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Pernicious Anaemia Society
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Hypothyroid with low B12

Hi

I am hypothyroid and when I had my B12 tested it was 377. I have been supplementing with a spray 2400iu daily

Folic acid was 3.5 should I also be supplementing this and should I be using more B12 spray as I am still experiencing. Numbness and tingling and pins and needles.

Many thanks browny

11 Replies
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Hi, Brownie, the figure you quote for B12 at 377 will doubtless be the result of the serum B12 test which is all the NHS offers and at that level medics will deny you need attention despite the range being far too wide. B12 is non-toxic and any "excess" will be excreted by the body, so do not worry about taking too much. I would say that you could easily take your spray more often, 4-5 times daily, as in supplementing B12 it is best to take enough daily to set up a gradient, that is, take enough to ensure there is more B12 in the bloodstream outside the cells than there is in the cells then the B12 penetrates the cells by means of the gradient established, high always flows to low.

Info re gradients in Kevin Byrne's professional version paper "The entero -hepatic circulation of vitamin B12" available as a download from the PA Society who also have a lot of information about B12. Just click on their icon top right for this and other info.

By DIY means I raised my B12 from 167(180-800) with about 28 symptoms all ignored by GP as doubtless has happened to you, to above 1500, you can read how on this link where I have many posts, just keep going:

wwwpasoc.healthunlocked.com...

As you will see, I used Swanson's 5000mcg tablets, 5 x 5000mcg daily sublingually, though Jarrow's are reckoned to be the best (Amazon has them both, in Health and Beauty) As I was so low, it took nearly four months at this level to stop all symptoms which have never come back. According to the Dutch such a level of supplementation is the equivalent of 2? injections weekly, link to this info is in my postings in above link. Very reassuring! Sprays deliver a higher percentage of B12 to the body, keep in mouth as long as possible to ensure absorption through membranes under tongue and in cheeks so avoiding possible intestinal absorption issues. Tablets taken sublingually also avoid gut issues, B12 absorbed straight in to the bloodstream via membranes under tongue.

I now keep serum B12 at about 1400,supplementing by 3 x 5000mcg on one day a week once I had got my serum B12 above the NHS ranges, but the Active B12 test (as opposed to serum test which just measures all the B12 in serum) is now available also via Thyroid UK as well as PA Society.

thyroiduk.org.uk/testing/Ac...

serum b12 plus folate testing only £30, myrios.co.uk

Fasting 8 hours before folate testing recommended as results can be skewed otherwise by recent dietary intake.

In order to boost stomach acid, lowered in hypothyroidism which I have, I use Solgar's Betaine Hydrochloride with Pepsin according to their instructions. Also maximise dietary sources of B12: chicken livers, lamb's liver, sardines, herring, all come packaged with folate also; milk, eggs, cheese good sources too. Goat's milk has lower levels B12, cow's milk higher.

Yes, you should be supplementing folic acid also, yours is low: it is a methylator for your B12 intake and you can buy folic acid supplements on Amazon, about 800 units daily was I think, recommended by PA, you can check there for their recommendations. Folate sources above, and all leafy veg.

Your spray will be methylcobalamin, never, ever, buy cyanocobalamin or use it; alas, it is the B12 form in tablets the NHS use to "remedy" low B12 levels assumed to be caused by dietary issues. As much use as Smarties. and potentially dangerous also, cyanocobalamin was removed from the WHO list of essential medicines and methylcobalamin listed instead at the insistence of medics who also maintained that cyanocobalamin manufacture/distribution should stop.

When supplementing from this low level the creation of new blood cells will make demands on potassium, but you can deal with this by concentrating on potassium rich foods like bananas, figs, blackstrap molasses.

"Pernicious Anaemia: the forgotten illness" by Martyn Hooper, instigator of the PA Society and sufferer of PA is extremely interesting, as is " Could it be B12?" by Sally Pacholok and Jeffrey Stuart.

Hope this helps.

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Many thanks for your excellent reply, I will read the links you have kindly attached. I have just realised I entered the level of folic acid wrong, it is 5.3 range 3.00 - 20.00 which is in range but I believe low

Thanks again browny

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Yes, it is low, the optimal level is 10mcg/l, follow Hampster1's advice below and mine above: check with the PA society.

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Many thanks best wishes browny

Reply

Many thanks best wishes browny

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Sorry, first link should be:

pasoc.healthunlocked.com/bl...

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Hi Browny,

Are you sure your folate is not officially deficient? What was the lab range? At that level you should be prescribed 5mg folic acid by your doctor (that's 5000mcg). If your doctor is not helpful, as nostoneunturned says you can buy 800mcg strength folic acid from Holland & Barrett. I think the PAS usually say take 3 or 4 of these a day initially to get your levels up, and then you can cut back to a maintenance dose. Check on the PAS forum, type in folic acid in the search box. You won't be getting much benefit from the B12 you are taking with your folate on the floor.

Hampster x

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Many thanks for your reply, sorry I have typed folic level wrong it is in fact 5.3 range 3.0 - 20.00

Which I believe is still low, what do you recommend for the level of 5.3. Sorry again for wrong info

Regards browny

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Yes that's pretty low. You might find this useful:

patient.co.uk/doctor/folate...

"Neurological symptoms (eg, paraesthesia, numbness, cognitive changes, visual disturbance) are more typical of vitamin B12 deficiency but patients with folate deficiency may report mild symptoms of peripheral neuropathy or psychiatric disturbance (eg, depression).[1] "

"Folate deficiency can be corrected by giving 5 mg of folic acid daily for four months for adults (until term in pregnant women); up to 15 mg daily may be required in malabsorption states. Maintenance is 5 mg every 1-7 days."

You really need to make sure you are getting plenty of B12 if you are going to supplement folic acid, please take nostoneunturned's advice in this regard. I had a quick check on the PAS forum and I have seen them advise 3 or 4 tablets of the 800mcg for a few months, but that is for people who are self injecting, so they are getting plenty of B12.

Once your folate levels are up you should be able to drop down to the RDA which is 400mcg per day I think, and it would be a good idea to get this from a B-Complex with all the other B's in it (I take Jarrows B-Right).

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Many thanks again, best wishes browny

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If your doctor doesn't prescribe folate, here is 5mg you can buy from Australia.

healthunlocked.com/pasoc/qu...

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