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B12 Level falling

Will4318 profile image
21 Replies

Hi Everyone,

I don't have Pernicious Anaemia so sorry for posting however I though that you be able to let me know if my B12 level is something I need to keep any eye on.

For the last year or so I have been having problems keeping my Ferritin, Folate an Vitamin D levels up, I'm not vegetarian/vegan it good and I actively try to eat foods high in Iron/Folate however the levels keep falling when i come off prescribed supplements. I was checked extensively for Ceoliac and Chrons disease but nothing was found.

Anyway, In the last letter between my Gastro and my GP the Gastro noted that my B12 level is falling (July 18 - 461 ng/L, Nov 18 - 389 ng/L, May 19 - 288 ng/L) I know these are all normal reading but I wondered if you think I should ask for the GP to check it again in a few months? With my folate/Iron they treat it and then I have to really push the GP to test again a few months later when I start falling asleep at work etc.

Sorry for the long and probably confusing post.

Thanks

Will

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21 Replies
fbirder profile image
fbirder

I would keep an eye out for possible symptoms of a deficiency - pernicious-anaemia-society.... - because you are likely to spot those before your blood levels drop below 'normal'. Then you can go ask for a blood test. But it wouldn't hurt to have them checked annually.

Nackapan profile image
Nackapan

I also struggle to keep ferritin and vit D up. Ferritin has only been a problem since b12 was low and having injections to treat. No reason has been given. I also push for blood tests as not making sense. I'm due one in July 3 Months after last. Have been supplementing with iron still so will see. Yes keep checking levels . If you do get low b12 you need to get treated. Definitely go by your symptoms not numbers. Hope that helps

Will4318 profile image
Will4318

Thanks both, I will try to get them to look at my B12 when they check my folate again then as it looks like a lot of the B12/Folate symptoms overlap.

IMINHIM profile image
IMINHIM in reply toWill4318

cannot measure b12 with a normal cdc----it needs to be an cellular test----to see how well you are absorbtion is in the body

helvella profile image
helvella in reply toIMINHIM

What is "a normal cdc"?

IMINHIM profile image
IMINHIM in reply tohelvella

normal blood test

Sleepybunny profile image
Sleepybunny

Hi,

Did GPs tell you you didn't have PA?

PA can be hard to diagnose as the tests can be unreliable.

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.

If you're in UK, I suggest reading these documents.

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...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

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 does not mention recent BNF change.

"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".

PAS (Pernicious Anaemia Society)

Based in Wales, UK. has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

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

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

"I was checked extensively for Ceoliac"

If in UK, I suggest reading following document and check the doctors followed the guidelines.

NICE guidelines Coeliac Disease (2015 version)

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

Were you given both tTG IgA test and Total iga tests? There are other coeliac blood tests that are used in certain situations.

Coeliac Blood Tests

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

I have read that Coeliac can present purely with neurological symptoms which makes it a lot harder to diagnose.

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

Were you tested for H pylori?

patient.info/digestive-heal...

Exposure to Nitrous Oxide?

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

Internal parasites eg fish tapeworm? Do you ever eat raw fish?

One potential sign of fish tapeworm infection is a rise in eosinophils ( type of white blood cell). eosinophil result will be found on Full Blood Count results.

I am not medically trained.

Will4318 profile image
Will4318 in reply toSleepybunny

Hi Sleepybunny,

The GP hasn't said anything about PA, It was just that the consultant pointed my B12 out. I am in the UK but saw a private Gastro, I had gastroscopy and capsule endoscopy done to look for Coeliac and crohns but they didn't find anything. They still suspect something is happening just so far don't know what.

More than anything its just frustrating to see another number falling

I will try to push to get the B12 tested again in a couple of months,

Sleepybunny profile image
Sleepybunny in reply toWill4318

Hi,

Do you have any of the following symptoms?

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...

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

b12deficiency.info/what-to-...

Might be worth you joining and talking to PAS. They should be able to point you to useful info. Details in my other post.

When you said "I don't have Pernicious Anaemia" I assumed you had been told by a doctor that you don't have it.

If I understand correctly, you have not been tested for PA, so there is a possibility that you may have it. The flowchart I linked to in my other post outlines the process UK doctors should follow to diagnose PA. If you're in UK, has GP followed this process?

UK guidelines make it clear that a person who has the symptoms of B12 deficiency (with other causes of symptoms excluded) should be treated even if B12 levels are within normal range to prevent neurological damage. See BMJ and BSH links in my other post.

