Wife has pernicious anemia looking for advise please

[De8080]

Hi I was wondering where people bought there injections from As I have tried to buy from places but won't send to Scotland

Thanks

[clivealive Forum Support]

Sorry De8080 I cannot help you with that but why is not your wife getting B12 on prescription from her doctor?

[Cb1963]

There are people on this site who know companies that will probably provide you with the medication required, normally it's from a German or Dutch based company, is your wife not getting her injections in Scotland???? I still receive mine, but I was quite forceful to keep my injections going, hopefully someone will see your post, but unfortunately the new layout of this site seems to make things not as easy, best of luck

[wedgewood]

As Clivealive says , your wife should. be getting adequate B12 injections through your GP, often enough to keep symptoms at bay . But most of us on this forum have been through the dreadful battle of trying to get adequate injections . We are all different and need different regularity of injections. This is not acknowledged, by the doctors and we get desperate, and worry about symptoms becoming irreversible, which can and does happen ( it happened to me) So we are forced to obtain our B12 depot ampoules ( Hydroxocobalamin) from German online pharmacies . B12 ampoules can. be obtained there without a prescription, unlike the U.K . . The German online pharmacies are very reliable and strictly controlled by the Health authorities . No need to worry . YOU CANNOT overdose on B12 — inject as often as required to keep symptoms at bay . Some patients need daily injections. Some manage on 3 monthly , and anything in-between. So find out by trial and error what is needed . A modest daily 400 mcg folic acid tablet is good to have as well It works with B12 . I’ll send you all the information that you need . Best wishes .

[deniseinmilden in reply to wedgewood]

Thank you for your help with this! x

[Hidden in reply to deniseinmilden]

🌹🌹🌹🌹🌺🌺🌼🌼🌼Hope you feel better and everything went well !

Sorry hi jacking someone else's post !

[deniseinmilden in reply to Hidden]

This implant was really straightforward, thank you, due to the absolutely brilliant, kind and caring surgeon.

My body really appreciated having a day off and it's only just starting to catch up with me - I'd (almost) kill to be able to go to sleep now! 😃I have a gutted kitchen to paint for someone, ahead of my friend helping me start to fit it later in the week.

Onwards...!

I hope some of your troubles are more manageable now and you're having a good Easter? 🤞🌞😘

[Hidden in reply to deniseinmilden]

Don't over do it ! As we all say listen to your body.Glad all went well.

[De8080 in reply to wedgewood]

Thank you She does get b12 though NHS But it's every 3 months and I don't feel this is enough

[Adsypadsy]

Hi,I ordered from Juvalis.de (I think part of the VersandApo group) last Monday and it was delivered to my home in Central Scotland on Friday, no issues.

[Sleepybunny]

Hi,

Like others on this thread, I'm wondering if your wife is getting any B12 injections from NHS?

Is there an issue with

having the symptoms of PA but diagnosis has not been confirmed so GP won't treat

getting NHS B12 injections but they are not often enough

her B12 injections have been stopped

I and others forum members can post a lot of info that could help to get NHS treatment increased or reinstated and knowing what the particular issue is will help people to post the most relevant information.

I understand that sometimes people have enough of fighting to get adequate treatment and turn to self injection as a last resort.

I'm going to post a huge amount of information below that you and your wife may find helpful or interesting. I suggest you take at least a week to look through it so it's not so overwhelming.

Some links may have details that could be upsetting.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms present.

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.

With a PA diagnosis or if PA is suspected, may be worth your wife or you joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has useful leaflets/articles including

"Treatment changed - what can you do?"

"Treatment is for Life"

pernicious-anaemia-society....

and a page for health professionals that her GP may find useful

pernicious-anaemia-society....

UK B12 documents

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

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 (British National Formulary) link below outlines two patterns of treatment for B12 deficiency

1) for those without neuro symptoms

2) for those WITH neuro symptoms

If your wife has neurological symptoms, was she given the pattern of treatment for those "with neurological involvement"?

