Newbie advice needed urgently

I am a 42 year old female and over the past 10 years I have had many health problems. Mainly balance/severe tinnitus/extreme fatigue/buzzing in legs/brain fog/memory problems etc. New symtoms are lower thigh completely numb and hip pain to the point it is absolute agony to walk. Also nerve pain in toes and burning toes.

I have had 3 Mri scans that were normal and a recent one two weeks ago that was "essentialy normal" whatever that means. Previous diagnosis of optic neuritis, Menieres disease and BBPV which balance rehabilitation couldn't fix. Therefore audiologist suspected "central problem"

Only ten months ago did my GP decide to check my B12 and thyroid. Results were borderline low thyroid and low B12. Nothing for thyroid but given colbalmin tablets and folic acid for one month. B12 retested one month later and was normal.

Because of worsening symtoms I was referred back to neurologist who sent me for another MRI on 28th December 2016 which was the "essentially normal" result. Bloods done were normal apart from Low B12 again. Nothing given and told to get them repeated on 28th January 2017.

I can barely put weight on my left leg as my hip is so painful (doc gave me naproxen but symtoms returned as soon as they finished) refusing to giveme anything else as I refused co codamol. NOTE* I am not on ANY medication whatsoever, not even paracetamol. I am extremely exhausted 24/7.

If the B12 comes back as normal do I accept this or can I request more test for it or should I just go ahead and take B12 supplements myself.

I am not a vegetarian or vegan but do have family history of B12 deficiency (which my gp is aware of) my great grandmother died of complications of pernicious anemia at my age and both my grandmother and great aunt get B12 shots monthly.

12 Replies

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  • Wow lorrilang does your doctor know of your family history with P.A? That alone should alert him/her to test you for it.

    I'm not a medically qualified person but there are others on here who will be able to give you good advice and I wish you well.

  • Thanks for your reply. Yes I have informed the GP of the family history. Unfortunatley we get a different GP everytime I go. They kept sending me to the Neuro as they suspected MS but that has been ruled out.

  • Hi lorrilang. Gp's often say that serum B12 levels are normal when they are not. Bumping along the bottom of the scale is often not good enough and it is possible to have B12 deficiency even if you have apparently 'normal' levels of serum B12.

    Please don't take any supplements for now - this will raise your levels enough to make your GP even more reluctant to treat you but not enough to effect proper repair if you do have a deficeny.

    I'm really surprised that you have not been treated with B12 injections, given your neurological history with no other apparent cause.

    If you are able to give your actual blood results and the reference ranges it will be easiier to give proper advice. You can get these from your surgery if you don't have then - it's your right to ask for these. The receptionist can give them to you over the phone or (perhaps best - bacuase you'll have your own record) you can ask for print outs (get them for all blood tests, including FBC - if they've done one). Also ask if they've done folate, ferritin and vitamin D - they should have done. And anti-IF antibodies (with your family history, it's one of the first things that should have been done).

    In the meantime, if you read the PAS pinned posts to the right of this page when you log on - or at the bottom of the page if using a phone - they will give you lots of information about the diagnosis, treatment and guidelines relating to B12 deficency and PA. I think you'll see that your GP is wrong not to treat you. Especially in view of your family history of PA.

    There are more tests you can ask for but I'd prefer to speak about these once you have provided your blood results (and because I came to your post late tonight and I'm out of time). Just include whatever results and reference ranges you have by reply to this reply...if you see what I mean 😀

    Please don't worry for now...we can help you with information that you can use to try and get your GP to treat you...

