Cause of my b12 deficiency - Pernicious Anaemi...

Pernicious Anaemia Society
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Cause of my b12 deficiency

Hi everyone

I posted here a few months back after getting b12 deficiency diagnosis and am now on 3 monthly injections.

I was confused as to what caused this as doctor didn't give much information. Having been on this site and researching quite a bit i think it may have been the result of h pylori as i had this a few years ago and have used ppi on and off for yearsand I'm not a vegetarian.

My question is will I always need injections and can I ask for them more frequently as i had my last one 2 weeks ago and feeling tired and breathless again.

Sorry this is so long a message and many thanks 😁

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is it possible your Ferritin ( Stored Iron ) is low as this could cause breathlessness. If it is low in range then having a full Iron Profile done would be helpful. Did you manage to have your folate tested as suggested by clivealive in your last post/thread ? I would also test VitD as PPI's can inhibit the uptake of vitamins and minerals ...

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Hi Marz

Thanks for reply. I had a full blood count but don't know if ferritin is included in that?

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The Full Blood Count does not include Folate - Ferritin or VitD. FBC tells you about red and white blood cells. I would request all three 😊

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I will do that thank you. Have not been to confident approaching the gp.

Many thanks 😁

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When B12 is low it can follow that other vitals will be low too. Be polite but firm 😊

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Yes I will thanks

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Hi Ningy13

If you look at the latest B.N.F. guidelines below you will see that the formerly rigid "Every 3 months" has been relaxed so ask your doctor to check.

bnf.nice.org.uk/drug/hydrox...

Indications and dose

: For HYDROXOCOBALAMIN

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

As to the cause of your B12 deficiency they are many and varied and can include:

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, or infections such as h-pylori 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), Pancreatic insufficiency, 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.

Do you eat meat, fish, seafood, eggs, poultry and dairy produce as these are natural sources of Vitamin B12? Can you add plenty of green vegetables such as broccoli, sprouts, spinach, asparagus, peas, beans etc for folate and iron and some fruit afterwards?

There's a lot to be said for the old, traditional "meat and two veg" type of meals.

I am not medically trained.

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Hi Clivealive

Thanks for this info. I do eat all of the above except fish/seafood.

Which is why i was confused about how b12 was low but after all the research and help here it could have been the h pylori.

Thank you

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was the h pylori treated? if so and you became B12 deficient after that then it would suggest that h pylori isn't the only thing going on.

Why are you taking the PPIs? were they prescribed because of the h pylori or do you experience problems with acid reflux? Acid reflux is a symptom of low stomach acidity as well as high stomach acidity and low stomach acidity is something that will affect the absorption of B12 from your food.

On the whole it sounds as if you will need to be on injections for life - though you could try really high dose oral supplements - but you really need to start those immediately after the loading doses. Whilst they can be helpful in maintaining B12 levels they are unlikely to be effective at raising B12 levels once they have fallen again post injections.

Suggest you keep a diary of symptoms in relation to the injections. Many people need to maintain much higher serum B12 levels post injections than they did prior to injections which is why, if possible treatment should be based on symptoms - though getting a GP to allow 2 weekly injections can be extremely difficult (particularly if you are in UK as the license for hydroxocobalamin is for 2 monthly injections (vagaries of the licensing system rather than any danger from it being administered more frequently

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Hi Gambit62

Yes I have had treatment for the h pylori about 3 times over the years and ppi medication prescribed. I dont take it as much now but will take it if I have a flare up of indegestion/ heartburn as was told by Dr this was the h pylori causing it. I wasn't aware that thus could be a result of low stomach acid.

Thanks for this is helpful.

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Hi Gambit62

Just a question, but if you can feel the burning sensation from your stomach acid coming up, wouldn’t that mean you have a lot rather than a little?

I thought GERD was caused by a weak esophageal sphincter, which causes the acid to back up in the esophagus. (heartburn) Don’t PPI’s and H2 blockers dilute the stomach acid so you don’t feel the burning? Would this contribute to an apsorption problem of B12?

What are your thoughts? I’m not a doctor but I just like to reason from cause to effect. Make sense? Not saying that you don’t as I’ve read your posts and you’re quite knowledgeable. I guess too, if a person has weak acid from using the above, to correct the problem, use things like betaine or lemon juice, don’t drink with meals, and don’t lay down with food on your stomach.

I say these things because I had these problems (I used an H2 blocker for years) and I corrected them by following my own advice. I feel much better and the neuropathy that I had is completely reversed. It took me over a year.

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terrybraden, low stomach acidity means that there isn't anything to turn off the production of gastrin so your stomach keeps producing gastric juices which can then back up giving you heartburn. I used to get some quite significant heartburn - so bad that I had to throw up as the only way of getting rid of it. Less now that I take something acid with my food ... and for me it goes if I take something acid.

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Hi,

Some B12 info for you

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for PA? In UK this would be an Intrinsic factor Antibody test.

Tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Links about H Pylori

patient.info/health/dyspeps...

patient.info/doctor/helicob... (this link is aimed at doctors)

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

More B12 info in pinned posts on this forum. I've written other more detailed replies. may be worth searching for them.

