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B12

Gernod profile image
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Hi, can somebody help please. Does anyone know the b12 range in ireland? Just back from my doctor, she said my b12 is 140 and 120 is considerd normal. She said i am in the liw end of normal. She said they dont treat b12 deficiency unless its below 100. Please help, i feel absolutely terrible. Exhaustion, muscle cramps. Pins and needles. Spasm in my small finger. Legs feel like led weights. Dont know what to do, she said take supplements and seemed very disinterested

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Gernod
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helvella profile image
helvella

Lab reference intervals for many tests are specific to the lab.

Different manufacturers of tests set their own intervals which might then be adjusted by individual labs. In the UK, I'd say contact the lab - or maybe look online for something like "laboratory handbook" for your lab.

Sleepybunny profile image
Sleepybunny

Hi Gernod,

Might be worth putting Ireland in the title of your threads so you attract attention from other Irish forum members.

I am having trouble putting working links in this reply but will come back later and try again.

I'm in UK but think that some guidance in Ireland is based on NHS guidance and BNF (British National Formulary).

HSE link below is based on NHS info.

B12 and Folate deficiency anaemia

www2.hse.ie/conditions/vita...

Gernod profile image
Gernod in reply to Sleepybunny

Thank you for your reply sleepybunny, I asked for my results so that is when she told me it was low normal. I will read up on the material you have provided. I am supplementing with b12 m 1000 finding it hard to take. I will keep going. Thank you.

Sleepybunny profile image
Sleepybunny in reply to Gernod

Irish study on B12 deficiency

tcd.ie/news_events/articles...

Your GP may find it helpful to look at the BSH Cobalamin and Folate Guidelines and other UK B12 documents.

Irish National Formulary

Link below is to online Irish Medicines Formulary.

Might only be health professionals who can access this.

online.imfmedia.ie/

helvella profile image
helvella in reply to Sleepybunny

It appears the Irish Formulary might be accessible online if you register (it expressly says you do not need to pay to register but is less clear about what access you then get).

online.imfmedia.ie/formulary/

Sleepybunny profile image
Sleepybunny in reply to Gernod

Do you have a friend who is a health professional who could look up relevant info for you?

Your local library service may have a printed copy of the Irish National Formulary for reference. The print version is expensive.

"seemed very disinterested"

Sadly, knowledge about and interest in GPs and specialists seems to be lacking in some when it comes to B12 deficiency. I think there is very little in most doctors' training about the effects, diagnosis and treatment of B12 deficiency.

You may need to educate yourself about B12 deficiency in case your doctor isn't.

Some more B12 links....

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

b12deficiency.info/what-to-...

Sleepybunny profile image
Sleepybunny in reply to Gernod

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....

Blog post from Martyn Hooper's blog, mentions SACD

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

There are many possible causes of B12 deficiency including diet, PA (Pernicious Anaemia), coeliac disease, Crohn's disease, H Pylori infection, high alcohol intake, some drugs/medicines, damage to terminal ileum (part of gut where B12 is absorbed), exposure to nitrous oxide, internal parasites such as fish tapeworm and others.

What's your diet like?

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

If yes to a B12 rich diet then diet as a cause is less likely and it's more likely that there is an absorption problem in the gut.

Have you at least been tested for PA and Coeliac disease?

If you have a PA diagnosis or suspect you have PA then worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

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.

Both these tests can be unreliable.

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.

Info on coeliac disease on Coeliac Society of Ireland website.

coeliac.ie/

porter5 profile image
porter5 in reply to Sleepybunny

great post sleepybunny. thanks

Sleepybunny profile image
Sleepybunny in reply to Gernod

sb

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...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

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

B12 article from Mayo Clinic

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

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

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).

UK treatment info in this book is out of date. See BNF hydroxycobalamin link in this reply.

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Sleepybunny profile image
Sleepybunny in reply to Gernod

sb

Sorry to do it like this but for some reason when I tried to write the reply in one go, the links didn't work.

Unhappy with Treatment?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Some info in this link is specific to UK.

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

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

I am not medically trained just someone who suffered for years with undiagnosed B12 deficiency.

Sleepybunny profile image
Sleepybunny

Have you accessed your medical records? It's likely that there will be a ref range next to your actual result.

Access to medical records Ireland

citizensinformation.ie/en/h...

Nackapan profile image
Nackapan

Can you get a copy of your results to mske more sense of them?

Sleepybunny profile image
Sleepybunny

"Does anyone know the b12 range in ireland"

Your Teachta Dala (TD) might be able to help you find out.

oireachtas.ie/en/members/

You could also ring HSE and ask them where to look for the ref range for B12.

hse.ie/eng/

There are contact details in bottom right corner of above link.

You could try submitting an FOI (Freedom of Information) request to HSE for a copy of HSE B12 deficiency guidelines.

hse.ie/eng/services/yourhea...

May also be worth looking on websites of nearest public hospital for B12 deficiency guidelines or submitting a FOI request to hospital asking for a copy of B12 deficiency guidelines used at that hospital.

UK forum members sometimes find that different CCGs/Health Boards in UK will have local guidelines on B12 deficiency that vary from what is in BNF, BSH, NICE CKS links.

Apologies but I don't know a lot about how how health services are set up in Ireland and whether there is one national set of guidelines or maybe lots of varying local ones.

I usually suggest that forum members in UK track down the local guidelines for their CCG/Health Board and compare them with national guidelines.

In UK, some of the local guidelines seem very unhelpful. See blog post below.

b12deficiency.info/gloucest...

Perhaps PAS (Pernicious Anaemia Society) or the person who runs B12 Deficiency Info website may be able to help you?

Good luck

porter5 profile image
porter5

Normal B12 levels in adults is 200 ng/ml to 900 ng/ml. The level of Vitamin B12 below 200 ng/ml indicates vitamin B12 deficiency. Also check for folate levels. For your information if you enter the question into google "What is the reference range for B12 or folate

you will get lots of answers which you can go through and inform yourself about your condition. Also google the question what is the relationship between B12 and folate)

Cramps might indicate a potassium deficiency, and or a magnesium deficiency.

It is worth looking at the type of foods you eat and what levels of both of these minerals those foods contain.You can google for food values. Then you can compare the levels you eat with the reference range and see what the difference is. If they are at the lower end of the scale then you need to increase your intake. Also do remember that blood tests are not the whole story. Also and this many people don't realise, water from the tap contains many

chemicals which are not good to ingest. Similarly with plastic bottled water BPA can leach into the water and this can act as an endocrine disruptor, upsetting hormone balances.

Gernod profile image
Gernod in reply to porter5

Thank you porter5

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