How are my b12 levels

[Jump1]

Hi folks

Any advice on my b12 levels. I thought they were ok. But someone said my b12 level was suspicious

Vit b12 699 197 - 771

Active b12 61 25.1 -165

I have massive hairloss all over body and thinning for 2 years non stop. I didnt think my levels were bad. Any advice please.

[Gambit62 Administrator]

Both are well into the normal ranges.

However, on average active B12 is around 20% of the B12 in blood - wherease your active B12 is only 10%.

Were the results done at the same time?

[Jump1 in reply to Gambit62]

Yes. So wat does that mean? I have sent away for a urine test from medichecks to test the m acid. (Cant remembwr what it is called. Because i read somewhere that under 70 active b12 reading this would be tested in a london hospital. I have massive hairloss and thinnninv

[Gambit62 Administrator in reply to Jump1]

MMA - is test for a waste product that builds up if you don't have enough B12 getting through to your cells - and is best done in urine as this is the easiest way of checking that other conditions that can raise MMA aren't involved.

The test results imply that you don't have a problem absorbing B12 from your diet but that your body may then struggle to get it into your cells. The MMA test will help to clarify this. if it is the case then it is likely that you will be prescribed high dose B12 to take orally so that the levels of B12 in your blood are kept high enough for the amount your cells need to get to your cells.

[Jump1 in reply to Gambit62]

Thank you so.much for this information. Would it cause major hairloss all ocer my body. What kind of symptoms would it cause

[Gambit62 Administrator in reply to Jump1]

B12 deficiency can result in hair loss- but there are also a number of other conditions, eg hypothyroidism, that can result in the hair loss.

[Jump1 in reply to Gambit62]

Thanks. Yes i am testing eveeything. Thank you again

[Jump1 in reply to Gambit62]

What would have caused this problem? My intrinisc factor was 0.6 the level was less than 6. I was treated for h pylori in september past. Suspected gastritis as well.

[Marz in reply to Jump1]

Low Iron - Low zinc ? Low Thyroid ? Low VitD ? - as per your post on Thyroid UK two days ago

[Jump1 in reply to Marz]

Thanks Marz. Only one on that ist low is the thyroid.

[Gambit62 Administrator in reply to Jump1]

it doesn't sound as if you have an absorption problem but you may have a problem with metabolising B12 - this is likely to be genetic.

[Jump1 in reply to Gambit62]

Thanks will let you know how i get on with the test i hace had to get this all done privately. Gps are no good. There is no family history of b12 def or.blood disorders of any kind. Not even thyroid problems.

[KimberinUS in reply to Jump1]

I would retest for h pylori. Even IF the aantibiotics worked back in Sept. once you had it you can definitely get it again!

H pylori of course effects b12 but there are also lots of links suggesting a relationship to thyroid issues.

[Jump1 in reply to KimberinUS]

I did i retested 3 weeks ago. I am clear of it. Thanks for the suggestion though

[Sleepybunny]

Hi,

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

In UK, this flowchart from BSH Cobalamin and Folate Guidelines indicates that people should be treated if they are symptomatic for B12 deficiency even if b12 level is within range. It also suggests continuing B12 treatment if patient responds even if secondary diagnostic tests such as MMA, Homocysteine and Active B12 (holotranscobalamin) are normal range (see bottom right part of flowchart).

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Would your GP consider a trial of B12 treatment if you are symptomatic?

Functional B12 Deficiency links

Some people have plenty of b12 in blood but not enough gets into the cells. There are people on this forum who have been diagnosed with functional B12 deficiency.

b12deficiency.info/b12-writ...

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

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 is up to date with UK b12 guidelines.

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

Very comprehensive with lots of case studies.

Active B12, MMA, Homocysteine links

b12deficiency.info/b12-test...

viapath.co.uk/our-tests/act...

stichtingb12tekort.nl/weten... from Dutch B12 website.

I am not medically trained.

[Jump1 in reply to Sleepybunny]

Thanks for all this information. Yes i am uk. Gp said there was nothig wrong with my b12. Refused to test. I got these tests through medichecks. I am doing the urine test tmw morning. It arrived this afternoon. I recieved a big plastic container to store all urine in over 24 hours and a small tube. There doesnt appear to be a large return bag for the big container so i have emailed them if they want this returned too. If the do i would think i would need on of their return bags for it. It says i should get the results in 16 days i assume those are working days. So3 weeks time. I have registered with a new gp yesterday. The old gp practice was astrocious. Ignore symptoms. I dont know what sypmtoms to look out for b12 def. Will have a read of your info. Thanks for it.

[Sleepybunny in reply to Jump1]

Hi again,

More B12 info in the pinned posts on this forum.

Another B12 book I found useful, due to case histories it mentioned.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

UK B12 websites

PAS (Pernicious Anaemia Society)

PAS offers support and info about PA. There are UK PAS support groups.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

UK B12 blogs

martynhooper.com/

b12deficiency.info/blog/

Some blood test links

Link about What to Do Next if B12 deficiency suspected.

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Have you got up to date results for folate, ferritin, full blood count (FBC)?

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-...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Flowchart in post above mentions that people who are symptomatic for B12 deficiency should have an IFA Intrinsic factor antibody test. This can help to diagnose PA.

[Jump1 in reply to Sleepybunny]

Thank you

[Sleepybunny in reply to Jump1]

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. Think they use a network of specialists across UK.

hdapatientcaretrust.com/

[Jump1]

I was actually told by a gp i went to see provately that my folate was very high and to stop.taking whatever i was taking as i didnt need it to raise folate. I was takig floradix tablets.