B12 deficency

[catieuk]

Had no clue, until I googled it tonight, that I had pernicious anaemia. No idea that is the name for b12 deficiency. They say everyday is a school day.

[catieuk]

I have been made out to be mad, deranged etc, imagining my symptoms, even guided to this site via Google, I had no idea this is what I suffered from. I now order my b12 from Luceb and will now inject monthly, as my GP as suspended my for life injections. Despite my reporting worsening of electric shock symptoms, muscle spasms, brain fog, falling etc.

[pvanderaa]

Welcome. Some consider the genetic version as PA and the acquired version as B12D. In either case the symptoms and resulting nerve damage are the same.

Are you on injections?

The people here are very knowledgeable so feel free to ask anything that concerns you about PA.

There is also the pernicious anaemia society (PAS) for additional reading and support.

[catieuk in reply to pvanderaa]

This site led me to Luceb where I ordered my first purer form of b12. The bus one left me feeling like in had been hit by the West coast mainline express. I could not get off the floor. Still I just thought this was a link to b12 deficiency. No clue it was pernicious an emia. I am eternally grateful to this site. I have since been diagnosed with vit d deficiency, so my bloods are all over the place. So disgusted that my symptoms have been ascribed to my imagination all of this time. Talking over 10 years worth, following death of severely disabled child. Started with numbness of upper left thigh.

Will continue to buy from Luceb and begin monthly injections to try to combat the symptoms. Why is it so hard to get a GP to accept that you need these for life????

[pvanderaa in reply to catieuk]

Getting through the “I’ve got a hypochondriac on my hands” phase with your GP is something we have all had to get through.

One tool that has helped me twice (in the UK and again in the USA) is to keep a logbook of all your symptoms and assess a severity score each day.

When you visit your GP, hand them a printed sheet of all your symptoms, especially the neurological and psychological ones, and ask for it to be included in your file. Somehow holding the paper in their hand convinces the GP to consider the possibility.

They are looking for evidence so gather it and give it to them in written form.

Also, have a calm discussion with them about the logbook and ask for additional suggestions to monitor.

Treat the GP as a partner in this investigation and challenge them to think outside of what their computer is telling them.

[topher2018]

Not all b12 deficiency is pernicious anemia. b12 deficiency resulting from diet, for example, is not pernicious anemia. Pernicious anemia seems to refer to a b12 deficiency resulting from the permanent loss of stomach cells required to process and absorb b12 in your gut. Apparently this can happen due to an autoimmune process, infection, or surgery. So if you have b12 deficiency but still have healthy, functioning pareital cells you do not have pernicious anemia.

[catieuk]

Mine is not diet related that much I know. Neurologist told me that much xxx

[clivealive Forum Support]

Hi catieuk

Below is an extract from Martyn Hooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" explaining the causes of P.A. as opposed to those of a B12 Deficiency due to diet, medication, infections (such as H-pylori) other autoimmune disorders etc. - the list goes on....

"In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum.

Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.

Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".

In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

"

Sadly the Intrinsic Factor Antibodies (IFA) test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

Have you had your Folate level checked?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Sleepybunny]

Hi,

"been made out to be mad, deranged etc, imagining my symptoms"

Sorry to read this happened to you. Sadly it is not uncommon amongst forum members to have difficult experiences with doctors, I was told I was a hypochondriac and my symptoms were psychosomatic.

"my GP as suspended my for life injections"

People with PA need injections for life. There are other causes of B12 deficiency that require lifelong treatment.

Are you in UK? I'm asking because patterns of B12 treatment vary between countries. Some info below may not apply if you're not in UK.

Links to B12 info

B12 Deficiency Symptoms

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...

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 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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around world. Can offer support and info to people seeking diagnosis of and correct treatment of PA.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

"as my GP as suspended my for life injections"

Might be worth joining and talking to PAS about this.

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

B12 Awareness (USA website)

b12awareness.org/

Stichting tekort (Dutch B12 website with English language articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about "What to do next" if B12 deficiency suspected.

b12deficiency.info/what-to-...

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-...

Coeliac Disease

NICE guidelines Coeliac Disease (UK document) recommends that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease (spelt Celiac in USA).

