Advice needed please - docs tomorrow following supplementing but still have symptoms

Looking for advice before I meet my doctor tomorrow please - I had a blood test 7 months ago due to dizziness and discovered B12 at 182. The doctor told me to supplement and come back 6 months later for another test. I've been taking Jarrow (Methyl 5000), thanks to this site, once a day, and latest results show my count now above 1000.

However I'm concerned about my symptoms and wanted to check with you all that you think they are consistent with B12 deficiency. If you think they are then I'm looking for advice re how to tackle the doctor and what tests I should insist on having please.

Most noticeable symptom is slight numbness in my hands. They don't quite feel like mine anymore. If I'm anywhere even slightly cold it gets worse and takes me hours to feel like I won't drop things. This has definitely got worse despite the supplementing and increased blood count.

I also have a similar feeling with my mouth/lips. They almost feel slightly swollen but I think it's just a slight loss of feeling. Again comes and goes but seems more noticeable if I'm tired.

Finally, and most worryingly, I'm simply having 'blank brain' moments when I go to do something I usually do without thinking and suddenly can't work out what to do. Or daft/worrying moments when I put post in the bin not the postbox or drive off when sat at red traffic lights.

Any thoughts very welcome on what might be wrong with me and how I should approach the doctor. Is there a particular document that identifies these symptoms and talks about blood count being deceptive that I can print off that will aide my fight?

Thanks in advance, Sue

14 Replies

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  • Hi,

    Looked back at your old thread on forum. I'm surprised that GP suggested supplementing but not injections. Has GP ordered an IFA (Intrinsic Factor Antibody) test which can help to diagnose PA? people can still have PA even if IFA result is negative (called Antibody negative PA).

    B12 deficiency testing

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    I think it's possible that GP will look at your high level and assume you have no problems with absorbing B12 and may be reluctant to consider injections. If you are taking sublingual (under the tongue) B12 that is a route directly into bloodstream which will not show whether or not you have an absorption problem in the gut.

    What does GP think caused your low B12?

    b12deficiency.info/what-are...

    Link below is to a UK b12 document which I highly recommend reading.

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

    stichtingb12tekort.nl/weten...

    Flowchart above makes it clear that in UK, people who are symptomatic for b12 deficiency should have an IFA test and start initial B12 treatment. This applies whether B12 is low or within range.

    Other b12 info

    My experience has been that many doctors are not as well-informed as they could be on B12 deficiency so I think it's helpful to read up about B12.

    1) BNF

    Link about UK b12 treatment

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

    Treatment info is also in BSH Cobalamin guidelines

    2) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    3) Pinned posts on this forum

    4) PAS website

    pernicious-anaemia-society....

    5) B12 Deficiency Info website

    b12deficiency.info/

    6) b12d.org

    b12d.org

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

    8) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart

    Are you symptomatic?

    "Is there a particular document that identifies these symptoms"

    pernicious-anaemia-society.... see checklist

    b12deficiency.info/signs-an...

    Who gets PA?

    pernicious-anaemia-society....

    PAS

    Have you considered talking to PAS? They are helpful and sympathetic and a good source of info. There are leaflets etc that can be printed off (for some you have to be a member of PAS. PAS might be interested in hearing that your GP told you to treat yourself.

    PAS tel no +44 (0)1656 769 717

    test Results

    I always get copies of all my blood test results. I learnt to do this after being told everything was normal and then finding out there were abnormal and borderline results on teh copies. It's very useful to find out what the "reference ranges" are. You mention a result of 182,. Was this below the ref range for B12 in your area? If you get a copy of results it should include ref ranges

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

  • thanks very much - I'll try to print off as many links as I can and take them with me tomorrow.

    I'll also ask for written copies of my previous and current blood tests.

    I don't remember what they said about ranges re my 182 result - think she said bottom end but ok.

    I agree I'm expecting a 'you're ok go away' chat but will try to push for further tests or a referral.

  • Ask for a referral to a neurologist about your numbness.

