Private clinics that can properly diagnose and prescribe b12 treatments in the uk that NHS Gp's can then follow up with ongoing treatment?

When I stood in front of the mirror this morning I finally accepted defeat in the hands of my Nhs gp's.

The smaller jeans I bought in December are hanging off me and I feel rotten.

As I leave the house to take the kids to gymnastics I realise that even the short journey into town by car and the short walk from the Carpark will probably be my work for today then I'll need to rest.

Wind back a few years and a Saturday would of been a 10 hour shift at work then 5 hours of wallpaper stripping into the night.

People keep saying that b12 deficiency is easy to correct especially if it's caught and treat early so why am I contemplating smaller clothes again and an afternoon of snoozing then accepting bed by 6pm??

Why.... because not a single Gp I've seen will accept that a b12 or 146pg was low enough for treatment five years ago or that 153pg now should make alarm bells ring.

I can travel to a private clinic if such a clinic exists.

Do such places exist that are available to the average man who can get a proper diagnosis then continue treatment at their own Gp practice. My doctors seem frightened to prescribe despite the wealth of evidence screaming at them to start treatment.

I simply can't allow this to go on any more.

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  • Or you could simply do what so many desperate members of this board do and self inject.

    Not that I could, I am needle phobic and it makes me feel nauseous to think of it!

  • Hi Ruthi,

    Because very, very rarely it is possible for someone to get a shock reaction to B12 injections the first one should always be done at a clinic where help is available and you should always advise this.

    Once you know you are OK then yes, SI is a possible solution and one that has saved many lives, including mine.

  • Have you ever had your thyroid function checked? An overactive thyroid might make you lose a lot of weight.

    I'm not suggesting that your B12 problems should be ignored and left untreated. I'm suggesting that you may actually have additional problems that need attention.

  • Likewise addison's disease can cause weight loss and fatigue (and nausea, hyperpigmentation). There can be other causes too, they really should investigate further, in addition to treating B12D. Grrr doctors make me so mad sometimes!!!!!!

  • 146 is indeed a low reading . You need treatment straight away . You are certainly B12 deficient , and you may have PA if you eat plenty of animal products i. e. meat , fish, eggs, milk cheese etc, which will not be absorbed if you do have PA . I had to resort to a private doctor at a Nuffield Hospital . I was dismissed with a blood serum level of 150 and many symptoms which I was told were " ideopathic"'( no known cause ) my feet were totally numb and I was very giddy , kept bumping into things and was very confused ! And the exhaustion was awful . I was covered with B12 patches and had taken so many MethylcobLamin lozenges when I saw the Private doc so my bloodserum was sky high . But the antibodies to Intrinsic Factor luckily showed up (50% of the time they don't ) I took the results to my GP who was then obliged to give me loading doses (5 in Gloucestershire ) then every 3 months . This proved to be insufficient , so now I self inject with Hydroxocobalamin once a week or as necessary . I get the ampoules from a German online pharmacy . The numbness in my feet has gone , but my feet burn like hell and feel as though I'm wearing shoes too small ! But I'm so grateful to have found this forum , which has helped me so much . You will find a way round your problem - you must . Hope that I've given you a bit of information that is useful . Best wishes .

  • I think a few people on the forum have considered making a formal complaint about lack of treatment.

    My own thoughts are that this can change the doctor/patient relationship and can lead to being labelled as a difficult patient.

    The "BSH Cobalamin and Folate guidelines" suggest B12 treatment should be considered if b12 levels are below 200ng. Has your GP seen this document?

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" .....should be on page 3 or put "cobalamin and folate guidelines" in search box.

    Next link is to flowchart in BSH Cobalamin guidelines which mentions treatment at levels below 200ng.

    stichtingb12tekort.nl/weten...

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    The person who runs the b12 deficiency info website can be contacted by e-mail and may be able to give you more specific help.

    citizensadvice.org.uk/healt...

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

    HDA patient care trust

    A UK charity that gives free second opinions about medical diagnoses and treatment.

    hdapatientcaretrust.com/

    I deteriorated for many years despite polite requests for GPs/other specialists to consider the possibility of B12 deficiency. In the end, I resorted to self treatment as I felt I had no other option and some of my symptoms improved and some disappeared. The problem with self treatment is, it can make it impossible to get a confirmed diagnosis.

  • Hi my level at the gp's in November was 314pg

    That's why they won't treat me.