I am not medically trained.

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Hi sleepybunny

Thank you so much for this information.

No I haven't been tested with PA however i feel more confident now approaching Dr with this information.

Many thanks 😁

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Sleepybunny may not have noticed your reply - it is coming up as a response on this thread rather than a response to her. Mentioning her so she will notice.

you can mention someone by typing @ immediately followed by their name. A list of name should start to come up - just click on the right name. This will send them a notification.

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Hi again,

"am now on 3 monthly injections."

As clivealive mentions BNF guidance has changed recently to every 2 or 3 months for those without neuro symptoms. Some GPs tend to use a book form of BNF so your GP may not know about change if they haven't seen updated BNF online.

See this PAS news item on subject.

pernicious-anaemia-society....

Do you have any neuro symptoms eg tinnitus, tremors, tingling, pins and needles, burning sensations, numbness, memory problems, balance problems, restless legs, migraine?

B12 deficiency can cause many other neuro symptoms besides these.

If yes to neuro symptoms then BSH Cobalamin and Folate guidelines/BNF indicate following treatment pattern

A B12 loading jab every other day for as long as symptoms get better (could mean weeks even months of loading jabs) then a jab every 2 months. BSH Cobalamin guidelines (link in my post above) are clearer than BNF that this treatment pattern applies to any cause of B12 deficiency where there are neuro symptoms, even diet.

Under treated B12 deficiency, whatever its cause, may lead to permanent neurological damage including spinal problems.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD.

martynhooper.com/2010/09/21...

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

When you started treatment did you receive recommended number of loading jabs?

In UK, recommended treatment for B12 deficiency without neuro symptoms is

6 B12 loading jabs then a jab every 2 or 3 months.

So in UK six loading jabs if no neuro symptoms. Loading jabs every other day until improvement stops if patient has neuro symptoms.

I've assumed you're in UK. Other countries have different treatment patterns.

"No I haven't been tested with PA"

I am very surprised that PA has not been tested for. I suggest reading BSH Cobalamin guidelines and BSH flowchart to see when PA should be tested for or talking to PAS.

It is possible for someone to have more than one cause of B12 deficiency at same time eg PPI usage and PA

If you think PA is a possibility then may be worth joining and talking to PAS (Pernicious Anaemia Society. Contact details in my post above.

Blog post about how PAS can support those seeking a PA diagnosis.

martynhooper.com/2017/06/24...

I have read articles that suggest there may be a link between H Pylori infection and developing PA. May be worth searching for info.

ncbi.nlm.nih.gov/pubmed/184...

Intrinsic Factor Antibody test is available privately. Test may give a false positive if blood taken close to B12 jab or B12 supplements.

PA may still be a possibility if IFA result negative. BSH Cobalamin guidelines refer to Antibody Negative PA. Your GP may not be aware of this.

You haven't mentioned if you have been tested for Coeliac disease.

Have you got copies of past blood tests?

Two tests are recommended in UK for Coeliac disease

1) tTG IgA

2) Total IgA

tTG IgA checks for an antibody to gluten.

Total IgA checks for IgA deficiency. People who are IgA deficient will not make the antibodies to gluten that tTG IgA checks even if they have Coeliac disease so they will need other tests for Coeliac disease.

UK GPs sometimes only do tTG IgA test even though both are recommended in NICE guidelines on Coeliac disease.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Referrals

Have you seen a gastro-enterologist?

My understanding is that if H Pylori type symptoms continue after eradication treatment then patient should be referred to gastro specialist. Click on relevant boxes in next link.

pathways.nice.org.uk/pathwa...

A gastro specialist should be able to spot gut damage due to PA, H Pylori, Coeliac etc.

A neurologist if neuro symptoms are present?

A haematologist if neuro symptoms are present?

NICE CKS link in my post above indicates that GPs should seek advice from a haematologist for any patient with B12 deficiency with neuro symptoms.

Has your GP done this?

I asked for relevant referrals by writing short, polite letters to GPs. I put relevant info in, such as symptoms, family history, blood test results and extracts from UK medical documents.

Words of caution: Lack of understanding about B12 deficiency can exist in specialist doctors as well as GPs. I recommend being well-informed about B12 before any specialist appointments.

Some interesting English articles on Dutch B12 website.

stichtingb12tekort.nl/weten...

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Any chance of internal parasites?

Fish tapeworm can lead to severe B12 deficiency. Increased eosinophils may indicate possibility of fish tapeworm infection. Eosinophils are a type of white blood cell. Eosinophil results can be found on Full Blood Count test results.

There are other parasites than may affect B12 levels eg Giardia Lamblia

ncbi.nlm.nih.gov/pubmed/345...

"feel more confident now approaching Dr"

Help for GPs

1) Section on PAS website for health professionals. They can join PAS for free.

pernicious-anaemia-society....

2) PAS article " An Update for Medical Professionals: Diagnosis and Treatment ". Access to PAS members only. Some on forum have passed this to GPs.

pernicious-anaemia-society.... See Page 1.

3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" .

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