Hi everyone. I'm new here and was recently diagnosed with B12 deficiency (161 is my result, 200-914 normal). I haven't been diagnosed with Anaemia as of yet, as the current health crisis has all but put a halt on non-emergent issues. The physician put me on cyanocobalamin 1000 mcg oral tablet once a day. I have been taking the vitamin for a month and have started to develop concerning symptoms. Mainly I have muscle twitching, primarily in my legs and eyes, but also in my back on occasion. Additionally, some numbness/tingling in my fingers and toes. I also have brain fog. I assumed a great deal of these issues would slowly dissipate, if they do at all. However, has anyone ever encountered new symptoms such as these developing as B12 levels improve? Could it be due to the nerves "waking up" and overfiring after be dormant for a long time?
I worry that it is something serious and have scheduled a visit with my neurologist to be sure. I'm just hoping to solicit input from others with similar experiences.
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connorg3
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How do you know your B12 levels have improved? If you have PA then the tablets will be doing nothing. Not having anaemia doesn't rule out PA.
You need injections.
Get in touch with your doctor and say that you have developed pins and needles and numbness in your finger and toes and that you are worried it is peripheral neuropathy that will get worse.
Thanks. That is valuable insight. I guess the muscle twitching has me the most nervous. I recall the eye twitching in the past prior to my diagnosis, but not the constant twitching in the legs.
I'm also on Metformin for prediabetes and read that could cause issues with absorbing B12.
Metformin can, indeed, inhibit the absorption of B12. If it is that which is causing your deficiency it may be that high-dose oral can fix it. I've not seen any real data.
I know you need to make sure potassium doesn’t get too low while taking b12 drink some orange juice or whatever you like to make sure potassium stays up
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.
If you're in UK , I recommend you read all the UK documents I've linked to in thread below.
Many forum members in UK have had B12 treatment stopped/delayed or swapped for oral tablets during pandemic.
I copied most of the info below from a reply I wrote on another thread.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog posts/news items about stopped injections
Published 1st April (sadly not an April Fool joke)
b12deficiency.info/blog/202...
PAS statement published 11th April
pernicious-anaemia-society....
Blog post from B12 Deficiency Info
18th April
b12deficiency.info/blog/202...
Blog post from B12 Deficiency Info
19th April
asks people to join an e-mail campaign
b12deficiency.info/blog/202...
BSH Advice
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors during pandemic.
b-s-h.org.uk/about-us/news/...
Click on General Haematology tab in link above
then
Click on BSH Advice on Supplements tab
I feel that some of the details in the BSH advice are concerning, there is a recent thread on forum which discusses this.
I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.
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 considered joining PAS?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a telephone helpline for PAS members to ring.
PAS support groups in UK
pernicious-anaemia-society....
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.
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.
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.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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