    In 2012 when they last tested me it was 146 but they didn't offer treatment (my fault in part because I supplemented inbetween that test and the repeat they ordered not knowing it could effect the results which came back at 287).

    I had a private test in October that came back at 156pg but the Gp won't accept that result and just says I have nice healthy levels at 314.

    My symptoms don't get me treatment in their eyes.

    I suspect they've made their minds up that I'm suffering stress.

    They are of course correct as the lack of any treatment is indeed stressful.

    I've begged for a therapeutic trial of b12 injections but sadly we're all victims of the present compensation culture including the gp's.

  • Hi,

    I believe at least one person on the forum wrote a letter to their GP asking if the GP practice was willing to take responsibility for the potential neurological damage they might suffer as a result of not getting adequate treatment for B12 deficiency with neurological symptoms.

    This is rather a confrontational approach though.

    If you are a PAS member, the library section on PAS website has an article about sub acute combined degeneration of the spinal cord (SACDS). The article is only available to PAS members. I believe Martyn Hooper suffered SACDS as a result of a delayed diagnosis of PA.

    I sent you a pm. If you click on your screen name at top of page, one of the headings is Messages. Click on this.

    Can't remember if you've had an IFA test (Intrinsic Factor Antibody) test. A positive result in the IFA test with symptoms of b12 deficiency means a diagnosis of PA according to my understanding of the "BSH Cobalamin and Folate guidelines". link to guidelines in my post above.

    I'd suggest talking to PAS, they should be able to pass on useful information.

    PAS tel no +44 (0)1656 769 717 office open every day 8am till 2 pm except Sundays and some holidays.

  • Hi my IFA and PA we're both negative. The Gp tested it along with his b12 test.

    That's why they won't treat for b12 deficiency.

    I only have one low b12 result on their system and that's in 2012.

    I guess I've been living with low untreat b12 since at least 2012 and am now possibly suffering the consequences.

    Back then I had a hpylori infection and suspected ulcer that they treat with antibiotics.

    My story really begins in 2008 though after picking something up at the same time I'm working on a sewer so I get a carrier bag full of various antibiotics.

    Maybe all those antibiotics messed up my guts as I've not been right since then.

    They always said I had post viral fatigue......

    Back in 2008 my b12 was in the 280's because the Gp showed my all of my b12 results the other day.

  • I could actually cry because if I'd not supplemented in 2012 and been given the right advice I most likely would of had treatment or at the very least of known I was heading towards this situation and could of adjusted my diet and importantly kept an eye on my levels.

    I was told my b12 was low and needed to be retested so took b12. I never actually knew my levels except to be told after the repeat that it was normal so I stopped the supplements.

    I'm at a loss why my b12 was never tested again over the years after that low result despite repeated visits to the surgery as I slowly got worse.

    It's me who tests it first in Oct 2016 then the Gp refuses treatment until he does his own test but that doesn't show a low enough level however as soon as the nurse had drawn the blood I began taking b12 spray fully expecting his test to mirror mine and not wanting to delay treatment a moment longer in fear of irreversible damage.

    Supplements are my nemesis as a third b12 or different tests went right out the window due to me taking high dose b12 supplements.

    The lesson to be learned from my experience is NEVER SUPPLIMENT until you have your confirmed diagnosis from the person who is able to prescribe treatment.

  • I am in exactly the same position as you, but never supplemented, instead managed two three month trials of several times a week. The results were statling, and all the fatigue and neuro symptoms dropped of, but it did take time. Now with very low folate, below ref range, b12 at 288 and after unrelated spinal abcess (four months in hospital) have a return of old symptoms, i.e. thigh boots and long gloves neuropathy, guess what they are attributeing my symptoms to, instead of giving me injections. I was originally diagnosed on the basis of low b12 plus three auto-immune conditions, including one of the most complete cases of vitiligo the dermos had seen, about 90% pigment loss. Recently had a battery of blood tests done, but all the GP wanted to do was get heavy with me over refusing to treat for b12d. At least they could have used it in part of a differential diagnosis, because tests show no diabetes, no thyroid etc. So the really debilitating neuropathy must be coming from somewhere plus all the accompanying goodies making my life a shambles!

    Do not blame yourself for supplementing, especially if they are in anyway beneficial to you. Right now for many of us the GP route is not looking rosy, older docs are retiring and I am not sure there is not another audit of b12 use going on, I cannot otherwise explain why they would test everything but go on to deny a treatment that guidelines say should be treated for life.

