B12 deficiency

I only heard of B12 deficiency 2 weeks ago.

18 months ago I had a swollen leg, was told it was ‘fat deposits no treatment’ (not my GP) Since then I have had a lot of cramp and some pain in it, it has lost some feeling, hot water feels tepid. My hand gets cramp too and pins and needles. I did nothing about it.

2 weeks ago I felt very wobbly, faint and slightly sick. My GP he gave me a blood test and phoned me the result. B12 – 103, the rest ok. Since I had not heard of it I did not know what to ask.

I have had 5 injections (only 5 allowed in my county) and feel just as bad. I was told by the practice nurse that they would be in touch in 6 months’ time.

I eat a plenty of cheese, butter, milk, meat and eggs, so my diet should be ok.

What will happen next? What do I ask my GP.

25 Replies

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  • Are you in the UK?

    A B12 result of 103 sounds very low.

    "My GP he gave me a blood test and phoned me the result. B12 – 103, the rest ok."

    Testing

    My experience has taught me to always get paper copies of all my blood test results as what I was told was normal over the phone or face to face, was not always normal when I got the paper copy. Even if results are within the normal range, my personal view is that it can be helpful to know where in the range I am. Most UK surgeries with charge a small amount per copy.

    b12deficiency.info/b12-test...

    Have you ever had an IFA (Intrinsic factor Antibody test) test? This can help to diagnose PA (Pernicious Anaemia) but the test is not always reliable. People can still have PA even if test is negative.

    Useful webites

    b12d.org

    b12deficiency.info/

    pernicious-anaemia-society....

    01656 769 717

    I found the PAS helpful to talk to. If you leave a message they should get back to you within a few days. They might be able to suggest things you could ask your GP.

    martynhooper.com/

    Recent documents in the UK make it clear that patients who are symptomatic for B12 deficiency should be treated even if their B12 is within normal range. see links below.

    Documents/articles

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines"

    These came out in 2014. I was told the NHS should be using them but some GPs may not have read them. I gave a copy of this document to my GPs.

    patient.info/doctor/pernici...

    patient.info/doctor/macrocy...

    Books

    "Could It Be B12" by Sally Pacholok and JJ.Stuart

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    this book is very up to date as it came out in Oct 2015.

  • Thanks for your information.

    I have never had or know anything about an IFA (Intrinsic factor Antibody test) test.

    I will read what you have suggested and hope I understand it, it is so new to me.

  • B12 deficiency is generally caused by something going wrong with the mechanism by which the body absorbs most B12- which relies on the illeum, rather than a problem with lack of B12 in diet.

    Causes include

    a) autoimmune responses (which is where IFA and PCA tests come in) but the tests are a long way off of 100% accurate so a negative result doesn't mean that you don't have the autoimmuneresponse

    b) gastric surgery affecting the ileum - which can include gastric band

    c) lowering levels of acidity in the gut as you get older

    d) drug interactions - including PPIs (used to treat heartburn), NSAIDs, Metformin used to treat type 2 diabetes, some anticonvulsants ... a very long list infact

    e) genetic disorders affecting the ileum.

    If your ability to absorb B12 has gone then that also means that your ability to store and recycle B12 has gone as it relies on the liver releasing B12 in bile back into the ileum. So, it is injections for life though bit alarmed at the 6 month gap to the next dose.

    First thing to do is find out as much as you can for yourself about B12 as your GP is unlikely to know much and may have many misconceptions - book recommendations would include - Martyn Hoopers books, Could it be B12? by Sally Pacholok and B12 deficiency Survival Handbook by Dr Aqsa Ghazanfar and Regev Elya

    Would be useful to know where exactly you are based - country and possibly region as different countries do have different standards and just because your doctor has told you 5 loading doses is all that is allowed that would not be considered good practice in many other countries and you might be able to use that as an argument. It may be they are following very local standards rather than national standards.

    The sites sleepy bunny has given you are also useful sources of information.

  • Thank you for your help.

    I am elderly, so c) could apply.

    I live in Gloucestershire UK, and checked their instructions for treating B12 d. I got a shirty reply from the practice nurse when I queried the only 5 injections. Luckily my GP is very nice.

