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B12 mystery

Hindi1989 profile image
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So, I did the 23andme DNA test and it turned out I had several SNPs including Homogeneous MTR/MTRR. I recently had done a blood test and my homocysteine levels were 19.8 which was quite high as I'm in my late 20s and have a healthy diet. In addition to all this, I have all the classic symptoms of b12 deficiency like balance issues, mental fog and memory function, moods issues, low energy, sleep issues etc. I tested for b12 and it was around 400 which was normal.

I then started taking high daily dose 5000mcg methylcobalamin and occasionally methyfolate and other Bs and TMG for several months. I checked my homocysteine levels and they were significantly lowered (9) yet my b12 levels did not even change and my symptoms remain largely the same. I don't know what to do as I really want some mental clarity and help with sleep.

Any suggestions? My thyroid seems to be fine and it doesn't seem to be depression as I have naturally high levels of motivation and normal social life thought lack of energy and mental clarity does have a negative effect on them.

Thanks,

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Sleepybunny profile image
Sleepybunny

Hi,

If you have an absorption problem in gut eg PA (Pernicious Anaemia), Coeliac disease, gut damage due to H Pylori infection then oral tablets/lozenges may not make a lot of difference to B12 levels.

I am not medically trained.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

From personal experience I know that it is possible to have severe B12 deficiency with b12 levels that are well within range.

If you're in UK, I suggest reading the following documents

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who have symptoms of B12 deficiency even if B12 levels are within range.

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Have you got recent blood results for folate, ferritin ( or other iron results) and full blood count ( known as Complete Blood Count in USA).

There is more B12 info in pinned posts on this forum. I have written more detailed replies on recent threads , may be worth searching for them.

Gambit62 profile image
Gambit62Administrator

MTR and MTRR are genes that control the specific processes carried out on your cells.

ghr.nlm.nih.gov/gene/MTR

ghr.nlm.nih.gov/gene/MTRR

Variants on both can make the methionine process run less efficiently and result in high levels of homocysteine.

This is very different from having a problem absorbing B12 which leads to a B12 deficiency..

The symptoms you are reporting are probably down to this process running less efficiently rather than a specific B12 deficiency - the symptoms overlap because B12 is needed by the process so B12 deficiency will make the process run less efficiently.

Treatment of genetic problems is well beyond the remit of this forum.

This link provides some links to management guidelines

ghr.nlm.nih.gov/condition/h...

The protocols refer to treatment with pyroxidine (B6) and folate (B9) and don't actually mention B12

However, B6 is toxic in high doses so I think you really need to speak to your GP though the links given above may be useful.

As this subject is strictly off topic I am going to close this post to further responses

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