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Ever been tested for H Pylori infection?

patient.info/health/dyspeps...

Parasite infection eg fish tapeworm?

Ever had any surgery involving nitrous oxide? Nitrous oxide can inactivate B12 in body.

Nitrous Oxide

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

Were you ever tested for PA? Your doctor may not be aware that it is possible to have Antibody Negative PA.

Best piece of advice I ever got was ....

to always get copies of all my blood test results. Some forum members get copies of complete set of medical records. Can be very interesting to see what has been written about a patient in the past.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

Neurological Consequences of B12 Deficiency

Some doctors seem unaware of the potential neuro consequences of untreated or under treated b12 deficiency. Inadequate treatment may lead to further deterioration including spinal problems.

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

I am not medically trained.

[catieuk]

I am in the UK and I intend to request all my blood results, that should be a fun experience lol.

Having read this forum I do feel reassured that I am not alone xxx

[Sleepybunny in reply to catieuk]

Hi,

I tend to put queries about treatment etc into brief, polite letters which may have symptoms, relevant family history, extracts from relevant UK b12 articles/documents.

In UK, my understanding is that letters to GPs are filed with medical records so are therefore a record of issues raised. See letter writing link in my post above.

There are some GPs who may be irritated by patients who write letters.

"I intend to request all my blood results"

Maximum cost in UK is £10 for set of blood test results.

May be worth considering getting complete set of medical records. Maximum cost £50 in UK. Some GP surgeries have online access to a summary of results/records but this is just a summary and may not have all info wanted. May be worth asking for access to paper files.

Your records may give a clue as to what GP thought was causing B12 deficiency and if you were ever given an Intrinsic factor Antibody test (test for PA), Coeliac tests etc.

NICE CKS link in my first post recommends that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. If you have neuro symptoms, did GP contact a haematologist?

If yes to neuro symptoms, have you ever seen a neurologist?

Process of obtaining results/records may vary in different parts of UK.

help for GPs

1) PAS website has section for health professionals. They can join PAS for free as associate members.

pernicious-anaemia-society....

2) PAS library section has leaflet "An Update for Medical Professionals: Diagnosis and Treatment", available to PAS members only. Some forum members have passed this to GPs.

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

B12 books I mentioned in first post may be available from library service in your county/area.

"my GP as suspended my for life injections"

These blog posts from UK B12 blogs may be relevant to you.

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

b12deficiency.info/blog/201...

b12deficiency.info/blog/201...

[catieuk in reply to Sleepybunny]

It was a neurologist who diagnosed b12 deficiency. Yes I have Neuro symptoms which include muscle twitches and spasms, pins and needles and electric shocks. Never been referred to a heamatologist. Will ask next time I go as I now have to have by vitamin d recycled when I finish high potency course.

Xx cat xx

[Sleepybunny in reply to catieuk]

Hi,

As you mention neuro symptoms, is your GP aware of the risk of SACD, sub acute combined degeneration of the spinal cord, in people whose B12 deficiency is untreated or under treated?

Some forum members have passed PAS leaflet about SACD to GPs (link in above post).

More info on SACD in my post above.

Link about writing letters to GPs about Under Treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Some useful info about neuro damage from b12 deficiency in this link.

b12deficiency.info/b12-writ...

See UK NEQAS B12 Alert.

"my GP as suspended my for life injections"

Has GP seen this PAS leaflet " Treatment is for life ".

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

You would need to be a PAS member to access it.

PAS membership

pernicious-anaemia-society....

[topazrat]

My G.P. didn't tell me that I had P.A. either. My I.F. and Parietal cells came back positive and I was just told that I had to have injections every three months for life. No information, no support. Wasn't even told what the injections were for!!

Luckily I found this wonderful place and now I am slowly becoming my own expert, learning more each time I visit.

[Ryaan]

B12 deficiency is a deadly thing, gives you alot of horrible symptoms. I thought it was just happening (the symptoms) due to age and is normal. I was wrong. The good news is PA can easily be treated. At least you know the problem.

Hope you’re being treated properly and hope you feel better soon.

Takes a bit of time but you get there so nothing to worry about.