Can anyone point me the direction of where it tells my doctor what treatment I should of received following my low b12 result please in the uk?
I was told my level was 116 (I was told this was just a bit low) but I have no idea out of what level it should be etc.
The doc told me because I wasn’t pernicious anaemia so I didn’t need loading injections. I explained I take a b12 100% dose tablet supplement everyday. I also eat a balanced diet. I asked why my body wasn’t absorbing it. The response was no idea. I’ve started 3 monthly injections.
Three days later, the doctor’s receptionist called and I find out I wasn’t tested to see if I was pernicious anaemic and they wanted to do bloods to test for the instr. factor. Since my booster I’ve felt a clarity in the brain fog but I’m still being so forgetful and reversing processes in simple tasks I do. So there is definitely neurological things going on. I don’t think my doctor knows what he’s doing with this.
I’m in the UK and have lots of questions about this.
At what level should daily loading doses be given in the uk? Are they only given if diagnosed with PA? At what level can neurological things go wrong? What level is classed as dangerous or low?
Any help to clarify things so I can go to my doctor and show him and show him where it says will help me get the right treatment. Thank you
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It should not be "overwhelming" to your doctor - all he has to do is look up the British National Formulary (BNF) guidelines on the treatment of Pernicious Anaemia/B12 deficiency and he will know what treatment to give.
Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.
The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.
Have a look at this detailed reply I wrote on another thread recently. It has links to B12 articles, UK B12 documents, B12 book lists, B12 websites etc.
You asked the correct question - "Why am I not absorbing B12?"
The doctor should have answered - "I don't know, but I'll assume it is Pernicious Anaemia and I shall treat it as such." Then started you on a course of loading doses.
Write to doctor and ask why you're not being treated for Pernicious Anaemia as thta is the most likely cause of your deficiency.
I’m speaking to my doctor tomorrow but it was said that they can’t treat it as PA unless it’s diagnosed. I’ve had the bloods done now and have to wait three weeks for the results. I was told the docs are not licensed in the UK to do daily injections without a definite diagnosis of PA.
"was told the docs are not licensed in the UK to do daily injections without a definite diagnosis of PA. "
GPs may not be licensed to do daily injections but they are licensed to give every other day injections if neuro symptoms present.
In UK, GPs can also prescribe off license if they feel that it is in the patient's clinical interest although many are reluctant to do so for fear of being sanctioned.
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK.
Is your GP aware that it is possible to have Antibody Negative PA and that Intrinsic factor Antibody test for diagnosing PA is unreliable sometimes?
If you look at bottom right of flowchart it suggests that doctors should consider continuing B12 treatment even if IFA test and other tests such as MMA, Homocysteine and Active B12 are negative if patient has responded clinically ( meaning their symptoms have improved).
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
My understanding of the BSH Cobalamin and Folate Guidelines is that anyone who has B12 deficiency (of any cause, not just PA) with neurological symptoms should be on every other day loading jabs of B12 for as long as symptoms continue to get better then a jab every 2 months.
There is no time limit on these every other day loading jabs for those with neuro symptoms; if improvement in symptoms continues so should the every other day jabs.
BSH guidelines suggest possibility of a review of loading jabs after three weeks.
If you get Coeliac tests, GP will probably ask you to ensure you are eating plenty of gluten in more than one meal per day for several weeks before blood taken.
Some GPs forget to do this.
This is to ensure that there are plenty of antibodies to gluten in the blood.
Some patients with Coeliac may test negative on tTG IgA test if tehy have not been eating enough gluten prior to test.
Some forum members have reported benefits from going gluten free even if they are not Coeliac .
If gut issues present, have you been referred to a gastro enterologist? Gastro specialist should be able to spot signs of gut damage due to PA, Coeliac, H pylori and other gut conditions that may affect B12 absorption.
More info on that other thread I posted a link to.
This is brilliant. Thank you for your time in sending it to me. I was ploughing through sone of this last night and yes I have got brain neurological issues. I’ll make the doc aware later. It’s been hard because I’m going through menopause too and everyone has been telling me everything is due to that! But no I now believe it’s due to b12. It’s easy just because I’m in my 40’s to fob everything off saying it’s age. I’m on a mission to get as fixed as I can.
