Im new here...looking for advice on diagnosis and treatment

Im new here.....So I have for a long time being borderline on iron deficiency anaemia, but recently had a below range reading for serum Vitamin B12 of 156ng/l (Reference limits:180.00-1000.0) and serum ferritn level of 8ug/l (Reference limits 10.0-300.0). However doctor hasn't given me any indication of retesting the levels, and just suggested taking over counter B vitamin Complex. I was referred to neurology in May 2017 and only just got my appointment through for January. This is for severe pins and needles in hands and feet and numbness/loss of feeling. I also experiencing depression and irritability. I have reoccurring ulcers in my mouth and feel completely drained. I have been complaining of the same symptoms for over a year now. I should also mention I have a sibling diagnosed with Pernicious Anaemia. I haven't been told about my Haemoglobin levels this time but they are usually bordering on low range. Now I have seen two doctors who have denied my symptoms are possibly due to my as they called it 'slight' deficiency. However a nurse I saw today for the ulcers and sores in my mouth said that all these symptoms were highly likely due to the deficiency and that the reading is low enough to be experiencing these symptoms. Can anyone advise best way forward. What treatment should I be offered here, and should I pin hope on neurologist appointment that the neurologist will pick up on this and do the relevant tests. In addition to the deterioration of my health and wellbeing I'm struggling to work as I have a very energetic job and self employed so its affecting me significantly. Any help suggested. If no luck I may pay to go private.

32 Replies

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  • Neuro symptoms and classic signs of B12 deficiency as well as low levels... you should be on B12 injections once every 2 days until symptoms stop improving. Chances of a GP sanctioning the appropriate treatment as per guidance appears slim. Many on the forum incl myself resort to self injection of purchased B12 ampules from Germany. I too am self employed and some days are very difficult. Good luck and I am sure others will offer some sound advice and support. Too many suffer because of ignorance from the supposed healthcare professionals.

  • Are there set guidelines I may fall under with the symptoms Iv reported to GP and below range levels. Is it worth going privately? Can I get the injections privately. If its case of money I am quite willing to pay as Iv had enough, the amount Im losing in work the injections will pay for themselves. Im worried about self administering without sufficient monitoring. Thanks for your reply :D

  • Are you in the U.K lc24?

    Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

    Weakness and fatigue

    Light-headedness and dizziness

    Palpitations and rapid heartbeat

    Shortness of breath

    A sore tongue that has a red, beefy appearance

    Nausea or poor appetite

    Weight loss

    Diarrhoea

    Yellowish tinge to the skin and eyes

    If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

    Numbness and tingling in the hands and feet

    Difficulty walking

    Muscle weakness

    Irritability

    Memory loss

    Dementia

    Depression

    Psychosis

    The British Society for Haematology guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

    google.co.uk/url?sa=t&rct=j...

    Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

    google.co.uk/url?sa=t&rct=j...

    It is also important that your Folate level is monitored as this is essential to process the B12.

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

    Symptoms of a folate deficiency can include:

    symptoms related to anaemia

    reduced sense of taste

    diarrhoea

    numbness and tingling in the feet and hands

    muscle weakness

    depression

    Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

    Your doctor should be treating your symptoms not just looking at the computer screen.

    If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

    I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

    Is your doctor aware of your sibling's P.A? You could ask to have your Intrinsic Factor tested for Antibodies. Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

    I'm not a medically trained person but I've had P.A. for over 46 years and I wish you well.

  • Yes I am in UK and yes the doctor knows of my sisters diagnosis because I told them when I got result of Vitamin B12 deficiency and they said it couldn't be that because it wasn't low enough. I will try seeing my GP with guidlelines as after reading up they have told me incorrect information in relation to diagnosis. Thanks

  • I assume that one of the replies below gives you a link to British Soc of Haem guidelines; they will help guide you. I went privately to see a haematologist as I was getting nowhere with the GP. Private jabs of B12 cost a fortune so you'd be better off going down the SI route. Like you I have some reservations about doing SI without monitoring but having stopped for a few weeks prior to another haematologist appointment I feel miles worse than when injecting. If you need the links on SI and getting the required stuff I can try and find a good thread if there isn't already one posted by someone else below. Good luck. This forum is a great source of help and support.

  • I think the diagnosis isn't being made due to it saying indeterminate B12 result on the lab report. What makes it indeterminate when below the reference value for that lab?

    156 cut off is 180?

