CA you get cured of PA?

[Tonyworks]

Hi, I was diagnosed with PA in 2002 using the schilling test, and have been having b12 injections every 3 months since. However my b12 was tested and found to be at the top end of the range so my doctor has stopped the injections. He says I may need to have some later on. Can PA get better and disappear? Is it usual to only need injections every 6 months or only when my b12 test gets low?

[Penni]

No, PA will not be cured. The same thing happened to me, my b12 injections were stopped for three years. They were only re-instated when I ended up in my local hospital. Six years on I still have perment damage caused from PA. Once you have it, you have it for life.

[Foggyme Administrator]

Hi Tonyworks

Your GP is wrong to stop your injections. In brief...

1) There is no cure for PA and treatment with B12 injections is for life.

2) Once treatment with injections has commenced, guidelines state (BSH guidelines in link below) there is no need for further testing of serum B12 levels - because levels should always be high (exception is if looking for continued low levels, in which case more frequent injections may be required to keep symptoms at bay).

3). Injections should never be withheld until B12 levels are low again.

I'm attaching some links with further information.

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

Suggest you highlight the relevant 'bits', return to your GP with the evidence and ask them to re-start your B12 injections.

It's a nonsense to wait until you become symptomatic again before giving you another injection - serum B12 levels do not accurately reflect symptoms - and you surely will begin to suffer if you do not receive regular injections. In addition, stopping injections for those with PA goes against all guidelines (BSH, NICE, BMJ, BNF, etc.).

Goodness only knows what your GP is playing at!

If your GP still refuses to reinstate your injections it's a good idea to write to the surgery and make a formal request (including the evidence from the links above), pointing out that stopping injections for those with PA is against all guidelines...and it's putting you at unnecessary risk of an increase in symptoms and potential neurological damage.

Good luck with your GP. Let us know how you get on and post again if you need more advice.

[clivealive Forum Support]

P.A. is for life not just for Christmas - I would go ballistic if my doctor told me I was "cured" after over 47 years without him/her having a clue what neuropathy I suffer in the run up to my next injection

I wish you well

[fbirder]

Your doctor is an idiot.

Would they say to a Type 1 diabetic - "Your blood sugar is now normal, so we can stop your insulin"? Of course not.

[Nackapan]

No. You need to go back to get your injections reinstated. You have a diagnosis of PA. Injections are for life. I was told that without a PA diagnosis. !!

That should be straight forward. Once in injections yoh do not need it testing. Means nothing

Are youh quite well at present on your regime?

If so stay well

[palmier]

Only 30 % if a 1000 mcg hydroxycobalamin injection is retained, which means it gives you on average 300/90 mcg a day, i.e. just over 3 mcg. This is slightly more than the generally recommended 2.4 mcg a day, but people with PA lose more than others because reabsorption from bile also needs intrinsic factor, so people with PA needs more than 2.4.

Your doctor is denying you something essential just because he can't do the maths. You don't get any more from your injections than he (if he doesn't have PA) gets from his food. You may even get less from your injections than he gets from his food. So why should he keep getting plenty of b12 from his food while denying you what you can't get from your food?

Sorry, it makes me upset when doctors who we're supposed to trust behave like that.

[waveylines]

Ignorant doctor whose decision will cause harm! Disgraceful!

If showing your doc the guidelines doesnt work then a formal letter to the practise manager with the guidelines enclosed, requesting your letter is put on your file is needed & asking for a written response withing two weeks may help them to focus!!

Doctors seem to get worse and worse at treating chronic conditions effectively, not just PA or B12 deficiency that Ive found Ive had to politely fight them every time......exhausting & depressing. They are so overwhelmed with their patients & ridiculous 10min window appointments that much is missed & dismissed as they rush onto their next patient. The art of doctoring is sadly dead.

[Cherylclaire Forum Support]

Sadly still no cure for Pernicious Anaemia. These injections are your only means of protecting yourself from getting worse.

So please do not allow yourself to become ill again, just so the GP can see that you have indeed become ill again. You can't always return to where you were. Why would s/he ask that of you ?

There is plenty of evidence for continuing treatment and absolutely none for stopping it.

You do not need to waste valuable energy educating your doctor - I think you need a GP that acknowledges this at least. It isn't a difficult discovery.

[Sleepybunny]

Hi,

PA requires lifelong treatment.

B12 injections should never be stopped for someone with PA.

The clue is in the name..."Pernicious" means deadly/fatal.

By stopping your injections, you may be at risk of suffering permanent neurological damage including problems with spinal cord. See links below.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

I'm assuming you're in the UK.

If not in UK, it's helpful to know which country you are in as treatment can vary from country to country.

Have you considered joining and talking directly to PAS (Pernicious Anaemia Society)?

I am sure they can pass on useful info to you.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Think there are currently about 15 PAS support groups in UK. May be one close to you.

Blog posts about how PAS can support PAS members whose injections have been stopped/reduced.

martynhooper.com/2016/09/23...

martynhooper.com/2018/12/23...

martynhooper.com/2018/05/08...

Blog post from B12 Deficiency Info website about help if injections stopped (UK info).

b12deficiency.info/blog/201...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

Local Guidelines

Some parts of UK are using out of date guidelines that don't match what is in the BSH Guidelines. I suggest tracking down the local guidelines on B12 deficiency for your part of UK and comparing them with BNF, BSH, NICE CKS etc.

There is a useful summary of mainly UK B12 documents in fourth pinned post on this forum.

B12 Awareness (US B12 website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Help for GP

1) PAS website has section for health professionals. It is free for them to join PAS as associate members.

pernicious-anaemia-society....

2) PAS website has section with useful documents

pernicious-anaemia-society....

eg

" An Update for Medical Professionals: Diagnosis and Treatment "

"Treatment is for life"

which you can print out for GP if you join PAS.

Useful Mayo Clinic article

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

1) Suggests no proof that oral B12 is as good as injections at treating B12 deficiency

2) Many current diagnostic tests eg serum b12, MMA, Active B12 (HoloTC), Homocysteine are not totally reliable

3) Successful B12 treatment should not be stopped

B12 books I found useful

"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.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I suggest putting your queries about treatment into a letter to GP and possibly copied to practice manager. Make sure anything you say is backed up by evidence in the body of the letter eg symptoms list, blood test results, relevant personal and family medical history, extracts from UK B12 documents/articles.

Letters may be more effective than passing on info verbally because

1) In UK, letters to GP are supposed to be filed with medical notes so are hopefully less likely to be ignored. I used to include a request in letters to file them with medical notes.

2) Letters avoid face to face confrontation and allow writer time to express themselves clearly...not always possible in a quick GP appointment.

3) If letter reaches GP before next appointment it gives them time to do their own research.

4) Keep copies of any letters written and have a copy on you at appointments in case GP has lost their copy. It's important to have a paper trail in case there is a need for future complaint.

Support

Do you have someone supportive who can go with you to appointments? Even better if they have read up about B12 deficiency/PA and are willing to speak up on your behalf.

You could ask to book a double appointment if you have a lot to discuss with GP.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

I am not medically trained.

I may add more to this reply so check back later.