Hi As per my recent first post to this forum - I have been having 3-monthly injections but during the lockdown missed an injection and suffered a lot of new neurological symptoms. I have now had an injection last month and have been taking 4 oral B12 tablets daily. My GP requested a blood test which showed my B12 levels were >2000 . She then implied that B12 deficiency was unlikely to be the cause of my symptoms and talked about taking B12 can give a placebo effect and that B12 deficiency is “fashionable” now and I shouldn’t take too much notice of what I read online! She has prescribed Duxoltene for nerve pains and also for anxiety which she clearly thinks is causing my symptoms? I gather from this forum that this is a fairly common response from GPs so am continuing with the oral B12 supplements which seem to be preventing the visual disturbances and other symptoms . I am however still frequently having some deep seated, severe pains which start near my shoulder blade and go down one, or sometimes both arms lasting for about five minutes each time. Has anyone else experienced similar pains as I am wondering if this is also connected to B12 or something different?
Nerve pain? : Hi As per my recent first... - Pernicious Anaemi...
Nerve pain?
I would think you need to have a referral to a neurologist with all the nerve pain you are having. As for your Gp offering duloxetine . . That was the last drug offered by me by Gp. It does make sense given the symptoms.
Like you I've not taken it.
I have regular b12 injections . Alot has improved. I'm still having daily symptoms but not convinced duloxetine is the answer. I have tried amitriptyline as last year having almost continuous vestibular/migrain/ variable headaches.
It didnt help me so I stopped it after ? 3 weeks.
As for the placebo effect i dont buy that. My body now clearly tells me when I need or am due an injection.
I've told my gp I'd rather not have injections when she tries to say things like yours.
I too was put on oral tablets 50mg x3 a day. They did nothing for me.
But on my notes i tried tablets.
That was only to try and get a bigger gap between injections. 2 weekly. Not replace them. You should be on at least 2 monthly as per bnf guidelines.
Donr miss another injection. It will set you back further as you've experienced already
Fashionable....makes me furious.
Thar I'm afraid comes from people having b12 injections in beauty salons that do not need them
What doses are the b12 tablets?
Hi,
I think your GP is one of the sadly too many in UK who lack understanding of B12 deficiency.
Have you considered changing GPs?
nhs.uk/common-health-questi...
Have a look at section for patients with "neurological involvement" in next link.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
NICE CKS
cks.nice.org.uk/anaemia-b12...
Local Guidelines
Try to track down the local guidelines on treating B12 deficiency for your area of UK and compare them with BNF, BSH, NICE CKS links.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neurological symptoms present.
If you feel you are being under treated, you could draw GPs attention to increased risk of permanent neurological damage including problems with spinal cord if under treated.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Worth seeking support and info from following websites.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Link about "What to do next" if B12 deficiency suspected or newly diagnosed
b12deficiency.info/what-to-...
Useful B12 books
"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 in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
I hope you get a referral to a neurologist but be well prepared for any appointments with a specialist. There are some specialists, like some GPs, who lack understanding of B12 deficiency.
Have a look at my detailed reply in the thread "Increasing B12 injections" which is about 5 threads below yours.
"B12 deficiency is “fashionable” now and I shouldn’t take too much notice of what I read online! "
What an ignorant comment...
By the time, I had worked out that B12 deficiency was causing my many symptoms (over 40) I was well on the way to dementia and permanent neuro damage.
My then GPs (and many of the specialists I saw) were a dead loss as despite me pointing out my typical symptoms of B12 deficiency and the fact that I had had low b12 in past, they refused to treat me.
I have written many detailed threads on this forum with lots of links to useful info so may be worth searching for them.
I am not medically trained.
Thank you for your detailed reply and links. I am worried that my severe nerve pains are due to spinal chord damage and which may be permanent now? I had had nerve symptoms for decades before my B12 was checked. When I visited my GP 18 months ago with the severe arm pains she carried out an ECG and I was rushed to hospital and received a pacemaker for Mobitz Type 2 Heart Block! I was told then that the arm pains were not at all connected to this but were likely to be due to a trapped nerve which wasn’t confirmed?. Since being diagnosed with B12 deficiency I now wonder if the heart rate problem was actually connected??
That pain does sound a lot more like that of a trapped nerve than nerve damage from a B12 deficiency. It sounds very much like the pains I suffered for years after dislocating my shoulder.
This site describes the symptoms of SubAcute Combined Degeneration of the spinal cord. msdmanuals.com/home/brain,-...
Subacute combined degeneration begins with a general feeling of weakness. Tingling, a pins-and-needles sensation, and numbness are felt in both hands and feet. These sensations tend to be constant and to gradually worsen. People may not be able to feel vibrations and may lose the sense of where their limbs are (position sense). The limbs feel stiff, movements become clumsy, and walking may become difficult. Reflexes may be decreased, increased, or absent.
Rarely, vision is reduced.
Severe pain seems not to be a symptom.
If it is a trapped nerve then a physiotherapist might help. Or you could try these exercises - csp.org.uk/conditions/shoul...
Thank you for the reply - that is quite reassuring. I will try the exercises. I was referred to the Muscular Skeletal Clinic who recommended an MRI scan due to these pains being possibly a trapped nerve but then found that the hospital won’t do this because of my pacemaker - even though I have a card to confirm that it is MRI compatible?? They then referred me for a CT scan instead - but obviously due to the current situation I am still waiting for an appointment? Do you know if a CT scan would detect what the problem is?? Thank you again.
I don't know if a CT will detect a trapped nerve. Oooh, look - it can. Not as good as MRI, but they still can get some useful info. medicalnewstoday.com/articl...
I know that the best way to get a diagnosis of SACD is a special type of MRI (T2 weighted).
