New - looking for some advice please! - Pernicious Anaemi...

Pernicious Anaemia Society
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New - looking for some advice please!


Hi there,

Sorry for the long winded post in advance!

I was diagnosed with a vit b12 deficiency in October last year (level was 144).  The only test done to check why was for Intrinsic factor which came back negative.  I'm 33 years old and had suffered with awful vertigo all of my life which would leave me incapacitated for days as I was so dizzy & sick.  Over the last 10 years or so I've visited the doctor complaining of awful bloating & gut pain (was fobbed off with it's probably IBS although I do not suffer with any of the other symptoms) plus I fell very ill & ended up in hospital for a week. I was exhausted & my mouth was covered in hundreds of ulcers so I couldn't eat or drink & ended up on a drip & steroids.  I now find out my b12 level was 66 at this point & yet no one did anything!  

Anyway, my new gp discovered the b12 issue by chance on a blood test which was done to try & find out why I cannot seem to fight off a viral rash called molluscum that I've had for over 2 years now. 

My IGA level also came back as 'high' - gp didn't know why so just ignored it.

My white blood cell levels are bang on the very lowest end of normal.

My question is could a gut issue be causing the b12 deficiency? My nephew suffers with SIBO and had similar symptoms - would this explain high IGA levels?

Could having this affect my immune system as I seem to have awful trouble fighting anything off especially this rash.

The b12 injections have given me acne & patches of dry skin so you can probably appreciate I feel like cr*p at the moment!

I now have a swollen lymph node which is rock hard behind my right ear.

I've booked another doctors appointment but any advice would be appreciated as I feel that you need to tell them what is wrong & how to treat it otherwise you get no where

Thank you :)


9 Replies

Yes B12 deficiency can cause many of your symptoms.  Your intestinal issues can be both food related ( gluten/ dairy ( casein protein)) or neurological ( vagus nerve).

Has your doctor started you on B12 injections?   You also probably need folate, although if tested before you start b12, folate may be high.

To be that low up probably have lots of neurological symptoms.  

Start a logbook of food, drink, meds and all symptoms.  Try to assess a severity score for each symptom.  New symptoms, very similar to existing symptoms, will show up once you start B 12.

The logbook supports any short term memory loss and provides evidence to kick your GP into gear.  

Food related symptoms appear 3 to 48 hours later.

After your loading dose you should continue with frequent injection until the neurological symptoms do not improve any further.

certainly I have PA and b12 injections but I have bad bloating and gut pains - I am sure they go hand in hand with the b12 deficiency.

Your GI symptoms sound just the same as mine (bloating, gut pain, diarrhoea). Mine are due to achlorhydria (lack of stomach acid). Both this and the B12 deficiency are caused by the same thing - autoimmune gastric atrophy. It sure sounds as if you have Pernicious Anaemia.

The anti-IF antibody test is very specific for Pernicious Anaemia, but it's not very accurate. About half of PA sufferers will test negative.

If you've been started on B12 injections than you should start seeing some improvements, although many feel worse before they start feeling better. Lots of sufferers find that the nonsensical 3-monthly regimen is nowhere near frequent enough. Some find patches or sublingual lozenges help a lot. Others self-inject.

For the gut problems, if it is achlorhydria then many have found relief by taking acid with meals. My preferred solution is about 40ml of lime juice in water/tonic water/orange juice taken with each meal. Others like Apple Cider Vinegar instead. A good probiotic (Symprove, Bio-Kult or raw organic sauerkraut are commonly recommended).

I've put together a summary of useful documents that you may want to look through and perhaps show your doctor.

in reply to fbirder

I find a glass of orange juice at bed time goes a long way.


Lack of B12 certainly affects the ability of your immune system to fight infection.

Unfortunately a lot of the feeling cr#p that we associate with being ill is the body fighting the infection so as your immune system gets stronger and starts to fight infections better you can ironically feel a lot worse.

Just after I started treating myself with the levels I needed (yes, there are, as fbirder implies there is a lot of variation in how much B12 people really need) I had a stinker of a cold - first time I'd had a runny nose for ages but actually it felt like a good sign as not having a runny nose had been a sign that my body wasn't really fighting the infection properly.  The acne is another classic reaction that may well indicate that your immune system is starting to kick back in.

If you had acne when you were younger then it can get really bad and you may need to look at some ways of treating it - we all have a lot of bacteria living on our skins - some of the bacteria respond to high levels of B12 by producing a toxin that can cause really bad acne- this doesn't affect everyone and if you haven't had problems with acne in the past then the situation you have is likely to be transient - the immune system getting rid of problems that have been around for a while but it hasn't had the strength to fight and should go when the body has cleared them,  rather than the acne caused by bacteria on the skin.

