Desperate!

After 18 months of significant symptoms of B12 deficiency taking metformin, having hypothyroidism and asking my GP if they would draw blood so I could send them away and pay private she agreed to a vitamin B12 test. This was on 4/4/17. I called for results on 7/4/17 and told my B12 was 132 and to make a routine appointment. Thinking nothing off this I said I was due to see GP within the next 2 weeks which was about the earliest time I could get a "routine" appointment. Over the weekend I checked what the normal levels were and was horrified to find out how significantly​ low my levels were bearing in mind I was very symptomatic extreme fatigue, brain fog, having difficulty with my speech and a noticable deterioration in my cognitive abilities, developed a swallow problem that I had an endoscopy for.

As you can imagine I was furious and I called the gp first thing Monday morning last week to be told the GP had noted a routine appointment only and the first available appointment was 19/4/17. Too exhausted from battling with my symptoms and the treatment I was getting I had to put the phone down. I managed to compose myself and called back demanding I be seen. 2 minutes later a GP called me saying he wasn't aware of the results and I needed to go in. In tears I reiterated how poorly I had been feeling, the symptoms I had. I was having a brain MRI later that day for a suspected prolactininoma and the GP didn't think it advisable to start my injections until the next day. Aware of the BNF and NICE guidance I expressed my unhappiness that I had been told to make a routine appointment and that given my levels of 132 ( folate was 3) and that heamatology advice should have been sought as well as immediate injections given I had nurological symptoms.

I had my first injection last Tuesday and a second on Thursday. GP spoke with me advising he had contacted the heamatology department and that I was to be prescribed folic acid for 4 months in addition to injections and tested for coeliac disease. I was also told the surgery was closed for Easter so my 3rd injection would be Tuesday next week, 5 days after my second injection. Feeling very poorly, racing heart, pins and needles etc I called nh24 to ask if I could attend the local out of hours to have my injection to be advised 5 day Gap is ok and if I felt I needed B12 to buy it at the chemist until my next injection! Last night I felt I was dying I could feel my pulse all over my body including my head and lips and my pulse was faster than normal 80 rather than the usual 65.

Am I being unreasonable in thinking I need this injection? I feel like going to A&E

13 Replies

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  • You certainly are not being unreasonable Indi40 as the guidelines state that loading doses should be every other day until there is no further improvement in your neurological symptoms.

    However I must "warn" you that it is not uncommon for some symptom to appear to get worse before they get better as the B12 starts to repair the damage done to your nervous system.

    You are now at least on the right track to recovery with the injections and folic acid and well done for fighting your corner with your doctor.

    Open the NICE link below, click on "Scenario Management" and scroll down to

    Treatment for B12 deficiency

    How should I treat a person with vitamin B12 deficiency anaemia?

    "For people with neurological involvement:

    Seek urgent specialist advice from a haematologist.

    Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

    Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months".

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

    This is in line with the BNF guidelines so your doctor has at least two points of reference telling him what to do.

    I'm not medically qualified but one who has had P.A. for 45 years.

    I wish you well and a good recovery

  • Hi Indie40 and welcome.

    I can certainly understand your concern about getting treatment as soon as possible in view of your symptoms, low serum B12 levels and hypothyroidism.

    It is actually good that they started the loading doses last week rather than leaving them until after Easter, but a five day gap is not likely to be critical. In some countries, for example. the loading dose routine is weekly injections rather than every second day. I am not suggesting that you are being unreasonable in wanting your next injection, but I doubt that A&E would necessarily see it as critical.

    (Please be aware that I am saying this from the other side of the world - New Zealand - but I have lived in the UK and your system is similar to ours here, and I believe that a B12 injection would be triaged as very low priority by A&E here at least.)

    However, I say that with one caveat, because I am a little concerned that you are feeling your pulse rate is up significantly. You have obviously had a lot going on what with MRIs, endoscopy etc, all of which may have contributed to an increase in your stress levels and pulse rate. The increase in pulse rate alone could be a reason for visiting A&E if you are really concerned about it, particularly if you have any cardiac issues such as high blood pressure etc. In addition, in very rare cases, people can have a reaction to the injections. So I am not trying to scare you, but you know your body better than anyone else so are the one best to decide whether you should go to A&E. Just be aware that they may attribute to the increase in pulse rate to the injections and suggest that these be discontinued or reduced in frequency, for example.

