Changing the way UK members are treated

by | Apr 9, 2016 | 9 comments

Last year I met with the editor of the British National Formulary (BNF) to discuss the problems that a great many of our members have in receiving adequate replacement therapy injection based on their individual needs.  The meeting was successful and I was told that if I was able to provide evidence that doctors in the UK were happily prescribing more frequent injections than one every three months which is the current guideline.  However, collecting that data was not the only evidence that will be presented to the BNF.  You see, one of our members who is a medical professional has gone right back to basics and investigated the original licence that was granted to allow Hydroxocobalamin to be used to treat Pernicious Anaemia.  And guess what?  The original frequency was stated as “monthly or any other frequency”.  And there’s more.  The original licence stated that the injection could be administered as either Intramuscular or Sub-cutaneous.

Anyway, this weekend will see a new survey being posted on the members page of the society’s website.  Many thanks to one of our volunteers (who is a medical student) for working with the lead collator to produce the survey.  Please consider taking the survey if, and only if your doctor is prepared to depart from the current guidelines.  It should be there by the end of this week-end.

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  1. Karyl

    Martyn. You are a true Champion of the people! Thank you for your dedication to the cause and all you do!!

  2. Mabsie

    Hmmm. My father had his injection monthly. That was back in the good ol’days of course. Well done to the volunteer. Martyn is amazing as usual ⭐️⭐️⭐️⭐️⭐️

  3. clivealive

    Not sure I qualify for the 3 monthly criteria for the survey as I’ve been on monthly cyanocobalamin for nearly 45 years but have managed to “persuade” my doctor to allow me to have an occasional three week one “when I feel the need”.

    I’m now working toward getting the interval permanently down to every three weeks.

  4. D

    My doctor gives weekly but I’m in the US. Still not enough for me.

  5. Paddie

    I too am a health professional- retired Have generally considered myself fit but over last 5 or so years I’ve had a number of symptoms -non- life threatening- but enough to seek advice. ;an inflammatory “arthritis” affecting knee and foot and hand joints with OA changes but atypical. Manage with exs and meloxicam.
    Then “Reflux” managed with omeprazole (thats another story.)
    “Menieres”‘ symptoms out of the blue!! Treated with betahistine which I discontinued after being episode free for 6 months.”Memory” problems which i put down to normal ageing.
    I was referred to podiatry for supportive insoles, and here began the PA saga. On examination she found diminished touch and vibratory sensation. explained the possibility of PA which was news to me. Letter to GP-blood test OK.
    Read up about PA and over weeks became aware of tingling in feet spreading to hands. Told it was idiopathic neuropathy! This was summer 2014 and as the year progressed developed severe pain in upper arms not received by paracetamol or cocodamol.Had further blood test still supposedly normal and GP said Carpal Tunnel. Pain got worse and another dr prescribed amytpytaline. However before determining whether this was beneficial. yet another GP (young female) called to say she had looked at my B12 results which were indeed on the low side. explained that the pathology dept had changed testing method.Intrinsic factor test then done and positive. I was so relieved and delighted to get a diagnosis which explained so many things. Unfortunately I do have lasting neuro-damage which I am managing. I have not seen a haematologist but my wonderful GP contacted him to see if my injections could be increased to monthly. He agreed and that is where I am up to.
    I have also had an endoscopy showing significant oesophagitis requiring ongoing omeprazole which I had discontinued due to B12 implications. Bilateral carpal tunnel surgery done 12 months ago and pain relieved. Lovely hand surgeon very interested in PA.
    Sorry such a long “write” but just to say that there is light at the end of the tunnel. It does help (at times) having a health related background.

  6. clivealive

    Although my P.A. journey started “officially” on 10th May 1972 events from 13 years before may well have been the true beginning.

    Around Christmas time in 1958 I started to get “indigestion” pains in my left chest area and these got progressively worse until the Tuesday morning of 28th April 1959 when my (then unknown about) peptic ulcer perforated and I vomited blood at work. I was taken to the Birmingham General Hospital and sent home with a letter to my doctor. On the Thursday, because I was still losing blood I was rushed to the Dudley Road Hospital, placed in a medical ward and given transfusions and Horlicks tablets. At visiting time on Sunday 3rd May I filled a kidney bowl with blood in front of my father and sister. The surgeon (Mr Aldridge) was called and he operated that afternoon removing two thirds of my stomach.

    I was 17 years old and the only advice I can remember being given by the surgeon was that I would have to give up my electrical apprenticeship and “find a sedentary job”. Being an otherwise relatively fit and healthy 17-year-old I ignored Mr Aldridge’s advice, completed my apprenticeship and qualified in 1962. It was around this time that I began feeling more tired, was getting ill more often with colds and bronchitis and so took an opportunity which presented itself of an indoor job with an electrical wholesaler as a storeman/buyer which did not entail the same amount of physical work.

    In September 1965 I married my 19 year old wife Valerie but shortly after Christmas she began to complain of feeling tired and listless so I got an appointment for her to see a doctor on 14th January 1966 at what was to become our family’s practice in Aylesbury. After innumerable blood tests Valerie was rushed into Stoke Mandeville Hospital suffering sub acute bacterial endocarditis possibly caused by her having had rheumatic fever some years before. She was in hospital on that first occasion for five weeks in S.M.H. before being transferred to The Churchill Hospital in Oxford for weeks for further tests.

