Low B12 without the PA

[PaulaW61]

I've been diagnosed with having B12 deficiency as well as Folic acid deficiency. Does this mean that I have pernicious anaemia? My doctor said no, because I was not anaemic as my Iron was ok. As I understand it, I will have to have B12 injections from now on, and that I can't absorb it, which is the same as having PA, isn't it?

[clivealive Forum Support]

Hi PaulaW61 It's all a bit confusing isn't it?

I'm not a medically qualified person but I think the term anaemia in P.A. is misleading and another name should be found for it.

You can be B12 deficient for any number of reasons. Can you "see" yourself in the list below?

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

"Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

"

I wish you well

[PaulaW61 in reply to clivealive]

Thank you so much for this info! Clive

[Gambit62 Administrator]

As clivealive PA is a misnomer. It comes from history - whereby the effects of the disease were first identified as progressions in a particular type of anaemia.

PA is a specific cause of an absorption problem affecting the absorption of B12 in the ileum. The symptoms of PA are the symptoms of the B12 deficiency it causes. One of these potential symptoms is a form of anaemia known as megoblastic anameia ... or macrocytosis - in which the red blood cells are enlarged and slightly round ther than they should be. This symptom is caused because there isn't enough B12 in the cells in your bone marrow to make new red blood cells properly. The body uses B12 for other things - maintaining the lining around nerve cells, some processes in the brain and the processes that release energy in your muscles. People vary a lot as to which system is affected most by a B12 deficiency so anaemia may not be amongst the first symptoms to appear.

There are other absorption problems that will lead to B12 deficiency but PA is the most common. It is an autoimmune response.

So, PA doesn't mean anaemia has to be present ... though if your GP is saying that you don't have Pernicious Anaemia because the result came back negative then there is a 50% chance that he is wrong as the test is only about 50% accurate - so negative doesn't rule it out.

If B12 deficiency can't be linked to lack in diet then it has to be down to an absorption problem - others include lowering of stomach acidity as you get older, drug interactions, liver problems, bacterial and worm infections. There are some absorption problems that can obviously be treated but others obviously can't so the treatment is the solution is finding another way of getting B12 into you - which generally means injections (the licensed treatment in the UK).

[PaulaW61 in reply to Gambit62]

Thank you Gambit

[Foggyme Administrator]

Hi PaulaW61.

First, you can have B12 deficiency without having pernicious anaemia.

Iron deficiency anaemia is not the same as pernicious anaemia. In pernicious anaemia your blood cells would be large (Macrocytic) and in iron deficiency anaemia your blood cells would be small (microcytic). So...the fact that your iron is 'OK' does not tell you anything about whether you have pernicious anaemia or not.

Also - and not many GP's know this - you can have pernicious anaemia without having Macrocytic (large) red blood cells.

It's good that your GP has tested your folic acid (folate) levels since low B12 and low folate tend to go hand in hand. And B12 needs folate to work so both deficiencies need to be addressed at the same time.

Your GP should also test your for pernicious anaemia. He should test anti-IF and parietal cell antibodies. However, these tests are only 50% accurate, so even if you test negative, you could still have pernicious anaemia.

Your GP should be trying to identify why you have B12 deficiency (Clivealive gives some good examples in his reply) as the reason for the deficiency is not always to do with pernicious anaemia.

Having said that, the treatment for B12 deficiency is the same as the treatment for pernicious anaemia: B12 injections!

It is also important that you are put on the right regime of B12 injections.

If you do not have neurological symptoms, the treatment is 6 x 1mg of Hydroxocobalamin on alternate days (called loading doses) and then 1mg Hydroxocobalamin every three months.

If you do have neurological symptoms, the the treatment is 6 x 1mg Hydroxocobalamin on alternate days (the loading doses), then 1mg Hydroxocobalamin until no further improvement, followed by 1mg Hydroxocobalamin every eight weeks.

If you have neurological symptoms, it is important that you start on the neurological regime immediately in order to prevent potentially irreversible neurological damage. I say this not to frighten you but simply so that you can help your GP to help you quickly 😄.

Not many GP's know about the neurological regime so you may have to point your GP in this direction. The information is contained in the British National Formulary (BNF). Your GP will have a copy on his desk and can look it up. He may have to read a little further than usual: it's the second item down!

If you do not know if you have neurological symptoms, there's a symptom check list on the Pernicious Anaemia Society Website.

Also - there are some PAS pinned posts on the home page of this forum: they give lots of information about B12 deficiency and PA, together with treatment guidelines and a diagnostic / treatment flowchart that will help your GP to treat you properly. Some member print thes off and take them to show their GP's.

You may find that your GP is not very well informed about B12 deficiency and PA. Don't be surprised. This is, unfortunately, all too common. So you may find that you have to become your own expert and push for the treatment you need.

B12 deficiency and PA are complex illnesses and all of us here are learning all the time. Please do ask any questions and come back for help if you don't understand anything or have difficulties trying to get your GP to treat you. There are always people who will pop along to help.

Anyway PaulaW61, I hope this helps with some of your initial questions and expect that you'll have lots more in the future. Please let us know how you get on and we're here to help, if needed 😄.

Good luck X

[PaulaW61 in reply to Foggyme]

Thank you so much for the info