After a fight I managed to get my B12 injections moved from 3 monthly intervals to two months. I book appointments at the 8 week mark. The surgery do it by the month, so if I have an injection on 01 April then they consider I'm not due until 01 June [8 weeks & 5 days] - they always say "...and too much B12 can be dangerous!".
I'm having blood taken tomorrow before my B12 and I think they are angling to either reduce the frequency of my B12 or stop it altogether as the GP said that the blood test I had in 2019 or 2020 [I can't remember what he said] indicated my B12 levels were above normal levels. When I protested that I considered I did need injections every 8 weeks and listed my symptoms he intimated this could be the placebo effect!
What sort of blood tests should they be running? I will ask them tomorrow but they do tend to fob you off particularly when you're at a low ebb.
Can I suddenly be 'better' so I no longer need B12 injections?
I certainly don't feel it - in fact it's usually others who ask if I'm due my B12 as my speech goes, word retrieval, concentration etc.
Will post update after my B12 when I'm more focussed
Thanks
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Hi NackapanThanks so much for your reply. I am going to collect my prescription shortly and then do battle with the nurse. I'm going to revisit my medical notes tomorrow as my brain is a tad fuzzy at the moment. I tried looking at my last test results but they don't align with what the GP said in his phone call last week when he told me my B12 levels were too high. They won't give me the B12 today until AFTER I've had bloods taken. I am going to ask exactly WHAT tests they intend doing and I have the link found on here from NHS website explaining about inactive and active B12 - which I need to look at again....
NICE : National Institute for Health and Care Excellence (cks.nice.org.uk)
BNF: British National Formulary
BCSH: British Committee for Standards in Haematology : guidelines for the diagnosis and treatment of cobalamin and folate disorders (Wiley Online Library)
I am quite sure that it is a complete waste of NHS money to use serum B12 testing as proof of recovery from an as-yet unknown condition initially causing your B12 to drop below range. To do that, you have to first exhaust emergency B12 storage from your liver, which takes several years. Far better that they use their time in trying to find out what caused this problem. Difficult enough, but they could start by asking about your family history or perhaps your diet.
I say difficult, because patients who have pernicious anaemia are only 40-60% likely to get a positive result from an intrinsic factor antibody test - which is the one usually used. Whether your GP is aware of that or not, it is clear in medical guidelines that pernicious anaemia is not able to be ruled out by such a test as it as possible for those with PA to be PA (IFab neg). Pernicious anaemia is a lifelong condition, which can be managed by B12 injections - but not cured by them.
Martyn Hooper, founder of the Pernicious Anaemia Society , had three tests before getting a positive result. Which is just as well, since a positive result is 95% accurate- as good a confirmation as it is possible to get.
If the practice are determined to stop your treatment, perhaps you should be asking the questions, and not trying to prove anything :
You were B12 deficient: What do they believe caused it ?
You were B12 deficient: What do they believe cured it ?
Read what the medical guidelines have to say about cobalamin (B12) deficiency.
Thanks for the comprehensive response Cherylclaire
When the nurse started on 'too much B12 is dangerous' today I asked her to explain why/how. No response. She said my last results said I had high B12 and I asked if this was active and non-active and she didn't know and admitted so. I said I would send the link to the NHS website [from this site] which explains it. She didn't know if the blood test would show active/non-active B12 TBH I think she'd never heard of the term.
2006 was when it all started and in July 2012 blood taken to test for intrinsic factor [can't see the results on my medical file] and then in 2013 they discovered my B12 levels were on the floor - I had I think daily injections then weekly and then three monthly.
In 2018 after reference to this site I shared the NICE guidelines and asked to be moved to 2-monthly. Apparently my last blood test in Feb 2020 came back with an abnormal Serum Vitamin B12 result 1197 ng/L - so now they have taken bloods again with a view to reducing me to 3-monthly injections despite my flagging how wretched I become when due my next dose. As I said in the original post - the GP went down the placebo route and clearly thinks the symptoms are in my mind.
My father had PA and was on monthly injections [although he was older when he was diagnosed]. I have a good diet although I keep myself on a gluten free diet as wheat aggravates my stomach and makes my arthritis [fingers] very painful.
So it's on record I have B12 deficiency [I think somewhere they referenced PA] but they think I only need 3 monthly injections!
I will ask the specific questions you have laid out - thank you - via email so there's a record.
I imagine that any blood test result over about 800 ng/L would be above most ranges.
Mine, because I self-inject frequently in order to control symptoms (and stop myself going back to square 1: never want to be stuck there again ), are always over the measurable quantity (above 2000 ng/L). I am not able to function well otherwise and still have residual problems. None of my problems stem from too much B12- quite the opposite - and as far as I'm aware, there is no research anywhere that can back up the statement "too much B12 can be dangerous."
I was once told this too- by a haematologist. I asked three times for some evidence which prompted a change of subject each time.
