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Confused. Please help

Ft84 profile image
Ft84
12 Replies

I was deficient in B12 levels were 103 pg/mol

I started to have slight numbness so I started taking b12 sublingual 1500 mcg a day.

With 3-4 days numbness subsided and I was fine. After taking sublingual for 15-16 days I started exercising properly.

But after exercising for around 18 days my numbness relapsed this time more intense.

So basically I had no symtpoms for 45 days after taking sublignual.

Does it mean I can absorb sublingual. Why does my symptoms relapsed after 40 days.

Could it be the exercise which I started doing before replnishing my b12 stores.

What should I do now

My anti parietal and intrinsic factore were negative

Please reply.

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Ft84 profile image
Ft84
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12 Replies
Nackapan profile image
Nackapan

You dud well to correct your deficiency with sublinguals

Was it diet related.?

Perhays you needed longer before picking up your exercises regime.

Keep up the b12 sublinguals and do less and see what happens perhaps?

Ft84 profile image
Ft84 in reply to Nackapan

Hi. I am non vegetarian but it isnt included in my daily diet and it is more of poultry then red meat.

I have been lactose intolerant to a large extent since childhood.

Was diagnosed with h pylori and recieved a treatment. Havent check the results.

After relapsing of the symptoms, sublingual helps to keep my symptoms at bay but they recur often but in mild form.

I have started injection but they also follow the same pattern of relapsing of symptoms as sublignuals.

I am so confused.

How much time does numbness takes to heal 🙄

Gambit62 profile image
Gambit62Administrator in reply to Ft84

type of meat isn't that relevant - just that you are consuming animal products would point to an absorption problem rather than a dietary deficiency.

Ft84 profile image
Ft84 in reply to Gambit62

Yeah But the chicken is also not included in my daily diet sometime once a week and even twice a week.

One of my cousin is a GP in london , she told me chicken is a poor source of b12.

But yeah I also feel that deficiency is due to malabsoprtion largely due to h pylori.

I have completed my sixth weekly injection.

Gambit62 profile image
Gambit62Administrator in reply to Ft84

The amount of B12 you need daily is extremely small - the diets currently seen to be really good diets - contain very little meat/fish - may be once a week if that. H pylori is likely to be the cause of the deficiency

Ft84 profile image
Ft84 in reply to Gambit62

Yeah. Does h pylori malabsorption can be sorted with oral then shots ?? Because I was absorbing sublingual as my symptoms subsided in 2-3 days but dont know what happened after 40 days and symtpoms relapsed.

Since I read it basically leads to malabsorption from food bound cobalamin unlike PA where there is no absorption

Gambit62 profile image
Gambit62Administrator in reply to Ft84

I don't have an answer on the change at 40 days.H pylori, is a treatable absorption problem.

High dose oral >1000mcg can work in people who have absorption problems because some will be absorbed outside the ileum - averages about 1% so it may have been that that was enough.

Note: 1% is an average - and there does seem to be some significant variation between individuals and passive absorption doesn't actually work for everyone.

Sleepybunny profile image
Sleepybunny

Hi,

I've assumed you're not in UK.

You mentioned weekly B12 injections on another thread. Are you still getting these?

Has your doctor tested your folate, iron and Vitamin D levels?

Some people experience a drop in potassium levels when they start B12 treatment.

Perhaps you could ask your doctor if they think this is a possibility.

H Pylori can be difficult to eradicate.

Have you had tests to see if you still have a H Pylori infection?

Article about H Pylori

patient.info/digestive-heal...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

"My anti parietal and intrinsic factore were negative"

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

I'm guessing there might be a few people with PA who test negative on both tests.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I am not medically trained.

ClareP5 profile image
ClareP5

It could be reversing out syndrome - which can be quite unpleasant (British understatement). If you have damage to the long nerves in arms and legs as they heal it's quite unnerving. Good luck - I would say keep calm and carry on taking your B12. I had good and bad days in the beginning, after a year on a much more even keel...

jointpain profile image
jointpain

Hi Ft84, you say you are lactose intolerant, this may point to damaged villi in your ilium. As your reabsorption of B12 is carried out in your ilium, you may be unable to reabsorb enough B12 due to the damage. If you are celiac and eat gluten regularly the gluten will damage your villi in your ilium, hence you will then be lactose intolerant, and then be vitamin B12 deficient.Hope this helps, it did for me.

Danaaa profile image
Danaaa

Which form of sublingual were you taking? Maybe double it when excercising is my first thought. There are cofactors needed to work with b12 such as folate - so maybe look into those. F’biok has a great group called b12 wake up, if you want to join that xx

charks profile image
charks

Hi there

Danaaa is right. I take oral B12 and I also exercise quite a lot. Whenever I exercise I take extra B12. Same when I have a night out as alcohol also reduces B12 levels. Also I have found that B12 liquid supplement diluted in water is the best way for me to absorb B12. And it is very handy. I take a bottle with me when out exercising. Like an energy drink.

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