    I have seen people with higher results on here being offered the loading injections on the NHS. If you get a dianosis through a private haematologist isn't the NHS be obliged to treat you?

  • It may be that the county you live in has different guidelines from the NHS ones. You can find county guidelines on the internet.

    Gloucestershire's are rubbish - very outdated. I believe Essex are bad too?

  • I am in Gloucestershire how did you know!

  • I guessed it could be Glos. by your rubbish treatment and the ranges the lab gave.

  • They tend to follow the bear minimum advised in my experience. You still have to fight and make several visits unless you're a lucky one with a pragmatic GP. Sadly the ha em didn't specify regimen; he just said "trial of B12 for at least 1 year". I think it took 3 visits to the GP before they agreed to try loading at least. If you have the energy and are up for a fight, keep trying. Otherwise SI is the easier option. I am still without diagnosis but the body doesn't lie - I was defo better while injecting twice a week.

  • No need to worry about self-injecting B12 . You can get information here .I had to resort to it when my GP would only let me have one injection every 3months .inspite of stmptoms returning soon after the injection. I managed to rescue my numb feet ( GPs diagnosis - ideopathic !) though they will never be 100% due to delay in diagnosis ( I had to go to private doctor for that ) and insufficient treatment . Cost ? About £1.00 per injection if you buy in bulk 100 of everything you need .:B12 ampoules from a German online pharmacy “ versandapo.de in English “ syringes, needles , swabs and sharps disposal box from “medisave.com “ Ampoules have long use-by date over 3 years . Think about it . B12 cannot be overdosed . Absolutely safe . You need proper instruction and a bit of courage . All the best !

  • The problem is I am below the lab guidlines for Vitamin B12 deficiency and still not being offered injections, doctors said just buy a Vitamin B complex vitamin so thats what I did, however I looked at the amount in the one I just purchased from a pharmacy and it says it only has 2.5ug. The doctor is aware of my pins and needles, exhaustion, and gradual onset of depression. I have a mouth full of ulcers and really dry but hes testing for diabetes, which is really highly unlikely with my obs. Its got so bad hes referred me to neurology as he said it can't be due to my 'slight' deficiency despite being 156. He said there must be another reason for it, hence the neurology referral. I am really worried this is going to become irreversible as I have been experiencing this for a year now, doctor referred me in May and only just got appointment through for Jan. What annoys me is the nurse totally disagreed with what the Doctors both said, so why differing opinions. I managed to get a print out of my results and it says

    Below Range

    Serum Vitmain B12 156ng/l (180-1000)

    Below Low Reference Limit

    Inderterminate B12 result. Please repeat with FBC after 3 months.

    Occasionally a false evelevated serum B12 result may be generated due to the presence of high titre Intrinsic Factor Antibodies. If there is high clinical suspicion of Autoimmune B12 Deficiency please request Intrinsic Factor testing and inform Haemotology Lab of clinical indication.

    May question is why is my result indeterminate despite it being below the low reference limit. Told both doctors that my sister has PA and one said its not hereditary and the other said it wasn't low enough to be PA. Why when their is reference values and the value falls below are you still not treated. Can supplements work just as good as injections as I have no hope.

  • One more thing... I was middle of their range which is why the GP didn't want to humour me that it could be a B12 issue. The haematologist said my symptoms were in line with a B12 issue and so advised on starting a trial for 1 year... sadly he didn't advise the GP on what regimen for someone with neuro and so hence the need for SI... the saga continues!

  • Thanks Rheadster....Im below range and they are still not treating, I give up.

  • Don't give up. Print out some of the information BMJ etc., on what treatment you should be given, by Sleepybunny and (throw) show them to your GP.

  • I’m pretty new here, so not as informed as others, but I too had a reading of 156 last week, I have a GP appointment on Monday. I have very similar symptoms, and I’m waiting for other test results. My GP asked for an Active B12 test too, which I’m told is a more secure test for understanding whether you store B12, mine came back as normal, yet the private tests I had the week before showed me as deficient.

    I would go back to your GP and ask him/her to investigate why it’s so low, I know I’ll be pushing for mine to follow the loading doses guidelines.

    Good luck 🤞🏽

  • Thanks Katie, I feel why the reluctance to give trail B12 injections to people who have a medical result of deficiency and clinical presentation of neuropathy, and see if it improves. Surely it will be cheaper then the neurology consultation, putting me on anti-depressants & throwing all sorts of other tablets at me for the symptoms.

