Advice on low B12 results

[Allie20]

B12 levels 110ng/L [180-1,000]

I have Graves’ disease and take PTU

Fluctuating between hyper & hypo.

Any suggestions re B12 - intrinsic antibody level came back as negative.

[Gambit62 Administrator]

A negative on IFA doesn't mean anything - the test isn't very sensitive so gives false negatives around 50% of the time - just an inconclusive result.The fact that you have Graves, an auto-immune disorder, makes you more likely to develop another auto-immune disorder ... and the most likely cause of a B12 absorption problem is PA so ...

Sorting out the B12 may help with sorting out the medication levels for Graves but ...

[Allie20 in reply to Gambit62]

Thankyou Gambit62 for sharing your knowledge and understanding of this it is very much appreciated. At least I know it could be inconclusive at this time.

[JanD236]

I have Graves’ disease too but luckily my IFAb test came back positive and so I was started on B12 injections without any hassle.

As Gambit62 says, the IFAb test is prone to false negatives (indeed I later had a second test which was negative).

You don’t mention it but I assume you’ve been offered a loading dose of 6 every other day B12 injections followed by an injection every 2 or 3 months?

[Allie20 in reply to JanD236]

Hi JanD236 Thankyou for sharing your knowledge and understanding of this. I speak with GP today and I am hoping that she will agree to B12 injections my ferritin & folate are on the low range too. I just want to feel well again it’s been so long and I’m so fed up now with feeling this way constantly exhausted all the time. My alkaline phosphate levels are also above the high reference rage any idea about this?

Thankyou in advance 🙏

[Sleepybunny]

Hi Allie,

I hope yu will find some answers here and I'm sure you'll find support.

I'm going to post a lot of information in links below so I suggest you take at least a week to sift through it so it's not so overwhelming.

Some links may have details that could be upsetting.

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

b12deficiency.info/what-to-...

If you suspect PA then worth joining PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

Search online for "Antibody Negative Pernicious Anaemia".

About 50% of people with PA test negative on IFA test.

About 10 - 20% of people with PA test negative on PCA test.

Gastrin test

labtestsonline.org.uk/tests...

I have also read that a pepsinogen test can help to diagnose PA.

PAS website has lots of useful leaflets/articles and a page for health professionals that your GP may find useful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Do any of the risk factors below seem likely?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Have you been tested for coeliac disease?

UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

NICE guidelines Coeliac Disease

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

If you've been tested in past and had a negative result, check your GP followed recommended diagnostic process - some don't.

More on Coeliac UK website

coeliac.org.uk/home/

Have you been tested for H Pylori infection?

H Pylori infection

patient.info/digestive-heal...

Any exposure to nitrous oxide?

Nitrous oxide is a gas that's sometimes used for pain relief/anaesthesia.

It's in gas and air mix used as pain relief in labour.

Nitrous oxide inactivates B12 in the body.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

One potential sign of internal parasites is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with Full Blood Count results.

Search online for "parasites B12 deficiency" for more info.

Has your GP reviewed any medication you are on?

There are some drugs/medicines that have been associated with low B12 in some studies eg metformin, a diabetes drug, PPI drugs, some anti-epileptic drugs and others.

Concerns about medication should always be discussed with a doctor. Local pharmacist may also be helpful.

Treatment

With a result that is that low, what treatment is GP proposing to give you?

Vital that people with B12 deficiency get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage.

If a patient has both folate and B12 deficiency, B12 treatment is usually started first.

Treating folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Link below outlines two patterns of treatment for B12 deficiency in UK

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

If you have neuro symptoms, has your GP put you on the treatment pattern for those with "neurological impairment"?

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info).

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

If you want to know why I recommend knowing what's in the local guidelines, read blog post below

b12deficiency.info/gloucest...

A warning ....

B12 deficiency is not always as well understood as it should be among some health professionals.

Worth knowing what some of the common misconceptions are in case you meet a health professional who has some.

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK BNF treatment has changed since above blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Cherylclaire Forum Support]

Sorry to hear you now have two health problems to deal with.

As Gambit said, this will most likely be an auto-immune condition too - so would not be surprising if your B12 deficiency was caused by pernicious anaemia. A family's medical history can provide pointers.

My mother had vitiligo and psoriasis. Two of my sisters have Grave's disease, one of them has psoriasis too and more recently one of my nieces was diagnosed with both Grave's disease and B12 deficiency.

I am lucky to only have B12 deficiency to deal with.

I have had two or three IFab tests now- with no positive results.

My ferritin and folate were both also on the low side -and were treated for 3 months with tablets because my hair was falling out and gums bleeding. Difficult to disentangle symptoms, as vitamin deficiencies quite often all look like general malnutrition. Later, nurses said they knew how ill I was because I was grey.

Where to apportion blame for each symptom- which vitamin/mineral is the culprit ? Only time and monitoring (chart, diary) can answer that, but a good GP will know what tests to do and where these tests aren't always perfect, and will keep checking the important results (ie not B12 once injections have started !)

Also get vitamin D checked, as I was found to have osteoporosis of the spine, osteopenia of the neck.

You will be able to improve symptoms with proper guidance and support, but it can take a while. I hope you have spoken to your doctor now and been reassured about this.

The people here are very helpful, so any concerns, just ask.