New to all this .. Any advice great fully received

Hi I'm 38 and over the years my B12 and folic levels have dipped .. I've usually had tablets for a few months then been told I'm ok.

My last blood test showed my level of b12 at <50 so I've been given loading injections of B12 then will go to 3 monthly.

I have lots of symptoms, tingling, numbness, brain fog, seeing blurry lines, pins and needles and tiredness.. Because of this I have also been referred to a consultant Haemotologist ( awaiting appt ).

I'm finding the whole thing a little worrying and after 5 jabs so far the tiredness hasn't improved at all ..

How we're all you after loading shots?

19 Replies

oldestnewest
  • Hi, welcome. You are showing loads of neuro type symptoms, you need to try to persuade your dr to treat symptoms rather than just give you loading. Guidelines say every other day until no improvement where neuro symptoms are concerned. Cant guarantee your dr will do this but at least he has referred you onwards.

  • Thank you .. I think my last loading one is tomorrow.. So then it will be 3 months wait .. I'm just preying they kick in soon .

  • Your tingling, numbness, etc. are all neurological symptoms. According to the prescribing bible - the BNF (British National Formulary) - you should be having loading doses every other day until symptoms stop improving (with a review after three weeks). After that you should be on 2-monthly jabs.

    All that information is in the second paragraph of the BNF entry for hydroxocobalamin. Unfortunately many doctors never get past the first paragraph - where it says 6 loading jabs then 3-monthly.

  • Thank you .. I only see the nurse for the jabs but I will ask her tomorrow if I can continue due to symptoms not getting any better

  • Hi Kellybee as fbirder and Lisahelen say the telling phrase from the BNF is:-

    "The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement."

    Are you still taking Folic acid? You say you've "usually had tablets for a few months then been told I'm ok" You need a healthy level of Folate to process the B12.

    It is not unknown for symptoms to apparently seem to get worse before they get better. I'm not a medically qualified person but one who has had P.A. for 45 years and that has been my own experience.

    So please do not worry overmuch - it will take time for the B12 to repair the damage done to your nerves. Make a list of all your symptoms and check off day by day on a scale of 1 to 10 those which improve or are "gone away". Stress and worry just uses up the B12 unnecessarily.

    I wish you well.

  • Thank you

  • It is horrifying that you have been so inadequately treated with tablets, which if prescribed by the NHS are Cyanocobalamin, and so obviously useless that they have allowed your levels to drop dangerously low that you now have neurological symptoms!

    Others here have pointed out the BNF guidelines and it is vital that you now have the correct and adequate treatment as there is a short window of opportunity before permanent damage sets in.

    It might be worth writing to your GP, quoting BNF/BCSH guidelines, enclosing the latest BMJ research document (link below) then taking it (and ideally someone for support) to your next appointment (in case it is not read) and, if necessary, point out the advice re. injections, testing and response to treatment on page 4.

    b12deficiency.info/b12-writ...

    BMJ Research document :

    cmim.org/pdf2014/funcion.ph... :

    "* Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

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

    * Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy."

    .............

    stichtingb12tekort.nl/weten... :

    "Conclusion

    A vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

    .......

    PS. You should probably wait until B12 levels are higher before starting folic acid:

    "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

    gbhealthwatch.com/Nutri...

    ............

    I hope things start to improve for you Kellybee. I am not a medical practitioner, just someone whose close relative experienced permanent damage owing to inadequate treatment.

  • Hi Kellybee,

    I agree with everyone who has replied to you in that you should definitely insist on getting injections every other day until no further improvement.

    Your levels were so low, you will most likely need lots more b12 to feel better. Can you get an urgent appointment with your GP? If you can, insist that she/he read the second paragraph of the BNF entry for hydroxocobalamin as per fbirder.

    If the GP doesn't take you seriously, ask her/him to sign something saying he/she will take full responsibility if you incur further neurological damage from the lack of proper treatment. Write up something in advance and keep the original and ask that a copy be placed in your file. I believe others on this forum have done that with good results.

    If you don't get anywhere, you might consider self injecting as so many others on this forum have had to resort to. If that's what you decide, post again and forum members can walk you through the process.

    Good luck!

  • P.S. Forgot to say I am not a medical professional, just someone who understands the need for proper medical attention regarding B12 deficiency.

  • Thank you ..

    I don't think I would dare self inject .. That sounds so scary.

    I will try with the Dr .. I'm not naturally a very pushy person and I'm not used to needing a DR I think I need to man up a little and brave it out otherwise I'll not get well.

  • Hi Kellybee,

    I certainly understand how hard it is to stand up to doctors! I just got lucky when I found a naturopathic doctor who understands about B12. She gives me a prescription for it and my husband gives me the injections, so I'm not so brave either! :-) however, at this point I think I could self inject if I had no one to give them to me because otherwise I'd feel like about 50 miles of bad road without the B12!

    I do think that if you printed out the NHS guidelines and asked the doc to take a look? And then ask if he wouldn't object to more loading doses for you as a trial to see if it made you feel better & cleared up your symptoms?

    You could try being nice like that first and if you have no luck, then try to get tougher. Re-read all the replies to your post and pretend we are all in the doctors office with you! Just an idea. :-)

    Really, best wishes and keep us posted!

