GP appointment update

This was my appointment after my loading doses and blood tests. Well I expect you can all guess how it went! I told my GP that I still had numbness and tingling. He told me that it was unlikely to be related to the b12 deficiency as my levels were now up following the loading doses and that it was unlikely I would have symptoms from b12 deficiency as I was not anaemic. He then double checked what my calcium levels were to see if maybe that was causing it but they were fine. He showed me the results from the ifa test which was 2.6 with a range of 0-6. So no obvious reason for low b12. He suggested 3 monthly injections going forward. When I tried to discuss this he told me that last year the surgery did an audit and at least half of everyone on b12 injections were trialled on tablets and they have managed to keep their b12 levels up on tablets. Get the impression they are anti injection! I did not have my print outs with my me as was off work with a migraine on Monday and all my prep was there!

Needless to say I am not satisfied with 3 monthly injections and now plan to self inject. Using info from previous posts I have ordered everything I need. I now need to overcome my needle phobia!

18 Replies

oldestnewest
  • Hi,

    Sorry to hear it was not very successful appt. I had to resort to self treatment for several years as NHS would not treat me.

    "He showed me the results from the ifa test which was 2.6 with a range of 0-6."

    Is your GP aware that it is possible to have Antibody Negative PA?

    This flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK.

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    My understanding (I'm not a medic) is that Antibody Negative Pernicious Anaemia can be diagnosed in someone who

    1) Is symptomatic for B12 deficiency

    2) has had other possible causes of low b12 eg diet, excluded

    3) Shows a clinical response to b12 treatment eg symptoms improve

    4) Has a negative/normal range result in IFA test.

    PA requires lifelong treatment with B12 injections (in UK)

    Has your GP seen the flowchart?

    "he told me that last year the surgery did an audit and at least half of everyone on b12 injections were trialled on tablets and they have managed to keep their b12 levels up on tablets"

    Think Martyn Hooper of PAS might be interested in hearing about your surgery.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone

    B12 Blog posts

    There is a blog post on "B12 deficiency Info" website from Aug 31, 2017 about what to do if injections are stopped.

    b12deficiency.info/

    Martyn Hooper's blog

    martynhooper.com/2017/03/22...

    martynhooper.com/2016/08/02...

    Link about writing to Doctors about B12 deficiency (UK info)

    b12deficiency.info/b12-writ...

    Point 8 is about GPs wanting to stop injections and replace with oral tablets.

  • My GP doesn't seem to be aware of anything! He did not listen to me about any of my concerns. The blood test I had was 6 days after the first loading dose and 30 mins after the second. I asked him if it may have interfered and he said no. He also said that he would have expected my levels to drop and as they were 100 in 2010 and 111 now must be absorbing some.

    I don't want to wait any longer to feel better and will probably just accept that there is no reason at present and concentrate on getting myself better!

  • I can understand not wanting to wait any longer...I got to that point.

    "He also said that he would have expected my levels to drop and as they were 100 in 2010 and 111 now must be absorbing some. "

    What's the reference range for serum B12 in your area of UK?

    A typical range in UK is 180 - 900 ng for serum B12 but ranges vary across UK . Reference ranges are usually next to blood test results on copies of test results.

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    nhs.uk/chq/Pages/2635.aspx?...

    If your result was 100 ng in 2010 and is now 111ng in 2017 that does not seem much of a rise if you have been on loading doses prior to 2017 result.

    I would have thought GP might have suspected an absorption problem. PA is one possibility so is Coeliac disease and there are other possibilities.

    Have you been tested for Coleiac disease?

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

    nice.org.uk/guidance/ng20/c...

  • What does your GP suggest as the cause for your peripheral neuropathy?

    Does he know how long it takes for nerve damage to repair itself?

    I would demand a referral to a neurologist to get some proper tests done. Then I would suggest to the doc that you save the NHS some cash by doing the injections at home if the nurse would show you how. The major cost factor is the staff costs in doing an injection at the practice. That way you could stay on 8-weekly jabs.

  • He told me that sometimes people never find out. I had a few tests and the only one which showed anything was b12.

    I have been tired for so long that I don't want to fight. I just want to feel better and I can do that myself. I think I will switch gps as have just moved and there is one closer to me. I will see what they say.

  • Yes, there are over 80 different causes for peripheral neuropathy. And some people never do find out what causes theirs - but that's no reason not to look.

    A neurologist will carry out specialist tests - nerve conduction, etc. - and they know the subject (unlike your GP).

  • I will ask when I have switched gps. Thanks for the advice.

  • The reference range is

    <130 deficiency

    130-160 deficiency likely

    >160 no deficiency

    I have not have any b12 treatment before as although tested low in 2010 after going to GP about fatigue, I was told my result was normal.

    I was tested for celiac as well and my result was <0.1 with a range of 0.00 - 4.00 so he said a definite no for celiac. I definitely have adverse affects when eating wheat but may be just an intolerance. I suffer from ibs but was told that would not cause absorption issues.