  • thanks, good suggestion.

  • Perhaps you can ask for an IFA ( Intrinsic Factor Antibody) test if you haven't had one before?

    Access to UK medical records

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    Although some surgeries may offer online access to a summary record, it is a summary and therefore may not have all your medical info.

    Some people on forum have asked for a complete set of medical records, can be very interesting to see what doctors have written about their patients in past......

    nhs.uk/chq/Pages/2635.aspx?...

    "I agree I'm expecting a 'you're ok go away' chat "

    Some people with GPs who are not as helpful as they could be, put their concerns, test results, extracts from relevant b12 articles etc into a letter before next appt.

    My understanding is that letters to GPs have to be filed with a patient's medical notes so are a record of issues being raised. I also think it's sensible to keep copies of any letters sent.

    Link about writing letters to GP about B12 deficiency.

    b12deficiency.info/b12-writ...

    fbirder has compiled a useful summary of B12 documents. Link to summary in third pinned post.

    Good luck with your appt.

  • thanks for your support - I'll let you know how it goes....

  • I Would get tested for Lupus they sound similar to the symptoms of that with the numbness in the fingers and also may be worth asking to be checked for antiphospholipid syndrome you may have the chronic version. Hope you get it sorted

  • thanks Becky, don't know either of those conditions so wouldn't have thought to suggest them. I'm going to go in all guns blazing.....

  • "don't remember what they said about ranges re my 182 result - think she said bottom end but ok.

    Recent emphasis has been on the importance of treating symptoms not just looking at serum b12 levels.

    See 5th summary point in BMJ B12 article, see BMJ link in above post and flowchart from BSH Cobalamin and Folate Guidelines

    It's possible to have severe B12 deficiency with a normal range result.

    b12deficiency.info/b12-writ...

    Have a look at NEQAS B12 alert mentioned in above link.

    Some people have what is called a Functional b12 deficiency. there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

    nhs.uk/Conditions/Anaemia-v...

    Case studies

    Some of these are people who had "normal" serum B12 levels.

    1) b12deficiency.info/case-stu...

    2) More case studies in "Could It Be B12" book by Sally Pacholok and JJ. Stuart

    3) B12 Awareness website (USA website)

    b12awareness.org/testimonia...

    4) Martyn Hooper's book "Living with pernicious Anaemia and Vitamin B12 deficiency" has several case studies.

    5) Martyn Hooper's blog may have relevant stories

    martynhooper.com/

  • Hi - I had bloods taken just over 3 weeks ago as I've had some worrying symptoms for several months (some of them for more than 18 months). I've had fibromyalgia for 9 years but these are additional, newer symptoms - I didn't seek help earlier because fibro symptoms can be similar.

    My newer symptoms are nerve pain from my elbows to my hands (like the feeling when you knock your 'funny' bone, but constant), making my hands tingle, causing my fingers to feel numb and my hands weak. I've started dropping things and picking up something like my iPhone from a table is difficult. I have numb toes. I also have tinnitus, dizziness, palpitations and racing heart - these symptoms come and go but if I have a racing heart with dizziness I check my blood pressure and it's always high (last evening at 6:00 pm it was 189/96 with a heart rate of 95 but I'd done nothing all day but rest on the couch).

    The overwhelming and constant symptom is utter exhaustion, like nothing I've had before. It's come on quite gradually but the exhaustion is so bad now that I can scarcely do anything.

    I, too, have had some very worrying 'blank brain' moments. For instance, last December, I joined Amnesty International online. To do that, I had to give my bank details so that I could make a regular monthly donation. I received a 'thank you' message and then a 'phone call but I had no recollection whatsoever of having done it. None at all, and I still don't. (Should be called Amnesia International!). There have been many other similar instances since but mainly things like repeating myself, forgetting what I've said or been told, and forgetting appointments. I have to be really careful and write everything down now.

    I've had numb lips and mouth too, not constant, but when I do it feels like the wearing off of a local anaesthetic. I didn't pay too much attention to it until now.