    The 6 months bothers me too, the waves of feeling faint and sick seem to be getting worse not better, my legs get more numb and I dare not drive any more.

  • "I live in Gloucestershire UK, and checked their instructions for treating B12 d."

    Each region of the UK seems to have its own Management guidelines for B12 Deficiency. Some of these have not been updated since the BCSH Cobalamin Guidelines came out in 2014. Perhaps the nurse could check with the haematologists in Gloucestershire as to whether they are following teh BCSH Cobalamin guidelines.

    I gave a copy of these to my GPs to make sure they were aware of them. I was told that the NHS should be following the BCSH Cobalamin guidelines.

    Your local CCG (Clinical Commisioning Group) should be able to tell you if the BCSH Cobalamin guidelines are being followed in your area. MPs can also be useful in getting answers.

    nhs.uk/servicedirectories/p...

  • When you have completed your research would it be possible to take someone with you? I'm 61 and my husband's presence meant he was able to back up my answers to the GP's query - "You might have always been clumsy?" etc! B12 deficiency can affect the brain so it really helps to be super organised (I took a list of symptoms) and to know what it is that you want from the DR. If you have given up driving then you are suffering from neurological symptoms and it is imperative that you get treatment quickly. Delays could mean permanent damage. It is your body so you should be able to make your needs known. Good luck.

  • Just as Bethatthebeach mentioned, I took a list of symptoms and ticked all the ones that applied to me. See links below for lists of symptoms.

    b12deficiency.info/signs-an...

    pernicious-anaemia-society....

    See Symptoms Checklist

    I also think Beth's advice to take someone with you is good.....as long as they are supportive and understand your health problems. GPs/Consultants are sometimes kinder when thereis a witness.

    Sometimes symptoms can be put down to "getting older" or "being menopausal" so you may have a fight on your hands to be taken seriously.

    The news page on the PAS website mentioned a PAS support group that is being set up in Gloucestershire. If you ring the PAS I'm sure they will give you more details.

    pernicious-anaemia-society....

  • Thank you for all your replies, they are very helpful.

    I see my GP tomorrow, 7.30 am, up an outside staircase, I hope I make it, but it was the only appointment for at least 5 weeks. I like to be independent so will go alone – but my GP is very nice.

    I will take the list of symptoms with me. Thanks for that.

    I have not only had to give up driving, but everything else as well.

    Do legs that do not feel temperature (hot water), cramp and are sometimes painful count as neurological symptoms ? Is that correct ?

    I think the problem is not my GP but the Glos. Guidelines, they seem to be from 2004, I can’t find any updates apart from one saying “no more tests for . . . wait 6 mths, do not repeat within 12 mths. etc.. “ Perhaps I have missed something or they haven’t updated their website.

  • Good luck with the appt. I hope you will update your thread afterwards.

    I found it helpful to get copies of the following blood tests over a period of years. I still find it useful to track changes in my blood test results.

    folate

    ferritin

    B12

    FBC (Full Blood Count)

    High MCV and High MCH on the FBC can indicate the possibility of macrocytosis (enlarged red blood cells). Macrocytosis can be found in people with B12 deficiency but not always. One of my GPs ignored the significance of high MCH.

    B12 deficiency can cause shape changes in blood cells....as well as enlarged red blood cells, it can cause hypersegmented neurtrophils. A blood smear, also known as a blood film, can also pick up macrocytosis. This test is probably available privately if GPs won't order it. I don't think its often done on the NHS for possible diagnosis of B12 deficiency.

    Low B12 and/or low folate can make red blood cells larger(macrocytosis). Low iron can make red blood cells smaller (microcytosis). If you have both conditions eg low iron and low B12 and/or folate then your red blood cells may appear to be normal size and a GP might miss problems on a FBC. I think as well as the FBC its useful to get folate, ferritin and B12 done at the same time. A blood smear/blood film may show up both macrocytic and microcytic cells in the same sample.

    patient.info/doctor/periphe...

    patient.info/doctor/macrocy...

    patient.info/doctor/full-bl...

    I have in the past paid for a private FBC (Full Blood Count) when the surgery wouldn't test me.

    "Do legs that do not feel temperature (hot water), cramp and are sometimes painful count as neurological symptoms ?"