    I hope that the above helps a little. Because it presumably is early morning on Easter Sunday in the UK with the UK experts on this forum probably enjoying a lie-in or off to church etc, I wanted to reply quickly to you because of your concern. Hopefully you will get some good advice from the good UK experts here in the next few hours. In the meantime, I will be thinking of you.

    PS - I now see our great CliveAlive is up and at it already with some good advice.

  • Hi Indie40. I agree with both clivealive and Deuto. Whilst you are not unreasonable in wanting your every other day injections, the small delay over Easter will not cause you damage - the two you've had will already be raising your B12 levels and although B12 levels are no indicator as to the efficacy of treatment...it does mean that you're starting to go in the right direction, in terms of beginning to address the deficiency.

    And good that you have be prescribed the folate - B12 and folate work together so if folate is deficient or too low in the range, the body cannot utilise B12 properly.

    Because of your neurological symtpoms, after your 6 loading doses, given on alternate days, you should stay on alternate day injections until no further improvement. This is called the neurological regime - and many GP's do not know about this (hopefully your GP does πŸ˜„). I see you have already stood up to your GP, with good effect (well done you) so,will be prepared to carry on fighting your corner, if the need arises (when I've finished this reply, I'll leave some links that will contain information about treatment regimes).

    I expect your feeling very ill at the moment so I don't want to overload you with too many words...just wanted to reassure you that things will begin to get better soon. As Clivealive says, sometimes symtpoms appear to get worse before they get better - part of the repair process that is beginning to take place.

    A thought - people with B12 deficency often have absorption problems which can cause other deficiencies - iron deficiency being one. Feeling the piles all over the body (and sometimes in the ears too) can also be a sign of iron deficency anaemia, which often accompanies B12 deficency. Might be a good idea to ask your GP to test your ferritin levels next time you go (ferritin is one marker for Iron deficency anaemia).

    About your pulse rate - 65 is what's called a resting rate and 80 is not high (though it. Ight feel like it to you πŸ˜–). It might even go up further on exertion - 120-130 or higher would not be unusual, especially if you have iron deficency anaemia. What would be of concern is if it was higher than this in the resting stage, and didn't come down.

    As you currently describe your symptoms, unpleasant though they are, I'm not so sure that a visit to A & E would be of any benefit...that is, unless anything changes or you feel your health is getting worse.

    Also - it's unlikely that A & E would hold stocks of injectable B12 (never did when I worked there, but things might have changed).

    The helpline advice to buy B12 tablets from the chemist is nonsensical!

    Everybody here will recognise that awful feeling that your body is dying...it's dreadful and frightening...but as treatment progresses this will get better...so hang on in there and know that there will be light at the end of the tunnel.

    I'm going to leave some links with information and guidelines about B12 deficency and it's treatment. The links also contain 'myth busting' information that will help you with your GP if he is one of those who know little about B12 deficiency (there are a lot of them about - unfortunately πŸ˜–). Might look like a lot of reading, especially when you're feeling so ill, but don't worry, most of the documents are one page long and the one slightly longer in has summary sections if you can't face the whole thing right now.

    There a lots of lovely people here who can help and support you so please post as often as you need to - B12 deficency can be quite complex so it's always good to have somewhere to turn to πŸ˜„.

    Take care, be kind to yourself, and take it easy until your health begins to pick-up πŸ˜„.

    Oops...lost my links...will dodge of to fetch them and post in a new reply (if I leave this page before posting, this reply will disappear πŸ˜–πŸ™ƒ).

  • And here's the links (print and read at your own pace πŸ˜„):

    LINKS TO INFORMATION AND GUIDELINE

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is β€˜In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)

    gov.uk/drug-safety-update/n... (B12 & Nitrous Oxide Contraindicated)

    πŸ‘

  • Hi,

    More B12 information

    1) PAS (Pernicious Anaemia Society) website

    pernicious-anaemia-society....

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

    Martyn Hooper's blog about PA and B12 deficiency

    martynhooper.com/

    2) B12 Deficiency info website

    lots of B12 info and an interesting blog

    b12deficiency.info/

    3) b12d.org website

    b12d.org

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Up to date with current UK guidelines.