  • Welcome to my world; I've been prescribed Prozac (Not even indicated for what the GP thought I said!), amytriptilline (neuro said the dose GP prescribed was subclinical), pregabalin (fair enough on that one as the neuro advised on that one yet the GP was still reluctant), steroid nasal spray, Sudafed, and latest was antibiotic based on "well I don't know what's up with you" (nurse practitioner). In the midst of that I managed to get some B12 but not as per guidance. It's a merry-go-round trying to get yourself treated to make you well again. It's a shame so many of us have to waste hours and hours trying to convince the health professionals on this relatively simple solution...

  • Hi lc24

    I didn't realise you had replied, sorry.

    (If you do the @ sign then the name, you will see the name for you to click on, then it alerts the person you are responding to - it took me ages to figure that out)

    I really don't understand why GP's are so resistant to 'giving it a shot' (or us a shot ;-) ) as it's inexpensive, and probably costs much less than our consultations with them. Also, it's not going to do harm, far from it.

    Pah, what do we know, only our bodies ;-)

  • My heart goes out to all the above respondents in your various struggles to get treatment.

    I remember I had an "indecisive result" from a "Schilling's" test in 1968 and had to wait another four years before my doctor bravely sent me for a second "unheard of" (according to the technician who recognised me from the previous one) "Schilling's" test in 1972 which came back positive for P.A. by which time I was a walking Zombie.

    The treatment I was offered then was to eat raw liver three times a day or have cyanocobamalin B12 injections every four weeks for the rest of my life.

    I chose the injections and am still "clivealive" and over 75.

    I wish you all well and bid you goodnight.

  • You are exactly where I was 3 months ago! We have very similar results and advice! I have left things for this space of time and just requested a re-test which has just been done. (Awaiting results) My doctor had told me I was in a grey area! At least you’re seeing a Neurologist. I’m sure he or she will recognise your symptoms. That has to be your next step. I too am nervous about self medicating and feel that it should be a last resort and you need to know what you are doing! Good luck.

  • Hi,

    "Told both doctors that my sister has PA and one said its not hereditary"

    I said a rude word to myself when I read the above comment. Have a look at links below.

    Risk Factors for PA and B12 Deficiency

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    With PA a possibility due to family history, probably worth joining PAS (Pernicious Anaemia Society).

    PAS

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone

    PAS can offer support and info about PA. PAS members can access details about PAS support groups. There is a support group in Gloucestershire.

    pernicious-anaemia-society....

    There are other forum members from Gloucestershire.

    More b12 info

    B12 Deficiency Symptoms

    pernicious-anaemia-society.... See Checklist PDF on right of page. i ticked all my symptoms on Checklist and gave it to GPs.

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Untreated b12 deficiency can lead to permanent neuro damage so I'd suggest talking to PAS. In some cases PAS can intervene on behalf of PAS members and at very least can pass on useful info.

    PAS news item about neuro consequences of PA.

    pernicious-anaemia-society....

    UK b12 documents

    I'd suggest reading all of these.

    BMJ B12 article

    bmj.com/content/349/bmj.g5226

    BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart makes it clear that people who are symptomatic for B12 deficiency in UK, should have an Intrinsic Factor Antibody test for PA and start B12 treatment. IFA test is not always reliable and it is still possible to have PA even if IFA result is Negative/Normal range.

    Have you had an IFA test?

    BNF British National Formulary Chapter 9 Section1.2

    If you're in UK, your GP will probably have a copy of BNF on desk.

    bnf.nice.org.uk/drug/hydrox...

    cks.nice.org.uk/anaemia-b12...

    There is a useful summary of mainly UK documents in third pinned post on this forum.

    Link about What to Do Next if B12 deficiency is suspected?

    b12deficiency.info/what-to-...

    Links about Blood Tests

    b12deficiency.info/b12-test...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    labtestsonline.org.uk/under...

    patient.info/doctor/folate-...

    patient.info/doctor/iron-de...

    B12 blogs

    Martyn Hooper's blog about PA

    martynhooper.com/

    Also an interesting blog about B12 on "B12 deficiency Info" website

    b12deficiency.info/

    B12 books I found useful

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

    Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy to my GPs.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    Unhappy with treatment?

    Link about writing letters to GPs about B12 deficiency

    b12deficiency.info/b12-writ...

