Tablets

[Emmapemma]

Hi All, I started taking these cyan b12 tablets as doctors didn't want to give me injections as my b12 Still is ok but I have symptoms and wanted to do something to stop them. Started taking them two weeks ago and my mouth is full of little ulcers and my tongue is so sore. Also have had slight issue with my bowels since as well. From reading other posts I understand it can get worse before it gets better so is it just to continue or would it make a difference what tablets I take? Would I be better off with drops? I hate this pain in my mouth as I love to cook and eat good health food.

[clivealive Forum Support]

Hi Emmapemma You'd probably be best to go back to your doctor or pharmacist and show them the ulcers/spots. It could be something in the formula of the tablets that you are allergic to.

I am not medically trained,

[Sleepybunny]

Hi,

Are you in UK?

Surely you should be on B12 injections. You mentioned in an older thread the possibility of PA.

It is possible to have PA even if IFA (Intrinsic Factor Antibodies) are negative. This is called Antibody Negative PA.

You also mentioned symptoms in family members.

I don't have time to add much more today so suggest you look at my recent replies on other threads as they are usually detailed.

Have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 documents

If you're in UK I suggest reading all of these below.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA should be diagnosed in UK.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic for B12 deficiency even if B12 level is normal range.

BNF

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

BNF guidance changed recently. GP may not be aware that it has changed.

News item from PAS website explaining change.

pernicious-anaemia-society....

NICE CKS

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

I will try to add more tomorrow.

I am not medically trained.

[Sleepybunny]

Hi again,

Some more B12 info.

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...

Has diet been excluded as a cause?

Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?

If yes to B12 rich diet then it become less likely that B12 deficiency is due to diet and more likely that there is an absorption problem in gut eg Coeliac, PA, H pylori plus other possibilities.

If there's a potential absorption problem in gut then I think GP should try to find out what it is.

If GP is convinced it is diet even though you eat plenty of B12 rich food then can be worth writing down a typical weekly diet for GP as evidence you are eating B12 rich food.

What does GP think has caused your B12 deficiency?

Have you been tested for Coeliac disease?

NICE guidelines Coeliac disease suggests anyone with unexplained B12, folate or iron deficiency should be tested.

If yes, did you have both tests below? Some UK GPs only test tTG IgA even though both tests are recommended.

1) tTG IgA

2) Total IgA

tTG IgA checks which patients have a particular antibody to gluten.

Total IgA checks who has IgA deficiency.

People with IgA deficiency do not make the antibodies to gluten that tTg IgA test checks for even if they have Coeliac disease so they need different tests. See next two links.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Access to Medical Records (England)

Have you been tested for H Pylori infection?

patient.info/health/dyspeps...

Internal parasites?

Fish tapeworm can lead to severe B12 deficiency.

Exposure to nitrous oxide?

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. Think they use a network of specialist doctors in UK.

hdapatientcaretrust.com/

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".

UK B12 Blogs

There may be stories on here that are relevant to you. There are several about people seeking PA diagnosis.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Best piece of advice I ever got was to always get copies of all my blood test results.

Some on forum get complete set of medical records. Some UK GP surgeries have online access to a summary of results/records. Details on surgery website. This is just a summary and may not have all the info wanted, may be worth getting access to paper files.

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

b12deficiency.info/what-to-...

In relation to B12 issues, I look particularly at B12, folate, ferritin (or other iron tests) and Full Blood Count.

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...

Neurological Symptoms

Do you have any neurological symptoms eg tingling, pins and needles, numbness, vertigo, balance problems, memory problems, word-finding difficulties, restless legs, tinnitus, migraine, tremors? There are many other possible neuro symptoms.

If yes, have you been referred to

1) a neurologist?

2) a haematologist?

NICE CKS link in my first post recommends GPs should seek advice from a haematologist for patients who have B12 deficiency with neuro symptoms. Has GP done this if neuro symptoms present?

Untreated or under treated B12 deficiency may lead to permanent neurological damage including spinal problems. Is your GP aware of the risk of SACD?

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 letters to GP if under treated for B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

BSH Cobalamin and Folate Guidelines make it clear that people with B12 deficiency with neuro symptoms should be on following pattern of treatment..

A B12 loading jab every other day for as long as symptoms continue to get better (could mean weeks even months of every other day jabs if improvement continues) then a jab every 2 months.