This group is fabulous and you may of all just helped change my life just by a bit of knowledge and the right care
From what you say I suspect your GP is one of the (sadly) many who lack understanding of PA, and B12 deficiency in general so probably a good idea to seek extra support from PAS.
They can suggest useful info to pass to your GP.
PAS membership costs about £20 for a year's basic membership.
Is there a local PAS support group close to you?
See link to PAS support groups in my other post. There are currently 15 in UK.
These can be a useful source of info on helpful GPs and good for emotional support.
If you live within reach of Durham, B12d.org holds support meetings near Durham.
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.
4) You may have the misfortune to be in one of the areas of UK whose local guidelines on treatment of B12 deficiency are out of date.
I suggest tracking down local area NHS guidelines on treating B12 deficiency and comparing them to national guidelines eg BSH, BNF, NICE CKS. It could be that your GP is being constrained by local guidelines.
As you mention neuro symptoms, have you been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link suggests GPs should seek advice from a haematologist for those who have B12 deficiency with neuro symptoms. Has your GP done this?
Don't expect wonders though as ignorance about B12 deficiency exists among specialists as well as among GPs. I just hope you are lucky and get one who understands B12 deficiency.
I think it is sometimes more effective to put queries about treatment/diagnosis into a letter to GP.
In UK it's my understanding that letters to GPs are filed with medical notes so hopefully are less likely to be ignored than info passed on verbally or on photocopies. Letters also avoid face to face confrontation and if they reach GP before an appointment can give GP a chance to do their own research.
Can also be useful to follow up an appointment with a letter.
Letters could contain symptoms list, test results, relevant family and personal medical history, extracts from relevant UK documents, referral requests etc.
Keep any letters polite and as brief as possible and always keep own copies.
Writing letters may irritate some GPs but I gave up worrying about this when I realised I was headed for spinal damage and dementia if I didn't get treatment.
"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.
Link about "What to do next" if B12 deficiency suspected
Some forum members resort to self treatment if they are unable to get adequate treatment. Personally I see this as an absolute last resort and only did it myself when I had exhausted every possibility of NHS treatment.
This is in gas and air mix used as pain relief in labour. Nitrous oxide is also used as part of anaesthesia in some operations and medical procedures. Nitrous oxide inactivates B12 in the blood and it can take time to build up levels after again after exposure to it.
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell (WBC). Eosinophil result can be seen on results for Full Blood Count (FBC) tests.
Are you on any medication that may affect levels of B12 and/or folate?
I'm aware that metformin, a diabetes drug. has been associated with B12 deficiency and some anti epileptic drugs(also used for migraine and pain relief) such as gabapentin have also been associated with low B12 and low folate in some studies.
There are other drugs that have been linked with low B12 levels. Any concerns over medication should be discussed with GP or specialist. Pharmacists may also be a good source of info.
More about SACD, sub acute combined degeneration of the spinal cord
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
"At what level can neurological things go wrong? What level is classed as dangerous or low? "
I had many typical symptoms (over 40) affecting multiple body systems and including many neurological symptoms with most b12 results 300 - 500 ng/L ;well within normal range.
Many GPs and specialists do not appear to realise that it is possible to have severe B12 deficiency with results that are well within normal range.
It is possible to have Functional B12 Deficiency. This is where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells.
Functional B12 Deficiency is mentioned in this next link.
"told my level was 116 (I was told this was just a bit low) "
If you mean 116 ng/L that is really low. I'll be surprised if you're still walking at that level.
Sometimes tests can use pmol/L which is a different unit of measurement.
Different areas of UK will have different reference ranges.
A typical range for serum B12 would be 180 - 900 ng/L.
BSH guidelines suggest treating patients whose level is under 200ng and anyone who is symptomatic with a level above 200 ng.
From your GPs comment I suspect you are living in one of the areas of UK that has a really low reference range for B12 or your GP is lacking in expertise with b12 deficiency.
See these blog posts about UK areas with really low reference ranges.
Interesting comments below post and some are very sad.
Many UK GP surgeries have online access to a summary of results/records. Look on your GP surgery website for Patients Access/Online Access/Emis Access.
My understanding is that you can also request access to paper files.
Worth looking up GDPR legislation which came into force I think in 2018.
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