Cause of b12 deficiency? Should I get... - Pernicious Anaemi...

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Cause of b12 deficiency? Should I get private bloods?

Gemgem123 profile image
17 Replies

Looking for advice. Been having b12 symptoms on and off for awhile: nausea, tingling in body burning on hand, tiredness, brain fog. 10 months ago I was told I was slightly deficient and to supplement, repeat bloods in 3 months. Told they came back fine (I have never had the values for any of my tests but going off nhs RR) I then started getting bad again so had bloods again. This came back I was a bit defiency again and was given 100mcg cyanocobalamin and blamed on diet as I suffer with reflux (mostly feeling sick, pressure in stomach). I’m unsure if this should be investigated or what I’ve been given is okay as my gp told me I must be sensitive when my levels drop a bit. I feel crap all the time and I’m only 23 and could stay in bed all day. Should I pay to have active b12 and Intrinsic factor?

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Gemgem123 profile image
Gemgem123

Also I keep going dizzy a lot and have lost 12% of my body weight since the new year

PointOfReference profile image
PointOfReference in reply to Gemgem123

Can I ask, did the GP suggest it's diet related or do you think it is?

Gemgem123 profile image
Gemgem123 in reply to PointOfReference

He said it was diet related. Only because I said the reflux is making it hard to eat over the past couple months

Moggy1234 profile image
Moggy1234 in reply to Gemgem123

Hi Gemgem123, shouldn't your GP be checking out why you are going dizzy and have lost 12% of your body weight since the New Year? Is there another GP at the surgery you could see or even a different surgery if you aren't happy with the attention you are getting? Just a thought! Take care.

PointOfReference profile image
PointOfReference

This is the struggle with the NHS at the moment - they don't seem to have any time to give more than a binary response, i.e 'you're normal/you're slightly deficient'.

You are entitled to receive a copy of your blood results including ferritin, folate etc. So you do have the option to push them for these. With the results, you could come back to the forum for some further advice.

With two instances of deficiency, if even 'slightly', it warrants further investigation. I'd get the private tests and if they confirm low Active B12 then go back and push for blood results.

Gemgem123 profile image
Gemgem123 in reply to PointOfReference

I’ve felt very fobbed off by gps :(

It’s annoying as on the nhs app my gp surgery does not allow patients to access results via the app, yet others in my area do. What private bloods would you recommend? I saw Superdrug did one which was quite cheap but I see no mention of UKAS accreditation.

PointOfReference profile image
PointOfReference in reply to Gemgem123

Id give them a call, if you can get through, and ask for test results. Theyre obliged to give them and can't refuse.

You need correct treatment from the GPs. If you're not holding down food, you probably won't be holding down a Cyano pill.

'You must be sensitive when your levels drop'. What a load of nonsense. You're not sensitive, youre unwell.

Do try to get all bloods results. Is there anyone else who can back you up or do it on your behalf because you're too unwell to move?

Gemgem123 profile image
Gemgem123 in reply to PointOfReference

Hi my results are 169

PointOfReference profile image
PointOfReference in reply to Gemgem123

Is this for the most recent test?

It is low because its under 200. But the problem is it may not be considered 'clear deficiency' which is sometimes 150 or less depending on the range used. And how it's treated will depend on the ranges set by your borough/county.

If you can possibly do a google search to see if you can find the treatment guidelines for suspected b12 deficiency for your area/county/borough that could help you out. May not be easy to get though. Some areas have clear guidelines you can find on the web that show how they'll treat patients based on serum blood results.

But as Gambit62 says below, your acid reflux is a possible symptom of PA. That, combined with a 'low normal' blood serum result should require further investigation from your GP's.

Unfortunately, because they're so busy, they're probably don't have time to be giving these matters more than 5mins of consideration. But you have strong evidence to warrant further investigation, particularly 2 tests that showed low levels. So with you evidence of stomach reflux and low range, you could go back to 'appeal' and ask them to check your Intrinsic Factor Antibodies and request a theraputic trial of b12 injections.

It's been going on for a while and you're still symptomatic.

Good luck

Gambit62 profile image
Gambit62Administrator

The acid reflux could indicate that you have low stomach acidity which would be consistent with PA, the most common cause of B12 deficiency. The NHS does not provide any testing for low stomach acidity and tends to treat acid reflux with PPIs that would actually reduce acidity further and are a known cause of B12 absorption problemsUnless you are a vegan or a vegetarian that eats very little dairy/egg then diet is very unlikely to be the cause. The body stores large quantities of B12 in the liver. This is released as required in bile for absorption in the ileum. However, if you have an absorption problem this mechanism becomes at best inefficient and you use up the stores faster than they can be repleted by diet. A dietary deficiency tends to take years to manifest so the failure to recover on the oral doses you have been given really suggests that your problem isn't dietary.

You need to get hold of the results from your GP - the test usually done is serum B12 and it is only accurate to 20%. The normal range is huge and people tend to sit at a particular point in the range because levels are maintained efficiently using stores in the liver. This means that the test is good for monitoring if levels are falling over time, which you can't actually do from a single test.

The normal range is actually a statistical average and that means there are some significant logical problems with the way it is being used and applied. If you are someone who naturally sits at the top of the range and your result is in the lower half of the range but normal then you are deficient but looking at the test on its own doesn't pick up that you normally sit at the top of the range.