BNF Hydroxocobalamin

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

NICE is the National Institute of Health and Care Excellence.

CKS stands for clinical knowledge summary.

NICE CKS B12 deficiency and Folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Local B12 deficiency guidelines in UK

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Two 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).

BNF treatment guidance is out of date in above book.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Misconceptions (wrong ideas) about B12 deficiency

It's quite common on this forum for UK members to meet health professionals whose understanding of B12 deficiency is not what it should be.

I hope your wife's GP does not have any misconceptions about B12 deficiency.

B12 article from Mayo Clinic in US (aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

BNF (UK) treatment guidance has changed since this blog post was written.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

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

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[Sleepybunny in reply to Sleepybunny]

Links about B12 deficiency specific to Scotland

NHS Scotland link about B12 deficiency and Folate deficiency

nhsinform.scot/illnesses-an...

Here's a link to an article about a review of patients receiving B12 injections for a Scottish Health Board.

guidelinesinpractice.co.uk/...

Advice to GPs on when to test B12 - Scotland

hats.scot.nhs.uk/wp-content...

Accessing Health Records (Scotland)

nhsinform.scot/care-support...

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

List of Health Boards in Scotland

scot.nhs.uk/organisations/

NHS Highland Guidelines B12 deficiency

See section on Testing Results/Interpretation/Management for treatment algorithm

tam.nhsh.scot/for-healthcar...

Next review of above guidelines due in Feb 2023.

NHS Lothian Guidelines

apps.nhslothian.scot/refhel...

NHS Borders

I found a FOI (Freedom of Information) request for Borders Health Board that stated NHS Borders health board uses the BSH Cobalamin and Folate Guidelines (see BSH link in my first reply). This may have changed as not sure how old FOI request was.

NHS Lanarkshire

I found this link to a review of patients on IM (intra muscular) B12 injections for NHS Lanarkshire. It discusses how to identify those patients whose B12 injections could be stopped and includes a treatment algorithm.

nhslguidelines.scot.nhs.uk/...

Above info is due to be reviewed in October 2023.

Haven't been able to find guidelines for other Health Boards in Scotland

A Scottish National Formulary (SNF)was being developed.

Not sure if this has been published yet.

This will give recommendations on what drugs/medicines can be prescribed in Scotland and may affect what GPs can prescribe for B12 deficiency.

I believe at moment that the BNF (British National Formulary) is used in Scotland.

Petition to Scottish Parliament about B12 deficiency (covers period from 2011 - 2018)

parliament.scot/GettingInvo...

Click on underlined headings in link above for more info.

Support Groups in Scotland

PAS is hoping that face to face meetings will start again this year.

There was a PAS support group in South Scotland...think it needs a group co-ordinator at moment.

pernicious-anaemia-society....

There was a Thyroid Support group in Kilmarnock that welcomed people with b12 deficiency.

I don't know if this group is going to resume face to face meetings this year.

healthunlocked.com/thyroidu...

B12 Society (UK charity based in Scotland)

theb12society.co.uk/

CAB (Citizens Advice Bureau) Scotland - NHS Complaints

citizensadvice.org.uk/scotl...

PASS

Patient Advice and Support Service (Scotland)

careinfoscotland.scot/topic...

cas.org.uk/pass

Local MP or MSP may be worth talking to if struggling to get adequate treatment.

Health is a devolved matter in Scotland.

List of MSPs in Scotland

parliament.scot/msps/curren...

List of MPs in Scotland

members.parliament.uk/regio...

Scottish Public Services Ombudsman

spso.org.uk/

[Ryaan]

I have 10 packs of B12 hydroxocobalamin injections from Versandapo.de in Germany. So I have 100 spare ampules.

When I ordered they delivered them to the wrong address on my street and I reported that i didn’t receive anything so they sent me another 10 packs.

If you send me your name and address by private message I will post them to you.

No money involved and I won’t be using 200 injections so it would be a shame to waste them.