I still have problems with some infections and rashes but these are nowhere near as bad or as long lasting as they were before I started treatment with B12

B12 also plays an important part in cell reproduction so abnormalities in the blood would be expected ... though classically B12 is associated with macrocytosis.

The high igA is a sign that you are fighting an infection - which wouldn't be a surprise and not a significant factor at the moment so don't think there is a problem with your GP 'ignoring' it - more like confirming and being consistent with something you already know - not new information though if it continues ...

You need to monitor you folate/F9 levels - if these fall then you won't be able to process the B12 it is receiving.  If you had anaemia then your GP should also be monitoring your potassium levels as these can fall during the early stages of B12 treatment as the body uses up potassium in processing B12 and doing all the things it needs to do with B12.  Potassium is something you can overdose on so work with your GP on that one.  

B12 is something you can't overdose on ... though high levels can cause some problems and is a factor in why some people need much higher levels of B12 than others.  People also vary in how they respond to different forms of B12 ... so see how things go for a month or so and then if necessary experiment.

If you had any neurological symptoms - tingling and numbness - and at the levels you report I'd be surprised if you don't then there is actually a different treatment regime - injections every other day until symptoms stop improving followed by injections every 2 months.

refer to p8 for treatment regime.

This assumes you are in UK and being treated with hydroxocobalamin.  Other countries have different regimes and US tends to use cyanocobalamin - and has maintenance every month.

You might find it useful to go through this checklist of symptoms as it is often difficult to really get a grip on how much B12 affects/can affect a person - I had 40+ years of depression and anxiety before I got my B12 levels under control.


You might find it useful to point your GP at the following site


With fbirder on the stomach issues - may well be low stomach acidity - unfortunately the symptoms can be very similar to high stomach acidity so can frequently be treated with things that lower the acidity even more - so worth being aware of that


Useful B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Martyn Hooper is the chair of the PAS(Pernicious Anaemia Society) and has writtten several books about PA and B12 defic.


PAS tel. 01656 769 717

The PAS are helpful and sympathetic and can sometimes intervene on behalf of members. Lifetime membership costs £20. They usually respond within a few days to phone messages.

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

Very comprehensive book about B12 deficiency. Has lots of case studies.

UK B12 Documents/articles

Recent documents make it clear that people who are symptomatic should be treated even if B12 blood levels are normal range

Google "BCSH Cobalamin and Folate Guidelines"

"The only test done to check why was for Intrinsic factor which came back negative"

I hope your GP knows that it is still possible to have PA (pernicious anaemia ) even if IFA test is negative. The BCSH Cobalamin and Folate guidelines mention Antibody Negative Pernicious Anaemia. Martyn hooper tested negative more than onc eon IFA test before testing positive.

Coeliac Disease

Have you ever had a Coeliac Test? Coeliac disease can lead to deficiencies in B12 and other nutrients because the disease can affect the gut.

Coeliac UK tel. 0333 332 2033

"My IGA level also came back as 'high'"

Other useful links

This website has a section on writing to Gp if unhappy with treatment.

I am not a medic just a patient who has struggled to get a diagnosis.

Great advice from everyone. As Sleepybunny suggests, get tested for Coeliac disease too. Some of your symptoms sound as if it could be a factor, including the neurological symptoms and rashes. From what people report, often there's more than one condition involved which can make diagnosis and treatment difficult.

Speaking personally, giving up gluten made a positive difference to my health, so as difficult as the diet is to maintain, I've persisted.

Hi ask your gp  to refer you to a gastrologist as they could look into why you are deficent and other gastro issues and also try you on diffrent  b12 injection x 

I'm so sorry you're having such a bad time and, with B12 that low, I hope you're GP is treating you with injections as BNF guidelines, every alternate day until no further improvement.

As you've already suspected, many researchers believe autoimmune problems are linked to leaky gut/intestinal disease.  I believe this is at the bottom of all our own family autoimmune/thyroid/B12 issues.  

Personally I've found that, avoiding gluten and taking daily spoonfuls of sauerkraut for gastritis & H/pylori, IBS  etc.  (more good bacteria than any other probiotic), has meant all my long standing digestive problems have disappeared, is hopefully healing the micro villi and helping absorption of B12 as well as other essential nutrients.  Dr Marc Ryan wrote one of the best articles (on Facebook) I've read on this and here is an extract:

"Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"

"Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.

Many researchers believe that this is ground zero for autoimmune disease.

It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.

The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.

This is the place where absorption happens.

And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)

One of the reasons for this is the breakdown of these brush borders.

Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.

The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."

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