Hi all thank you for all of your advice so far. I’m feeling much less alone now!
My GP will not resume my B12 injections because my blood tests were within the normal range for B12 and folate, even though I’ve explained about my fatigue, tingling hands and feet, sore tongue, restless legs etc. He has referred me to a neurologist to make sure there’s nothing else going on.
Can I ask what you recommend I say to my neurologist and also what sort of tests is he likely to do?
Thanks very much
He should look at your b12 levels, along with various other blood tests. You will prod you, poke you and see if you can stand up properly. He will probably order nerve conduction tests.
I've been seem by 3 different neurologists. I've not had nerve testing. One checked my reflexes
One ordered another MRI scan and prescribed propranolol (I dudnr have)
One thought amitriptyline
Hi,
Link about writing a letter to GP/specialist if under treated for B12 deficiency with neuro symptoms.
b12deficiency.info/b12-writ...
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.
healthunlocked.com/pasoc/po...
Many UK forum members have reported injections being stopped/delayed
/frequency reduced or swapped for oral tablets due to impact of pandemic.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.
healthunlocked.com/pasoc/po.....
Some forum members feel their only option is to self treat. My personal opinion is that this is a last resort but I was driven to it when unable to get any B12 treatment several years ago.
I am not medically trained.
Same here..looks to me like we've BECOME medically trained, thru experience..cannot get a doctor to listen..tried 5 different doctors and finally gave up on them..sad..
Ref the first link youve put above, do you know what to click on, within the NICE link that is within the suggested text, to find that 9.1.2 guideline? When I clicked on it it brought a menu up with loads of links and I'm baffled where to go from there?
Hi,
This link brings up the same info that is in BNF book Chapter 9 Section 1.2 although I don't think it states it is from BNF Chapter 9 Section 1.2
BNF
bnf.nice.org.uk/drug/hydrox...
If face to face with UK GP/specialist, a patient could ask them politely to check their copy of BNF. They will have a copy somewhere within reach.
My preference was always to take someone with me to any face to face appointments but I rarely had anyone willing to do so. Useful to have another set of ears listening to what was said/taking notes.
My impression was that GPs and specialists were likely to be kinder if a witness was present. Sadly I guess this may not be possible during pandemic.
Also possible to get own copy of BNF book from a popular online retailer.
BNF guidance on treating b12 deficiency changed a year or so ago and now allows for maintenance injections to be given every 2 months whether or not neuro symptoms are present
pernicious-anaemia-society....
The BNF info is also referred to in BSH Cobalamin and Folate Guidelines (not sure which page)
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
and I think again in NICE Clinical Knowledge Summary
NICE CKS
cks.nice.org.uk/anaemia-b12...
Be prepared .......
1) for the possibility that even specialists such as neurologists may misinterpret what is in the BNF guidance.
For example some UK forum members have been refused treatment for B12 deficiency because they don't have macrocytosis (enlarged red blood cells).
The BNF indicates that treatment with hydroxycobalamin for B12 deficiency is for the prophylaxis of macrocytic anaemia. Prophylaxis means for the prevention of....so treatment with hydroxycobalamin is to prevent macrocytic anaemia happening.
definition of prophylaxis
dictionary.cambridge.org/di...
2) that some GPs and specialists may find it difficult to cope with assertive patients so relationship between patient and doctor may become strained.
I think it's worth trying to anticipate some reasons that neurologist may refuse to support injections more often and have the info ready to argue (politely) against their reasons for refusing.
After appointments that were challenging, I sometimes put my queries over what was said into a brief, polite letter to GP/specialist and sometimes I pointed out politely possible consequences/benefits of their actions (or inaction).
3) Might be worth asking about the risk of SACD if you are not given recommended level of treatment, especially if you already have neurological symptoms.
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.... See page 2 of PAS articles/leaflets
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
4) If appointment is face to face, you could ask neurologist to check your balance and proprioception sense.
Proprioception is a person's awareness of their body in space. Proprioception problems can be associated with B12 deficiency.
Two tests that help to check proprioception are
a) Romberg test
b) Walking heel to toe with eyes closed.
A person with proprioception problems is likely to show poor balance during above tests therefore it is vital that they are carried out only by a doctor at medical premises.