    Doctors vary in what they consider to be neuro symptoms. I have read that tinnitus is very common in B12 deficiency and tingling and pins and needles (sometimes called parathaesia) especially in the hands and feet. The two books I mentioned in a previous thread would have more info on this. I think it's useful to emphasise neuro symptoms as hopefully it will lead to more intensive treatment.

    Is your GP aware of the documents I mentioned in a previous post? Especially the BCSH Cobalamin and Folate Guidelines?

    I am not a medic just a patient who has struggled to get a diagnosis and wants people to have useful info.

  • Had a great appointment with my very nice GP.

    Told him I had Googled B12 d. He didn’t flinch. We discussed the difference between the NICE and Glos. guidelines. He said he would do another blood test in 3 months, Glos would reject it if any sooner.

    I took a sheet of symptoms’ (the PAS ones) which he studied, said were useful and could he keep it.

    He tested my legs. He was very thorough. I was surprised that, when lying down, I could not lift one leg more than 6”. He agreed that it was neurological. It is one of the GP’s specialities so he is going to have words with him and get back to me.

    The best part was when I offered to do the ‘shut eyes’ balance test. I had tried it the night before and was glad there happened to be an armchair behind to catch me – but this time it was spectacular – in less than a second I had crashed back into the chair making a huge bang, we were both shocked. I am still laughing about it.

    I am to see him in one month. Hurrah for good GP’s.

  • "We discussed the difference between the NICE and Glos. guidelines"

    The NICE guidelines are not as recent as the "BCSH Cobalamin and Folate guidelines"

    Did you discuss the difference between the BCSH Cobalamin and folate Guidelines and the Glos guidelines? I gave my GP a copy of the BCSH Cobalamin guidelines. As I said before, I was told that the NHS should be following the BCSH Cobalamin Guidelines and I assume that means the NHS in Gloucestershire as well as the rest of the UK.

    Your GP may find it helpful to contact the haematologists at the Gloucester hospital.

    "the ‘shut eyes’ balance test.......spectacular – in less than a second I had crashed back"

    This type of response can be found in some people who have B12 deficiency. Try googling "Romberg's test"

    en.wikipedia.org/wiki/Romberg's_test

    Try an internet search on "Proprioception"

    See an old thread on HU about proprioception

    healthunlocked.com/pasoc/po...

    If your balance is affected that would indicate the possibility of neurological symptoms. The treatment for B12 deficiency with neurological symptoms is detailed in this link in the Management section.

    patient.info/doctor/pernici...

    "I am to see him in one month"

    I am concerned on your behalf that you won't see the GP for another month. If you have B12 deficiency with neurological symptoms its important not to delay the start of treatment. See link below.

    bmj.com/content/349/bmj.g5226

    "If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features"

    Some people with B12 deficiency develop sub acute degeneration of the spinal cord. This happened to Martyn Hooper the chair of the PAS.

    I'm glad you have found a nice GP. Hopefully he is well informed about b12 deficiency. I made sure my Gps were well informed by giving them copies of documents and Martyn Hooper's latest book.

    Have you thought about ringing the PAS (Pernicious Anameia society)?

    01656 769 717

    They might be able to tell you if it is a good idea to wait a month before seeing your GP.

  • The other GP suggested Coeliac, so I have a test on Thursday and will ask for prints of the 2 blood test results then. The GP did say the "IF" was OK.

    I have ordered the books you suggested and will get in touch with PAS when the Coeliac results come through. Would Coeliac cause the damage I have to my legs ?

    I am ploughing through the other suggested articles, will, I hope, understand them better when I see the blood test results.

    The one thing that does stand out is that with neurological symptoms, which I clearly have, the injections should continue (not happening)

    Still have waves of feeling fain, and am very wobbly.

  • What now ? Fed up.

    Got my blood results –

    B12 103 ng/ L (180 - 1000)

    Ferritin 69 ug/ L (10 - 300)

    Foliate 4.3 ug/ L (<4.00)

    IF Antibody - negative.

    Coeliac - negative. (Not surprised I did not have symptoms)

    I had an appointment with the other, neuro. GP, who after a thorough exam., eyes as well, ordered a chest xray and Cat scan. I presume the xray was negative (2 weeks ago) Cat scan next week. I didn’t think to ask why!

