B12 jabs

[gpw61]

Hi I've had in December top up jabs for b12 because it was 184 tested in late February and the level is 2000 anyone else had this or is it normal

[wedgewood]

After several injections, a level of 2000 is normal . I inject weekly , and my level is off the scale . Needs to be kept high with Pernicious Anaemia. Don't let a doctor persuade you otherwise. I have been injecting for 9 years . We all need varying regularity of injection . We find out by trial and error what we need . ( anything between daily and 3 monthly ) You cannot overdose ,which is a huge benefit . But this does not apply to other vitamins and minerals . Best wishes.

[Narwhal10]

Hi gpw61,

I do hope you are a member of the PA Society so that you have access to the correct and accurate information regarding this insidious disease/condition.

The medical profession rarely understand it. There are many myths around it. I can see it took 3 years for you to have injections. Then they made the big mistake of not just retesting you once but twice.

(Was this just before a 3 monthly injection was due ?) Then they made another big mistake of retesting you after an injection.

The British Haematological Society say there is absolutely NO point in testing once treatment has started. So, money has been wasted.

Now, as far as I am aware a value of 184 ng/L does not translate into fatigue, pins and needles, numb feet, tinnitus, burning tongue, poor balance. Likewise, a value of 2000 ng/L tells a person nothing.

Our disease/condition is dictated by our signs and symptoms.

There is another wonderful myth that is written by pathology laboratories that when we have a level of 2000 ng/L, we can now have enough stored in our liver for 2 years.

It as if by magic, we can suddenly do this. We cannot. It is just that simple.

🤓

[Sleepybunny]

Hi,

I've assumed you're in UK, let me know if you're not.

Just wondered what the GP thinks has caused your B12 deficiency.

Has the GP discussed your diet with you and have you been tested for PA (Pernicious Anaemia and Coeliac disease?

A few links worth looking at

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Membership open to people worldwide.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

B12info.com has lots of useful info about B12 deficiency

b12info.com/

Two useful B12 books

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

Martyn Hooper is the former 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.

I left other info that might be of interest on thread below.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

There is a pinned post "Various PA/B12D resources".

I'm not medically trained.

[Hockey_player]

Yup- very normal after injections. Which is why doctors are not advised to test the B12 once you have started injections.

[Rexz]

I can add nothing but to concur with wedgewood narwhal10 (a strange creature with a very long tooth! 😊) Sleepybunny and hockey_player

Mine has been at 2000 for 4 years now. Added to what Narwhal stated is your only B12 stores are what's in your blood serum. Your liver stores are useless as the mechanism for uptake is through your bile duct into the small intestine where it then follows the same uptake process as ingested B12.

Rexz

[Narwhal10 in reply to Rexz]

We have echolocation and sometimes drone on. 🤪🙃

[Rexz in reply to Narwhal10]

🤣😜

[FlipperTD]

Scientist, not medic. At least when the lab ran your sample, it simply allowed the >2000 result to be reported. They could have wasted even more resources by performing dilutions of your sample and re-running it until they got a result 'in measurable range' and then multiplying up the result, wasting even more time and money.

Like fellow cetacean Narwhal10, I am guilty of droning on and on too. [But I'm not stopping now.]

[Narwhal10 in reply to FlipperTD]

Dilutions on the first Sunday in March, FlipperTD !!! That is far too saucy.

[FlipperTD in reply to Narwhal10]

On the '50% positives in PA', it reminds me of the great Yogi Berra, who is reputed to have said 'Half the lies they tell about me are untrue' which I suppose could be applied to IFAb too.

[Rexz in reply to FlipperTD]

We love your droning FlipperTD and especially your non-medic scientification of any topic. 😊

[Allyhigha]

I am in the US and do injections myself. In between and to extend them I compound an intranasal paste with a methylcobalamin capsule in a sterile nasal spray, applied with a Q-tip. It works!