There are other proprioception tests. If patient is not asked to do any neurological tests with eyes closed, I would query as to whether proprioception sense has been fully tested.
Videos of these tests on You Tube.
If appointment is over the phone/skype etc then might be worth asking for/booking another appointment when face to face appointments are possible.
5) Areas of UK eg different CCGs / Health Boards often have their own local guidelines on B12 treatment. These local guidelines often vary from the treatment info in BNF, NICE CKS, BSH Cobalamin and Folate Guidelines. Some GPs /specialists may have restraints on what treatment they can prescribe due to these local guidelines.
If a doctor says they can't prescribe a pattern of treatment because it is not in the guidelines, a patient could
a) ask which guidelines they are referring to and then check what those guidelines say as some doctors may misunderstand what guidelines say
b) point out politely that a doctor is allowed to prescribe medicines outside the terms of the medicine's UK licence if they feel it is in the patient's best interests. See link below.
gmc-uk.org/ethical-guidance...
Doctors may be worried about potential sanctions if they don't stick to the guidelines in their area.
Letters to GPs/specialists
I sometimes wrote letters to ensure that it was on record that I had concerns and to ensure there was a paper trail in case I made a formal complaint in future about lack of treatment.
Letters avoid face to face confrontation.
In UK my understanding is that letters to GPs (and specialists) are supposed to be filed with medical notes. To make extra sure that my letters were filed, I included a request in the letter that a copy was filed with my medical notes.
Always keep copies of anything sent and any replies received as may be useful evidence at some point.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
May be worth talking to MPs and devolved representatives in Scotland, Wales, NI if not getting recommended level of treatment in BNF guidance.
I may add more so check back tomorrow.
Thank you so much for all of your helpful advice and links.
I feel better prepared and will do my homework thoroughly before I go to Neurologist. Best wishes
Hi,
When you go to the neurologist you could leave a written request with reception/neurologist's personal assistant and repeat to neurologist that you would like to be sent copies of any reports/test results/letters to GPs etc.
I deeply regret not asking for copies of reports/letters sent to my GPs by some of the neurologists I saw.
As they seemed to have me written off as a neurotic hypochondriac, it's probably just as well.
Please find a doctor that will check your INTRINSIC FACTOR..that's in your gut..we can all have plenty of B12 floating around in our bodies, but cannot absorb it without intrinsic factor...hence the deficiency..doctors do NOT listen..never will..stand up for yourself and don't take no for an answer...they will run every un-necessary test for a year...get your intrinsic factor checked FIRST..that will tell you if you have a deficiency..good luck dear..
After discussing with you and the manual/ observational tests, s/he could have the following checks done, depending on what the problem/s appears to be :
MRI of spine, brain or both - looking for demyelination (spine) or lesions (brain).
Electric nerve testing - usually arms and legs. Looking for how well main nerves are working by using electric current (but does not check smaller nerves).
I have had brain MRI (okay) because of cognitive and memory problems, and nerve testing because of tingling and numbness in feet, shins (okay too) - not painful, just unnerving !
I think these are the usual tests, but there are probably more depending on symptoms and results. Smaller nerves can be checked if necessary - but procedure quite painful, I've heard.
B12 and folate:
Initially my B12 was just below range (196 ng/L with range starting at 197 ng/L)
Folate and ferritin never out of range but low enough to cause additional problems:
folate at lowest 5.5 ug/L (range 4.6-18.7)
ferritin at 36ug/L (range 13-150)
Might be worth asking for printout of your results to see where they are heading for yourself, assuming they were checked previously (?)
I still have a burning tongue every day- despite self injecting every three days. Waiting for an appointment with Oral Medicine consultant.
Doubt that your GP will find other causes to explain away all your symptoms, neurological or otherwise, since you are both aware that these are returning symptoms due to withholding treatment for an existing condition.
He must know what you presented with initially, so it's no big leap.
What a waste of money and energy all this has become.
Very best of luck.
Thanks very much for this. All useful stuff for my preparation
Grateful!! A Neurologist worth keeping! 
Private blood test results - GP app booked, what can I say?
Neurologist appointment 
Shall I start taking 1000mcg lozenges, or should I give it a bit longer? 
