I had low b12 and received the b12 injections, currently I now have muscle fasciculations. Has anybody else had these as a lasting affect ?
have had these constant muscle twitches and spasms for approx 6 weeks.
How long before all the neurological issues repair them selves ?
Hi,
Welcome to the forum Paul,
I had muscle fasciculatons prior to getting treatment, it looked like something was wriggling under my skin. When treatment started, these disappeared.
Some people report that their symptoms get worse before they start to get better.
Some may get a drop in potassium levels when treatment starts so maybe your GP could check your potassium levels.
Has your doctor checked your folate, ferritin (and other iron tests) and Vitamin D?
People on forum often report deficiencies in these as well as B12.
You should see improvement in your neuro symptoms if you get enough B12.
Some people who have been left undiagnosed/untreated for a long time may have some symptoms that remain.
How often are you getting B12 injections?
I'm assuming you're in UK.
It's helpful to know which country you are in as patterns of treatment can vary between countries.
Here's a few links that might be useful.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum
B12 Deficiency Info website
Some UK B12 documents/articles
NHS article about B12 deficiency and folate deficiencty (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (detailed/aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
BNF link below outlines two patterns of treatment for B12 deficiency in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
Local B12 deficiency guidelines
I urge UK forum members to find out what's in ICB (Integrated care Board) or Health Board local B12 deficiency guidelines for their area.
Search online or try submitting a FOI (Freedom of Information) request to ICB or Health Board website asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Read blog post below if you want to know why I suggest this.
b12deficiency.info/gloucest...
B12 deficiency is not always as well understood as it should be by some health professionals.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
I can post a lot more information so let me know if you want me to.
hi thanks for response.
Yes I am in UK. B12 was 79, had loading dose then built up to weekly and monthly.
Had a very comprehensive set of blood tests, thyroid, ferritin, iron , vitamin D and many more. Only B12 was flagged
I am now on daily supplements, as I tested as not having PA via the intrinsic factor test. However it is recognised because I have the neurological version of b12 I may still have PA. We have agreed to try supplements and check b12 level in 6 months. If symptoms get worse return to IM injections before retest.
It really is the muscle fasciculations that are bothering me now, they are all over my body and do look like ripples under the skin. I have been prescribed a muscle relaxing/ antidepressant tablet to see if that helps.
I am wondering though if more b12 injections will help.
The intrinsic Factor Antibody test cannot be relied upon if it shows up as negative . About 50 % of Pernicious Anaemia patient test negative for it ,
Yes it would be a good idea to have B12 injections every other day until there is no improvement of symptoms .
Checking the level of B12 serves no useful purpose after treatment has begun . You symptoms are the guide to indicating success of treatment , not the B12 level . The guide lines state that testing B12 after treatment has started is totally unnecessary.
You have had a marvellous response from Sleepybunny ! Best wishes . 👍
"I am wondering though if more b12 injections will help."
"We have agreed to try supplements and check b12 level in 6 months. If symptoms get worse return to IM injections before retest."
I am very concerned that with such a low serum B12 result prior to treatment starting and with neurological symptoms, you have been put on oral supplements.
Did you ask to be on oral supplements or did GP suggest them?
There are moves across UK to put more people onto oral B12 as an alternative to injections. Some forum members manage their condition with orals but many on this forum find them ineffective.
B12 injections are relatively cheap but nurses' time to give them is expensive so I suspect a financial incentive.
Links about oral B12 treatment
Search online for "Cochrane Review Oral B12" and read the conclusions in the report.
B12 Institute Netherlands - Note about oral supplements
b12-institute.nl/caution-no...
B12 article from Mayo Clinic in US, mentions oral b12 treatment
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Forum thread about oral B12 treatment
healthunlocked.com/pasoc/po...
Symptoms diary
Worth keeping a daily symptoms diary. Score severity of up to ten symptoms, Note any treatment given and any blood test results. Could be useful evidence of improvement or deterioration in symptoms to show doctors.
This link discusses treatment for B12 deficiency in UK
cks.nice.org.uk/topics/anae...
It's vital to get adequate treatment.
Inadequate treatment can increase the risk of developing permanent neurological damage including SACD, sub acute combined degeneration of the spinal cord.
PAS leaflet about SACD
pernicious-anaemia-society....
Martyn Hooper's story, mentions SACD
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neurological symptoms present.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Are you by any chance in Gloucestershire which has a poor reputation on this forum as to how B12 deficiency is managed?
If not I still urge you to track down your local B12 deficiency guidelines as your GP is likely to refer to these when deciding treatment.
"as I tested as not having PA via the intrinsic factor test. However it is recognised because I have the neurological version of b12 I may still have PA."
They have acknowledged you have neuro symptoms and that you may have PA although IFA test was negative yet they have put you on oral supplements....I can't say I'm shocked because this sort of story appears time and time again on the forum.
