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NEW B12 RESULT - Should I supplement or not?

Megluka profile image
11 Replies

Seven weeks ago I had a whole battery of blood tests and although the results were mainly in the "normal" range my Vit D and B12 and folates were low. My B12 result was 129 pg/mL ( range 180-914)

I was taking reflux meds so my GP advised me to stop taking them as they can affect absorption and retest the B12 after six weeks. I started taking Vit D supplements.

My result has come back from last week and is still only 143.

The GP says that is not particularly low but looking at the range, it clearly is low. Straight after the test I started taking Solgar sublingual 5000 mcg B12 but as I have only been taking that for a under a fortnight I doubt if there is much improvement. My GP is not keen on treating me but I am clearly deficient in B12 so would you knowledgeable people recommend continuing with the supplements.

BTW I am now taking Vit D, B12, B complex and folate and also ACV with Mother for the reflux.

Thanks

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Megluka profile image
Megluka
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11 Replies
fbirder profile image
fbirder

I really is annoying how doctors just seem to ignore the ranges. We've often heard the 'it's within range, therefore nothing wrong' guff when levels are bouncing on the bottom of the range. Now your doc is saying 'yes, it's below the bottom, but only a little bit'.

Go back to the doc and ask for some proper treatment for what can be a serious problem. Demand that he investigate possible causes as it seems that it's not caused by the PPIs you've been taking.

If you're suffering from the symptoms of too much stomach acid it's worth bearing in mind that the same symptoms are often caused by to little acid in the stomach - achlorhydria.

Achlorhydria can be caused by the same mechanism that causes Pernicious Anaemia - an autoimmune attack on the Gastric Parietal Cells (GPCs).

I would ask for tests for anti-IF (Intrinsic Factor) and anti-GPC antibodies. Also a referral to a gastroenterologist to look for signs of Metaplastic gastric atrophy (the result of the attack on GPCs).

Megluka profile image
Megluka in reply to fbirder

Thank you fbirder but it is very difficult to approach a GP who says "Stop looking at the internet". I am sure I am not the first person to have such a response.

fbirder profile image
fbirder in reply to Megluka

To be honest, I can see why doctors hate 'Dr Google'.

Ask any doctor friends about it and they'll tell you that not a day goes by without somebody coming in waving a printout from some idiot website saying how their particular ailment can be cured by wombat pee and can they get it on the NHS.

That's why I only ever wave around stuff they will recognise as a legitimate source - like the BMJ article recommended by @taka.

taka profile image
takaAdministrator

Hi Megluka

Whether your doctor is keen or not they need to treat you for your B12 deficiency - ASAP!

Proton pump inhibitors can indeed affect your B12 absorption but your levels don't seem to have improved much at all since you came off the PPI. Does your diet contain enough B12 containing foods (eg meat, fish, dairy, eggs and some fortified foods)? Sadly the symptoms of low stomach acid and high stomach acid are pretty similar so it may be you were exhibiting symptoms of low stomach acid when put on the PPIs. :-(

Have your high dose supplements helped relieve any deficiency symptoms you have?

I'd go back to your GP and demand treatment for your B12 deficiency - ideally injections given your levels are so low and have been for weeks now as this would raise your levels quickly.

Is your hypothyroid condition autoimmune in origin eg hashimotos? People with autoimmune conditions like hashi's and many others are at a slighly higher risk of developing other autoimmune conditions like pernicious anaemia. Have you had an anti-intrinsic factor antibody test to see if you have pernicious anaemia? (This test is not ideal as ~40-60% of people with PA test negative :-( - ie a negative result does not rule out pernicious anaemia)

Are you in the UK? The following is the UK BSH guidelines for treating B12 and folate deficiency. Maybe have a read of this and highlight any relevant bits for your GP so you can discuss this during your appointment. This is just not something random of the internet but the UK guidelines produced by the British committee for standards in haematology! pernicious-anaemia-society....

Have a look at the pinned posts for other helpful links too. Some other info below:

bmj.com/content/349/bmj.g5226

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

patient.info/doctor/pernici...

Megluka profile image
Megluka

Hi taka

Thank you for your long and thorough reply. Some points....I am Hashi, finally proved by antibody tests after 30 years!!! I do have a good diet. I have read the article from the PA society and have now scared myself witless.

How on earth do you approach a non listening GP with all that?

rosyG profile image
rosyG in reply to Megluka

I would suggest taking someone with you if you find it hard to press your GP- and failing that change doctors as this must be dealt with effectively- I have several conditions, including PA, and find one has to battle to be heard in lots of cases- but if you persist.politely, you will get there!!

taka profile image
takaAdministrator in reply to Megluka

How on earth do you approach a non listening GP with all that?

I think that is the 64,000 dollar question... :-(

Is there another GP in your practice that you could try?

I would print out whichever symptom list fits your symptoms ( eg pernicious-anaemia-society.... or b12deficiency.info/signs-an... ) and clearly mark which you have. Print out the guidelines I linked to above and highlight bits that apply to you - eg PPIs, very low B12 and any mentions of hypothyroidism increasing risk of PA.

Make an appointment to discuss this and give these to your GP. As others have mentioned take someone with you if you can - preferably someone who know a bit about B12 if you know of anyone (or a friend willing to read up a bit!) Sadly you are less likely to be ignored if there is a witness... :-(

You could also look up and print out something about sub acute combined degeneration of the cord and also discuss/give this to your GP. (PAS website if you are a member or google for a scientific paper) I'm not saying you have this... just that it may help to erm... sharply wake up your GP to the potential seriousness of not treating you! ;-) If your GP is still not playing ball ask them to confirm in writing that you are not at risk of this by refusing to treating your B12 deficiency . They won't be able to...

You could also try writing to your GP enclosing some of these things above either ahead of your appointment (so they have a chance to read it) or instead of an appointment.

Good luck! Let us know how you get on.

kmalbasich profile image
kmalbasich

Try solgar folate as metafolin

check b complex hasn't got b12 as cyanocobalamin

Dr is right about reflux meds interfering.

Try global healing sublingual better than solgar I used to take now wont be without vegan sublingual much better read a research repot thats why I take it now.

Solgar brought my levels up high but still left me bit tired but did help.

Now i do both injection and sublingual.

Kendra

Sleepybunny profile image
Sleepybunny

"How on earth do you approach a non listening GP with all that?"

Have you considered writing a letter to GP, containing all evidence eg symptoms , quotes from B12 documents and blood test results.

My understanding is that letters to a GP have to be filed with medical records so are a record of issues being raised. Also think it's sensible to keep a copy of any letters for own records.

Next link about writing letters to GP about B12 deficiency (UK info)

b12deficiency.info/b12-writ...

Unhappy with treatment? (UK info)

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment. they are usually quick to respond to enquiries.

hdapatientcaretrust.com/

HDA pct tel no 0207 935 8366

Megluka profile image
Megluka in reply to Sleepybunny

Thank you everyone. I am going on holiday next week armed with all my pills. I have a GP appointment booked for 13 days time so armed with all my info I hope he will listen this time!

misfratz profile image
misfratz

Hi Megluka, I had similar B12 results (supposedly 'slightly below range' but actually for most countries other than the UK it would be considered very low), and was told initially to take low dose oral supplements. The way I got through this with GP was by pointing out that I have Hashimotos (autoimmune thyroid) which is linked to PA- ask for antibodies test (there are two antibodies- anti-Intrinsic Factor and anti-Parietal cells- you need both as either one can cause B12 deficiency). If this is positive then they will know they need to supplement either with very high dose or injections as it shows you physically can't absorb the B12 through the stomach. Hope it goes ok for you!

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