B12 injections, Vitamin D and lack of GP understanding, what to do now?

Hey everyone. Thanks to peoples help here and some research into things, I know that my recent blood test result of182ng/l for B12 is too low. So I've got an appointment with my GP in a few days to discuss.

Thanks to hampster1, I know to take the BCSH guidelines and I should be tested for anti-intrinsic factor / anti-parietal cells. I should also be looking to get a loading dose of 6 injections over the course of two weeks (after the tests).

Now the problem is I don't like needles...especially if they have to put them into your muscle, it's not nice. Two others in my family have had B12 injections in the past and they have said it isn't particularly pleasant, and they don't mind needles!

So can the loading doses be taken by tablets or sublingually, or am I just being a coward? ;)

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  • Yes you can buy sublingual B12 and it must be methylcobalamin. You can buy them from Amazon and Thyroiduk.org get a small commission. Usually you cannot overdose on B12 as excess is excreted.

    amazon.co.uk/?&tag=thuk0a-2...

  • Thanks for the information Shaws.

  • B12 injections are best for a loading dose. With thyroid issues there are also absorption/gut issues so having the injections bypass this problem. I was once very scared of dentists and doctors up to my late 20's and had irrational fears. I then found myself in hospital for endless weeks with so many surgeries and complications. No time for my fears - I just had to get on with it all. Since then I always compare and nothing could be as bad. Had a B12 injection this morning from one of the girls in my yoga class. We didn't have any cleansing/sterilising agent so we used raki :-) Didn't feel a thing apart from the stinging of the raki. Think it often depends on the practitioner and her needle skills. You can probably tell I live in Greece - oh and yes it was methylcobalamin bought at the local pharmacy for a couple of euro for 3 doses including the syringes - without a prescription. Try to balance your fears with the benefits to your long-term health. It has to be worth it. Also you do not need to see the needle - it's at the rear of your body. I once had a life threatening illness that without very painful injections would have possiblyresulted in my demise..... please be brave and overcome your fears. Try a breathing practice to calm the mind. Wishing you well.....it will be fine :-)

  • Thanks for your comments and tips Marz, I shall try to rest master my fears and think of the potential positives! Oh and enough of this gloating about buying your B12 over the counter! ;)

  • Like to scream out the positives of a country that is broke and seems only to attract the negatives..... :-) It will happen in the UK soon - the OTC bit - not being broke of course :-)

  • Marz is right, oral or sublingual B12 is no substitute for injections. I am always enormously thankful for mine because without them I'd probably be half dead by now, that's enough motivation for me! Relax your arm as much as possible, just let it hang down, and ask the nurse to inject slowly. This should minimise any sting. You'll be fine. x

  • Fair enough! Thanks for the tips :)

  • I'm interested in your mention of other family members. Do they have PA? Are they not still having injections? Treatment is usually lifelong.

  • Well my father gets B12 injections once every 3 months I believe, can't tell you what he actually gets though. My sister did get the loading injections a number of years ago, but doesn't get them now. Although they both do have a yearly B12 test.

    Unfortunately despite my efforts (and I'm quite new looking into this), they seem to take what the doctor says as gospel. Consequently no diagnoses has officially been made, and they see everything as 'fixed'. When I phoned up asking for a print out of my test results (something they wouldn't do) and the receptionist told me "every things normal, no action needed", their response was, "well there you go then, told you there was nothing wrong". I guess that tells you all there is to know!... :O

  • Oh, at least your father's getting some but your sister, she really needs to get back on them. It is hereditary so I guess if you get the right tests and a PA diagnosis maybe they will listen. x

  • Be sure to mention the family link to your doctor in case he is being difficult about running the antibody tests.

  • Ha, well that's a joke..see my response below for what happened!

  • 3 monthly is the protocol laid down by the NHS. It may not be enough for him. Years ago Docs could do it monthly - then two monthly and now three. Am afraid it's all about cutting costs. Yet it is so cheap to prescribe and could save so much illness and costly NHS investigations for this and that. Doesn't make sense to me.... Lets hope soon that the petition for over the counter B12 soon is a reality in the UK....