Link about writing to GP if symptomatic for B12 deficiency with in range B12 result.

There's a lot of useful B12 info in link below.

b12deficiency.info/b12-writ...

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, restless legs syndrome, memory problems, words finding difficulties, balance issues, vertigo, migraine etc?

If yes to neuro symptoms, have you been referred to

1) a neurologist?

2) a haematologist? See NICE CKS link in my other post if in UK.

I know from personal experience that it is possible to have severe B12 deficiency with a result that is well within range.

Have your doctors considered the possibility of Functional B12 Deficiency? This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

Be warned that B12 deficiency is not always as well understood as it could be among doctors. It can be misdiagnosed as other conditions.

b12deficiency.info/misdiagn...

There is a window of opportunity to treat B12 deficiency before there is a risk of permanent neurological damage so the sooner it is diagnosed the better.

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....

Blog post from Martyn Hooper's blog, mentions SACD

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

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...

UK B12 Blogs

There may be stories on here that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Will4318 profile image
Will4318 in reply toSleepybunny

Hi Sleepybunny,

The main symptoms I have apart from tiredness are constant headaches, my memory is bad, I'm more clumsy, and feel dizzy/loose my ballance a little.

My GP hasn't done anything with b12 yet, from my last blood test they put me on folic acid, iron and vitamin D but class the b12 as normal also my MCV is slightly low but the gastro told me that iron brings it down and folate/b12 make it high so it's not really useful in someone with both.

I need another folate test in a month so I will probably bring the b12 up then.

IMINHIM profile image
IMINHIM in reply toWill4318

will lookup b12 deficiencies ---I would not wait-----start taking injectionsright away----my opinion----

Sleepybunny profile image
Sleepybunny in reply toWill4318

HI,

"headaches..memory is bad...more clumsy..feel dizzy/loose ..ballance a little"

These would usually be considered as neurological symptoms.

Perhaps you could request a referral to a neurologist but be warned they won't necessarily know more about B12 deficiency than your GP.

"from my last blood test they put me on folic acid"

It's vital that any B12 deficiency is treated at same time as any folate deficiency or the folate treatment may mask the effects of the B12 deficiency. See Management section in next link for more details.

patient.info/doctor/folate-...

Will4318 profile image
Will4318 in reply toSleepybunny

Thank you, I have booked an appointment with the GP tomorrow to talk to them about it.

Sleepybunny profile image
Sleepybunny in reply toWill4318

Hi,

You could always ask GP to test you for PA.

In UK this would be an Intrinsic Factor Antibody test (IFA).

It might be helpful to take copy of BSH flowchart with you. Flowchart indicates that patients who are symptomatic for B12 deficiency should be tested for PA.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

It's still possible to have PA even if IFA result is negative (called Antibody Negative PA). Some UK GPs may not be aware of the possibility of Antibody Negative PA.

If you're a PAS member might be worth trying to speak to PAS before your appointment as they can recommend useful info to pass on to GP.

PAS membership

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

IMINHIM profile image
IMINHIM in reply toSleepybunny

great information----thanks

IMINHIM profile image
IMINHIM

WILL-----what rest are you using to check your b12 levels ??????

IMINHIM profile image
IMINHIM in reply toIMINHIM

test sorry

Will4318 profile image
Will4318 in reply toIMINHIM

Hi, it's just a total b12 reading that my gp has done, I'm having blood tests all the time at the moment because of my deficiencies

Will4318 profile image
Will4318

Hi Everyone,

So I saw the GP, whilst they said it was abnormal that my B12 has fallen however they don't feel they need to test anymore at the moment. My folate level is 1.4ug/L and im microcytic so they want to retest my B12 in 4 months after I have finished my Iron and Folate replacement.

Will

Will4318 profile image
Will4318

Hi Everyone,

Just wanted your opinion on whether to go back to the doctors or not, I'm 1.5 months into my Folic acid/Iron/Vit D and my plan was to wait the 4 months then go back for them to recheck everything. I don't really want to go back sooner as I don't want to go unnecessarily however I have started to struggle with the dizziness more, it comes on about a second after standing up or sometimes when I go up stairs, this as been happening for a while but it now seems more frequent and takes longer for it to go away (5ish seconds), because of it I have fell over 3 times today.

Do you think I should go back?

Will4318 profile image
Will4318 in reply toWill4318

I fainted so went back, they checked my blood pressure and said I have postural Hyportension, they still want to check my B12 after I have finished my folate etc

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