  • "They always said I had post viral fatigue......"

    So many of us have had a diagnosis of ME/CFS/PVFS/fibromyalgia in the past.

    Link from Martyn Hooper's blog about misdiagnosis of PA as ME/CFS

    martynhooper.com/2015/08/04...

    Another link about misdiagnosis of B12 deficiency as other conditions.

    b12deficiency.info/misdiagn...

    Do you have any blood relatives with B12 deficiency or PA or other auto-imune conditions, if yes, is your GP aware that blood relatives are affected?

    There can be a family link in PA and some other auto-iimune conditions. See following article on PAS website.

    pernicious-anaemia-society....

    Perhaps your GP would find the flowchart I gave a link to in post above interesting, It gives guidance under what circumstances PA can be diagnosed including when PA can be diagnosed after a negative IFA test. Some Gps in my experience are unaware of the BSH Cobalamin guidelines.

    There is a section on PAS website for medical professionals.

    pernicious-anaemia-society....

    The woman who runs the B12 deficiency Info website can be contacted by e-mail and may be able to help with writing letters to GPs.

    b12deficiency.info/b12-writ...

    b12deficiency.info/what-to-...

    Time to change GPs?

    Can you see another GP or change to another GP surgery?

  • Thank you so much for your help.

    I'm going to be seeing a physician at the local hospital soon hopefully and also a neurosurgeon because I just had a spinal cord MRI and I have damage on the report.

    With any luck one of the two will see the bigger picture and get me the right treatment.

    The Gp said 'within 6 weeks'.

    To answer your question

    Dad says nana's sister got regular b12 injections.

    Both mum and sister have thyroid issues.

  • Ps I've seen three different gp's and had a phone conversation with another at the practice.

    None will entertain me due to their most recent b12 result of 314pg yet discount my private results and are not interested in the 2012 reading of 146 on their own system or the fact that I've been reporting horrible fatigue since then or the fact that I've been seen by a cardiologist for postural tachycardia who said I had a physiological cause but he wasn't sure what was causing it as all his tests were ok. (That's before I uncover the the possible b12 issue. It's his docs that send me for the spine mri to check for nerve compression) but to add insult they've not even written to me or my Gp with an appointment to give the results from 20/12/16. I had to get my Gp to download the report from the hospital system then sit and listen to him read it and find out I have something 6x4mm on my cord.

    It's only after reading that that he agrees to refer me to the physician re symptoms / b12 and the neurosurgeon.

    The MRI thankfully suggests the findings are chronic in nature and unlikely to be causing my issues although the report suggests my complaints were back pain and bilateral altered leg sensations.

    I never mentioned back pain as I don't get it. What I did describe were little electric shocks running down my spine occasionally at night in bed for the last few years. (I've not felt them since my other symptoms got worse in July though).

  • "Dad says nana's sister got regular b12 injections."

    Does GP know that your great aunt had B12 deficiency? Is it possible to find out why she had B12 injections eg PA maybe?

    Have you had a neurological examination?

    Some links/subjects that might be useful if you see a neurologist

    1) Lhermitte's sign

    2) Romberg's test

    en.wikipedia.org/wiki/Romberg's_test

    3) A search about Proprioception problems on this forum.

    4) Information about Sub Acute Combined Degeneration of the Spinal Cord

    pernicious-anaemia-society....

    "to refer me to the physician re symptoms / b12 and the neurosurgeon"

    If you are going to have surgery be aware that having nitrous oxide can cause inactivation of B12. See next link.

    gov.uk/drug-safety-update/n...

    b12deficiency.info/what-are...

    Could you change to another GP surgery? I stayed with a surgery for many years despite at times being treated unkindly because I thought the problem was me. I realised after I left that it wasn't me that was the problem.

    There are a few local PAS groups in the UK. Details are available to members of the PAS. I was thinking a local PAS group might be a source of info on helpful GPs.

  • One thing I found out that helped to explain why I didn't get the treatment I expected was that some areas of the UK have their own local NHS B12 deficiency Management guidelines.

    Sometimes these local NHS B12 guidelines differ in their guidance to the "BSH Cobalamin and Folate Guidelines" and in some cases have not been updated for a number of years. Perhaps your GPs are following local NHS B12 guidelines.

    Local NHS b12 guidelines may be found by an internet search, a search on local NHS website (possibly under haematology guidelines), a FOI (Freedom of Information) request to local NHS website.

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