    Point 1 is about under treatment of B12 deficiency with neuro symptoms.

    CAB NHS Complaints

    citizensadvice.org.uk/health/

    HDA patient care trust

    hdapatientcaretrust.com/

    UK charity that offers free second opinions on medical diagnoses and medical treatment.

    "doctor hasn't given me any indication of retesting the levels, and just suggested taking over counter B vitamin Complex"

    Oral b12 treatment is usually only given in UK if cause of low b12 is dietary deficiency. If diet has plenty of b12 rich food eg meat, fish, shellfish, dairy and eggs then diet is less likely to be cuase and it's more likely that there is an absorption problem eg PA, Coeliac Disease plus others. B12 injections are recommended in Uk for B12 deficiency due to absorption difficulties.

    More info on UK B12 treatment in BNF links and BSH Cobalamin and Folate Guidelines link.

    Have you had tests for Coeliac disease? See links below.

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

    nice.org.uk/guidance/ng20/c...

    My understanding is that anyone with unexplained iron deficiency anaemia should have tests for Coeliac disease...see NICE guidelines link above.

    Have you had a set of iron studies tests?

    labtestsonline.org.uk/under...

    Local Guidelines

    I believe Gloucestershire is one of the areas of UK that relies on local NHS B12 guidelines. Their guidelines have not been updated as far as I know, since BSH Cobalamin and Folate Guidelines were published in 2014.

    A search for "B12 Gloucestershire guidelines" should throw up a link,

    I am not medically trained. I wish you good luck with getting the help you need.

  • I just found this article which I will be takin to my GP, who seems to be open to research. It’s a very well respected journal. If your GP won’t help based on this, perhaps ask to see another in the practice. I got the “good GP” by asking around with friends and neighbours.

    fgs.just.edu.jo/DIC/ClinicG...

  • Hi Lc24, if it's any relief I am going through the same thing as you. My b12 was 131 ng/L and my doctor refused to inject me. (as always, he was rude to me) Since beginning of May (6 and a half months) I have been having weak hands, it was hurting to type, and text. I was waking up screaming because of the wrist pain and was falsely diagnosed with carpel tunnel syndrome. Recently the nerve pain spread to my feet and then entire body. (along with heart palpitations,confusion, dry mouth, sore neck). I started supplementing on b12 a month ago and most of these symptoms have gone away, except for some nerve pain but it has lessened! However my hands (fingers, wrists, arms) still hurt when I use them too much.

    Does anyone else experience pain in their hands/wrists? I mean not just numbness, but actual pain that's makes household chores difficult.

  • xiarei Hi I believe (someone smack me if I am wrong) that carpel tunnel is either a symptom or goes with B12 deficiency. I read it somewhere, sometime. I will try and find the reference.

  • My original test for b12 was 169 and they told me to take tablets, which i did for 16 months prior to going to a different doctor. My level was then 246 but i felt worse. I was told to continue tablets which i did for another 14 months. It wasnt until joining this forum that i read the laughing gas i had received during a dental appointment had possible deactivated the b12 in my system between those 2 tests.

    I started nearly weekly injections May 22, 2017. I felt better but still unwell. I had a melt down at my 3rd doctors office in August of 2017, when i demanded testing for h pylori.

    I was positive and i had no stomach pain, only nausea and feeling full quickly. After h pylori treatment, i would start to feel pretty good and then crash for some unknown reason. I finally figured out it was due to iron losses due to menstrating. It was hard for me to connect the two together because the crash wouldnt happen til day 2 or 3 of my cycle and my foggy brain was struggling.

    Your level of 159 is not slight! Please stop all suppliments 2 days prior to testing b12 because biotin is known to effect some lab testing methods and who knows what other suppliments might be revealed to effect testing in the future.

    If you get tested for h pylori, to rule it out as a cause of b12 and iron deficiency, only test when no antibiotics for 8 weeks, and no bismuth (pepto and tums) or proton pump inhibitors (prilosec, ect) for 2 weeks prior to testing.

    Your health can be regained. Take written info and another person with you to your dr appointments. Stand up for yourself, as the lack of treatment you are receiving is bordering on criminal, in my opinion.

