After a year of undiagnosed neurological symptoms (bad tinnitus/numb hands/neck ache/tingling feet/weird electrical type vibrations ) was given antidepressants! Despite arguing that I am an optimistic person with no worries and a happy life except That I knew the ‘right button needed pressing’ as something was oddly wrong with me!
I continued with a booked holiday to New Zealand and eventually out of desperation saw GP there who diagnosed low B12 and started me on a course of B12 injections.
On returning I wrote to my GP here (as lockdown was now on place) and offering to self inject was given 2 weeks loading doses B12. I wrote again asking for repeat prescription as symptoms were not resolved but I felt positive that I was on the right course.
Reply from GP
‘NICE guidance suggests loading doses is for B12 deficiency ANAEMIA with neurological symptoms. Your haemoglobin is normal meaning you are not anaemic and your B12 level is only borderline. Therefore continued loading doses not recommended in your case’.
I expect many of you have had similar replies from your GP. I am now confused.
Should I now source B12 and inject myself or should I wait and see if symptoms continue to subside or ask for a Neurologist Opinion!
Thank you!
Written by
CoolGilly
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Both I think . You dont want to decline. I had a telephone consult with a neurologist. He wanted mr to keep up b12 levels and to self inject.
The gp blocked I ejecting at home . I do get my injections at the surgery at present. Also have bought my own. No way am I going back to that very dark place bedbound.
Thank you ... I can’t understand why GP doesn’t consider my neurological symptoms over whether I have anaemia or not. Intrinsic factor test highly unreliable and anyway Neuro problems often present before haemoglobin problems!! I have ordered from Germany! Does your GP know you have bought your own B12 injections?
Been such a fight ti get treatment at a more regular frequency and I'm sure they would just stop it if they know. I want it to be in my medical notes 2vweekly for the last year. . My intention was to try weekly for a while but it didnt seem to help. Also incase injections suddenly stopped as the have been changed quite alot as one nurse down. Wont let me do IM at home either. My gp agreed to sc at home but another gp blocked it despite a letter sanctioning going off licence.
"Your haemoglobin is normal meaning you are not anaemic and your B12 level is only borderline"
If this happened to me I would write a polite letter to GP outlining my concerns and backed up with extracts/quotes from B12 documents.
I think document below mentions that only about half of people with B12 deficiency have anaemia and indicates that people who are symptomatic for b12 deficiency should be treated even if B12 is within range.
This next article discusses that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within range in order to prevent neurological damage.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
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