Late diagnosis of B12 deficiency

[Magaret111]

Hi my name is Margaret and I'm new here.

Around 4-5 years ago (memory problems) I was diagnosed with B12 deficiency.this came after around 10 years of health issues and numerous hospital appointments with various consultants.and many thousands of wasted NHS money!

Lying in bed one day, unable to walk properly, completely exhausted and feeling like I was going to die, I searched google with the question "why are my iron pills not working"? (Id been on iron off and on for many years) One of the pages that came up was for the B12 D website, I clicked on this and when I read the symptom checker I had EVERYTHING!! From the swollen red sore tongue that my Dentist and Doctor said was due to low iron, the tingling in hands and feet, the burning in my feet, the numb feet that I was sent to a podiatrist for (he gave me insoles) , the involuntary bowel evacuation that I was sent to see a consultant for, the swallowing problems that my GP said was anxiety but only after having various tests at the ENT department of my local hospital that came back clear.

I visited my GP the very next day and asked for a B12 test...I will always remember her reply.she looked at her computer screen and said."oh that would make sense as you've got very large red blood cells"!!!! She was reading my previous blood results that were screaming B12 and were ignored.

A few days later the results came back at 95 (150-1000) and injections were started.

3 months NHS injections is nowhere near enough for me and so I self inject around once a month.the majority of my symptoms have disappeared including the 'anxiety' swallowing, but I still have memory loss.i still get the brain fogs and I still wait for Doctors to catch up on this pernicious disease.

I would inject more often to try and regain my health 100% if my Doctor would test me for the cofactors. He won't and so I just muddle on trying my best.

[clivealive Forum Support]

Hi Magaret111 Do you know what your Folate level is as the symptoms of folate deficiency are similar to those of B12 deficiency?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Increasing your frequency of injection should do you no harm as you cannot "overdose" on B12 - any excess is excreted via your urine.

I'm not a medically trained person but one who has had P.A. (a form of B12 deficiency) for more than 45 years.

[Lisahelen]

I dont understand why your gp wont test the other things which go side by side with b12 especially as one needs the other to work effectively.

Can you afford to get your own done privately? There are a couple of companies that many of us have used who arent too expensive. Its a fingerprick test and the results are viewable within a few days.

It seems such a shame as you seem to have got answers but havent got a gp who knows how to deal with it.(an unfortunate but all too frequent problem!)

[Ryaan in reply to Lisahelen]

Can you name the companies please.

Thankyou in advance.

[Lisahelen in reply to Ryaan]

As gambit says, really you need to try to get your gp to initiate further tests, but medickecks and blue horizon are blood testing companies

[Gambit62 Administrator]

you have neurological issues - correct protocol in UK (NICE guidelines) is

loading shots 3xweekly until symptoms stop improving (review at 3 weeks) followed by maintenance doses 2 monthly. Think first thing you should try is pointing this out to the GP

[potter5]

Hi Margaret, your b12 was really low and with your neurological symptoms you should be getting every other day b12 injections protocol, but like most people it is the si route. I think though you need to insist your GP tests for cofactors. As suggested take NICE guidelines with you to your appointment. I wish you well.