    In the meantime bouts of feeling faint and sick, balance and numb legs get worse. I see my GP on Monday, perhaps he will tell me more. Nothing more about injections until 3 months are up.

  • PS Cat scan - head

  • Hi,

    I'd urge you to contact the PAS as soon as possible.

    pernicious-anaemia-society....

    01656 769 717

    Office is open from 8am till 2pm every day excpet Sundays

    The PAS can sometimes intervene on behalf of members. Lifetime membership costs about £20. If you join you can access details of the Gloucestershire local group.

    The Gloucestershire group is mentioned on Martyn Hooper's blog.

    martynhooper.com/2016/02/28...

    Untreated or inadequately treated B12 deficiency can cause permanent neurological damage. In some cases it can lead to "sub acute combined degeneration of the spinal cord".

    "The GP did say the "IF" was OK."

    I hope your GP is aware that it is possible to still have PA even if your IFA test is negative. The PAS will be able to tell you more about this.

    I found this document very useful

    "BCSH Cobalamin and Folate Guidelines"

    Page 29, a diagnosis and treatment flowchart mentions "antibody negative PA"

    "Coeliac - negative. (Not surprised I did not have symptoms)"

    Negative Coeliac Test

    It is possible to have Coeliac disease even with a negative test result.

    coeliac.org.uk/coeliac-dise...

    coeliac.org.uk/coeliac-dise...

    Coeliac disease can cause a wide variety of symptoms (including neurological symptoms) which can range in severity. See symptoms list below. Some people have few symptoms and some may have lots.

    coeliac.org.uk/coeliac-dise...

    Coleaic UK have a helpline

    0333 332 2033

  • Did you have a full blood count test?

  • The blood test details I gave in the earlier post are all there were on the sheets they gave me.

    The trouble is that I think, and the other GP thinks too - he said 'not sure it is the B12d' which it has to be with a low 103/ 180 , there is another problem as well, which the CT Scan may show. (Bags above and under the eyes which make my eyes weep, when pressed, runny eyes and a nose that sometimes runs clear liquid when I change position.) The CT Scan results should be in this week so I will have more information then. What a muddle.

    I have joined the PAS and will phone them then.

    I hope there is not going to be another fight on my hands! But as soon as it is sorted I shall try and do something about Glos. B12 treatment - not updated since 2015!!!

  • Did you mean "not updated since 20O5"?

  • These were the sites for Glos. As far as I can understand it they do not follow the NICE updates.

    gloshospitals.nhs.uk/ShareP...

    gloshospitals.nhs.uk/.../B1...

    gloucestershire b12 deficiency

    gloshospitals.nhs.uk › ... › Pathology Departments › Haematology

  • Yes, Sorry, I missed the incorrect date. Gloucestershire has not updated since 2005. (5 injections and another in 3 months and blow the neuro. symptoms.

    I am fed up with feeling ill and am seeing a recommended private doctor this week. I haven't told my GP's yet but as the waiting time to see them is a month I have had no opportunity. I wonder whether to tell them at all?

  • Good luck with the private appt. My own personal experience is that I don't tell GPs about private appts unless I have to.

    I also don't tend to mention the names of any private doctors on the forum as something often comes along to stop them practising.

    Another website you might find interesting about chronic fatigue.

    doctormyhill.co.uk/

  • PS

    It is 5 weeks since my 5 loading injections so I guess there is no point in having the normal B12 test but would it help to have any others privately - eg Active - any suggestions and how do I go about it, do I have to ask the GP first?

    Thanks.

  • This link may be helpful.

    b12deficiency.info/b12-test...

    this link says that the active B12 test may be affected if you are already supplementing

    active-b12.com/frequently-a...

    See section "I am taking B12 supplements or injections – can my Active-B12 be measured?"

  • Thank you for the information. I have read it.

    It looks as if an Active test is no use at the moment.

    Do you think it would be useful when the 3 months since loading are up?

    As soon as i get the CT scan result I will get in touch with PAS.

  • Hi,

    I'm sorry I don't know. I'm not a medic. Perhaps the PAS can point you to some info on the Active B12 test? I think this test is mentioned in Martyn Hooper's latest book.

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