There is, however, evidence that B12 in huge amounts is used effectively in hospitals as an anti-toxin - which is what your nurse will find when she Googles "B12 and toxicity" -as my nurse did, when told to give me injections twice a week by my GP ! She was fine after that, although other nurses were not so keen. Who can blame them for thinking that way if they are taught that one injection every 3 months is enough ?
Stichting B12 Tekort has useful evidence about lack of toxicity if needed.
An Adult Inherited Metabolic Diseases consultant told me that, when they reported back to GPs that a patient would need injections twice a week because of a genetic disorder, some of the GPs refused to treat at that frequency ! They had studied DNA to discover the problem, only to find the solution refused.
Disheartening for consultant, devastating for patient.
Serum B12 test will measure both active (holotranscobalamin) and inactive (holohaptocorrin) B12. The Holotranscobalamin (holoTC) test measures only your active B12.
These tests are both only measuring what is in your bloodstream and cannot tell you if B12 is being effective at cell/tissue level. But that's for the Metabolic Diseases experts to discover. And even they, it seems, have trouble getting doctors to listen !
Wishing you luck. You deserve some: 2006 was a long time ago !
Thanks so much Cherylclaire - I think I will have to go down the SI route while they mess around deciding what's what - the 3-month thing doesn't work for me, I go downhill quite rapidly and it's concerning that the GP thinks a placebo would work just as well. I suspect they'll just cut my supply back to 3 month rather than doing any proper investigation. I'll report back with any developments. My GP is on leave now and the results take about a week to come through but they're incomprehensible to a layperson so I'll have to book a telcon with the GP to talk me through them.Thanks again.
Above link outlines treatment for cyanide poisoning which involves 5g doses of hydroxycobalamin being given by infusion.
5g is 5000 times as much B12 as in the standard 1mg hydroxycobalamin in an IM injection.
Links below are to threads where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Wow! Thanks Sleepybunny. I'll read through all the links tomorrow. I've started to have a look but my brain's not up to it at the moment. I'll join PA too. Hope dinner went well?
I made blackberry and apple crumble with fresh picked blackberries.....
Good luck with getting the treatment you need.
"When I protested that I considered I did need injections every 8 weeks and listed my symptoms he intimated this could be the placebo effect!"
Might be worth keeping a daily symptoms diary that tracks changes in symptoms over time and if and when any treatment is received. Could be useful evidence of improvement or deterioration in symptoms to show GP/specialist.
If you have neuro symptoms, have you been referred to
1) a neurologist?
2) a haematologist
There is always hope that a specialist will have better understanding of B12 deficiency than your GP but don't count on it.....I met a lot of ignorance about B12 deficiency from specialists.
NICE CKS link further down reply suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms present. If GP won't refer you, perhaps you could ask them to write a letter to local haematologist for advice on treatment.
Does your GP have a list of all your neuro symptoms?
Do you have balance issues, unusual gait (way of walking), problems with proprioception (awareness of body in space), any symptoms affecting your spinal area?
Untreated or under treated B12 deficiency can lead to an increased risk of permanent neurological damage including damage to the spinal cord.
May be worth discussing any concerns over this in any letter/conversation with GP as may help to concentrate their minds.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend you track down the local guidelines for your CCG/Health Board and compare them with BSH, BNF and NICE CKS links above.
Search forum posts for "local guidelines" as some have been posted on forum or try an internet search or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy of local B12 deficiency guidelines.
Good to know what you are up against locally as some local guidelines differ significantly from BSH, BNF, NICE CKS guidance.
Hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for treatment of B12 deficiency.
Thank you. The crumble sounds nice. I have a lot of reading to do it seems. I was just plodding on as you do but I obviously need to get uber organised and keep a diary and track my symptoms and compose a non-threatening, assertive letter to the GP ahead of our telephone consultation. I've made a DSAR [Data Subject Access Request] for my medical records [I have my medical record up until 2 years ago but the entries are usually not decipherable for the layperson] - just another thing to add to my 'to do' list and that's the issue - when you're already tired - to have to do the GP's research and battle for an injection that costs pennies. I could do without it but will press on with everyone's help and report back in a few weeks. Thanks
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive IFAb test result/letter from specialist confirming diagnosis/test results showing low b12 etc keep a copy in a safe place.
I'm in England and process may vary in other countries of UK.
Apologies about throwing so much info at you but I feel that I would not have suffered for so many years if I had had all the info I have now, years ago.
I hate to think about others struggling.
"another thing to add to my 'to do' list and that's the issue - when you're already tired - to have to do the GP's research and battle for an injection that costs pennies"
I battled for years, had folders of correspondence, but in the end when all avenues of NHS treatment ended I was forced to treat myself...I feel personally that self treatment is a last resort but some have no other option. I did eventually get some NHS treatment from a more understanding GP practice but suspect I have some permanent damage.
I felt battling the first set of GPs was worth it in the hope it might help someone else even if I couldn't get treatment.
A thought for the future
Some people join PPGs (Patient Participation Groups) for their GP practice. Not sure how these are operating in pandemic. details should be on your GP practice website or on CCG website.
It is also possible for people to submit questions to CCG meetings. Contact your CCG if interested.
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