  • A lot of people who say they are gluten 'intolerant' even though they don't have celiacs may well have a reaction to wheat. But it's more likely to be something called FODMAPs - small carbohydrates that can affect the gut.

    This is what Kings has to say about them...

    kcl.ac.uk/lsm/research/divi...

  • Hi Padders,I've given up on GPs who seem to either be miss informed about B12 deficiency or don't really care. I was told classic neurological B12 deficiency symptoms were unlikely to be caused by my low B12 (72 at one point.) When given injections they improved.I had a hard fight which was very distressing and got them to agree to alternate day injections for 4 weeks then 2 monthly.I am now self injecting and feel much better but continue to go for 2 monthly injections to keep me on their radar.I will continue to self inject for life as the wrong treatment from GP could have dire implications .Its actually painless when done on thigh. Good luck.

  • Thank you for the support. I am going to practice on some oranges first to see how I go. I am hoping the desire to feel better will outweigh the phobia😬

  • Tell yourself what clivealive 's GP told him "raw liver everyday, die in the not too distant future or injections" and choose the one you like best.

    I wish you lots of good injections.

  • Hi again,

    "I was tested for celiac as well and my result was <0.1 with a range of 0.00 - 4.00 so he said a definite no for celiac. "

    If you only had one test for Coeliac disease it was probably a test for tissue transglutaminase IgA (tTG IgA)

    if you look at the link to NICE guidelines on Coeliac disease you will see in Section 1.2.2 that two first line tests are recommended,

    total IgA and

    tTG IgA

    Total IgA test is recommended because some people have IgA deficiency which means they will not make the tTG antibodies and will need alternative tests for Coeliac disease.

    I think without doing the recommended total IgA test it's difficult to be sure that a person does not have Coeliac disease. If they have IgA deficiency then their tTG test will appear to be negative/normal range.

    I would have thought that with a 2017 test result of 111 (ref range 130 - ?)and previous low B12 result in 2010, GP would be worried about the potential neurological consequences of long term B12 deficiency eg possibility of SACD

    PAS news item on neurological consequences of PA

    pernicious-anaemia-society....

    I know you are contemplating SI.

    Some forum members have discussed/written to GP about possibility of long term neuro damage if adequate treatment is not received.

    There is a PAS article on website about SACD available to PAS members.

    pernicious-anaemia-society....

    Point 1 in this link is about under treatment of neuro symptoms

    b12deficiency.info/b12-writ...

    I am not medically trained.

  • What is sacd? Not currently a member of pas but think I will join as so much useful info available! Every time I asked my GP about other tests he gave me the "what do you know" look! I agree that neither my pa test or my celiac were conclusive. I think the gp's are both under educated and penny pinching and therefore try to avoid more tests than they think absolutely necessary.

    I think I will try again when I have switched gp's and have a bit more energy!

  • SACD stands for Sub Acute Combined Degeneration of the Spinal Cord.

    The PAS article about neuro consequences of PA (link in my post above) mentions SACD.

    If you join PAS you can access PAS article on SACD, link in post above. You can also access details of PAS support groups if a member. These can be a source of valuable info eg helpful GPs in the area

    pernicious-anaemia-society....

    This blog post from Martyn Hooper's blog mentions SACD

    martynhooper.com/2010/09/21...

    SACD is also mentioned in these B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

  • The needles are short inch long, you can hardly feel them. I guarantee u that you will be fine.

  • As there doesn't appear to be any problem with adverse reactions Padders12 then having a go yourself would seem to be a sensible proposition. (I am not medically qualified though so this is just my personal opinion.) I know what you mean about needle phobia and I suspect everyone who has to contemplate it has it to some degree. There was time when I would refuse to let anyone near me with a hypodermic needle so the sugar lump for the polio vaccine was a life saver for me as I was fortunate enough to be included in the clinical trials for it.

    I was invited to self inject during the loading dose period and as my daughter had experienced serious problems from trying to get appropriate appointments for her B12 injections before she went onto SI 15 years before I agreed. That first time wasn't too bad and then the second time when I had to set everything up as well was better. When I came to do it on my own it was fine until I actually had to point the needle at my leg and then push it in. After a few moments steadying the nerves it was no problem. Now I disagree with some on this forum as I push the needle in slowly and it doesn't hurt a bit, then try pulling the plunger back to check I am not in a vein - and it doesn't come back so everything is ok - followed by slowly pushing the plunger down and injecting that tiny amount of the wonder drug which is also such a lovely colour. Pull the needle out quickly and a gentle rub of the area and then clear up the bits and pieces. All over until the next time.

    There is a maxim I was taught a long time ago - If you can do it once, you can do it twice and then you can make a habit of it. It really is so very easy to do.

    I hope you can find the courage to have a go for yourself as the benefits are so valuable - you will be in charge of your own treatment.

  • Thank you all for your replies. It's great to have such support and read other people's stories. You are all such an inspiration to me!

You may also like...