Follow up from my GP appointment

Hi all, just an update from my GP appointment yesterday. Well as expected he was quite insistent after looking at my blood test results from St Thomas' that I don't have a B12 deficiency, I asked him to explain how 187ng/L is normal but 186ng/L is deficient! and he couldn't. I took my son with me for support, if I hadn't I think he would have sent me packing. We asked how long it would take for my B12 to drop into deficiency, just 3ng/L from 189ng/L and he said he didn't know as it can go up and down! I gave him all the information Foggyme and others had suggested pointing out 30% do not have anaemia and the guidance states neurological symptoms need to be taken into consideration. He cheekily asked if the information was from British sites or Italian, he said I had got it in my head I have B12 deficiency and I should be more concerned about the iron deficiency which he still considered to be low normal and not anaemia! Even though my test was only 7ug/L (10-290 ug/L ) what do you have to do to convince these numpties. My son asked if it could be an absorption problem and GP said it could be or low level bleeding. He then asked what I wanted him to do as he didn't feel comfortable giving me life long treatment B12 shots without confirmation. I asked to be referred to a consultant and he agreed. So I'm going to see a gastroenterologist, hopefully this proves an absorption problem or not. Just need a gastro who understands PA/B12, I have some medical insurance which will pay for a private consultant. As always thanks for all your support.

PS GP is going to do more bloods in 5wks.

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  • Hi Cali25. Oh dear, your GP is a numpty!

    I remember your last post and don't have time to go into detail now but....suffice it to say, I think you should put in a treatment request, in writing, make all the arguments you've already made (including the argument about B12 levels - which he couldn't explain), include the evidence that he ignored and then...

    Tell him that because of your neurological symptoms, you're concerned that you may be at risk of developing subacute combined degeneration of the spinal cord (information on the PAS website or the internet if you're not a member). I'm. To suggesting that you have this, simply that doctors are usually unaware of the neurological havoc that B12 deficiency can wreak on the body and having to read the information (because you've submitted it formally and it will be on your medical records)...should sharpen his mind a tadge ๐Ÿ˜„.

    Then...ask that if he is not able to offer this treatment, please can he explain his reasons is writing and provide medical evidence to support that decision (he won't be able to - there isn't any).

    Conclude by saying you sincerely hope that he can take time to review all your information before your next appointment so that you can make best use of the time availabe...good idea to make an appointment first so that you can include the appointment date in your letter.

    Don't forget to include the UKNEQAS B12 treatment alert (think I gave you the link to this)...this explicitly states that where neurological symptoms are present, treatment should commence immediately, even if B12 levels are within the 'normal' reference range.

    You should ask for the neurological regime (6 x loading doses and then injections every other day, until no further improvement - perhaps for many months).

    About what he calls 'confirmation' - making the mistake of many GP's - only looking at test results and not symptoms - going against all the guidelines in doing so.

    Hope he's treating your obvious iron deficiency (how he can ignore that and call it a low normal is beyond me ๐Ÿ˜–).

    Excellent idea to take you son - perhaps he could go along with you next time...suggest you don't wait for the five weeks suggested.

    Good luck and let us know how it goes ๐Ÿ‘

    P.s. The information wasn't from an Italian website....Stitchting B12 Tekort is a Dutch organisation, similar to the PAS, who they work closely with...also connected to the B12 Research Institute...๐Ÿ˜„. So, evidenced / scientific research grounded.

  • Thanks Foggyme, yes he is treating me for the iron deficiency (anaemia) + the Vit D the bloods will be for those to see if it is improving. I'm hoping that a Gastroenterologist will test for PA and make more sense of my blood test results. GP's today only seem to be able to follow the advice of a consultant rather than use their own initiative. ๐Ÿ˜ฌ

  • Trouble is Cali25, unfortunately, some consultants are not much better, so there's no guarantee that a gastroenterologist will be any more likely to treat you for B12 deficency ๐Ÿ˜–.

    And as you have neurological symptoms, your GP should be treating you...immediately.

    Your GP could test IF - but it gives a false negative 50% of the time - so you could test negative and still have PA. and even if,you don't have PA, B12 deficency can have other causes - and the treatment is the same - B12 injections.

