Health worry

[Blake55]

I am deeply concerned about my precious wife in regard to her diagnosis of Pernicious anaemia ( V.b12 deficiency) about two years ago. Initially, she was given tablets which were ineffective. The next step was injections, and sad to say, there was some relief, but ,short lived. Where does that leave my wife...and, millions of others who suffer the same? Pray tell me! Do the medical profession REALLY have our good health at heart?

[clivealive Forum Support]

Hi Blake55 are you in the U.K?

If are and your wife has a definite diagnosis of Pernicious Anaemia she should be having B12 injections regularly for the rest of her life. Prescribing her with tablets was next to useless.

Does your wife have any of the neurological symptoms listed below?

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

If she does then B12 injection frequency should be (at least) every eight weeks according to the N.I.C.E and the B.N.F. Guidelines which tell doctors how to treat their patients.

Make a list of her symptoms and present this to her doctor and ask him to treat her according to her symptoms and (perhaps) even re-start her on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible go with her to the appointment as you can validate your wife's neurological symptoms and the doctor is less likely to pooh pooh them in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

In addition it is also important that your wife's 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

I'm not a medically trained person but I've had P.A. for over 45 years and I wish both of you well.

[Blake55 in reply to clivealive]

Thank you for your reply and much information. It is kind of you to take the time , precious time, to help. We do live in the UK, but more specifically, Scotland. Bless you, you dear creature! Tom and Violet.

[Hidden]

Also, when you say the effect of the injections was short lived, how frequently was your wife given the injections ?

My understanding is they should be every other day until there is no further neurological improvement.

My GP wasn't interested in treating my low B12, as I tested negative for P.A.. I had most of the symptoms listed by clivealive so I self injected, alternate days for 2 weeks--- what an improvement.

[Gambit62 Administrator]

it would help if you could say a bit more about how your wife came to be diagnosed, what her symptoms were and more details of her treatment regime - what her loading shots were and what her maintenance shots now are.

Unfortunately there tends to be very low awareness of B12 deficiency. GPs are generalists so they can't know everything but B12 deficiency also cuts across specialisms so it can also be quite rare to find a referal to a specialist actually getting a treatment that suits the patient - particularly where guidelines may be absent or are suffer from inadequacies.

B12 isn't toxic which makes it a lot easier to treat yourself and it isn't that expensive, though cost can still be a barrier for some.

[Sleepybunny]

Hi,

How lovely that you are supportive and trying to help your wife.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone available

Based in Wales, UK but has members from around the world. PAS members can access details about PAS local support groups. Several in UK, one in USA, one in Australia.

pernicious-anaemia-society....

PAS can offer support and information. In some cases PAS can intervene on behalf of members.

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

1) BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) BNF British National Formulary Chapter 9 Section 1.2

Has details of UK B12 treatment. It's possible to get own copy of BNF from good bookshop or internet retailer. All UK GPs will have access to BNF, probably a copy sitting on their desk.

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

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

UK b12 treatment info can be found in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

Is your wife still receiving B12 treatment? PA requires lifelong treatment. PAS (Pernicious Anaemia Society) members can access a leaflet "Treatment is for Life".

pernicious-anaemia-society....

In UK, dietary B12 deficiency is sometimes treated by oral B12 tablets.

I am puzzled by the fact your wife had oral tablet treatment for PA at the start of her treatment. In UK, B12 injections are recommended for PA (see BNF links).

The pattern of B12 treatment varies from country to country. It can be helpful to know which country you are in.

UK B12 treatment for B12 deficiency without neuro symptoms is 6 loading injections over 2 weeks followed by injections every 3 months.

UK B12 treatment for B12 deficiency with neuro symptoms present (eg tingling, pins and needles, tinnitus, memory issues, balance problems plus other possible neuro symptoms) is a loading injection every other day for as long as symptoms continue to get better then it's an injection every 2 months.

Untreated or undertreated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.

Some forum members have pointed out the potential consequences of inadequate B12 treatment to their GPs during discussion or in a letter.

There is a PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members on PAS website.

pernicious-anaemia-society.... See Symptoms section

SACD is also mentioned in next two links.

From Martyn Hooper's blog about PA and B12 issues

martynhooper.com/2010/09/21...

PAS news item

pernicious-anaemia-society....

B12 books

"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.

Symptoms of B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

B12 blogs

Martyn Hooper's blog about PA

There may be stories that are relevant to your wife's situation.

martynhooper.com/

There is also an interesting blog about B12 issues on "B12 deficiency Info" website.

b12deficiency.info/

Proof of PA diagnosis/Blood test results

Some forum members have had their injections stopped at some point. It may be worth getting proof of PA diagnosis eg copies of medical records.

I always get copies of all my blood test results.

Access to medical records (UK info)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

Blood tests

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

b12deficiency.info/b12-test...

Unhappy with treatment (UK info) ?

Link about writing letters to doctors about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment

hdapatientcaretrust.com/

I am not medically trained, just someone who has struggled to get a diagnosis.

[Blake55 in reply to Sleepybunny]

Thank you for your reply! AND, all the info...bless you! I want ALL my brothers and sisters to be healthy and sane. We can't forget we live in a contaminated world...excluding nature!

[Ryaan in reply to Blake55]

You have the right to have injections for life if you have PA.

In worse case you just have to buy injections online and self inject like a lot of people who's Gp's don't treat PA properly.

You have been given some good advice and contacts above by other people on this forum.

I wish your wife well and hope you find a solution.

[Sleepybunny]

Hi,

There is a Scottish petition about B12 deficiency which you might find of interest.

parliament.scot/GettingInvo...

I know there is a Kilmarnock Thyroid and B12 D Support Group but not aware of any other B12 deficiency support groups in Scotland.