Help with supplementing please - Pernicious Anaemi...

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Help with supplementing please

Redrosegirlie profile image
7 Replies

Hi all,

I have popped over from the thyroid UK forum. I am newly diagnosed with Hashimoto’s and hypothyroidism.

I’m feeling very tired with brain fog and poor memory and whilst I realise I’m probably not yet adequately treated with thyroxine yet I want to try and increase my B12 and folate levels to see if that helps. Please could you help me with this.

All of my blood results are on my profile but crucially my Active b12 level is 90.300 (37.5-188) and my folate is 4.44 (3.89-26.8)

I can’t find out how active b12 of 90 equates to the normal NHS test result.

I’m presuming I haven’t got PA with these results however I haven’t been tested for intrinsic factor antibodies.

Do I need a high dose of sublingual b12 for a few months eg 1000mcg or 5,000mcg (Jarrows). Would this give me a bit of a daily pick me up?

Should I buy methylfolate 5mg (Thorne) (for 4 months)

Or.... would Igennus Super B complex be enough?

amazon.co.uk/gp/aw/d/B01787...

Thank you.

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Redrosegirlie
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7 Replies
Gambit62 profile image
Gambit62Administrator

with a active B12 of 90 you are EXTREMELY, EXTREMELY UNLIKELY to have B12 deficiency

The IFA test is extremely problematic in the sense that it is not very sensitive so gives false negatives 40-60% of the time depending on the exact test method so a negative is a long way from showing you don't have PA.

You only need to supplement if you have an absorption problem - and that applies to having hypothyroidism and hashimotos as well. Hashimotos does put you at a higher risk of going on to develop PA - there's a 10-40% chance from studies that have been done.

I would strongly caution against using the doses you have listed above. B12 may not be toxic but taking the doses of B12 you mention can lead to other problems.

b12-institute.nl/caution-no...

I realise there is a lot of talk about 'optimal' levels of vitamins and in particularly B12 on the TUK forum but please be aware that there is a huge rage for B12 as a vitamin. It is the one B vitamin that your body stores and regulates by releasing those stores - which means there are a huge range of levels that are right for individuals. To arbitrarily pick one level and say that is where everyone needs their levels to be is seriously flawed logic. The source of '500' as an optimal level for serum B12 for hashi's patients is difficult to track down and doesn't seem to be supported by any scientific evidence that I am aware of.

Suggest that you get your thyroid levels sorted out before assuming there are other things going on.

Your folate level is on the low side of normal. Folate levels are much more responsive to recent dietary intake than B12. The test is also much more sensitive than the B12 test. The best source of folate is dietary, so suggest you take a look at your diet and try and up the amount of foods rich in folate - eg green leafy vegetables.

Hypothyroidism can lead to problems absorbing other vitamins and minerals but it usually affects iron first.

wedgewood profile image
wedgewood in reply toGambit62

I thought that the IFA test gave false negatives .

Gambit62 profile image
Gambit62Administrator in reply towedgewood

thanks Wedgewood - corrected.

fbirder profile image
fbirder in reply toGambit62

There are two sources of the 'everybody below 500 should be treated' myth.

The first is Wikipedia. The article in question includes a reference to a Japanese paper from the 1980s. That paper does, indeed say that 500 is the lower limit in Japan. However, that is only in the abstract. If you get the full paper then there is no mention of that limit. Nor is there a source for that 'fact'.

Various studies have looked at the levels of B12 in normal people. They all tend to find that the average is about 300 to 350 pmol/L. Those studies that include a Standard Deviation show that 85 to 99% of normal people should have a level below 500 pmol/L.

Another source is an article in the Daily Mail about the work of Professor David Smith at Oxford University. Prof Smith has been working on B12 and dementia (and spoke at the PAS Conference in 2013 - youtu.be/n7aMPF5P9AY?t=210 ).

The Daily Mail quote says...

""B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely. "

I emailed Prof Smith about this and he said -

" I have no recollection of speaking to this reporter - she just made it up! "

So the sources are a 30 year old abstract from a single paper that offers no evidence to back up such a singular claim and a made-up quote in the Daily Mail.

Redrosegirlie profile image
Redrosegirlie

Thank you all for your replies. They are much appreciated.

My diet is poor. Mainly because I’m a shift worker with often no time for a decent meal but also because I’m not a lover of vegetables which is why I am looking to supplement.

I also realise that the b12 level of 500 is arbitrary however I would prefer my level to be at the upper end of normal rather than sitting in the lower third of the range.

I’m working on getting my thyroid levels optimally treated however this is a slow process and I’m looking to feel better ASAP.

I’ll get a b complex and get my levels tested again after a few months to see if it is helping.

Thanks again

Gambit62 profile image
Gambit62Administrator in reply toRedrosegirlie

supplementing B12 is only going to help if you have a dietary deficiency - its solely found in meat products so sounds as if it is unlikely you have a dietary deficiency. If you want to supplement folate then suggest you try 400mcg of folic acid which you can get from the supermarket and is much cheaper than forking out a fortune for products that claim that you need a methylated form and play on fear to get you to buy something that is very very unlikely to be necessary. Please be aware that health companies can be very selective in the studies they use to support their products.

Your level probably is about 500 if you have an active B12 level of 90 - the ratio between active and serum is usually 5. If you don't have an absorption problem then much lower doses - again the amounts that you would get in a supermarket supplement - should be adequate. Again, the doses you are quoting are over the top and I really wouldn't recommend that you use them.

Redrosegirlie profile image
Redrosegirlie in reply toGambit62

Thanks so much for your help Gambit.

I’m just going to buy a decent b complex 😊

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