IFA POSITIVE AND RELIABLE SUPPLIERS

[smg1950]

hi not sure if allowed to ask about suppliers but my GP will not give me B12 jabs despite IFA 36 and Actuve blood test done privately shows B12 deficiency. Am paying for private but is high IFA always PA please? TIA

Sue

[wedgewood]

As you have a positive Intrinsic Factor Antibody test and a low active vitamin B12 result , that indicates that you have Pernicious Anaemia. , and you need to have loading doses of b12 as soon as possible . Strangely , you do not mention any symptoms of P.A./ B12 deficiency .

It is grossly negligent that your doctor has not given you loading doses of B12 injections , and I would change my doctor immediately..

It is possible to obtain B12 ampoules for self-injection from good reliable German pharmacies . These are obtainable in Germany without prescription , unlike in U.K. . Many members of this forum find it impossible to get b12 injections regularly enough to keep symptoms at bay , so are forced to self inject . This is easy and cheap . An injection costs about £1.60 , everything included. I will send you information by private messaging , because it is so long that it exceeds the number of characters possible for a message on this site . Best wishes .

[smg1950 in reply to wedgewood]

thank you. I have many symptoms snd my GP sent me for a brain scan ! Cheaper if she’d just do jabs!

[deniseinmilden in reply to smg1950]

So true! Well done on getting yourself so well informed. Good luck with getting as well as possible again.

[Thalia56 in reply to smg1950]

I too was sent for a brain MRI and an urgent neurological consultation before being diagnosed with low B12; while I’m very grateful for the attention and care I received, I’ve always wondered just how much that cost the NHS when all I needed was a B12 blood test.

I hope you’re able to start self-injecting swiftly using Wedgewood’s info and that thing start to improve for you very soon, though I would genuinely consider changing doctor given the lack of treatment after your results.

[smg1950 in reply to wedgewood]

hi Wedgwood I cannot find your list of suppliers .Can you repost it. I don’t know how private messaging works and I’m very sorry to ask you to resend

Thanks

Sue

[wedgewood in reply to smg1950]

You sho7lc receive an email informing you that you have a message from healthunlocked . Click on the link ,band you should find the private message . If you want to private message someone , you need to click on their representative icon , and you will be taken to the right place where you can choose to chat .

I will anyhow send you the information publicly , but I will have to delete some because it exceeds so many thousand characters . ( only 7,000 characters allowed on public messages !)

[wedgewood in reply to smg1950]

I’ve tried repeatedly to send you the information by public messaging , after having pared it down by half ! but I keep getting the message that it contains more than 7,000 characters , so will not send . This is a new phenomenon. It# never happened before. Don’t know what to do about it . But it is in your private messages , I have checked ,so please try to get your private messages as I have described .

[smg1950 in reply to wedgewood]

thank you . I have got it now

[wedgewood in reply to smg1950]

I’m really glad . I was at my wits end trying to send you the instructions on public messaging , but it wouldn’t send . I just got a message in red saying that it was over 7,000 characters , and could not be sent . But private messaging accepted it ! With hind sight , I should just have sent it in 2 halves . But I wasn’t smart enough to think of that !

[smg1950 in reply to wedgewood]

thank you. I’m a bit distracted at moment trying to get GP on side but I have had my second private jab and have 4 to go for loading and organising jabs from Germany

Sue

[wedgewood in reply to smg1950]

When you have got your self-injections organised, and are familiar with the routine , you will honestly bless the day that you decided to do it .In the comfort of your own home. It is the best option .

No confrontations with your GP if you need more regular injections than dictated , and made to feel like a hypochondriac.

No expense of journeys to the surgery , which can cost more than your self-injection

No hanging around in a crowded surgery waiting room, catching bugs .

I have found that self injection is totally pain-free ,which I couldn’t always say about the surgery .

Good luck

[Sleepybunny]

Hi,

Have you considered joining and talking to PAS?

They offer support and can pass on useful info.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles and a page for health professionals that your GP may find helpful.

"but my GP will not give me B12 jabs "

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

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Some UK B12 documents

NICE CKS B12 deficiency and folate deficiency

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

BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)

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

BNF Hydroxocobalamin

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

Try to find the local B12 deficiency guidelines for your ICB (Integrated care Board) or Health Board.

CCGs (Clinical Commissioning Groups) were replaced by ICBs in July 2022.

Read this blog post if you want to know why I suggest finding out what's in the local B12 deficiency guidelines.

b12deficiency.info/gloucest...