Suggest you contact your GP and ask for follow up on the stomach issue as a more direct cause of B12 deficiency rather than a dietary cause and ask for a trial of injections. This would be in line with the BCSH standards which can be found here - particularly as you do seem to have neurological involvement. The standards make it clear that clinical assessment should take preference if the test results aren't conclusive and that prompt and agressive treatment is necessary if there is neurological involvement. It also states that macrocytic anaemia isn't always present and the specific test for PA as a cause of B12 deficiency is not very sensitive meaning that a negative doesn't rule out PA as a cause, resulting in a category of IFAPB-negative PA.

onlinelibrary.wiley.com/doi...

Gemgem123 profile image
Gemgem123 in reply to Gambit62

Got them 169

FlipperTD profile image
FlipperTD

Scientist's, not medic's answer.

This is personal opinion, based on a great deal of professional experience but I suspect I'll stir a hornet's nest by some of the stuff I say. I don't intend to do that.

as always, trust your GP.

The NHS labs perform a wide range of tests, although some aren't available. Active B12, for instance, is unlikely, but in actual fact it won't really tell you anything that 'Total B12' won't anyway. It's just that the numbers will be different. 'Active B12' is around 25% of 'Total B12', and the ranges are quoted to account for this.

Intrinsic Factor antibody testing is available on the NHS. It may have to be referred to another [NHS] laboratory, as it's certainly not done in every lab.

Sample quality is a recurring issue with blood tests. A good sample, taken by a trained phlebotomist, in the best circumstances, is a good start. Finger prick samples are good for many things, but [in my professional opinion!] venous samples are better.

Delay in testing samples causes various problems, but not for every possible analyte. Generally, blood samples don't improve on storage, unlike good Claret.

So, trust your GP, and trust this website.

Good luck. I hope you get this sorted soon!

in reply to FlipperTD

🐝🐝🐝🐝🐝🐝🐝🐝🐝🐝🐝🐝🐝🐝How many bees in a Hornets nest

😜

Gemgem123 profile image
Gemgem123 in reply to FlipperTD

I understand the trust the GP, I use to. But after a health problem that resulted in surgery to be fix (not back to how it use to be and never will) I find it hard. Even when under consultant care the GPS would not read his advice on how to treat me and would tell me I was fine when not presenting with stereotypical symptoms or test results would be positive but not for everything (which the consultant said was very normal in people with this problem) but the GPS would look at it from the general population like a tickbox. I’ve also had friends and family be told they’re fine and basically go away and actually have issues they missed. He also said diet because I said I’ve been struggling to eat the past couple months. Didn’t ask about my diet at all.

I may be taking a bad experience though

in reply to Gemgem123

A bad experience with regard to gps have definitely left me with problems. Now with a different surgery and after pointing out to them my experience they are much more responsive . But I must say that I am also still on the cautious side. It's like all things in life once experienced never forgotten!

Sleepybunny profile image
Sleepybunny

Hi,

Some links that may be of interest....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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.

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....

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxycobalamin link below.

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

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

BNF Cyanocobalamin

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

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

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

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of b12 deficiency. I suggest you try to track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links. It's good to know what you are up against.

Some of these local guidelines have been posted on forum so may be worth searching forum posts for "local guidelines".

Hope you are not in the UK area mentioned in blog post below.

b12deficiency.info/blog/202...

More on Causes

If your GP is convinced it is a dietary issue, you could write out a typical weekly diet, food and drink, and discuss this with GP.

If you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12 then less likely to be a dietary deficiency and more likely to be an absorption problem in the gut.

Guidelines below suggests that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

Have you been tested for coeliac?

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 exposure to 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 infection?

Have you ever eaten raw or uncooked fish eg sushi, smoked salmon?

Have you ever lived or stayed in an area where internal parasites are common?

One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results.

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

Has your GP checked any medication you are on?

Some medications can affect B12 levels .

Some can affect folate levels.

Local pharmacist may also be helpful to talk to.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that people can base own letters on.

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for b12 deficiency with an in range serum B12 result.

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.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

hdapatientcaretrust.com/

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

Currently they are not taking on new cases but this may change at some point.

Local MP/devolved representatives may be worth talking to if struggling to get treatment.

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...

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.

Referrals

As you mention neuro symptoms eg tingling, burning sensations, brain fog etc

Does your GP have a complete list of all your symptoms especially all your neuro symptoms?

See Symptoms Lists at top of this reply.

Have you been referred to ....

1) a neurologist?

2) a haematologist

IF you look at NICE CKS links it suggests that doctors should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Has your GP done this? If GP won't refer you, perhaps they could write a letter to local haematologist seeking treatment advice.

3) a gastro enterologist ( for gut symptoms)

Gastro specialist should be able to spot signs of gut damage from PA, Coeliac disease, H Pylori infection plus other gut conditions.

I've written some very detailed replies in the threads below which hopefully have B12 info you will find useful eg causes of B12 deficiency, books, articles, more UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Gemgem123 profile image
Gemgem123

Thanks everyone. I called my GP and they said my b12 was 169 if that’s any help on what I should do going forward

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