Pernicious Anaemia Society
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Advice Please

Hi just looking some advice. Last April i was told i had a Vit B12 deficiency. At the time all i was told was it was not diet related and i would need injections for the rest of my life. After looking this up on the internet i came across PA. I asked the doctor if this was what i had and she basically said it probably was but the only way to diagnose it was a camera down the throat.

I get a injection every 3 months and the past few months i have started to feel a lot better, although i do notice myself deteriorating the last 2-3 weeks before my next injection but it is manageable. Have others found that it has took a year or 2 on the injections to get back to normal?

Is it normal to get bloods tested to check the level of Vit B12? I went to get my injection yesterday and the nurse said that after a year they would normally stop injections for 6 months so they could do a blood test. I said this was never mentioned to me and that i felt i couldn't go 6 months without getting my injection. I explained that i had bloods done a month ago for an unrelated issue. She said my vit b12 was high. I did get the injection but she said she would speak to the doctor before my next one. I'm concerned that they will stop the injections because of this high result despite me still having a lot of the symptoms.

Thanks

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Hi Poiuy if your Vitamin B12 deficiency is not diet related it would be good to know what caused it.

Anyone at any age, can become B12 deficient. 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.

Can you "see" yourself in any of the above people?

Your doctor seems to be a bit unsure about B12 Deficiency/P.A. so perhaps you could refer her to the NICE guidelines below.

Click on the link then on "Management Scenario" and "Treatment for B12 deficiency"

cks.nice.org.uk/anaemia-b12...

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None of the above relate to me.

Is there a blood test for PA? When i discussed PA with the doctor she said thats likely what i had and what i was getting treated for. I asked if there was a blood test that could be done to diagnose it, she said no the only way to diagnose it was to be referred to a consultant and the only way they could diagnose it was with a camera down the throat. But the consultant may or may not do that. To be honest i was happy enough with this, i had most of the symptoms relating to PA and since starting the injections these symptoms have reduced.

Is this wrong? Should i be asking for a second opinion? How are other people diagnosed?

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Hello Poiuy, I am glad you are getting the B12 injections and that they are helping.

I had stomach pain and difficulty eating prior to my diagnosis and I was diagnosed by a gastroenterologist by the camera procedure your doctor described above (an endoscopy). The doctor performing the endoscopy sent some samples taken during that test (painless biopsy) away to a lab. The result in my case showed possible autoimmune gastritis. Most people with autoimmune gastritis do not have the stomach issues that I was having for some reason.

To confirm the biopsy, my gastroenterologist then did two blood tests- one for intrinsic factor antibodies and the other for parietal cell antibodies. My parietal cell antibody test was very highly positive confirming the autoimmune gastritis/pernicious anemia diagnosis. I have read that testing methlymalonic acid and homocysteine levels are helpful in diagnosing PA as well but my doctor didn't test those, he just started me on B12 shots.

If you have autoimmune gastritis, the antibodies against parietal cells in your stomach destroy those cells over time. Parietal cells are responsible for creating intrinsic factor which is needed to transport B12 taken in from food (or oral vitamins) into the blood. Parietal cells also are responsible for creating stomach acid (hydrochloric acid) which is needed to break down food and for the absorption of very many nutrients that require an acidic environment to break down. (This has taken me months to understand).

I am afraid to ask for a second opinion myself right about now because I have finally gotten my doctor on board for the injections. I too, feel like I am going downhill too soon between injections. I am keeping a symptoms list and realize that I have to advocate for myself to get more frequent shots if I need them. I wish it was simpler.

In my opinion, if you did go to a gastroenterologist and they did get a definitive diagnosis of PA through endoscopy you may have less difficulty getting injections.

In the meantime if you haven't already started, keep a journal of your symptoms before and after and in between injections. Bring that information with you to your doctor's visits.

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This is what the N.I.C.E guidelines (I sent above) say about how your doctor should be:

Assessing B12 deficiency

How should I investigate a person with vitamin B12 deficiency anaemia in primary care?

Determine whether there is an underlying cause for the serum vitamin B12 deficiency (for example pernicious anaemia), by checking for serum anti-intrinsic factor antibodies.

Note that testing for anti-intrinsic factor antibodies is recommended in people with strong clinical features of B12 deficiency, such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal vitamin B12 level. For more information, see the section on Interpreting results of investigations.

Checking for gastric anti-parietal cell antibodies is no longer recommended to diagnose pernicious anaemia.

Determine whether the person has experienced complications of anaemia, or of vitamin B12 deficiency.

Basis for recommendation

The recommendations about checking for an underlying cause for B12 deficiency are based on expert opinion in the British Journal of Haematology Guidelines for the diagnosis and treatment of cobalamin and folate disorders[Devalia et al, 2014], and an article on macrocytic anaemias in the ABC of Clinical Haematology [Hoffbrand and Provan, 2007].

Checking for anti-intrinsic factor antibodies

Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%, but a low sensitivity of 40–60%. This means that about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia [Devalia et al, 2014].

The recommendation about checking for anti-intrinsic factor antibodies in people with a normal serum B12 level if there are strong clinical features of B12 deficiency to check for pernicious anaemia is based on expert opinion in Guidelines for the diagnosis and treatment of cobalamin and folate disorders published by the British Journal of Haematology [Devalia et al, 2014].

Not checking for gastric anti-parietal cell antibodies

Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014].

To determine whether you have P.A your Intrinsic factor needs to be tested but sadly not even that test is necessarily conclusive as it says above but as you have ruled everything else out hopefully you will get a diagnosis.

Please also remember to ask about your Folate level.

Be assured there is life after P.A. as I've had it for over 45 years and I'm still "clivealive". :)

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Some absorption problems can be treated - eg h pylori and tapeworm infection - others mean injections for life.

treatment on the basis of serum B12 results post loading shots is not in accordance with current recommendations for treatment in the UK - the serum B12 test doesn't provide any guide to what is happening at the cell level.

running out of juice 2-3 weeks before the next shot is not unexpected - there is no real evidence to support the 3 month regime currently used in the UK - just urban myth. many other countries use 1 monthl - eg Germany.

Recovery can take quite a while - depends on what damage was done and what was causing your symptoms - B12 is used by a lot of processes in the body and the same 'symptoms' can be caused by effects on a number of processes - though medics tend to believe it is down to macrocytic anaemia (another symptom) which would clear in 3-4 months.

current tests for PA as a cause of B12 deficiency is IFA - its pretty flaky as a test and gives false negatives 40-60% of time depending on the assay method. measuring gastrin seems to have potential to be a really good indicator of PA but not sure how well established this is as a potential test - certainly not mentioned in standards in the UK at the moment.

Sticking a camera down your throat is looking for evidence that PA has resulted in damage to the ileum - but it certainly isn't the only way of checking for PA.

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