I have been told that I have low B12 and my level is 101 and have been started on Cyanocobalamin 50mcg tablets 1 tablet twice a day between meals for 28 day’s only, started the tablets last Wednesday and today is Tuesday does anybody know how long they take to show any difference to how I am feeling, the pins and needles in my fingers, hands and wrists and my whole body hurts mostly during in the morning and evenings and if I have done anything strenuous? I have just had blood test results back for the pernicious anaemia but that thankfully has come back negative but I don’t know why I have low B12 as GP just left a message for me to pick up the prescription and get the PA test done and repeat some bloods again in January! I have had low Vitamin D for a few years and take tablets for that, I’m lactose intolerant so do try not to eat Dairy so sort of a vegan diet but only on the dairy side. I’m so confused about why I’m feeling in so much discomfort all the time and so tired and breathless etc also just been diagnosed with Osteoarthritis in both hips recently too so much going on I feel like poop!
Low B12 advice : I have been told that... - Pernicious Anaemi...
Low B12 advice
As beginner1 has pointed out , having a negative test for P.A. ( it’s called the Intrinsic Factor Antibody test ) does not mean that you don’t have P.A. About 50 % of P.A. patients test negative . Unfortunately the medical profession in general is pretty ignorant about P.A. / Vitamin B12 deficiency . If you do not respond to the B12 tablets , it’s then more than likely that you do have P.A. Pernicious Anaemia is the most common reason for B12 deficiency.
But you do mention that you are vegan ,” but only on the dairy side” I’m not quite sure what you mean by this . A vegan diet without any meat , fish or eggs can lead to B12 deficiency . If you have told your G.P that you are vegan he will assume that is the reason for your deficiency , and will prescribe tablets . Pernicious Anaemia patients can only absorb B12 from injections . So we really need a bit more information. Best wishes .
Morning
I am lactose intolerant so I have cut out my dairy intake so meaning I have Dairy free margarine and lactose free cheese and milk, I still eat meat fish eggs etc just try not to eat anything that contains milk!
I have an appointment over the phone next Wednesday with my GP so will have to discuss it more with her as all I got after chasing my results was that I needed the PA test done and to start the tablets!
Finding it all very hard to get my head around at the moment as been off work for a few months as my Dad was ill and during that I have been feeling ill too but put it down to stress from my Dad
Thank you for your message
Yrs stress brings out anything . It tipped me 'over the edge' too
I was on a strict vegan diet for 10 years, never supplemented. My B12 came back 95 after I started experiencing neurological symptoms. My vitamin D was also very low at 5.1. Been SI daily for two weeks now and supplementing D3 & K2. Some symptoms have already improved, but still having rough days. Although my doctor blamed the diet, I also have Celiacs and wonder if malabsorption could be a possibility.
Hi yes I am from the UK and that sounds about right for my GP surgery to not start me on the correct treatment, I can’t get a telephone appointment with her till next Wednesday, would of been taking the tablets 2 weeks by then!
The range for the B12 on the blood test was from 120.0 - 900.0 and mine is 101ng/L
My mean cell Haemoglobin level has been over the reference limit for a few years but no one has picked up on it only I have looked back at previous tests I’ve had done that I can now see this, range for this is 27.0 - 32.0 Mine is 33.3 pg and was that level back in January too! I haven’t had a ferritin or folate test done yet that’s on the form for January blood test, the PA test says Negative (<1:20) Negative does not support a diagnosis of pernicious anaemia
Thank you for your reply and take care
I also were given/prescribed the cynocobalamin 50mcg b12 tablets x 2 daily in the UK. I am on injections though. Its was an attempt from Gp to lessen frequency or get me off Injections.
I expect the doctor is treating you as diet deficiency. So that may be wrong and you may have an absorbtion problem?? Treatment does take time whatever form.
Good to have folate checked. And as already said ferritin vit d thyroid? And iron. If symptoms persist push for Injections. The oral form did nothing for me . I even went up to 1000mcg a day.
However my sisters level was very similar to yours with similar symptoms. She took 500mcg oral b12 and her symptoms did go and her b12 levels increased quite quickly. Hers was a dietary deficiency post menopause so naturally absorbing less too.
Hope you get the right treatment for you soon ans start to get relief.
So go by your symptoms .
P.s I think we were all writing at the same time!
If you only omit diary tiubshoukd get enough b12 from your diet. Write down what you eat to present to the doctor.
Hi no I’m in Essex and that’s interesting to hear, I work in a Doctors surgery and really need to have a chat with one of the clinicians there but they are busy so don’t like to bother them. Finding work hard as my symptoms have got worse since I went back a few weeks ago possibly feels like that because I’m working and not at home being able to rest when I can.
