Normal range b12

[Ald1]

Hi my b12 test came back at 240 normal range 200-900, ferritin 20 but was taking iron supplements and heamaglobin normal range but I am having serious b12 deficiency symptoms , doctor said would not even think of treatment! I'm in to see nurse tomorrow or is it all in my head . TIA x o

[clivealive Forum Support]

Hi Ald1 ask to have your folate level checked.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Your doctor should be treating your symptoms not just looking at the computer screen.

The BSH guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

[Ald1 in reply to clivealive]

Thankyou for your reply, I have written a short letter I found a template on this website, in with nurse today so fingers crossed I may move forward but not holding my breath. Really finding this page helpful though .

[Sleepybunny]

Hi,

Flowchart from BSH Cobalamin and Folate guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, it is recommended that patients who are symptomatic for b12 deficiency should have an IFA test (Intrinsic Factor Antibody) and start initial B12 treatment...this applies whether b12 is low or within range. Flowchart also outlines when PA (Pernicious Anaemia ) can be diagnosed.

I gave my GPs a copy of BSH Cobalamin and Folate Guidelines as they seemed unaware of the document.

Intrinsic Factor Antibody test

Have you had an IFA test? it can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody Negative Pernicious Anaemia). My experience is that there are quite a few doctors in UK, who are unaware of the possibility of Antibody Negative PA.

If you are symptomatic for B12 deficiency, I'm unsure why GP has said he/she would not even think of treatment.

Is GP aware of all your symptoms especially any neurological symptoms?

Lists of B12 deficiency symptoms

pernicious-anaemia-society.... see PAS Symptoms Checklist

I gave a copy of PAS Symptoms Checklist to my GPs with all my symptoms ticked plus I added any symptoms not on list.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS

Some people on forum join the PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left

Other B12 info

1) Pinned posts on this forum. I found fbirder 's summary of B12 documents useful. link to summary in third pinned post.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) BNF British National Formulary Chapter 9 Section 1.2

Most GPs will have a copy of BNF on desk or bookshelf.

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

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

4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS.

5) Book " Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

Unhappy with treatment?

Link about writing letters to GPs about B12 deficiency.

Point 5 is about being symptomatic with an in-range result.

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

Link about what to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

I am not medically trained , just someone who has struggled to get a diagnosis.

[Ald1 in reply to Sleepybunny]

Thankyou very much for the info, I am off to see nurse armed with information .

[Katiemoe]

Have u had gastric bypass? If so your b12 and b amount others will not be correct.

[Ald1 in reply to Katiemoe]

Hi katiemoe I had hoylori in 2015 but took the antibiotic regime, still don't feel ok with stomach , also have underactive thyroid but not had bypass

[Gambit62 Administrator]

Hope the appointment with the nurse went well.

Heavy sigh on the attitude of the GP - guidelines are quite clear that if there is discordance between symptoms and test results that symptoms take preference.

[Ald1 in reply to Gambit62]

Hi the nurse didn't want to know she stated she was merely a nurse and put me in with doctor about another issue (lymphatic lump) and told me to discuss with him , I have ordered the active b12 test online last night will this test help clear issue up ? ThAnkyou gambit 52

[Gambit62 Administrator in reply to Ald1]

unfortunately quite probable that active B12 won't help either - it may be looking at B12 bound to protein that allows it to pass into cells rather than all B12 included that bound to a protein that allows it to be stored in the liver - but it doesn't actually give you a clue as to whether it is getting through to cells or if the cells are managing to use it properly.

MMA would be a better confirming test as this looks at a chemical that builds up if your cells don't have enough B12 to recycle it. homocysteine is similarly but is also raised by not having enough folate.

[Ald1 in reply to Gambit62]

Hi is homocysteine the active b12? Hopefully if this test comes back positive doctor might test mma.

[Gambit62 Administrator in reply to Ald1]

no homocysteine is a chemical that builds up in your blood if your body doesn't have enough B12/folate/B6 to recycle it.

active B12 is sometimes called holotranscobalamin - it's B12 bound to a protein that enables it to be absorbed into cells.

[Ald1 in reply to Gambit62]

Hi active b12 came back as 61 range 25+ can remember upper limit think it's 160 would you pursue b12 any further, also had vit d done that was 73

[Gambit62 Administrator in reply to Ald1]

the symptoms of B12 deficiency overlap with a number of other conditions and the lack of a gold standard test makes it difficult particularly if there are other conditions present - however, your active B12 does look okay.

h pylori infection will affect absorption of a number of vitamin and minerals - so may be worth checking that that really is resolved.

Do you know what your folate levels are like - symptoms of folate deficiency are very similar to B12 deficiency and it tends to come on a lot quicker than B12 deficiency