    And oh...your B12 is so so low...you must feel really ill ๐Ÿ˜–.

    Think if it was me, I'd write that letter and try and get treatment sooner rather than later...it's potentially a long time to wait for a consultant appointment.

    very best of luck....keep fighting ๐Ÿ‘

  • When my gp tested my B12 and the result was 163 the lab automatically tested holotranscobalamin (active B12) which then confirmed the deficiency as this below range too.

    Maybe ask for this to be tested along with IF which will give you 2 chances of being diagnosed?

  • Hi JanD236, thanks for that, I had a active B12 test done at St Thomas' which came in at 50 in a range (70 - 108 ) classed as indeterminate. See previous posts.

  • Considering the low mark of the range does not pick up all who are deficient, I can't remember the % it misses, and then GP's lower it still further. Hope your consultant isn't a numpty too. (What a lovely word that is.) Good luck.

  • Most of us have had similar reactions from GP's unfortunately which is why this site is so great, try a different GP if you can and get another blood test through them. It doesn't sound like your GP is going to be very helpful for your condition. It is hard to find a good GP that is really, but there may be a better one out there than this one. The thing is which everyone on this site knows and GP's find it difficult to understand is that it is a water soluble vitamin which cannot hurt you, your body gets rid of what it doesn't need. It is worth pleading again from this GP or another for a plan of monthly injections to start with to see if this improves your condition. Good luck!

  • Thanks Mark123, I've already seen a different GP in the same practice. The previous one was even worse and incredibly rude, they all stick together.

  • That's unfortunate! Keep trying as it seems you do need help with your B12 levels. In Australia we are lucky enough to be able to purchase the injections from our chemist and self inject at home. It's not a cure but it definitely help me able to keep working and functioning. Checkout out whether you can purchase the injections online also.

  • Hi Cali25,

    Apologies if I've asked you in the past but I wondered if you had ever contacted the PAS (Pernicious Anaemia society)?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    Martyn Hooper's blog.

    martynhooper.com/

    Martyn is the chair of the PAS.

    Link about writing to GPs about b12 deficiency. Point 5 may be of interest.

    b12deficiency.info/b12-writ...

    Person who runs website can be contacted by e-mail.

    My understanding is that letters to GP have to be filed with medical notes so are a record of issues raised. I think it's sensible to keep copies of any letters written as well as sometimes things go missing from medical records.

    BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    Next link is to flowchart from BSH Cobalamin guidelines.

    stichtingb12tekort.nl/weten...

    Flowchart makes it clear that UK patients who are symptomatic for B12 deficiency should have an IFA (intrinsic Factor antibody) test and start initial B12 treatment. this applies whether B12 is low or within range. Flowchart also mentions possibility of Antibody Negative PA (PA where IFA test is negative.

    Has your GP seen BSH Cobalamin guidelines?

    If you're in UK, I'd strongly recommend reading above documents if you haven't already.

    I also found it helpful to read through fbirder 's summary of mainly UK B12 documents. Plenty of quotes from B12 documents in there to help patients faced with unhelpful GPs. Link to his summary in third pinned post on this forum.

    Are you symptomatic for B12 deficiency?

    I gave my GPs a copy of PAS Symptoms Checklist with all my symptoms ticked.

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    BMJ b12 article

    bmj.com/content/349/bmj.g5226

    Have you ever considered getting copies of all your medical notes? Can be very interesting to see what has been written in the past. I believe at least one person on forum found evidence of a PA diagnosis in their medical records.

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

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

    I think that if a patient is unhappy with comments in their records they have the right to ask for their own response to be included in the record.

    CAB NHS complaints

    citizensadvice.org.uk/healt...

    HDA patient care trust

    hdapatientcaretrust.com/

    Uk charity that offers free second opinions on medical diagnoses and treatment.

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

    B12 books

    I gave my GPs a copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with current UK b12 guidelines.

    Also found "Could it Be b12 " by Sally Pacholok and JJ. Stuart useful. lightbulb moment for me when I read it.

    What to do next?

    b12deficiency.info/what-to-...

    Who gets PA?

    pernicious-anaemia-society....

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