Safe B12 levels

Hi,

My last Serum Vitamin B12 test results came back as 288 (180-900) and I was recommended on this forum to take B12 Methylcobalamin 5000 micrograms for 6 weeks along with a B12 complex every day which I started doing 4 weeks ago. I am not really feeling any more energetic and I wonder whether I can take 2 of the B12 Methylcobalamin 5000 micrograms tablets for the next couple of weeks to see if I feel better or can you take too much?

I have been to the doctors yet again today and mentioned B12 injections but it was a definite no no as I am actually in range and they are too expensive on the NHS.

Thanks

7 Replies

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  • Hi,

    I can't understand why your doctors are reluctant to give you a trial of B12 injections if you are symptomatic.

    Has your GP seen these documents? I gave my GPs a copy of each with relevant passages highlighted. They make the point that symptomatic patients should be treated even if B12 blood test results are normal range.

    1)www.ukneqas-haematinics.org.uk/content/News.asp?id=46

    2)www.bmj.com/content/349/bmj.g5226

    Your GP might find the summary points in the BMJ article helpful .

    3) Google "BCSH Cobalamin and Folate Guidelines" I printed the whole document out and gave it to my GPs to make sure they knew what the up to date guidance said.

    I gave my GPs a copy of the PAS symptom checklist with all my symptoms ticked.

    I gave you some links on one of your older threads that might be useful.

    healthunlocked.com/pasoc/po...

    "B12 Methylcobalamin 5000 micrograms for 6 weeks along with a B12 complex every day which I started doing 4 weeks ago"

    The problem of self treating without a diagnosis is that it makes it really difficult to get treatment or a diagnosis on the NHS. I resorted to self treatment but only after many years of illness and after I had exhausted all possibilities of treatment within the NHS at the time. Although I was and still am highly symptomatic, self treating means I have high levels of B12 in my blood so any B12 blood test will not show a problem.

    b12deficiency.info/b12-test...

    Link about blood tests for B12 deficiency

    If the GP said they would not give you injections because you were in range and also because they were too expensive it might be worth asking the PAS what they think. They can probably point you to useful info.

    pernicious-anaemia-society....

    01656 769 717

    A dose of hydroxycobalamin costs about 60p so not expensive. I think what costs the money is the time with the nurse who gives the injections. Some patients are allowed to inject themselves after being taught by a nurse which saves on nurse time.

    Have you had an IFA (Intrinsic Factor Antibody) test?

  • Thank you sleepy bunny for all of that information. I suspect the GP hasn't seen those documents. When I said that I have read that B12 injections may help, she just said that some 'disreputable' places are suggesting that B12 could help!!! I really feel like there is no point going to the GP's at all!! I will take a look at all of your links now and thanks once again for the info

  • Definite LOL on the injections being too expensive on the NHS - a phial of B12 costs about 70p ... its insisting that it is done by a nurse that is the expensive bit.

    You can't overdose on B12 so no problem with doubling the dose but it might also be worth trying a different format of B12 - some people don't find that methyl works for them - it is a very individual thing.

  • It's so frustrating!!! I think I heard "that's too expensive" 3 times during my appointment. It was suggested on this forum that I was also tested for Vitamin D levels but once again I was told that the test was too expensive and if I thought that my levels were low, I should just take Vitamin D!! Anyway thank you for your info

  • In the past I have offered to pay for tests that I thought GPs would be reluctant to order.

    In some cases it can be cheaper to do private blood tests through GP surgery rather than going to a private hospital. Not all GP surgeries will do private blood tests though.

  • I am quite new to this, having loading injections prior to Xmas but end of January symptoms were back...I took the tabs for a week and noticed no difference but the patches really worked...you can get them in 1000 and 5000 and I definitely know when I've used one. Still waiting for next injection!

  • Hi,

    I think Martyn Hooper, the chair of the PAS, would be interested to hear about your experience especially the comment about not giving injections due to the expense.

    I don't think you are alone. Martyn's blog has some case histories about people who have contacted the PAS.

    martynhooper.com/

    There is a phone app that GPs/medics can use to test their knowledge of the new guidelines. See link below for details. I asked a question about the app.

    healthunlocked.com/pasoc/po...

    "I really feel like there is no point going to the GP's at all!"

    Can you change your GP surgery? I was with a practice for years and during that time I had appts where I ended up in tears several times and my requests for GPs to consider the possibility of B12 deficiency were ignored. I can't believe I stayed with them so long. I'm with a new practice now.

    This link has ideas for writing to GPs etc if not happy with treatment.

    b12deficiency.info/b12-writ...

    Have you ever had a copy of your medical notes? Will probably cost over £50. Some people have discovered that they had test results that they were not told about that indicated they had PA. It can be interesting to see what has been written about you in the past.

    Do you get copies of your other blood tests eg folate, ferritin , full blood count as well as B12? I get copies of all my blood tests .

    High MCV and high MCH on the FBC can indicate the possibility of macrocytosis. Macrocytosis is sometimes found in patients with B12 deficiency but not always.

    patient.info/doctor/macrocy...

    patient.info/doctor/full-bl...

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

    patient.info/doctor/folate-...

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