Advice Needed Please: Hi There I was... - Pernicious Anaemi...

Pernicious Anaemia Society

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Advice Needed Please

joleen19832
joleen19832

Hi There

I was diagnosed with PA back in March when I went to the Drs with dramatic hair loss and generally not feeling well. Dr done some blood tests and this came back with B12 102 (ng/l) and serum folate 10.4 (ug/l) with testing positive for gastric parietal antibodies but negative for intrinsic factor. Her action then was B12 injections six loading doses and every 3 months for life.

Now after having my loading injections end of March, then to every 3 months I went to the Drs few weeks ago to ask for more frequent injections than every 3 months as after about 8 weeks I start to feel not well again and start have symptoms of brain fog, poor toilet habits, cold hands and feet and generally not feeling myself at all. She said she would speak to the pharmacist!?! Now I went back yesterday and was told injections are to stop and she has prescribed oral B12 50mg to see how I go for six months. Now I argued saying if I had the parietal antibodies surely this won’t even do anything but set me back, she told me this is what pharmacist has said and will be the ongoing treatment as I don’t have positive intrinsic factor. I’m so confused and don’t think she knows what she is talking about, or am I wrong? I am not vegetarian and eat plenty of meat, eggs in my diet. Feel like I am not being listened to at all and want to fight this is I do have a case to fight

9 Replies

You have PA . You have to have B12 injections FOR LIFE ! For most PA patients injections are the only treatment . You are not strict vegetarian or vegan and you cannot absorb B12 through your stomach , and your doctor prescribes you tabltets !!! That does not make sense ! There are medical articles available for you to download and print out . Look in the pinned posts on this site . I’m sure that one of our knowledgeable members will give you precise details . Also if you are a member of PAS , you can phone the society and speak to someone there .They can intervene with your doctor , and help you in that way .

I had huge problems getting treatment too

and had to resort to self -injecting . ( its reasonably cheap) also a negative Intrinsic Factor Antibodies test result means nothing . It’s unreliable —- up to 60% of tested patients with PA test negative . It’s next to useless if the result is negative . You must be feeling desperate . You will get help here . I’m replying straight away , because I know how you must be feeling just for the lack of a very cheap vitamin . The medical profession has scant knowledge of PA . It’s truly scandalous. Best wishes .

Thank you so much, I actually felt like I was going mad with the dr! Literally arguing with her that she was wrong and she sat then Google’s a bit and said that’s the plan of action. I was flabbergasted that I go as I felt I needed more frequent injections to be told they are being stopped! Unbelievable!

I am a member of the PAS, luckily joined a few months ago. They have a meeting in west mids I was going to in fe weeks but I feel more confident now my dr is wrong and I’m right

clivealive
clivealiveForum Support

Are you in the U.K. joleen19832?

Yes I am in the UK

clivealive
clivealiveForum Support in reply to joleen19832

Then refer your doctor to the BNF (British National Formulary) - the doctor's Bible, either online or on her desk.

It is true that there are some advocating subligual replacement of B12 but if you have an absorption problem then they aren't the answer.

I see you are a member of PASoc. Well done - they will give you good and best advice.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well

Gambit62
Gambit62Administrator

Not really sure why the GP is taking advice from a pharmacist on what the treatment should be.

The pharmacist has probably looked at the licensed treatments for B12 deficiency in the UK - either IM injections - loading doses followed by 3 monthly (2 monthly if neurological symptoms) or 50mcg tablets. 50mcg tablets are the treatment for a dietary deficiency. It is useless if you have an absorption problem and fed that back.

The IFA test is so problematic that the BSCH standards refer to IFA-B negative PA - and PA isn't the only babsorption problem that requires treatment with injections and those injections are life-long.

Your GP needs to look at the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders

you can access them here

onlinelibrary.wiley.com/doi...

but your GP can access them through the BNF.

Put the relevant details in writing

a) 50mcg is the treatment for a dietary deficiency, not for an absorption problem

b) IFA coming back negative cannot be used to rule out PA - the sensitivity of the test is such that it gives false negatives 40-60% of the time (depending on the exact assay method)

c) treatment for IFA-B negative PA is injections for life - same as if test comes back positive.

If that doesn't get you anywhere then suggest you join and contact the PAS

pernicious-anaemia-society....

pernicious-anaemia-society....

joleen19832
joleen19832 in reply to Gambit62

When I asked for increased injections she said she would speak to the pharmacist!?! So I did think oh here we go..... am I right in thinking the parietal antibodies being positive does mean I do have PA? I will be speaking with the PAS tomorrow and hopefully the will give me all the information needed to sort this out,

Foggyme
FoggymeAdministrator

Hi joleen19832.

Well, we hear some terrible things here but a GP stopping treatment on the say so of a pharmacist must be a first! And of course, it's wrong.