Ask your GPs if you could have Antibody negative PA
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
PAS article Testing for PA
pernicious-anaemia-society....
I've also read that a pepsinogen test may be useful.
PAS website has lots of useful leaflets/articles
pernicious-anaemia-society....
You could point your GP to the PAS page for health professionals as they may find it helpful.
pernicious-anaemia-society....
There are plenty of other non dietary causes of B12 deficiency.
Coeliac disease
Were you checked for coeliac disease? If you had a negative result in past, check that your doctors followed the recommended diagnostic process as some don't...
Read guidelines below
NICE guidelines Coeliac disease
People with coeliac disease can get a negative result in tTG IgA test which looks for antibodies to gluten if
1) they have IgA deficiency
Did you have a Total igA test?
2) they were not eating enough gluten prior to blood being tested
Were you told to eat plenty of gluten in more than one meal per day for several weeks before your blood was tested for coeliac disease?
More info on Coeliac UK website
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, other B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
This thread was started by someone with neurological symptoms
healthunlocked.com/pasoc/po...
I am not a health professional, just someone who suffered for years from unrecognised and untreated B12 deficiency.
what was your ferritin? I know you mentioned it wasn’t flagged but I’ve learned that in range isn’t always optimal and there has been a change in ferritin ranges, at least in the US. My first hematologist said my ferritin of 11 yeas normal. My second said absolutely not. It needed to be over 30 at minimum.
If you are unhappy with your treatment or experience, read this thread I started about Patient Safety, it has many useful links for people unhappy with treatment.
Some UK forum members cannot manage on NHS treatment levels.
Some try high dose B12 orals or B12 drops between injections and some get extra B12 injections from private GPs or beauty clinics.
Some turn to self injection as a last resort using b12 ampoules from European pharmacies.
I had to resort to self injection when NHS refused to treat me and private injections were not an option due to financial reasons.
I had severe neurological symptoms including dementia type symptoms and spinal symptoms and count myself lucky to have avoided SACD and permanent dementia.
I have some permanent symptoms but can still enjoy life.
Petition
You may be interested in this petition to get injectable B12 available over the counter in UK
change.org/p/dr-june-raine-...
Worth reading the petition comments.
Tracey Witty of B12 Deficiency info has campaigned on this issue for 8 years.
Hi Paul,
I get this kind of issue. Check you are properly hydrated, perhaps try taking oral rehydration salts. Also you might be low in magnesium, calcium or vit D, so perhaps try supplementing with these a little and see whether it improves. [Note that it is possible to take too much magnesium, calcium and vit D, so if taking a high dose or for a long period check with your doc.]
Don't think it's the B12 that's the issue here, but it could be that the healing that has started thanks to the B12 is using up other minerals and leaving you depleted.
"Had a very comprehensive set of blood tests, thyroid, ferritin, iron , vitamin D and many more. Only B12 was flagged"
Have you seen all your blood test results?
These days I always check results myself even if told everything is normal/no action as I was told previously more than once that everything was normal and when I got copies/access I found abnormal and borderline results.
Accessing Health Records (UK)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
Retention of UK medical records
bma.org.uk/advice-and-suppo...
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 test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in the future.
Are you registered for online access to your records?
If not, search your GP surgery website for Online Access/Patient Access or Emis Access.
Look for trends in results over time.
Results that are increasing or decreasing may be significant even if still within normal range.
I suggest you put any thyroid results on Thyroid UK forum on Health Unlocked along with an outline of your story.
It's common for forum members here to also have thyroid issues.
In UK, GPs often only test TSH which won't give a full picture of thyroid function.
There are other thyroid tests that GP or specialist can order.
Thyroid Function tests
Hi Paul. I have suffered symptoms for just over 3 years - tinnitus, numbness and tingling in my hands/fingers, low energy, low mood and then 7 months ago I began getting fasciculations and heaviness in my legs. Years of GP and hospital visits offered no diagnosis and no help - just years of anti-depressants which only made me worse. Muscle twitches began around my eyes and then graduated to my arms, legs and even buttocks. I suspected MS but this was quickly ruled out by neurologist. One day somebody at work recommended vitamin B12 injections for my low energy and my research quickly brought to my attention how similar the symptoms were for PA / B12 deficiency to those I have been suffering with. I had my second Hydroxocobalamin injection a week ago today (one month after the first) and my symptoms are clearing rapidly. I haven't had any twitches/spasms for 3 weeks but most incredibly I am waking up feeling as though I have slept for the first time in a decade, literally. I will now revisit my GP and try to nail down a firm diagnosis. I believe that the B12 injections are far more effective than the tablets, for most people anyway, and the tablets gave me a bad stomach for several weeks before I had my first injection. Wishing you all the very best in your journey. W.
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