I have a phone call booked for next week so maybe I can get some answers!
Thank you for your reply
Whatever the cause of your low B12 reading, dietary and/or impaired absorption, 50mcg twice a day is very unlikely to produce any improvement in your symptoms. According to my husband, treating any B12 deficiency with oral tablets helps at most 46% and often only about 20% of patients. In the studies producing these rather poor success rates, a minimum of 500 mcg a day was needed to show any improvement. In most studies 1000 to 2000mcg were used. Really a deficiency that has built up over time requires loading injections to efficiently bring reserves back to normal. Refer your GP to the British Haematological Guidelines accepted by NICE. Especially with your tingling sensations.
Your GP can only prescribe 50mcg tablets as these are the highest level available on prescription in UK. When challenged many GPs retreat to observing that you can get higher dose B12 tablets from health shops. This may help, however beware the fact that supplementation of any kind will interfere with the blood test results for 3 to six months without necessarily preventing your symptoms. None of the B12 serum tests are very reliable, especially after supplementation. The question is why did you develop a deficiency? Is there any family history of these sorts of symptoms? Etc.
In the spirit of trying to get the best out of your GP: If your GP thinks this is dietary but won't give injections, I would agree to temporarily take 1000 to 2000 tablets from a health shop, with the proviso that they take responsibility for your tingling and aching symptoms. If your tingling gets worse or you progress to numbness in the extremities demand that the guidelines are followed as soon as possible. I am not medically trained but there is lots more advice on this website and from the Pernicious Anaemia Society .
Hi,
"I have been told that I have low B12 and my level is 101 and have been started on Cyanocobalamin 50mcg tablets 1 tablet twice a day between meals for 28 day’s only"
Low dose cyanocobalamin tablets are normally only given in UK when B12 deficiency is due to dietary causes.
Do you have any neurological symptoms?
My understanding is that in UK, patients with neuro symptoms due to B12 deficiency should be on injections whatever the cause.
"just had blood test results back for the pernicious anaemia but that thankfully has come back negative "
I suggest you consider joining then contacting PAS.
It's possible to have negative results and still have PA.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
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.
Have you been tested for Coeliac disease?
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
Note this link says for "B12 deficiency of dietary origin".
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about writing a letter to GP if under treated for B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs and devolved representatives may be worth talking to if struggling to get recommended level of treatment from NHS.
Inadequate Treatment
Don't let them get away with inadequate treatment as the consequences can be severe for both mental and physical health including the possibility of symptoms such as damage to spinal cord, dementia type symptoms and psychosis.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
Useful B12 book
"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 may be out of date in book. See BNF link for up to date info.
Causes
I'm guessing your GP has assumed that your B12 deficiency is due to diet.
Have you written out a typical weekly diet, food and drinks for GP so they can see what you're eating?
If you're eating a B12 rich diet eg with meat, fish, shellfish, eggs, foods fortified with B12 even though you don't eat dairy then it's less likely that B12 deficiency is due to dietary causes and more likely that there is an absorption problem in gut.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
Warning
B12 deficiency is not always well understood by GPs and specialists so do your homework on B12 and always get copies of or access to all your blood test results.
I learnt after some very difficult years that sometimes GPs get it wrong.
Good luck with getting the help you need.
I am not medically trained.
Wow that’s a lot to take in but thank you for taking the time to reply to my post.
I was tested for coeliac by a Gastroenterologist about 4 or 5 years ago and believe that was all clear, this was checked when I went to see him about Lactose intolerance, which I wasn’t officially diagnosed with as they don’t do a test at that Hospital but he is himself and believed my symptoms are exactly the same as him and also said I had slight IBS, since then I have always used Lactose free Milk and Cheese and use dairy free spreads and try to avoid food that contains Milk and all the other bits that they suggest you don’t eat if your lactose intolerant or if I do I know the consequences!
I am not happy that I was just given the prescription and advised to have a PA blood test and re-test in January 2021 for the B12 plus FBC , FERRITIN & FOLATE the folate and ferritin I haven’t had tested before I don’t believe but have had a fair few bloods taken recently and over the years for FBC and I have noticed that they have all shown in the last few years that my Mean Cell Haemoglobin has been raised above the highest level but no GP has picked up on it, it’s only now that I have looked into this that I have noticed it on my results, just get told they are normal!