  • Whats the next best thing to getting your levels up, without injections, whats sublingual treatment and I have heard people mention about patches? I have read all your replies, and will reply to them when I feel a little better, thank you :D

  • So the doctors asked for a PA test done and the labs automatically redone my serum vitamin b12 but no PA result. Has anyone else had this, its been a week apart from each blood test the first one was 156 and the next one is 214? When I asked the doctor why such a difference in a week he couldn't tell me. What I find weird is it usual for them to automatically redo my serum b12 with a Intrisic Factor Test, or have they done the wrong test. The GP definitely asked for a IF test not a serum vitamin b12 test as I saw it on the blood request form I took to the hospital where I got my bloods done?

  • Hi,

    "but no PA result"

    Are you waiting for IFA result? Or did the hospital not do the IFA (Intrinsic Factor Antibody test)?

    GP should know as I assume GP will be sent a copy of results.

    "first one was 156 and the next one is 214"

    Had you taken any B12 supplements between the two tests?

  • Yes I had taken Vit B12 oral supplements Sleepybunny, the only test dr ordered was Intrisic Factor as I saw it on the form, there was no request for my serum b12 to be done again, so I hope they are still doing the test, it was only a week from having it checked. So don't know why they did it again the GP didn't request b12 but If antibodies test

  • Hi again,

    "whats sublingual treatment"

    Sublingual means under the tongue tablets/lozenges. Some of the B12 in sublingual lozenge should get straight into blood stream as it does not have to go through digestive system first. I use sublingual b12 to top up between B12 injections...I seem to need huge amounts of B12 to keep most symptoms at bay.

    "Yes I had taken Vit B12 oral supplements"

    This link mentions the use of B12 supplements without a diagnosis of B12 deficiency can make it very difficult to get a diagnosis.

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    If you join PAS, you can access details of Gloucestershire PAS Support Group.

    pernicious-anaemia-society....

    With a sister with PA and B12 levels either below range or at low end of normal and symptoms that are associated with b12 deficiency, I am surprised you are not getting b12 injections.

    BMJ B12 article and BSH Cobalamin and Folate Guidelines (links in above post) make it clear that symptomatic patients should be treated, whether b12 is low or within range.

    I gave these to my GPs

    1) Copy of PAS Symptoms Checklist

    pernicious-anaemia-society.... See Checklist PDF on right of page.

    2) Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    3) Copies of BMJ B12 article and BSH Cobalamin and Folate Guidelines

    I'd suggest talking to PAS soon, they can point you to useful info about PA to share with GP.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    Neuro Consequences

    I hope your GP is aware of the possible neuro consequences of untreated or under treated B12 deficiency. Some forum members have pointed out the neuro consequences of under treated B12 deficiency to their GPs in letters or discussion.

    Letters about under treatment of b12 deficiency with neuro symptoms

    b12deficiency.info/b12-writ...

    PAS news item about Neuro Consequences of PA

    pernicious-anaemia-society....

    PAS article on SACD, sub acute combined degeneration of the spinal cord.

    pernicious-anaemia-society.... See Page 2

    Blog post from Martyn Hooper's blog that mentions SACD

    martynhooper.com/2010/09/21...

    More about blood tests

    Have you got results for ferritin, folate and full blood count (FBC)? There can be useful clues in FBC as to whether iron deficiency, folate deficiency or B12 deficiency are possibilities. See links about blood tests in my post above.

    IFA test

    If you get your IFA (intrinsic factor Antibody) test results back and they are negative. I hope your GP is aware that it is possible to have Antibody Negative PA (PA where IFA test result is negative or normal range). See flowchart link below.

    stichtingb12tekort.nl/weten...

    Is there any chance of your sister coming with you to next appt?

  • So my intrinsic factor antibodies test came back 'negative' and so GP said we therefore don't need to worry about PA, we can rule that out. Knowing what I know now, I think he is incorrect going by what is on the guidelines from the British Haematology and NICE, also I noticed my Folate level was greater than 20ug/l does anyone know why, is it linked. I now feel in a worse position than ever to get the right diagnosis and treatment, I have pins and needles increasingly and worry about my appointment with the neurologist as is he actually going to be clued up about Vit B12 deficiency or is this going to lead to a misdiagnosis. If the doctors agree its only a Vit B12 deficiency and not PA, I eat meat every day and dairy products, in fact I eat a lot of meat, how do they explain why I am deficient in both Iron and B12? What are other causes of B12 defiency. My Ferritin was 8ug/l reference (10.0-300). I have taken Iron Tablets for years and its gone down not up. Should I wait until the 18th Jan for Neurology or book a private GP appointment? Is others experience of neurology lead to the right help?

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