B12 : My blood tests are borderline low... - Pernicious Anaemi...

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B12

Odinil profile image
6 Replies

My blood tests are borderline low for B12 my gp call it normal just got a new gp he also calls it normal.

I had a blood test done with Medicheck report recommended a blood test Methlmaloni MMA. B12 borderline low.

I have been supplementing with Better You oral spray and a B vitamin complex.

I asked gp for a MMA or a Pernicious Anaemia both were refused.

I have been blaming all my problems on levothyroxine im extremely sensitive to it and have been struggling but after reading some of the syptoms of B12 deficiency i seem to have many of the symptoms i want to rule out if its the B12 thats making me feel unwell.

I will have to pay for the blood tests so which one do i go for and which one will my gp actually take notice of as in the past when ive mentioned Medicheck they have pulled a face as if to say we dont take any notice of that.

PA OR MMA??

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Odinil
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6 Replies
Nackapan profile image
Nackapan

Firstly were your borderline results after taking oral b12 ? If they were after you arnt able to absorb much

If you started supplements after the blood results give them a chance

You mat be able to absorb from. Oral supplements.

See how you go and then get a level done aftef a couple of months.

Intrinsic factor antybody test picks up 50% of thoss with PA

. MMA and homosysteine tests coming out with high levels is an indicator for low b12

How borderline were you.? I would list your symptoms

Try and work with Gp.

Hopefully you started supplements after your 'borderline' result and they will work for you If taken duly preferably in 2 or 3 doses.

Go by symptoms though.

Then back to Gp saying yoh want a retest bloods in 2-3 months.

The last tests mentioned I think ard trickier to get . Others will know. Ivd never had any of them.

Also get your folate iron and vit d tested.

in reply to Nackapan

Oh I have an intrinsic factor on my results didn't know what it was. It doesn't say antibody just intrinsic factor and I think I saw homesciestien somewhere too. I have no ranges on my test do you know what the nonrmal number would be for intrinsic ? Thanks.

Nackapan profile image
Nackapan in reply to

I thought it was negative or positive 🤔Homocysteine shoukd have a range .or Google it.

A high level can indicate a b12 deficiency

Clinical symptoms is the most important.

Your doctor should explain results. I have this problem when collecting my print off.

I'm told by the receptionist everything is normal.

I wish i felt normal!!

Sleepybunny profile image
Sleepybunny

Hi,

Some links about B12 deficiency that may be of interest....

Some of them may have details that could be upsetting.

From personal experience, I can tell you it is possible to have severe B12 deficiency with an in range B12 result.

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Vital to get adequate treatment for B12 deficiency. Untreated or under treated B12 deficiency increases the risk of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

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?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

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.

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

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

Coeliac disease is another auto immune condition that can lead to B12 deficiency.

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

Another possible cause of B12 deficiency is exposure to nitrous oxide.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

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

Have you ever been tested for H Pylori infection?

patient.info/digestive-heal...

NICE guidelines H pylori

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

Click on blue boxes in flowchart for more info.

Any chance of internal parasites eg fish tapeworm?

As well as B12, have you also got folate, ferritin (or other iron tests) and full blood count results?

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Makes it clear that doctors should treat patients if clinical symptoms suggest B12 deficiency but results are normal range.

BMJ B12 article

bmj.com/content/349/bmj.g5226

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

Dietary B12 deficiency is sometimes treated with low dose cyanocobalamin tablets.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin

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

NICE CKS

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

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

Each CCG/Health Board/NHS hospital trust will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines on B12 deficiency for your part of UK and compare them with BSH, BNF and NICE CKS links.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic with an in range serum B12 result. Point 5 mentions Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the patient shows signs of B12 deficiency.

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 as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

CAB NHS Complaints

citizensadvice.org.uk/healt...

May be worth talking to local MP if struggling to get treatment.

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.

I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites, B12 books etc

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Shazy-B profile image
Shazy-B

Hi I’m just wondering how you’re getting on with the liquid Levo you were prescribed please. Are you feeling any better on it?

Odinil profile image
Odinil in reply to Shazy-B

HiIve been on it now for 10 days and i can't honestly say i feel any better. I struggle to get going in the mornings lack of energy wake up tired and seem to get more tired in the afternoons. On waking i have numbness in my fingers and pins and needles that wears off after i move them about. I thought i was going to feel so much better i still think i need some T3 but its down to my consultant to decide to give it to me although it could be my low B12 and not the levo but i keep being told its normal but its borderline low. Ive been supplementing with B12 but

havent noticed any difference. Im going to have a private PA blood test to see if i absorb B12 at least then i can rule it out and concentrate on getting my consultant to sort out my meds.

Im seriously thinking about seeing a private endo. To be honest im absolutely worn out with it all.

I'll give it another 7/10 days maybe it takes a while to work. I'll let you know how it goes.

Are you thinking of having it?

The brand is Tevo ive been told its not like the Tevo tablets. I dont know if liquid levo brands are all different like the tablets. Also i have noticed my stomach looks swollen and my weight has increased, ive also noticed my hair texture has changed its flat and looks thin.

X

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