  • Yeah lets hope that does happen, but I know not to hold my breath!

  • Oh and have a read of what happened to be at the GP! Bet you don't have that in Greece! :(

  • Well my recent GP appointment was frankly a waste of time.

    I explained that I came in a few weeks ago and reasons why I asked for the tests I did, including B12. At that point I was told that my B12 was normal. “Oh” I say, knowing that the appointment was going to go downhill from here. After mentioning that I thought that below 200ng/l was considered a strong case for have deficiency, he said “it depends on the lab range, and yours is normal”. The range wasn’t listed on my test results, so he looked up the range and mentioned it was (180-1000ng/L). “Your result is 182ng/L so in range and perfectly normal”. When I question him asking that my result couldn’t be any closer in the range, and I thought it was supposed to be high, I got simply “it’s normal, you don’t have B12 deficiency”.

    At that point I felt there was simply no point in referencing the documentation I had brought in from the B12 deficiency website, BMJ or BCH guidelines. I felt the 'battle' was already lost, no amount of evidence would help, and frankly why should it be a 'battle' anyway?

    I also asked about my dropping Vitamin D levels. A year ago it was around 50 nmol/L (without any supplementation). After having it done a month or so ago it had dropped down to 34.5nmol/L, despite taking 2,000iu of D3 per day. The GP at least acknowledged this was odd (unlike the previous GP). I suggested maybe I should be taking 4,000iu instead? He said that this not a good idea, since they usually only prescribe 800iu per day in the surgery.

    When I mentioned that I had this done privately, he asked why, so I said I was told that you couldn’t have vitamin D on the NHS. He showed me the box he could tick, and ordered me a Vit D test to confirm my levels. I didn’t think it was appropriate to tell him that a previous doctor had told me they were going to order VitD tests, and when it came back, these weren’t done. I was told that “well I didn’t think they {the lab] would do them anyway as they are expensive”. But that’s another story.

    So in my attempt to get further help, anti-intrinsic factor / anti-parietal cell testing, maybe homocysteine levels if I could, and loading B12 doses, I instead get a book on depression in an attempt to “think my way out of my mild depression”. On mentioning this to my father and sister (who had the B12 shots as I mentioned), they simply agreed that “doctor knows best” and thought I should drop my investigation into this.

    So now it’s completely blown out any resemblance of a good mood, and frankly it seems the only place I can support is on here. What should I do now? :( :X

  • There are 47 pages on b12deficiency.info/signs-an... on how to self inject. You can buy B12 on-line. Think you should have all the tests for PA though. Could you write an e-mail to your Doc about your concerns and all the info, Especially the fact that in Japan the B12 range is 500-1300. As hampster1 said earlier Doc needs to know about the family....

    Am sorry you had such a negative time with your Doc. Keep posting and following the advice of hampster1 - I did.

    In Greece we are able to take control of our own health without causing offence. I just buy the B12 in the Pharmacies and a friend injects. I had my Terminal Ileum removed over 40 years ago and that is the place where B12 is absorbed. No-one told me I should have been receiving injections - have recently started at the age of almost 68.

    Good luck !

    PS Have noticed the format of the site has changed on B12 - so hopefully the info will be there....

  • Thanks again for the thoughts Marz. Don't really fancy the idea of self-injection at the moment to be honest. Will follow hampsters advice about sending a letter, and hope that has a positive result.

  • How silly. I mean, it's silly, isn't it, that a doctor can honestly believe that someone with a B12 of 182 is fine whereas someone at 179 would have a deficiency. This kind of black and white medicine is quite honestly killing people. If all we had to do was look and see if we're "in range" on a lab report, then we wouldn't actually need doctors, would we? Just lab technicians.

    I wouldn't let him get away with it. Send him the new guidelines with a covering letter, also copy in the Practice Manager. The very first thing it says in those guidelines, seriously the absolute first thing, is the following statement:

    bcshguidelines.com/document...

    "The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency."

