Active B12 result

Hi everyone,

Recently had an active B12 test, results are:

41 (range pmol/L 25.1 - 165.0)

Also, I had a recent B12 serum test done, result was:

556 (range 180 - 900)

Personally, I think these are low and that I need treating. I have a very strong family history of pernicious anaemia including many immediate relatives. I am also hypothyroid and hypoparathyroid. In Japan and Europe people are treated with B12 is their serum is 550. I am pretty close to that and would be treated if didn't live in the UK. I also read that with people who are hypo, their B12 needs to be in the upper end of the range or elevated. I am neither of these - am in the middle. I am also vegetarian so not getting any B12 sources from food. I sent off for my medical notes and 5 yrs ago I had a B12 serum of 1550. I had taken B12 supplements in the past which I bought in health food shops.

I am aware that the injections cost £40 - £100. GP wont prescribe. If anyone knows where else these can be obtained, please PM me. Am only able to pay for the cost of the supplement, not a private consultation. The other thing is, would I have to inject myself - as I am needle phobic, usually faint ect on sight of blood, some blood tests ect.

Please feed back:-)

8 Replies

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  • Pinkgirl, you are unlikely to be B12 deficient with Active B12 >35 and serum B12 >300 according to active-b12.com/sites/defaul...

    Why don't you supplement methylcobalamin lozenges, spray or patches instead of injections.

  • From what I have read, I thought that the injections were most effective as they are absorbed better. I don't mind trying the lozenges and see how I get on. I have not come across them before, can I order them on line or pick them up in health food shops. I was taking high strength B12 supplement which I got from Holland & Barrett but am assuming that the methylcobalamin lozenges ect are not the same thing. However, have read that methylcobalamin is the best form of B12.

    Eventually, I will end up having injections - though only when my levels drop as GP said to say 194 or something. I have no doubt that mine will drop as being veggie, I don't get any B12 from food sources. So my options are, either supplement or wait for levels to fall - which have no doubt will take about 2yrs or so.

  • Pinkgirl, Sublingual lozenges, sprays and patches get into the blood bypassing the gut which is useful for people with gut absorption issues. Methylcobalamin B12 is thought to be better utilised than cyanocobalamin B12. Given your current levels 1,000mcg daily will be sufficient and is available via thyroiduk.org.uk/tuk/go_sho... I've used Better You Boost spray and Jarrows Formula sublingual lozenges.

    There's no reason for your B12 levels to become deficient or for you to need injections because you don't eat meat and fish as long as you supplement to prevent deficiency. If you don't supplement and allow yourself to become deficient you may become very unwell and experience neurological symptoms which may take a considerable time to resolve. Loading injections may be prescribed to restore levels in cases of dietary deficiency but they aren't for life and, once restored, you'll need to supplement to correct dietary deficiences.

  • Thank you for that. I just had a look at the link and they can be easily bought and not too expensive either. Will try 1000mcg daily and it should keep my levels at optimum:-)

  • From all that I've read, you are likely to require B12 injections. I am in a long struggle to get them too, and although my GP will no longer discuss the issue with me, he did tell me when I offered to pay for them, that cost is not an issue.

    Blood test are only a first step in diagnosis but don't always tell the whole story. You can have a car that won't run even though it has plenty of fuel in its tank. All of us on these forums know how little use a TSH test is but the problem many of us face is weaning doctors off the safety blanket that blood tests offer them, and getting them to think like doctors of old, ie by diagnosing symptoms.

  • My mum is on 3 monthly B12 injections and after the 1st month she feels totally wiped out. She said that in the US they are given 1 monthly, however, here in the UK, the injections are 3 monthly which I know as most of the family are on them. My mum works full time so looked at the option of getting them monthly in the UK, as she can afford it. She enquired at her GP practice as to whether she could pay for monthly injections, and they said it is not possible in the UK. She has pernicious anaemia.

    I enquired with a private practice, whom I have used occasionally, when funds allowed as worked full-time in the past. I was told that, the doctors there wouldn't treat it privately, if they wouldn't treat it on the NHS. In other words, if they only treat it if it can be treated on the NHS, why bother going private! Bit ironic really.

    I got two options, I can either supplement or wait 2yrs or so until my levels drop and then I will be treated on the NHS. Being veggie, I don't get any B12 sources for food and have a pre disposition to B12 deficiency from a very strong family history of it.

    Same with thyroid. I should have really been given thyroxine, long before I was prescribed it. Due to being with a medical practice who are TSH types only and have never heard of a T3 test - even though am prescribed liothyronine (by an Endo) in addition to thyroxine, it should be automatically tested, I resorted to ordering my own supplies on line, in addition to those prescribed. In the past, I always had TSH and T4 tests, and if I requested T3, they would do it. That was when I lived in a different area and they were more open to increasing dosage due to symptoms.

  • Your mother could buy the B12 privately and inject herself each month between the NHS injections.

    I agree that the whole situation with B12 deficiency is an other NHS failing.

  • Thanks for your reply, I will pass that on to her. She has been on them for years but just needs them every month as 3 monthly is not enough:-)

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