Can B12 deficiency symptoms relapse after ongoing treatment?

[Smileyhelen]

Hi

I new to the site - but having a bad experience and not feeling helped by my GP at all.

Ive been treated with 3 monthly B12 injections for about 7 years, following a level of 60 something. (I was in a bad way)

Initial treatment was good (followed guidelines perfectly) and I was just left with some residual damage - easily tired, some tingling and some change to my memory/concentration. Ive coped with them ok.

This year my symptoms are back, getting worse and I'm struggling. Ive got new ones like Tinnitus too.

The Dr says im depressed (im not, im kinda cheerful) and my work Bupa cover is doing Gastric tests which are coming up with nothing.

Could my B12 be relapsing despite ongoing injections after all this time?

Could it be a commonly related but different illness with similar symptoms?

Has anyone had a similar experience?

Thanks

[clivealive Forum Support]

Hi Smileyhelen I was nearly forty years on the same dosage of B12 injections for P.A. during which time toward the end I began to have a return of some neurological symptoms in the run up to my next jab

My "one size fits all" doctor refused to increase the frequency so six years ago I joined the Pernicious Anaemia Society and asked on their then forum whether I was the only person in the world with this problem. I was amazed to find "I was not alone".

Fortunately I was able to persuade my doctor to increase the frequency and I find using a Methylcobamalin mouth spray helps between times.

It is also important that your Folate level is monitored as this is essential to process the B12.

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.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Gambit62 Administrator]

Have you kept a diary of symptoms - may be that you need maintenance doses more frequently

May also be that something else is going on that has similar symptoms. Have you been tested for an auto-immune thyroid problems (not that there aren't problems with the way tests are used to diagnose that ). Something like 40% of people with PA go on to develop auto-immune hypothyroidism (hashimotos)

[Smileyhelen]

Thanks both for your replies - this has given me a list of stuff to do and check with the Dr as next steps.

Its so difficult struggling on and not knowing what to do - definitely helps to know im not the only one with these problems.

[Panpal]

Hello Smileyhelen,

I was diagnosed with Hypothyroidism in 2004. When I started having symptoms of PA last year I thought it was may be my thyroid problems again as symptoms are similar.

Something I always think about ' Normal' does not mean healthy and 'normal' for who. While my GP is good she is not as she said an expert. It was this forum that helped me realise I need to take iron tablets and folic acid.

I am waiting to be seen by a Neurologist.

Good Luck!

[Sleepybunny]

Hi,

I'm not medically trained.

"some tingling and some change to my memory/concentration....got new ones like Tinnitus too. "

Tingling, memory problems and tinnitus are usually considered to be neurological symptoms.

Do you have any other neuro symptoms?

What were your symptoms when original low b12 found...you said you were in a bad way?

pernicious-anaemia-society.... See checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

"been treated with 3 monthly B12 injections for about 7 years"

In UK, recommended treatment for people who are symptomatic for B12 deficiency with neuro symptoms is....

a b12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a B12 jab every 2 months.

You appear to have been put on the standard treatment regime for B12 deficiency without neuro symptoms which is

6 loading B12 jabs over 2 weeks followed by a jab every 3 months

Your GP can find the info on UK B12 treatment for those with B12 deficiency with neuro symptoms in following documents. I suggest you look for yourself as well.

1) BNF British National Formulary Chapter 9 Section 1.2

All UK GPs will have access to BNF, probably a copy of it on their desk or bookshelf

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

2) BSH Cobalamin and Folate Guidelines, treatment info a quarter through guidelines

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

Consequences of under treatment

Untreated or under treated b12 deficiency can lead to further deterioration and possibly permanent neurological damage including spinal problems.

PAS article on Neuro Consequences of PA (Pernicious Anaemia)

pernicious-anaemia-society....

Pernicious Anaemia (PA)

Do you have a diagnosis of PA? Have you ever had an Intrinsic factor Antibody test?

What did the doctors think caused your original low b12 level?

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS can offer support and info about PA. In some cases they can intervene on behalf of PAS members who are struggling to get correct treatment.

Unhappy with treatment?

Link about writing letters to GPs about B12 deficiency (UK info)

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

I have written some very detailed responses recently. If you search for my posts on the forum, there may be some useful info.

Lots of B12 info in pinned posts on this forum, including useful summary of b12 documents in third pinned post.

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with 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 book about B12 deficiency with lots of case studies.