B12 Institute - Diagnosis and treatment pitfalls

[Sleepybunny]

B12 Institute is in Netherlands

Article about diagnosis and treatment pitfalls

b12-institute.nl/en/diagnos...

[wedgewood]

Thank you very much indeed for forwarding that excellent article . Can’t wait for the day when such information is acted upon in U.K. !

[Nackapan]

Thanks gives me hope as csn take years.Good confirmation.

[TiredDave]

Thanks for sharing that. Hope the UK wakes up and comes to it's senses. My GP had put me on 6 weekly injections and been on that for a couple of years. Then all of a sudden changed back to 3 monthly. I felt awful, wrote to GP not even a response. Next visit to nurse asked if she'd show me how to self inject, but wouldn't. Saw GP and said it was probably something else! Strange when had injection symptoms went!! Now self injecting and not going to GP anymore for injection. Also heard nothing from surgery about not having injections!!

[Mrsannabbott]

Marvellous article.Thank you.Wish I could have a printout but don’t possess a printer.

[Cherylclaire Forum Support in reply to Mrsannabbott]

Is your local library up and running yet, and does it have computers linked to a printer ?There is usually some kind librarian there willing to help if you need it.

[Mrsannabbott in reply to Cherylclaire]

Thank you .Another member came to my aid.

[Narwhal10]

Excellent post. Thank you

[Cherylclaire Forum Support]

So good to see in writing what we all know to be true.

Thanks, Sleepybunny , for trawling for articles and research for all of us.

It might just be the very piece of paper that persuades a GP to think twice about stopping someone's injections. Let's hope it can makes a difference.

Plus always nice to hear we're not addicts.

[Bellabab]

Excellent article and the translation from the Dutch gives it a slightly entertaining and welcome break from the usual sterile academic tone.

[Lyntwo]

Thank you for posting this.

[doityourself]

Hi everyone, does anyone know of similar articles originating from UK? I showed it to my nurse Practitioner who said this wasn't the Netherlands.I have written a formal complaint to GP about her dismissive attitude and stated I do not wish to be treated by her again and that any decrease in my b12 from 8 to 12 weekly based on a blood test as suggested by her is not acceptable to me.

I await his reply!

[Sleepybunny in reply to doityourself]

Perhaps there may be something useful in the links below....

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS

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

cks.nice.org.uk/topics/anae...

May be useful articles in pinned posts on this forum.

Useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF Hydroxycobalamin link in this reply.

"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 with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

GP will have access to BNF (British National Formulary). Info on treatment with hydroxycobalamin is in Chapter ( Section 1.2)

Online BNF

bnf.nice.org.uk/

Online BNF for children

bnfc.nice.org.uk/

Films about B12 deficiency and PA

PAS conference 2019

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

English articles from another Dutch B12 website

(lots of good articles)

stichtingb12tekort.nl/english/

"I have written a formal complaint"

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment

PAS (Pernicious Anaemia Society)leaflets/articles

Lots of useful ones.

pernicious-anaemia-society....

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

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

patients-association.org.uk...

"does anyone know of similar articles originating from UK"

What sort of info do you want the article to contain?

[doityourself]

Thank you so much for all that info

[Sleepybunny in reply to doityourself]

Each CCG/Health Board/NHS Hospital Trust will have its own local guidelines on treatment/diagnosis of B12 deficiency .

I suggest you try to track down the local guidelines for treatment/diagnosis of b12 deficiency in your area of UK and compare them with BSH/BNF and NICE CKS links.

I have posted some of these local guidelines on the forum so may be worth searching the posts.

If you can't find them by an internet search, you could submit an FOI (Freedom of Information) request to your CCG, maybe your GP surgery...asking for a copy of local guidelines. This may irritate them.

I've written some very detailed replies with more B12 info eg more B12 articles, more B12 websites in threads below which might be of interest.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[doityourself]

Thank you very much for this information. I struggle to understand why so many in the medical profession continue to make life so difficult for some of us. I have to use every ounce of my intelligence to get through the last few weeks before each injection. Thank goodness I still manage to otherwise quite frankly I would fear for myself.

[Sleepybunny in reply to doityourself]

Some of the local area guidelines are not helpful and may constrain how GPs can treat you.

Hope you are not in area mentioned in blog post below.

b12deficiency.info/blog/202...

[Hidden in reply to Sleepybunny]

I know of three people (my self included) who were put on oral medication and now are suffering the consequences of this treatment in gloucestershire. ALL have had b12 injections reinstated, A lady of 83 kept collapsing the latest. I am now getting monthly injections , though my muscles ache at doing normal things. I go very hot as though I've been through a

Serious workout. I just have to keep going and work through the pain, I've been through it before and know eventually with enough b12 I will recover.

A lot of it is down to GP's and fighting your corner.

[Sleepybunny in reply to Hidden]

I am so sorry to read about the difficulties the three of you went through.It seems so cruel.

Perhaps one or more of you could fill in the current PAS survey?

pernicious-anaemia-society....

Or talk to person who runs B12 deficiency info or comment under her post about guidelines in Gloucestershire?

b12deficiency.info/

I sometimes suggest to people that they contact their local MP or devolved representative if they are struggling to get adequate treatment.

members.parliament.uk/

I'd like to see an All Party Parliamentary Group (APPG) on B12 deficiency being set up.

It seems wrong to me that so many are forced to treat themselves by sourcing B12 ampoules etc from European online pharmacies.

[Hidden in reply to Sleepybunny]

I quite agree with you it is cruel and needless.I personally don't understand why they keep b12 injections under lock and key, when it is KEY to someone's recovery.

I'm just enormously grateful that after writing to the surgery they have been extremely good to me.

And compared to my old surgery they are polars apart. Not a million pounds would entice me back.

[VellBlue]

Can anyone share a screenshot of this article. It sounds interesting, but don't seem to be able to access from my country. I just get this:

Website access blocked