Suggestions for supplementing please -B12 - Thyroid UK

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Suggestions for supplementing please -B12

Dandelions profile image
Dandelions
•13 Replies

Hi everyone 🙂

Could I please once more ask for your advice on this journey?

I used B12 symptoms checklist which suggests severe deficiency.

I have just received test results for MMA: 74.5 ug/l (<32).

Parietal gastric antibodies negative

Last B12 test: 229 ng/l (190-910)

1.) I’m going to start B12 supplementation. I would appreciate recommendations how to go about this and which brands etc.

Is there a difference between lozenges or drop? Or is it just personal preference?

2.) I believe I should start with B12 and then add B complex, is that right?

3.) I carry MTHFR gene ( one allele each). Does that change anything? Or does advice stay the same?

I have been trying to gather more information and data and it has all taken so long, I hope I haven’t waited too long to start supplementation.

Thanks for all your help.

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Dandelions
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13 Replies
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helvella profile image
helvellaAdministrator

If you are that low, have elevated MMA, and have symptoms, you should be getting injections.

Even if oral B12 is sufficient for you in the longer term, you are deferring the time to reach adequate blood B12 levels, and accumulating further damage until you get there.

I do realise that this might not be easy - all too many have difficulty in persuading their GP of their need.

I also recommend posting on the Pernicious Anaemia Society forum:

healthunlocked.com/pasoc

Remember that you should have an Intrinsic Factor antibodies test. (And even that can return negative several times before a positive result.)

Dandelions profile image
Dandelions• in reply tohelvella

That sounds scary. My GP considers my B12 levels “Ok”. So yes, that may be tricky even if I can get the appointment.

What do you think about starting to supplement myself while I await doctor’s verdict on injections?

I’ll post on PA too.

helvella profile image
helvellaAdministrator• in reply toDandelions

I'd ask on PAS - specifically.

However, the only real issues are:

The possibility that oral B12 has some impact but undermines your reasonable argument for at least a course of injections;

That any further B12 testing will be affected by the recent oral B12. But as you already have a seriously low B12 and high MMA, this might not be an issue.

If oral B12 can affect Intrinsic Factor antibody testing - I can't remember the latest views on this.

Dandelions profile image
Dandelions• in reply tohelvella

Thank you for those helpful questions.

shaws profile image
shawsAdministrator• in reply toDandelions

My mother's GP told her she needed no more B12 injections. Both my sister and I thought that was 'good'.

Never in a million years would I have thought that my mother would die of stomach cancer that I place at the GPs' feet as he stopped her B12 injections.

Always be wary and double-check that you're doing the right thing. You should have been checked that you don't have pernicious anaemia and if so that you're prescribed optimum medication. I have P.A. and a couple of other autoimmune conditions.

Dandelions profile image
Dandelions• in reply toshaws

yes, I have seen your sad story. I’ve been told I have nothing wrong with me a few times now too. It feels lonely and confusing to have to battle the doctor, so I’m glad the forum is here. But it takes a long time finding stuff out and going back and forth with medical people.

Is there any need to more tests for PA? As I understand it they can never be sure you don’t have it even with negative antibody tests.

shaws profile image
shawsAdministrator• in reply toDandelions

When someone has pernicious anaemia they cannot absorb B12 from food so they need frequent B12 injections.

SlowDragon profile image
SlowDragonAdministrator

If GP refuses to start B12 injections you will need to self supplement

Starting with separate B12 first

SlowDragon profile image
SlowDragonAdministrator

You can see here NHS set the levels very low to avoid having to treat

hey.nhs.uk/wp/wp-content/up...

Presumably you have Low B12 symptoms 

Give GP list of your symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

Very effective B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

Like many Hashimoto’s patients you have found you have MTHFR gene variation and may have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.

Dandelions profile image
Dandelions

super helpful. Thanks.

humanbean profile image
humanbean

If you are known to have an MTHFR problem you should avoid folic acid completely and take methylfolate. Folic acid has to be converted into methylfolate before the body can make use of it but people with MTHFR problems can't do the conversion very well. Note that some people cannot tolerate large doses of methylfolate all in one go, at least for a while. They have to take tiny doses and build up tolerance.

mthfr.net/methylfolate-side...

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

Dandelions profile image
Dandelions• in reply tohumanbean

Okay, thanks! And I should start that after B12 levels Slowdragon has just adviced me.

humanbean profile image
humanbean• in reply toDandelions

Yes. People should always start improving B12 before adding in folate if both are required.

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