    I've been putting everything down to stress (it's been a hideous few years). I'd not long been fobbed off with anti depressants by a different doctor (which I never took). I don't know what made me go back two weeks later to a different, younger, female GP but thank God I did.

    When I went to see her I expected and wanted to be referred to a neurologist, and was quite cross when she wanted to arrange blood tests first, including B-12. I went for the results this week and was told that my last lot of blood tests (about 18 months ago I think) showed that my B-12 levels were borderline low but that now they're too low. I wasn't told what the readings were, but I have to go for my first B-12 injection next Tuesday, so I'll ask the nurse then. I have to have a second injection a month later and then it'll be every 3 months after that for life, but I'll be closely monitored.

    Your symptoms seem very similar to mine - I'm new to this disease, but I think you should seek a second opinion. This is too important to ignore or leave untreated if you do need treatment.

  • Hello, thanks for the reply. Some of what you describe is exactly what I'm experiencing.

    Sadly the doctor has ruled out B12 as she says all the other indicators in my blood test are ok. She's asked me to try treatment for raynaulds initially but has agreed that if after a few weeks it's not working we will try something else.

    If I'm honest I fell into the 'don't be a nuiscance' zone and just agreed and walked away. I forgot to ask for a hard copy of my blood tests so if I don't feel better soon I'll go back and ask for copies and post here to see if anyone has any ideas.

    The doctor talked about the size of my red blood cells. She said they looked fine and I was surprised she could see that. She basically baffles me with science.

    I really don't mind if it isn't B12 related I just don't want my symptoms to worsen.

  • Hi Sallyatch,

    This is Sbunyan's thread but something in your post concerned me.

    Numbness, memory problems, tingling, weakness etc. would normally be considered neurological. You mention injections every 3 months. In UK, this is standard B12 treatment for people with b12 defic. without neuro symptoms.

    In UK, people with B12 deficiency with neuro symptoms are supposed to have loading injections every other day for as long as their symptoms get better (this could mean loading injections for weeks even months) then injections every 2 months.

    See BNF link below, BNf Chapter 9 Section 1.2

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

    Inadequate b12 treatment where there are neuro symptoms could put someone at risk of permanent neuro damage including spinal cord damage.

    Are you in UK?

    If yes, I'd strongly recommend reading "BSH Cobalamin and Folate guidelines"

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

  • I had alot of those symptoms years ago and the doctors put it down to an border line under active thyroid... a year or so later they started more tests and believed I was healthy etc but due to my mother having angina they put it down to that as well 😑more months down the line and trips to the hospital with occasional acute dizziness, palpitations, shortness of breath, shivering, concentration and actually going out and being social the doctors then thought I was crazy they done tests to see if I was depressed and obviously I was in wasn't sleeping because of the pains etc and fearing panic attacks 😐 so they said they would trial ne on anti depressants which I didn't take because I knew for a fact I wasn't depressed because of an action or being. More tests down the line another doctor done blood tests and said I was low on foliate so they supplemented on foliate twice daily (5000mcg)and max b complex 4times a day, later to find out that the folate would evermore reduce my b12 stores...More tests later on 2 years ago after seeing a uni/trainee doctor at my local doctors he said all my symptoms co-aline with the symptoms of pernicious anemia but wanted to do extensive tests but wanted to trial the b12 injections and literally within 30mins my heart rate had reduced and I felt calm and relaxed after my loading dose ever 3months but because I wasn't supplementing folate I wasn't repairing the damage caused by having low b12/folate. I am now supplementing folate and waiting for injection in may every 8 weeks now. I feel normal and able plus now I'm cycling 20+miles a day and walking distances I never thought I could 🖒. Just keep hassling your doctor 😂

  • Glad you're making progress. At least the door is open for me. And worst case I can go down the self injecting route or going private. I realise from this site that the one thing I mustn't do is ignore the symptoms and hope it'll go away.

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