  • Hi,

    I am surprised that your GP is only planning to give you injections every 3 months.

    Some of the symptoms you describe can be found on lists of b12 deficiency symptoms under neurological symptoms.

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

    b12deficiency.info/signs-an...

    UK B12 treatment

    In UK people with b12 deficiency and neuro symptoms are supposed to get loading doses every 2 days for as long as symptoms continue to get better then it's maintenance doses every 2 months.

    It's worth fighting for correct treatment because untreated or inadequately treated B12 deficiency can lead to permanent neurological damage. Some people sadly develop spinal cord degeneration.

    Page 8 of the BCSH Cobalamin and Folate Guidelines has details of UK B12 recommended treatment for those with b12 deficiency including those who show neurological symptoms. I found it helpful to read the whole document and gave a copy to my GP.

    Page 29 of the BCSH Cobalamin and Folate guidelines is a diagnosis flowchart that shows the recommended process that doctors should follow in the UK for those they suspect have a b12 deficiency.

    My experience has been that some medics are not aware of the BCSH Cobalamin and Folate guidelines and may be following local NHS B12 guidelines instead, some of these local guidelines have not been updated for several years.

    IFA test/Pernicious Anaemia

    Have you ever had an IFA (Intrinsic Factor Antibody) test? This can help to diagnose PA (Pernicious Anaemia) but is not always reliable.

    Be warned that having a negative result in the IFA test can still mean a person has PA as it is possible to have "Antibody Negative PA". Antibody negative PA is mentioned on page 29 of the BCSH Cobalamin and Folate Guidelines.

    Do you have any relatives with PA?

    pernicious-anaemia-society....

    Some people on this forum join the PAS. pernicious-anaemia-society....

    What other blood tests have you had? Have you had recent tests for ferritin (a stored form of iron), folate, full blood count as well as b12?

    b12deficiency.info/b12-test...

    One thing I learnt to do was to always get copies of my blood test results. Sometimes I was told everything was normal and when I got copies of results I found everything was not normal....

    fbirder has compiled a summary of mainly UK B12 documents. There is a link to summary on his profile page and also a link in one of the pinned posts. I take a copy of this to any appts where b12 might be discussed.

    B12 books

    "Could It Be b12" by Sally Pacholok and JJ. Stuart. A very comprehensive book about B12.

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. I gave a copy of this to my GPs as it is up to date with current UK guidelines.

    Martyn Hooper is the chair of the PAS and has written several books about PA and B12 deficiency.

    Other links that might be useful

    b12d.org

    patient.info/doctor/pernici...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    labtestsonline.org.uk/under...

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

    Have you ever had a test for Coeliac disease? Coeliac disease can affect the gut and can lead to absorption difficluties with some nutrients eg B12. It is possible to have Coeliac disease even if Coeliac test comes back negative.

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

    There are quite a few people on this forum who have both B12 deficiency and thyroid problems. Symptoms can overlap. Have you ever had thyroid tests?

    thyroiduk.org.uk/tuk/

    There is a very active Thyroid UK forum on HU.

  • Hi,

    No I've not been tested for anything else .. I don't seem to have any symptoms of coeliac disease though thank goodness.

  • Thank you for all that information.. All of this will help me greatly, I will ask about further injections and keep my fingers crossed ,. I really appreciate your reply.

  • If you have time keep us updated on your progress. If you do update it may be better to start a new thread.

  • Hi, I have been on b12 injections every other day for a few weeks now after a battle with my gp and a haematologist appointment. I have most of the symptoms of b12 deficiency plus a few other odd ones. I have not seen any difference in my fatigue levels yet either. Most of my symptoms are still the same at the minute. The only things to change so far are, tinnitus has gone from a score of 10 to 8 and the same for my hyperacusis. Pins and needles have reduced and are occasional now. The only other thing is I have had the first normal period in many years, they were so bad and heavy I could not leave the house! From what I have seen it can be a slow healing process. The haematologist has tested me for coeliac and copper deficiency too, so they may test you for that as there is the possibility of silent coeliac disease. You could consider writing to your gp to ask for extra injections quoting the guidelines, you should also ask for an urgent referral to the haematologist.

  • CarpaBob makes a good point about writing to GPs. My understanding is that letters to GPs have to be filed in a person's medical file so are a record of issues raised. Letters are less confrontational sometimes and there are some GPs who do not like being questioned face to face.

    Link about writing to GPs about b12 deficiency.

    b12deficiency.info/b12-writ...

    I think this link above does not mention the "BCSH Cobalamin and Folate Guidelines" which is something I would mention if I wrote a letter to my GPs.

    I have written very polite letters in the past but looking back I did not include many references. I think if I wrote further letters I would back up any points I made with references to various B12 documents. fbirder has a summary of mainly UK B12 documents that I would use. I take a copy of his summary to any appts where B12 might be discussed. There'a link to fbirder's summary on his profile page and also a link in one of the pinned posts on this forum.

  • Thank you .. I am so grateful for every bit of advice I've had on here, I got no explanation from the GP or nurse about this condition... Just a phone call to say start injections.. I've not even had a leaflet to explain.. This forum is the first time I've been able to get any information. I can't thank you all enough.

You may also like...