This pattern is recommended if neuro symptoms present, whatever the cause of B12 deficiency even diet.

Note jabs are recommended, not oral tablets. See also BNF and NICE CKS links.

If patient does not have any neuro symptoms then recommended treatment is

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

GP may not know that guidelines now say every 2 or 3 months. it used to say every 3months.

Oral Treatment

Oral B12 tablets are only recommended in UK for dietary B12 deficiency. See BSH Cobalamin guidelines. So if your diet is B12 rich I do not understand why you are on oral tablets.

The cynic in me wonders if oral tablets are sometimes recommended due to being cheaper? Giving jabs requires nurses' time so can be expensive for GP practices.

martynhooper.com/2017/03/22...

martynhooper.com/2016/08/02...

Other referrals

If you have gut issues have you been referred to a gastro-enterologist?

Gastro specialist may be able to spot signs of gut damage due to PA, Coeliac, H Pylori etc

I think it's probably worth you contacting PAS.

[Emmapemma in reply to Sleepybunny]

Thanks sleepybunny for all the info. I'm not on the injections as the drs say my serum b12 is normal and it is over 500. It's just I've been going to my Dr for the last year with feeling tired, headaches and joint pain and when they found the antibodies (paretal cells not intrinsic factor) and I learned more about b12 it all just made sense to me. They did do celiac test, diabetes, thyroid, folate. They are all normal. I thought tablets may give me something and berocca vitamin tablets I took before Christmas made me feel so much better but then looking at what was in them there was more folic acid than b12 so I got a bit worried about taking them due to masking symptoms of b12 deficiency so I got these pure b12 tablets to take but they have not had the same effect. I will go back to my GP, I guess I have the feel of them thinking I'm waisting their time... Thank you again for all the info and I will join PAS when I get paid next.

[Sleepybunny]

Hi,

I've assumed you're in UK.

Some of the info I've linked to is UK specific and may not apply if you're elsewhere.

"not on the injections as the drs say my serum b12 is normal and it is over 500"

I had multiple typical symptoms of B12 deficiency including neuro symptoms with majority of B12 results between 300 - 500ng/L. As I was "normal range" I could not get treatment from NHS for many years and continued to deteriorate.

UK B12 guidelines eg BMJ and BSH Cobalamin guidelines (links in posts above) indicate that people should be treated for B12 deficiency if they have symptoms consistent with B12 deficiency even if they have "normal range" results.

Has GP considered the possibility of Functional B12 Deficiency? This is where there is plenty of B12 in the blood but it can't get to where it's needed in cells.

Next link mentions Functional B12 Deficiency and being symptomatic with normal range B12.

b12deficiency.info/b12-writ...

"they found the antibodies (paretal cells not intrinsic factor)"

Parietal Cell Antibody test

labtestsonline.org/tests/pa...

As I mentioned in other post, it is possible to have PA even if Intrinsic Factor Antibody test results are negative. Antibody Negative PA is mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" and also in BSH Cobalamin guidelines.

"They did do celiac test, diabetes, thyroid, folate. They are all normal."

UK Coeliac guidelines recommend two tests. If they only did one test for Coeliac disease then I don't see how they can be confident you do not have it. I suspect that GPs have just done tTG IgA test but not Total IgA test. See my post above for more info.

UK Coeliac guidelines also suggest that people with negative test results in Coeliac tests but with symptoms suggestive of Coeliac disease should see a gastro-enterologist.

If you weren't eating much gluten in your diet then it's possible that a negative result may be due to not enough antibodies to gluten being in your system.

Did your GP explain that you should be eating plenty of gluten in more than one meal a day for several weeks before Coeliac tests?

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

Some people have neurological problems caused by gluten.

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

Which thyroid tests did you have? in UK, Gps often only test TSH. This will not give a full picture of thyroid Function. I suggest you put any thyroid results on Thyroid UK forum on HU.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

I suggest you get copies of all your blood test results if you haven't already and check them carefully. There may be charge for making copies.

These days I do not trust being told "it's normal" unless I have copies in my hand after finding abnormal and borderline results in the past on copies after I was told everything was normal. Some UK GP surgeries have online access to a summary of results/records. Details on GP surgery website. This is just a summary and may not have all the info wanted. May be worth asking for access to paper files.