Pernicious Anaemia Society
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End of a Jouney - Hopefully

I have been B12 deficient for at least 18 months and likely 5 years.

After endless testing, I was negative for pretty much everything.

Only a collapse in London earlier this year triggered more testing and now it appears that I have been tested for every possible cause, latterly Pituitary Tumour.

Everything is negative but still I have B12 deficiency that is effectively treated.

We all want a firm diagnosis of the cause, me included, but I have come to terms that this is not likely to happen. So, I have non specific B12 deficiency.

By process of elimination, the only possible cause, although unproven was a biome that was destroyed by years of emergency antibiotics.

This has been resolved by using Symprove probiotic. I have zero intention of ceasing my B12 supplements and 2 monthly injections, just to find out, some years down the line whether this has resolved my B12 absorption issues.

Since taking the Symprove, I have comments about my skin looking healthier than it has for years, no more IBS and no more 24/7 abdominal pain.

Now happy, healthy and full of energy.

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Hi GGourmet. So pleased to hear that you're doing so much better now 😀.

Happy, healthy and full of energy sounds just wonderful and your post will be an inspiration for those who are hoping...and striving...for the same.

Thanks for sharing 👍

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Hi,

Glad to hear you've had some improvements, great to have a good news story on forum.

I have read articles that suggest our gut bacteria have a big impact on health.

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Can you please give more details about this successful journey into a healthier state? First B12 injections: how much on those 2 every month? 50ug/ml or 1000ug/ml (those are my options here...). And about Symprove: have you followed the 12 weeks cure recommended on the site?

Thanks!

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The standard injection is 1000 microgrammes of hydroxycobalamin. I have this every 2 months. Additionally 2000 microgrammes of methyl cobalamin orally as sublingual, daily. Full range multi vitamins.

Before injections, I was on 3 x 2000Microgrammes of methylcobalamin oral sublingual. Two in the morning, two mid afternoon and two at bedtime- I used to keep these under my tongue overnight, to maximise absorption.

I follow the full recommendation for Symprove and have 1 week left. Beware of assuming this is a cure. You have a normal biome with many thousands of different bacteria, Symprove is not that full spectrum but is formed of bacteria that appear to suppress harmful bacteria.

I never got any benefit from any other probiotic. Always take these as soon as you wake when stomach acid is at its lowest. I followed a strict regime of not eating or taking anything else for at least 30 mins, even drinks, so as to minimise the chances of elevating stomach acid.

This is no quick process. It has taken around 12 - 15 months to get to here. But gradually getting better over that period. I like to think I am cured but know this is highly unlikely.

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Thank you very much for your reply. I only found to buy sublingual tablets of 1000 ug hydroxycobalamin. I guess I will take 2 of them each day to see how it's going...

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Yep, that’s what I do. This is quite slow, if you have already started treatment, this is more about maintenance, not treatment. My treatment was the 2 first thing, 2 in the afternoon and 2 at bed. Always take multivitamins and minerals to keep folic acid levels, etc good. You probably won’t notice much if this is the starting point, give it 6 - 8 weeks for your blood to be refreshed.

Guessing you are in the UK you could try Nu U on Amazon.

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One more question though: why the injections if you had results with the sublingual methylcobalamin? For faster improvement?

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My haematologist says that hydroxycobalamin is absorbed into the liver whereas, methylcobalamin and cyanocobalamin is not. I understand this is the prime reason why hydroxycobalamin is the injectable form used by the NHS.

The loading doses of hydroxycobalamin are theoretically there to restore around 2-3 years of liver reserves that we should all have. This is why deficiency may not be experienced until some years after a causal effect, which complicates diagnosis.

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