And my goodness, your serum B12 was very very low when you were diagnosed! As you are not a vegan or vegetarian, it's likely that you B12 deficeny is caused by some sort of absorption problem - these are treated with B12 injections (50mcg tablets are not an appropriate or recommended treatment).

A couple of things...

>The parietal cell antibody test is no longer recommended as a test for PA

>the IF test is notoriously inaccurate. As others have said, 40%-60 of those with PA test negative, so a negative test does not (cannot) rule out PA.

>50mcg B12 tablets are only suitable for those with a dietary deficiency - that doesn't sound like you. And if three monthly injections do not keep your symptoms at bay, the these 50mcg oral supplements certainly will not.

>When neurolgical symptoms are present, a more intensive regime of B12 injections is required (continue with every other day injections after the loading doses. Not many GP's know about this (details of that in link to BNF below). Required to effect proper neurolgical repair and prevent potentially irreversible neurolgical damage (subacute degeneration of the spinal cord - which can also be caused by the under-treatment of B12 deficiency. It sounds like you are being under treated and do need more frequent injections (the neurogical regime).

> the fact that your symptoms are returning before your next injection is due is a sure indicator that you need more frequent injections.

> whether you have PA or not is a moot point. B12 deficient has many causes, not just PA...and the treatment is the same as for PA (injections if no dietary cause is present). And you could still have PA.

>once B12 injections have been commenced, serum B12 levels cannot be used to monitor the efficacy of treatment and manage ongoing treatment. GP should look at clinical symptoms, not serum B12 levels or the results of notoriously inaccurate IF test.

A good question to ask your GP - 'is the pharmacist aware of the flawed nature of the IF test and have they (and your GP) ruled out the following potential causes for your B12 deficiency...

>IBS

>Coeliac's disease

>Crohn's disease

>GI surgery

>Infection with heliobactor pylori (gastric bacteria)

>lack of B12 absorption due to medications (potential removable)

>infestetion with parasites

>Inborn errors of B12 metabolism

>Immune system disorders

>Bacterial overgrowth

>use of nitrous oxide (as anaesthetic or so-called recreational use)

And there are more...

Listing these because it shows that the pharmacist (and your GP) are basing the decision to withdraw treatment on an entirely false and nonsensical premise (i.e. that you don't have PA, that your deficiency is due to diet. and that there are no other abosprption issues that cause B12 deficiency).

So...suggest that, as you’re a member, you contact the PAS and ask them to intervene on your behalf OR...

Use the information in the following links as evidence to present to your GP and request not only the the re-instatement of treatment but also that you be treated according to the guidelines for those with neurolgical symptoms (every other day injections following the loading doses) - see BNF and BSCH guidelines below).

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes - Neurogical Regime third paragraph down - GPs don't often read that far so you may have to point it out).

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

ncbi.nlm.nih.gov/books/NBK2... (Gastric Autoimmunity: Heliobactor Pylori)

Looks like a lot of reading but we find that the only way to get reluctant GPs on board is to become knowledgable and present them with reliable evidence to support a treatment request. Often best to do this in writing and include supporting evidence on why you think you should be treated (i.e. according to the guidelines and in line with current thinking (rather than nonsensical notions based on lack of knowledge - though best not to put it like that to them 😉).

Good idea to put treatment appeal in writing and indicate that you have an appointment to discuss this with them on - include date - and ask if they can read the supporting evidence before your appointment so that you can make best use of the time, on the day. Also worth noting that anything you submit in writing becomes part of your medical records and that once they've actually read the guidelines etc., it becomes much more difficult for them to ignore what they should be doing 😉.

So...the pharmacist...utterly and entirely wrong...think if it was me, I'd be tempted to put in a complaint to whoever they work for (including evidence as to why they're mistaken) may 'encourage' the pharmacist to re-approach your GP with a different opinion...but who knows.

Finally...you are not going mad....just experiencing the madness that occurs when GPs (and pharmacists!) do not understand B12 deficiency, it's diagnosis and treatment.

Good luck joleen19832. Let us know how it goes and post again if you need more help.

👍

P.s. Note that you're planning to go to the PAS support group meeting in the West Midlands - me too, so will look out for you 👍.

joleen19832
joleen19832 in reply to Foggyme

Thank you so much, it will be good to educate myself further also so I have some idea what I’m talking about 😉. That way the dr might actually take on board what I’m saying and have this sorted. I initially went to the Drs with my hair loss and not feeling right which was ongoing for months. After my loading doses and feeling once again myself it helped me and my partner indicate how I felt and when indeed symptoms was returning. The brain fog was the hardest thing to describe it like oh you talking to me but nobodies home 😬

Yes I will be defiantly going to the meeting in a few weeks, not sure what to expect but it certainly would be nice to meet people and pick up some invaluable advice 😌

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