    👍

  • There's not much that I can add. Foggyme has given you so much help . Just want you to know how sorry I am that you are in this position . It's amazing how ignorant doctors are about PA . All the tablets in the world won't help if you have PA . They will only shoot up the blood serum levels, but the B12 will not get to where it's needed - your cells . You must ask for a blood test for Intrinsic Factor antibodies, which is what PA patients have , preventing absorption of B12 . This test is not reliable ( only about 50 %) Buf if you test positive you have PA , if not you can still have PA . There are more reliable test but there isn't one that's 100%. I tested positive , but could not get adequate treatment . So now I self inject , and have recovered my health more or less 100% Self injection( cost about £1 for ampoule, needle, syringe and swab ,if you buy in quantity ) is a last resort obviously . Some people do manage to get good treatment , so don't give up hope . If you need to go down that road, you will get help here . You have taken the best step by coming here . There is no end of help on this site for you . Join the society and read our Chairmans books on PA. (Martyn Hooper who has just been awarded the MBE for his services to PA ) You can get the books on Amazon .

    Wishing you all the very best . Keep in touch !

  • No more advice I can add that isn't there already. . But wow that's an incredible story. Please keep is updated x

  • "Yes I have informed the GP of the family history"

    Have you considered putting it in writing? Things said in a consultation may get forgotten.

    I'd suggest speaking to PAS (Pernicious Anaemia Society). They can sometimes intervene on behalf of members by writing letters and can point people to useful info.

    pernicious-anaemia-society.org

    PAS tel no +44 (0)1656 769 717

    There is an article on PAS website about family links in PA

    pernicious-anaemia-society....

    Other sources of B12 info

    1) BSH Cobalamin and Folate guidelines

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate deficiency" should be on page 3 or put "cobalamin and folate guidelines" in search box.

    Link below to page in BSH Cobalamin guidelines. Mentions when an IFA (Intrinsic Factor antibody) test should be ordered by GP/consultant.

  • stichtingb12tekort.nl/weten...

    2) BNF (British national formulary)

    evidence.nhs.uk/formulary/b...

    3) Pinned posts on this forum.

    4) BMJ B12 article

    bmj.com/content/349/bmj.g5226

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

    6) Book "Could It Be b12" by Sally pacholok and JJ. Stuart

    7) B12 deficiency Info website

    b12deficiency.info/

    8) b12d.org website

    b12d.org/

    I gave the following to my Gps after yeras of typical b12 deficiency symptoms

    1) Copy of BSH Cobalamin and Folate Guidelines

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

    3) the PAS Symptoms Checklist with all my symptoms ticked and any extra symptoms added to list.

    pernicious-anaemia-society.... click on Symptoms Checklist

    Other b12 deficiency symptoms lists

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thank you sleepybunny. I will certainly have a good read at all of this. Every time I have mentioned to the GP about my family history they dismiss it. So I will insist on them listening to me. I am not due to see my neurologist again until July so I will beg my doctor to listen as I cannot go on like this. I went from going to the gym daily till I was too exhausted to cycling until I lost my balance and up until recently some gentle walking now I cannot even do that. All my test results that have shown something seem to be being ignored and the GP for some reason cannot connect the dots and see that my B12 has been the probable cause all along.

  • "Results were borderline low thyroid and low B12. Nothing for thyroid but given colbalmin tablets "

    The flowchart I gave a link to above (link also in third pinned post on forum) makes it clear that anyone who has low B12 or is symptomatic for B12 deficiency should have an IFA(Intrinsic Factor Antibody) test.

    It's possible that your GP is unaware of the "BSH Cobalamin and Folate Guidelines" which came out in 2014. I gave a copy to my GPs to make sure they knew about them.

    Your GPs may be following local NHS B12 deficiency Guidelines. Some of these local guidelines have not been updated since the BSH Cobalamin guidelines came out in 2014. Looking at the local NHS B12 guidelines in my area helped me to understand why I had not received the treatment I expected.

    Local B12 deficiency guidelines for your NHS area may be found by an internet search, a search on local area NHS website (perhaps under haematology guidelines), a FOI (Freedom of Information request to local NHS website, MPs may also be able to help.

    The symptoms of thyroid disease and B12 deficiency overlap so it may be worth starting a thread on Thyroid UK forum on HU with your thyroid results.

    Untreated or inadequately treated b12 deficiency can lead to permanent neurological damage including Subacute Combined Degeneration of the Spinal Cord (SACDS). There is a leaflet in library section on PAS website about SACDS which is available to PAS members.

    pernicious-anaemia-society....