    Also important is the following:

    "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

    Highlight table II as well, which includes the following:

    "Personal and Family history of autoimmune disease Does patient, parent or sibling have vitiligo, hypothyroidism or pernicious anaemia ?

    Positive family history or personal autoimmune conditions increase pretest probability of pernicious anaemia"

    You'll have to be quite clear on what symptoms you have, to make sure he doesn't attribute them to other conditions or depression, as he has already done. I'm not surprised they feel the need to give out depression booklets to most of their patients, because we usually leave the surgery feeling depressed even if we didn't when we arrived!

    Fill out a couple of symptom checkers, here are a few:

    pernicious-anaemia-society....

    b12d.org/b12-signs-symptoms...

    b12deficiency.info/signs-an...

    Another thing you can do is ask to be referred for the Active B12 test at St Thomas', costs £18 if you are near London. If you wanted to also have MMA and Homocysteine at the same time they are £96 and £40 (unless prices have changed recently).

    Or try another doctor at the practice. It is very frustrating but, if you are symptomatic, I wouldn't let it go without a fight.

    H x

  • Hi Whitenose my b12 was 283 i was told normal i have brought my level up to 600 and feel so much better i take b12 1000ug a day and vitamin d 3 with calcium ,my vitamin d3 was 17 now up to 30

  • Thanks for your comments, suki. Issue is that I don't want to start supplementing yet as that will mess up any further tests. So have to wait to feel (hopefully better), it's catch 22...

  • Thanks for taking the time to reply H, means a lot.

    I agree about the range, it really is stupid that there is such a extreme cut off. I think you have to be under 160 to be considered as having deficiency, what's in 22 if symptoms are present? Isn't that is what doctors are for, to consider symptoms and make a judgement call? Maybe I didn't present my symptoms in a clear enough light, who knows.

    Thinking of symptoms, on the PA test you linked to I got about 10 symptoms, the b12.org test I got a score of 30 (>20 is considered deficient apparently), and the other about 8-9 symptoms or so. The b12d.org site has mentioned that their test has now been superseded by the one at b12d.org/sites/default/file... I scored '4-6 body systems, which when you follow their flow chart, and my <200ng/L score, leads to 'severe b12 deficiency'.

    This is the second doctor I have seen at the practice now, so not sure seeing any more would help. Besides this GP was apparently supposed to 'one of the better ones' at the practice, according to those who had seen them. It's annoying as I am kind of feeling like I didn't take control of the situation. I should have questioned the doctors thoughts about the ranges being normal and showed him the guidelines and the recommended ranges. But when he kept telling me things were normal (quite a few times) it put me off guard. Add to the fact that I was feeling pretty tired and I guess I let things run away from me. I shall send a letter mentioning what you said, and what I should have said, and see what comes back.

    I was lucky with the appointment, I only had to wait about 1 1/2 weeks or so, and feel that I wasted it. These regrets only add to my miserable mood at the moment!... Sorry I must appear like a right hopeless case.

    In terms of London, well I'm about 2 1/2 - 3 hrs away, so that's not really an ideal situation.

    It frustrates me that everything appears to be a struggle. What is the point of the NHS if you have to fight for everything, your symptoms get ignored and doctors aren't up to date on more basic practices like vitamins and minerals?

  • Have you had the active B12 test, it's more accurate and GP should take notice.

    (home test £57 with TUK discount)

    thyroiduk.org.uk/tuk/testin...

    it's very frustrating, another thing is to change docs - have you seen the little B12 video on my profile page? J :D

  • I haven't had the Active test, just the normal serum test. Been reading about the home kit, but not sure I could do it. I'm not a fan of needles, and I have a phobia of blood! So I can't see myself 'milking' my finger to fill a vial...!

    I'm going to have to see what the GP says (if anything...) from the letter. I feel a bit annoyed with myself though for letting him 'take control' of the appointment. I went in there with the guidelines and other pieces of research, but for some reason didn't use or mention them. He did keep looking at the papers to see what I had, but I think it was more of a case of "heres another patient who has looked on the internet and thinks he has diagnosed himself...".

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