What is benchmark for b12 levels - Pernicious Anaemi...

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What is benchmark for b12 levels

B12X profile image
B12X
16 Replies

Does anyone know the range for low b12

Mine is 141

I have burning feet

Can anyone help

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B12X
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16 Replies
Gambit62 profile image
Gambit62Administrator

There are two units used to measure B12 and they lead to different ranges though your levels would be low on both ranges - assuming the test was serum B12 and not active B12.

Was there a range with the test result? You need to use this range as different labs use different test methods/equipment and this can lead to different ranges.

Burning feet is a symptom of B12 deficiency but then it could be a symptom of a lot of other conditions.

A more comprehensive list of potential symptoms can be found here

pernicious-anaemia-society....

Serum B12 isn't a gold standard test - and needs to be evaluated in a context. Did you have a full blood count done? other vitamins and minerals? thyroid?

B12X profile image
B12X in reply to Gambit62

I have just got my results from the doctors and told to rebook an appointment i had an inflamation test done kidneys and liver everything came back good except the b12 result

I have had low levels since 2016

Tablets no good

Then gave me amotryptolene which made me disfunctional

Hopefully I went to a different doctor in the same practice and told me she would will get this problem sorted

So feeling a bit more confident

Thank you for your information its been really helpful

MariLiz profile image
MariLiz

My GP began injections when my level was 176 and I had lots of symptoms. Other people might feel OK at that level. All of us are individuals, and the blood serum level is just that. You could have a high blood serum level, but it might not be reaching your cells.

Have a look at the Pernicious Anaemia Society website for a full symptom list. You can tick any that apply to you, and approach you doctor for more help if necessary.

B12X profile image
B12X in reply to MariLiz

I do have a lot of other symptons

So really i need to check my blood serum level ?

MariLiz profile image
MariLiz

I think with a level of 141 and symptoms you will probably need treatment. Have you tried a sublingual spray or dissolvable lozenges? You have obviously tried tablets and they didn’t help.

Is your GP prepared to start you on injections? That is going to be your best way forward, if they are happy to treat you.

B12X profile image
B12X in reply to MariLiz

Hi Mariliz

Thanks for reply .

I have tried tablets only which increased it to 150 still not good

The doctor rang today with the news of injections every two days for a week then every 3 months thereafter

So the course starts next wednesday so i will keep posting thanks for your concern

MariLiz profile image
MariLiz

Are you in the UK? The usual loading dose should be six injections over two weeks. Then, if you have neurological symptoms the injections should continue every other day until there is no further improvement.

I didn’t get the continuing injections, but went onto three monthly after my loading doses. After two years of still feeling that my energy levels were running down before each injection I was able to renegotiate the frequency of my injections . By getting my GP to agree to a trial period of injecting every six weeks. This made a huge difference to how I felt, and continue to feel.

We aren’t all the same, and what works for one person may not work for another.

I hope your GP will be open to discussing your progress, and be flexible with the frequency of your injections, if necessary.

Don’t worry if initially some symptoms feel worse, this is due to the nerve endings suddenly getting the B12 they need. They’ve been struggling on a low level for some time, and suddenly the level increases and so does their functionality.

Best wishes

MariLiz

B12X profile image
B12X in reply to MariLiz

Why am i picking up from you that there is a lot of difficulty in getting these b12 injections is it because they are dangerous ? Or rare? Or expensive ?

Please can u share ?

Idont understand , i dont like the thoght of me being dependant on them for the rest of my life

I actually think personally im in this situation because my chlosterol was high and have now suceeded in lowering my cholosteroli have made myself defecient in vit b12

Is that possible ?

How long does it take to get your b12 up?

Yes I am in the U.k

Looking fwd to your replies

Warm regards

MariLiz profile image
MariLiz in reply to B12X

The injections aren’t expensive, I think the reason doctors aren’t keen on giving them to people is that ordinary GP’s haven’t got a lot of knowledge about the effects of low B12. Also it takes up appointment times for the nurses giving the injections.

Low B12 can cause permanent nerve damage if it is left untreated for a long time. Have a look at the Pernicious Anaemia Society website for a full symptom list. The founder of this Society suffered very badly himself, and has written several books on the subject. His name is Martyn Hooper, should you wish to read anything by him. It does help to understand how important B12 is to every cell in the body.

I’m not sure of the connection between lowering your cholesterol and making your B12 lower. If you reduced your meat and protein intake that might explain it. Vegetarians often need treatment to boost their B12 levels. Others find their levels fall as they get older, due to their digestive system not working as efficiently. Also those who take acid reducing medication are more likely to have problems.

Don’t worry about being on injections, I have been on them for nearly four years now. It took me about six months to really feel an improvement in my condition. Also when the frequency was increased to six weekly things improved even more.

Best wishes

MariLiz

B12X profile image
B12X in reply to MariLiz

Thank you for being so informative with your replies

There is only one more thing i would like to clarify with you

Which type of B12 is best for injecting

The Hydro or the Methyl?

As this is also confusing

Warm regards

MariLiz profile image
MariLiz in reply to B12X

Generally speaking in the UK methylcobalamin is the usual form used. Other kinds are offered in different countries. Some people may find they need another type for it to work properly.

Now I have written this reply, I am questioning my own response, and wondering if it is hydroxy. I am afraid it has been a long day and my brain is a bit sluggish at the moment.

Someone will no doubt confirm whether I am right or not.

My apologies if I am wrong.

B12X profile image
B12X in reply to MariLiz

Ive been perscribed hydroxy and my friend who is also on b12 is on hydro

So it seems we in the uk use that one

Probably the cheapest .

Thanks anyway you have been great support with this matter

Take care

helvella profile image
helvella in reply to B12X

The UK changed to hydroxocobalamin many years ago. It is not the cheapest per injection.

However, those who know more than me say that it remains available in the body longer.

Methylcobalamin is rarely used - not even sure if anyone has been given that under NHS care. (But is is commonly taken as over-the-counter privately purchased oral supplement.)

B12X profile image
B12X in reply to helvella

Thanks for your help

MariLiz profile image
MariLiz in reply to B12X

I was wrong , and it is hydroxy. The methylcobalamin was the one I bought to use as a supplement between injections.

Good luck with everything.

From MariLiz

B12X profile image
B12X in reply to MariLiz

Thanks

I am looking forward to injections as 3 years of adverse side effects and waiting for diagnosis

To the point of depression and anxiety

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