I have a telephone appointment with the GP on Wednesday and I want answers now as fed up feeling like this , we had put it down to the menopause or my thyroid but they came back as not and I have had a Covid Antibody test twice now as felt like I might of had Covid in December last year as I was so ill for over 3 weeks and haven’t felt right since , I had travelled abroad in the November so hence my worry but they have both been Negative thankfully so felt it had to be something and it couldn’t all just be in my head how I have been feeling all year really but everything has taken so long because you can’t get a face to face appointment with the GP and have to wait weeks for them to acknowledge the results are back, it’s so frustrating and so confusing! I feel like I’m off balance a lot of the time and the pains I feel in most of my joints is just horrible but I don’t want to be taking pain relief all the time, I use the pain relief creams or gel mostly especially at night so I can try and get some sleep! Typing this is making my shoulder and fingers hurt, was diagnosed by an Osteopath a few years ago with an R Shoulder AC IMPINGEMENT & SUPRASPINATUS TENDINITIS which they helped me with but that’s all flared up again but can’t really afford to keep going to see one Privately but they are good so am considering going back but the B12 needs to be sorted by my GP and it seems at the moment they aren’t helping me, some days I just feel so so tired and ache so much I don’t want to feel like that anymore and wish it would all go away!
I will bear in mind what everyone has said when I speak with the Doctor on Wednesday!
Thank you again
Hi again,
I suggest you think about writing down a list of all your symptoms for GP after looking at links below especially any neuro symptoms. I think GPs are more likely to take notice of neuro symptoms.
I believe B12 deficiency can affect every body system.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Peripheral Neuropathy
nhs.uk/conditions/periphera...
Symptoms of PN can include tingling, pins and needles, electric shock sensations, burning sensations, insect crawling sensations plus many other symptoms. The medical name for these sensations is "parathesiae".
Worth mentioning any symptoms suggestive of PN as most GPs should be aware that B12 deficiency (and folate deficiency) can lead to PN.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
H Pylori infection?
patient.info/digestive-heal...
NICE guidelines H pylori
pathways.nice.org.uk/pathwa...
Click on blue boxes in flowchart for more info.
Any exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
Nitrous oxide is a gas that is sometimes used as part of pain relief/anaesthesia.
It's in gas and air mix used as pain relied in labour.
NICE guidelines Nitrous Oxide ( see side effects section)
bnf.nice.org.uk/drug/nitrou...
Any chance of internal parasites eg fish tapeworm. Do you ever eat raw or uncooked fish eg sushi/smoked salmon?
Other parasites that have been associated with B12 deficiency include Giardia Lamblia. Search online for "B12 deficiency parasites" if you want to know more.
Any gut surgery?
Damage to terminal ileum (part of gut where B12 is absorbed) may lead to B12 deficiency.
"I was tested for coeliac by a Gastroenterologist about 4 or 5 years ago "
Did you have an endoscopy?
If gastro just did blood tests, which blood tests did they do?
Coeliac guidelines below, suggest two first line tests.
1) TTG IgA which looks for a particular antibody to gluten.
2) Total IgA which checks which patients have IgA deficiency.
Patients with IgA deficiency will need different tests for Coeliac as their bodies will not produce the antibodies that TTG IgA test looks for.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
If you were told you needed blood tests for coeliac disease, were you told at the same time to make sure you were eating plenty of gluten in more than one meal per day for several weeks before blood was taken?
A person with coeliac disease may get a negative result in TTG IgA test if they weren't eating enough gluten prior to test.
May be worth pursuing possibility of Coeliac disease if you weren't given IgA test or weren't eating plenty of gluten before blood taken for testing.
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Have you had any thyroid tests?
Quite a few forum members also have thyroid issues. I suggest putting any thyroid results on Thyroid UK forum on HU.
In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests besides TSH.
Thyroid tests
thyroiduk.org/getting-a-dia...
"I have a telephone appointment with the GP on Wednesday and I want answers now as fed up feeling like this"
Might be worth joining PAS and ringing their helpline before Wed. PAS can offer support and pass on useful info.
Suggest you also read this document before appt.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
If you have concerns over treatment/diagnosis then it may be more effective to put them into a brief, polite letter as harder for them to ignore something that is written down. See letter writing link in my other reply.
Local Guidelines
CCGs/Health Boards in UK will have their own local guidelines on treating B12 deficiency. Local guidelines can vary from what is in BSH Cobalamin and Folate guidelines.
Suggest if you have time before Wed, you track down the local guidelines for your CCG/Health Board and compare them with BSH document, BNF links in my first reply and link below.
NICE CKS
cks.nice.org.uk/anaemia-b12...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
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