I was diagnosed with low b12 in January 2019. I initially had the loading doses and was told I would need 3 monthly injections for life. The initial doses made me feel ill but after a couple of weeks I realised that I had a new lease of life, no heart palpatations, tingling, my sight wasnt blurred , I was alert , memory improved etc etc. I continued on 3 monthly last year but found symptoms returning before next dose was due. I had my last injection in February this year and am now being told I dont need them any more. Apparently the levels have changed where I live in East Riding of Yorkshire. So my most recent blood test showed a level of 170. No action required. I spoke to a GP about my symptoms and he ordered another fbc, which showed enlarged red cells. I bought and am taking b12 supplement , recommended dose 1 per day and I take 3 a day. They aren't helping at all. Gladly I have been contacted by the surgery and have a face to face go appointment in a couple of days. Fingers crossed they sort something out. Is it worth taking supplements if they aren't having any effect ?
Battling for B12: I was diagnosed with... - Pernicious Anaemi...
Battling for B12
Print this out - hey.nhs.uk/wp/wp-content/up...
It is the guidelines for management of people with a B12 deficiency. Follow the flowchart in Figure 1. You had low B12 and a 'definitive objective clinical response' - you got better when given B12 injections. That means you need "Lifelong treatment
as pernicious anaemia No need for further testing" Even if you test negative for Intrinsic Factor antibodies you get the same treatment.
Having shown them that their own guidelines are that you have treatment for life (with no further testing) you need to persuade them to treat you properly. They probably do not know that the guidelines for B12 injections were changed two years ago. Where it used to say 'injections every three months' it now says 'injections every two to three months'. So they have no excuse not to change you to injections every 8 weeks.
Thank you for the reply. Ive also started my list of symptoms even though i dont know if they are related to B12 . On their own, each symptom seems minor, other than me now being referred to the eye hospital as now losing right hand sight in both eyes ( something to do with how the left brain receives messages ) but together they make me feel Im just existing between sleep. I will print that document and take it along. Im hopeful as face to face appointments are virtually unknown around here.
Hi,
Have you considered joining PAS who can offer support and info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
You do not need a confirmed diagnosis of PA to join PAS.
Unhappy with Treatment (UK info)?
Writing letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs and devolved representatives may be worth talking to if struggling to get treatment.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
Useful B12 book
"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 info in book is out of date. See BNF link for up to date info.
More B12 info in my replies on the the thread below eg symptoms, causes, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
healthunlocked.com/pasoc/po.....
I am not medically trained.
Thank you for all this detailed information. I started reading through some of it yesterday and visited PAS. My list of symptoms has now increased 😯. I've taken some notes and feel I'm ready for my appt this afternoon.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Quite a few on forum also have thyroid issues. Suggest you put any thyroid results on Thyroid UK forum on HU.
Thyroid tests
thyroiduk.org/getting-a-dia...
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...
3) Best piece of advice I ever got was to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
nhs.uk/using-the-nhs/about-...
If you have queries about B12 deficiency diagnosis/treatment I suggest you consider putting them in a letter to GP. My understanding is that letters to GP are supposed to be filed with medical notes so are hopefully less likely to be ignored. See letter writing link in my other reply.
Local Guidelines
CCGs and Health boards in UK are likely to have their own local guidelines on treating B12 deficiency. These local guidelines can be out of date and may vary from what is in BSH Cobalamin and Folate Guidelines.
I suggest you get hold of a copy of local B12 deficiency guidelines for your CCG/Health Board and compare it with BSH/BNF links in my other post and with NICE CKS link below.
NICE CKS
cks.nice.org.uk/anaemia-b12...
Were you ever tested for PA?
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
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.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK.
Coeliac disease?
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H pylori infection?
patient.info/digestive-heal...
NICE guidelines H pylori
pathways.nice.org.uk/pathwa...
Click on blue boxes in flowchart for more info.
Diet
Do you eat a b12 rich diet eg meat, fish, eggs, dairy, foods fortified with B12?
If yes to B12 rich diet then any B12 deficiency is more likely to be due to absorption problem in gut eg PA/Coeliac/H Pylori and others.
May be worth writing out typical weekly diet, food and drinks for GP.
Parasites
Has GP excluded possibility of internal parasites eg fish tapeworm?
Search online for " B12 deficiency parasites" for more info.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
There are many B12 symptoms that we recognise and often talk about on this
that are often virtually unheard of by GPs. Sometimes we only find out what our range of symptoms are when, after loading, something improves that we'd ignored for years !
I remember thinking "why haven't they heard all this a thousand times before ? " when talking to GPs or consultants. It makes you start to doubt yourself. After all, they are the experts, aren't they ? Well, yes, I thought this, until a neurologist told me he didn't know much about B12 deficiency.
I wrote out a list of all my symptoms, however weird or trivial, with a brief explanation of each. You are right, some of them seem not worth the mention or likely to be dismissed or attributed to "something else", but this was scanned by a haematologist and put in notes. Who knows - it may have made them take me more seriously, or it may be used as an example of the ramblings of a madwoman. It may make them recognise similarities with earlier/ later patients. I've nothing to hide.
You have a lower level of B12, and enlarged red blood cells. B12 supplements aren't working for you. Your GP should be saying, at your appointment, that stopping your injections was detrimental, that an injection every 3 months is insufficient for some patients, and that s/he is reinstating your injections initially as reloading dose. If you have neurological symptoms (tingling was mentioned) then this should continue until no more improvement can be gained from this frequency, then reduced to, as fbirder says, every 2 months. If you find that you again start to lose any gains, go back again.
I had an initial serum B12 level of 196 ng/L with a local range starting at 197 ng/L. I was deteriorating on an injection every 3 months and was found to have raised MMA. I had reloading injections at 2 a week for 6 months.
I also had low folate, low ferritin and osteoporosis of the spine- so vitamin D tablets prescribed and 3 months of folic acid and iron. Get these checked too - not everything is on an FBC - and thyroid as well, which can struggle. For a thorough thyroid check including autoimmune thyroid conditions, it might be wise to have a private postal blood check done. I think a full panel thyroid check from a reputable company of 6 tests costs around £60.
It is easy to forget what existing felt like: I have my symptoms list to remind me. It can improve. It does. B12 is what makes the difference. You will find a frequency eventually that works for you as an individual: by working, I mean not having to deteriorate beforehand and being as symptom-free as you are able.
Sleepybunny has given you some useful links - try and read up a bit so you can go to your GP feeling prepared.
B12 injections should be seen as a means of doing more than existing; they should allow you to get, as far as is humanly possible, your old self back - and keeping it.
Restitution.
Thanks for the reply. I've had lots of blood tests before the final FBC but I now need to ask questions about them. Thyroid problems are in my family as well as low b12. I've put a list of questions together to ask today.
Wishing you luck today, and glad you are well-prepared. Let's hope for a good and more informed response from your GP today.
Hi,
Fingers crossed that your appointment goes well today.
I hope you'll be able to update the forum on how it went.
Well.....it was a long and thorough examination. This gp said I was informed wrongly. I didnt have enlarged blood cells, I have too many, making thick blood. He noted all my symptoms and recorded them on my file. He has now referred me to haematology, heart specialist and made an appointment for me to have a CT scan. He insisted 170 was an ok measure of B12. So while I am pleased he is referring me to specialists I am booking myself into a private clinic for B12 injection this week. Its well worth yhe £27 to feel better
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