really be likely in someone who is a strict vegan or eating basically no animal products.
Hi Hannaroobs. Quickly, 'cause it's late...50% negative rates - due to the test itself being inherently inaccurate.
The treatment for PA is the same as the treatment for B12 deficiency, so people who have B12 deficiency should be treated with B12, irrespective of their IF status (as per all guidelines). But medics don't always know this.
It's therefore much easier to get medics to prescribe B12 injections if a definite PA diagnosis is made. However, even with a PA diagnosis, many find that the standard treatment protocols do not provide sufficient B12 for them to get and stay well. Some fight for more, some decide to self inject.
It might be worth saying that whether you have PA or not, your GP should be treating your symptoms, not,your blood test results. And even with a negative IF test and no evidence of macrocytosis, you can still have PA, as others have said.
And you can have an B12 absorption problem without having PA. This would mean that B12 tablets would not work for you. (It would be interesting to know if you have any gastric problems, or have you taken PPI's, or had gastric / intestinal surgery? In short, there are a number or reason, other than PA, why you may not be able to absorb B12.
It might be worth simply asking your GP if she's prepared to risk your baby's health - and ask her to write in your notes that she accepts this responsibility and is willing to be held accountable.
have you checked the b12.deficiency.info website? They have some very good and concise information and you may find something about breastfeeding and B12 deficiency there.
Have the books by Martyn Hooper and Sally Pocholok been recommended to you? May be something in there...
Sorry but I have to stop now....I'll have a quick trawl for information tomorrow when I have a brain and will add to the thread if I can come up with anything.
Also - if you look at the first post I wrote (click on my username and it will take you to my profile), I was sent lots of guidelines and useful information that will help you with you GP. In particular, look for BNF, NICE, NEQAS, and BMJ. I see you have fbirders summary document - very good summary of the guidelines that are out there.
Hi Hannahroobs I'm not a medical expert but wonder whether you will ever get enough B12 by eating "fortified foods"... What sort of RDA level do they contain?
Also do you know what your Folate level is as this is essential to process the B12 you are getting from your injections?
Have a look at page 29 in the "BCSH Cobalamin and Folate guidelines". it shows the recommended proces that a GP should go through with someone they suspect of having B12 deficiency. This page also mentions Antibody Negative PA. It is possible to have PA (Pernicious Anaemia) even if IFA (Intrinsic Factor Antibody) test is negative.
Do you have any blood relatives with PA as it can run in families. See next link.
Do you have any neurological symptoms? My understanding is that someone with b12 deficiency with neuro symptoms should have extended loading doses for as long as their symptoms continue to get better then injections every 2 months whatever the cause of the B12 deficiency.
.Info on recommended UK b12 treatment is on page 8 of the BCSH Cobalamin and Folate guidelines. Has your GP read the BCSH Cobalamin and folate Guidelines?
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