    A link to Martyn Hooper's story on his blog. Martyn Hooper is the chair of the PAS.

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

    It's also possible to have more than one cause of B12 deficiency at a time.

    b12deficiency.info/what-are...

    My understanding is that letters to GPs have to be filed with your medical records so are a record of issues raised.

    Link below about writing letters to GPs. Don't think it mentions BSH Cobalamin guidelines which I do mention if writing about B12.

    b12deficiency.info/b12-writ...

    Unhappy with treatment?

    citizensadvice.org.uk/healt...

    HDA patient care trust

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

    hdapatientcaretrust.com/

    Neurological Symptoms

    Menieres disease and BBPV which balance rehabilitation couldn't fix. Therefore audiologist suspected "central problem"

    Did the neurologist carry out a romberg test? Its a balance test.

    Proprioception

    Not sure about exact meaning but I think it's awareness of your body in space

    Did neurologist ask you to do any tests with your eyes closed. Have a search on this forum for posts about "proprioception". One cause of proprioception problems is b12 deficiency.

    I used to lose my balance if someone walked directly towards me because I lost sight of my surroundings and I had periods when I bumped into doorways.

    patient.info/doctor/vertigo

  • Yes I got several tests at the vestibular rehabilitation clinic. I struggled to balance when the fake floor was moving and couldn't physically stand up when asked to close my eyes I kept falling backwards. the dix hallpike manouveres with the goggles on showed I had bppv and both sides were affected, nystagmus also. They tried five eply manouveres and all failed. so I was told to trot off back to my neurologist as they couldn't help me as they suspected it must me a central cause. so even with positive test showing clear problems with my balance the fact that the MRI is essentially normal then its as if that's that then. Please excuse my spelling and grammer but the brain fog I'm having is horrendous.

    PS. I am getting my B12 retested tomorrow and an appointment withmy gps surgery on Tuesday to discuss the results, alas it will be a locum doctor as an actual appointment with one of my usual GP is not possible until three weeks away.

  • It could be that you need an active form of b12 called methylcobalamin ( best in spray form ) . Spray under your tongue at least four times per day and in about a month or so start taking methylfolate ( rather than folic acid ) . I have been mocked for suggesting this but try taking a t-spoon of blackstrap molasses ( for b6 iron and trimethylglycine ) . If you add in some COQ10 and a t-spoon of omega 3 you will crack this . Just try it for a month and you will see the difference .

  • Hi

    Foggyme has given u good advice.

    You need to maintain the B12 at the higher level, not just take for - month. Ofcourse your blood test will show normal because you've been taking B12 for a month. (Silly Doc).

    It's not your fault but GP's don't want to hear when it comes to B12, they are not well informed when it comes to B12.

    When you stop supplementing your levels drop quite quickly and to benefit from B12 you need to stay in the high range over at least 6 to 12 months so your body can use it to repair or rid of the symptoms.

    If u supplement yourself the blood tests will always show normal so like Foggyme said it's best not to at the moment.

    You need to push your GP, which everyone with B12 defficiency knows is not easy at all. Also your Vitamin D levels should be kept at the high end as from experience low Vit D can give u severe bone pain like u r saying about your hips.

    You're going to need to gather some information about B12 and persuade your GP to keep your B12 in the high range. You need to put up a fight.

    I don't think you have B12 absorption problems so to supplement yourself orally is not a problem but I think should be your last resort.

    The most important thing is to maintain it at high level and it should help a great deal. You will also need to supplement with Folic acid whilst on B12.

    For some people it's for life, like me but you just have to do it.

    My previous GP who was very helpful has retired and is replaced by a GP who's a nightmare(the least I can say).

    He doesn't want to know about my B12 although I was previously on regular injections with last GP. It's a nightmare and I just want to wake up from it.

    I'm going to try and push him for regular injections otherwise will need to buy the B12 and learn to self inject. What else can be done.

    Wish you all the best.

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