Two useful B12 books

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

Martyn Hooper founded PAS (Pernicious Anaemia Society).

UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link in this reply.

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

Very comprehensive with lots of case studies.

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

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[smg1950 in reply to Sleepybunny]

thank you. I have tried joining PAS a few times and there is a problem with the site . I have emailed them

[Sleepybunny in reply to smg1950]

Here's a link to PAS membership page.

pernicious-anaemia-society....

Being a PAS member gives you full access to their leaflets/articles. Some can be accessed by non-members.

pernicious-anaemia-society....

If you have concerns about treatment, I suggest putting them in a short, polite letter to GP and maybe copied to practice manager and include evidence that backs up what you are saying eg test results, symptoms list, extracts from UK B12 documents.

The letter writing link in my other reply has letter templates which you could base your own letter on.

Whatever the cause of your B12 deficiency, your GP should be treating you.

There are other causes of B12 deficiency besides PA although with a positive IFA test and low B12, PA seems likely.

Have you been tested for coeliac disease?

More info on Coeliac UK website.

coeliac.org.uk/home/

What's your diet like?

Might be worth writing out a typical weekly diet, all food and drink and highlight any B12 rich food you are eating eg meat, fish, shellfish, dairy, eggs and foods fortified with B12. GP may have assumed that low B12 is due to diet even though you have a positive IFA test.

It's vital to get treatment for B12 deficiency from PA and other causes. Inadequate treatment increases the risk of developing permanent neurological damage and in some cases there may be damage to the spinal cord.

I developed dementia symptoms in my late 30s and had spinal symptoms although I thankfully avoided SACD, sub acute combined degeneration of the spinal cord.

PAS

Have a look at the symptoms lists below to see if your symptoms are consistent with B12 deficiency. Maybe fill out the PAS symptoms list, add any extra symptoms to bottom of list and include in any letter to GP or compile your own list. Make sure you include any neurological symptoms and definitely any that affect your spinal area.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

If GP continues to refuse to treat you, may be worth in letter asking about the risk of SACD, sub acute combined degeneration.

I'm not saying you have SACD, I'm not a health professional but I am saying that your GPs and any specialists you see should be aware that SACD is a potential consequence of B12 deficiency.

Sadly my experiences have led me to believe that there are many doctors out there who don't understand the severe consequences of B12 deficiency if treatment is delayed or inadequate.

PAS article SACD

pernicious-anaemia-society....

I note you are older than some on this forum and I do feel that older people sometimes have to deal with age prejudice when dealing with health professionals. Too often health issues can be put down to "getting older" when there may be a treatable condition.

You may have to challenge your GP (politely) and some of them don't like that....

Do you have someone supportive who you can take with you to appointments?

Even better if they have read about B12 deficiency.

Referrals

Sometimes the route to diagnosis of PA/B12 deficiency is via specialists but again there are specialists whose knowledge of B12 deficiency is very limited...I know because I met several ignorant ones.

NICE stands for National Institute of Health and Care Excellence

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE guidelines - when to refer B12 deficient patient to neurologist /haematologist /gastro- enterologist

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

GPs may be reluctant to refer due to cost. I used to put requests for referrals into a short, polite letter to GP, backed up with evidence supporting request eg symptoms list, extracts from B12 documents.

If GP remains reluctant to refer, you could ask them to write a letter to a local neurologist and/or haematologist asking for advice on how to treat you.

"Am paying for private"

If NHS GPs are sniffy about you getting injections privately you could point out politely (in a letter?) that you were put in that situation by their refusal to treat you.

I had to resort to treating myself when NHS refused to treat me.

"is high IFA always PA please"

If IFA test is done close to having a B12 injection, this can lead to in some cases to a false positive result. Doctors would usually leave up to two weeks after a B12 injection before testing IFA.

Hopefully PAS can tell you more.

If I've understood correctly, your IFA test was done privately. GPs often refuse to accept results of private tests. I would have thought they would repeat tests on NHS if private tests showed something significant and yours did... a positive IFA test.

Have you asked your GP to repeat IFA test?

Don't forget there needs to be a gap between B12 injection and IFA test to avoid risk of false positive result.

Lots more info in threads I linked to at bottom of my first reply.

[smg1950]

thank you. A lot to take in there. I am seeing a haematologist next Friday privately as NHS haematologist referred me straight to gastroenterology without seeing me. I may have problems but surely less money just trialling B12.