    Martyn Hooper is the chair of the PAS. He has written two other books about PA and B12 deficiency. I also found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" helpful as it had several case studies.

    5) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies. Reading this book was a light bulb moment for me.

    6) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    7) Pinned posts on this forum.

    I found it helpful to read fbirder 's summary of mainly UK B12 documents. Link to his summary in third pinned post. Lots of useful quotes which can come in handy if faced with a doctor who lacks knowledge about B12 deficiency.

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

  • Many thanks for your kind words and reassurance.

    I contacted nh24 again and fought to get my third injection which was given this morning as I had my labelled prescription.

    For me no one in this day and age should have to fight to get appropriate medical support as I said to my GP this week I've not only had to battle with the symptoms of B12 deficiency for over 18 months I've had to battle with the surgery to have my symptoms acknowledged. I can honestly say I wasn't panicking last night but know the importance of preventing further neurological damage and my body was under strain. My dad died of aplastic aneamia that had gone undiagnosed and untreatable by the time it was.

    Thanks for all the links and I will definitely work my way through it........Much appreciated πŸ˜€

  • Hi Indi40. Excellent news...well done for persevering...good job you had a prescription handy πŸ˜„.

    Sadly, all here know only to well the hard battle many face in dealing with B12 deficency - the lack of knowledge most doctors have is truly frightening - and the hostility many face is truly dreadful.

    I'm so very sorry to hear about what happened to your Dad. The idea of the NHS being the best medical system in the world is a fallacy that really should be challenged. Just because it's said, doesn't make it true πŸ˜–.

    Trouble is, the people who espouse this opinion rarely have to rely on it - or get preferential treatment when they do (imagine a high profile politician having to queue for treatment in A & E, or having symptoms rudely dismissed by an over-worked or ill-informed GP). Sorry....mini rant over...

    Hope you continue to improve, let us know how it goes, and post again if you need more support...or just want to chat to likeminded deficients πŸ˜„

  • I'm so glad I found this site only sorry I didn't know anything about vitamin B12 when I was diagnosed with chronic fatigue in 2008. I will certainly do my best to raise awareness I'm more determined than ever!

    Many thanks 😁

  • Know what you mean Indie40. I was variously diagnosed with CFS, ME, fibromyalgia, depression (ha) over the years (no hands on examination, no tests, no treatment).

    Turns out I've had an underlying autoimmune condition all along (now diagnosed and awaiting treatment)...0h, and, B12 deficency.

    Love the determination...good for you πŸ‘

  • I should have said my B12 serum level was 132 pg/mLl equivalent to 97.4 pmol/ L that might explain my urgency not to wait 5 days between injection πŸ˜€

  • Hi

    I'm now 5 injections in on my loading dose and still feel horrendous tinitus, numbness in my foot, difficulty finding words, forgetting what I was about to do, feel my pulse through my body, tingling in my head, still feel my swallow even with my siliva etc

    Can you please have a look at recent FBC, although I see my ferritin hasn't been checked, and advise this would be normal levels after 3 injections

    Much appreciated πŸ˜€

  • Not sure how you upload a photo 😏

  • Hi Indi40

    i am sorry you are still feeling really bad after the first five injections. Sadly the injections are not an instant cure and for may of us it takes quite some time to start to feel better. Also for some people, things get worse before they get better as nerves etc start to reawake and overreact to at long last getting B12 again.

    I do not know how to upload a photo but also the technical aspects of this forum do not alert people to the fact that you have again commented on your original post, seeking further help. I only found your new comments by accident - not your fault its the system.

    So what I am going to suggest to you is that you do a new post (perhaps called Desperate Update?) and repost you comments above in it together with an introduction to the effect that you posted for the first time six days ago in a post called Desperate, have now had the first five injections, not feeling any better etc but also have now had FBC tests but don't know how to post a photo of the results for comment.

    Someone more technically able than me will then hopefully tell both of us how to post the photo! Otherwise, if you feel up to it, you could repeat the results from the photo into your post.

    Sorry a quirk of the system. We are not ignoring you and very much want to continue to offer our advice and support.

    Hang in there and I will look for the new post.

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