Palpitations most definitely related to B12 deficiency . I had them for many years with other symptoms of B12 deficiency , and was told not to worry about them — but they are scary . I eventually was diagnosed with Pernicious Anaemia ( positive Intrinsic Factor antibody test ) by a private doctor . Could only get 3 monthly injections which were inadequate . Did not keep symptoms at bay . Since self injecting weekly , no more palpitations after 5 years of self- injecting . Just left with burning feet which are now permanent . But they are no longer totally numb as they were before . I’m afraid that neither tablets ,oral or sub lingual , mouth sprays , nasal sprays nor patches were any use to me .
Yes, it is almost undoubtedly connected to the B12 deficiency and it is her who shouldn't believe all she reads - about B12 being a placebo!
It is imperative that you get enough B12 and supporting supplements to keep your symptoms at least to a minimum, to prevent long term damage occurring.
Please see posts and replies on here about self injecting. Wedgwood, Foggyme and Sleepybunny - as you have seen above - are particularly helpful.
Thank you for your reply - it looks like I have a lot of reading up to do before going back to my GP! I am still awaiting test results for Pernicious Anaemia (from10th December) - but can see that these may not be conclusive! Thank you again.
I have a similar problem. I had a good month after my loading shots and weekly shots of 1,000 mcg were finished of having only very mild neuro symptoms in my feet. Then I got put on a regimen of 100 mcg a month of injections. I didn’t even get through the first month without the 1,000 mcg when my neuropathy returned. They just tested my levels and it takes 3 weeks to get the results back as I live in a remote location. I’m hoping they increase my dosage. I have been to two Japanese neurologists and all other neurological conditions and cancers have been ruled out. I have been wondering if neuro symptoms can return as well. I have been diagnosed with pernicious anemia per the bloodwork. And it runs in my family.
Hi again,
"I am still awaiting test results for Pernicious Anaemia (from10th December)"
PAS support groups in UK
pernicious-anaemia-society....
No meetings during pandemic.
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.
The document below mentions Antibody Negative PA.
There are some useful diagnostic flowcharts in the document.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
"My GP requested a blood test which showed my B12 levels were >2000 "
BSH Cobalamin and Folate Guidelines suggest that checking B12 levels after treatment has started is irrelevant in most cases.
Have a look at these links below.
Testing B12 during treatment (PAS article)
pernicious-anaemia-society....
Testing B12 during treatment (article from Dutch b12 website)
stichtingb12tekort.nl/engli...
B12 article from Mayo Clinic in US.
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Article suggests ....
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.
3) Successful treatment should not be stopped
Thanks again for these clarifications.
I was told I had a trapped/pinched nerve about 6 years ago by the doctor and prescribed physio. At the time it was intermittent and seemed to get better so I wasn't bothered. I started off with tingling in my rhs two smallest fingers sometimes radiating into my shoulder and back. It wasn't until I started b12 injections that I realised that it wasn't that as the nerves seemed to wake up and were going crazy.
Hi thank you for taking the time to reply. It is certainly a minefield isn’t it? I do worry because I know I have had symptoms for many years which started with strange “agitation” in the ends of my fingers and toes! I only went to my GP three years ago and asked for blood tests - then when I rang up for the results the Receptionist told me that all results were normal and no action was needed. 18 months later I was having pains in my feet and legs and arms so went back to the GP who referred back to my records and revealed that my B12 levels in the previous tests had actually been abnormally low and I should hv been prescribed B12 injections 18 months previously! I was then given 3 loading injections and then 3-monthly injections but various neurological symptoms have continued/ worsened .... as per my previous post .
If you have neuro symptoms, you have not been treated correctly. Protocol is every other day until no further improvement.
"then when I rang up for the results the Receptionist told me that all results were normal and no action was needed"
For years I trusted my GPs and had many times when I was told everything normal and no action needed despite me suffering over 40 different symptoms, many of them neurological and including symptoms affecting my spinal cord.
I was told I was a hypochondriac, that all my symptoms were due to depression, that my symptoms were psychosomatic...I knew that they weren't but didn't know how to prove it.
The most important advice I was ever given was to always get copies of or access to my blood test results and when I did I found abnormal (out of range) and borderline results.
These days I don't accept being told everything is normal without holding a copy of results or seeing the results listed clearly on a screen.
Hi Thanks - yes I was very naïve for many years. It was the GP Receptionist who gave me the incorrect advice re the abnormal B12 result and was only discovered during a further visit to my GP 18 months later when he was reading my past results out loud and mentioned the B12 deficiency. He took further test then when I rang up for the results the Receptionist again told me all results were normal. It was only because I asked her to double check the B12 again that she then said "Oh yes, there is an abnormal result there so you need to see the GP. Apparently the Receptionists were not always scrolling fully down the results pages! Worrying! I then took the advice of accessing my patient records and all test results. I am now arming myself with the documents recommended on this forum before talking to my GP again.
"I am now arming myself with the documents recommended on this forum before talking to my GP again."
Have you considered writing a letter to GP?
See letter writing link in my first reply on this thread.
My understanding is that in UK, letters to GP are supposed to be filed with medical notes so are a record of an issue being raised. Keep copies of any letters sent or received.
Hi again - thanks for the tip and the link. I don’t really want to upset/change my GP as I have been with this practice all of my life and I and my family have had really good treatment from them. I will ask for an appointment with one of the other doctors who knows me better and see how I get on?
Yes I have the pains you describe I take 10mg of Phoenix High Strength Methyl B12 daily most days. And use a variety of stretching exercises, also machines similar to Tens etc. Pregablin helps to reduce anxiety and nerve pain.... etc 😘
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