    The effects of that long separation, together with the worry of what was going on with her were to have a profound impact on me. My life, my whole world had been turned upside down and on 6th April 1966 I came home from work with ‘flu, our doctor (Wool) came round and signed me off work for a week.

    Now and for the next few weeks, it was my turn to see the doctor. On 20th April, Valerie entered into her diary, Saw Doctor. Valerie & Clive. Clive’s complaint Hypertension owing to worry about me”. I was signed off for another week. The flu (if that is what it was) had been just about the “last straw” to my already struggling mental and physical condition and had dragged me down to a very low ebb. On Wednesday, 27th April 1966, Valerie noted that I had yet another appointment with Doctor Wool at the surgery. By now I was getting a bit worried about what was going to happen with me, as this was already my third week off work and more especially when I was signed off for a fourth week. On 11th May I received a letter from my employer saying they “were sorry I had been ill for several weeks” and gave me one week’s notice of termination.

    I managed to get a job with a local builder nominally as a labourer who could do any electrical work needed and somehow managed to cope with the physical work involved. Sadly early in 1968 the builder “reluctantly” had to let me go, as he didn’t have enough work on hand to continue employing me. Indeed I was not to work again for over two years, until February 1970.

    The psychological effect of being made redundant again, combined with the deterioration in my general health and specifically with regard to my (then unknown) pernicious anaemia, was devastating. Once the initial shock of having to go home and tell Valerie that I was once again “out of work” had worn off, I was left feeling totally deflated, useless, unwanted, – a complete and utter failure.

    That unemployment around the country was running at an all time high didn’t help me much and I rapidly fell into a morose depression from which Valerie, although she tried her hardest, failed to lift me, however she did eventually persuade me to go to “see the doctor”. As a result of her examination, Doctor Wool diagnosed “depression”, immediately signed me off “work” indefinitely and prescribed the then, in vogue and rapidly becoming ubiquitous tranquilliser Valium, which, over time and in the course of the next few months, was joined by two others, Librium and Tofranil. My tummy was playing up too and Dr Wool prescribed “Neutradonna”, a huge, anti-spasmodic tablet, containing belladonna (deadly nightshade). It was a good job that prescriptions were free then, as Valerie and I almost rattled with the number we were taking.
    At some time during the summer of 1968 I was sent for a “Schillings” test where I drank a glass of radioactive vitamin b12 and given a massive injection of b12 into my arm. My urine was collected over a period of time and measured for the amount of radioactive b12 passed but as the results were “inconclusive” I heard no more about it.

    Being “signed off work” for such a long time meant I had to undergo an “assessment” of fitness or otherwise to return to work and I was eventually sent on a five month long Government retraining course in Accountancy in London. This started in September 1969 and ran through to February 1970. I had by then “weaned” myself off the tranquillisers and managed to not only complete the course but also to get a job as book-keeper for a large firm in my home town, starting the following week.

    The spur and incentive that had dragged me off the drugs and got me through college and “back to work again”, two years earlier, gradually wore off and by 1972 I was starting to feel physically very tired and mentally exhausted. Some of it could be put down to learning the job with a grim determination to succeed that, for me, was really quite remarkable, but the rest was attributed to the ongoing, general decline in my health.

    I had still been a regular visitor to Dr Wool’s surgery (now located in Oakfield Road) for more tests, none of which indicated the source of the problem and so she played a hunch and sent me for another “Schillings Test”. So, sometime during the Spring of 1972 I duly presented myself at Stoke Mandeville Hospital for another “radio active” drink and large “sample” container. The man who administered the test remembered me from four years before and told me quite categorically that “no-one has a Schillings Test done twice”. I said “I do” and I did!

    The day in May 1972 that I went back to Dr Wool for the results is etched indelibly into my memory.

    It was on the Wednesday afternoon of 10th May that I duly presented myself at the surgery and Dr Wool greeted me with the words “Do you want the good news – or the bad news?” I said that perhaps she ought to give me the “bad news” first. She replied “The bad news is, that you’re going to die – and you’re going to die within the next three years”. Naturally I was somewhat rather keen to know what the “good news” was. So I asked Dr Wool what the “good news” was.

    She said, with a mischievous twinkle in her eyes, “The good news is you’re not going to die within three years if you have regular injections (of vitamin B12) from now, for the rest of your life.

    To the relief of both of us (as I think Dr Wool was getting a bit frustrated with my long, ongoing “condition” too) the second Schillings Test had showed that I was suffering from Pernicious Anaemia and I was to have Cytamen (cyanocobalamin) injections every four weeks from then on.

    Down through the next 38 years I was never monitored or asked by either doctors or nurses how I was coping with my P.A. However I was beginning to notice that in the run up to my next injection I was beginning to have some of the symptoms associated with it – pins & needles, burning legs/feet, shooting pains in hands, numbness, breathlessness, tinnitus, loss of balance, back pains, fog days etc.

    On Friday 16th April 2010 I joined the Pernicious Anaemia Society and posted the following: “I was diagnosed with PA back in 1972 consequent upon having had surgery for a peptic ulcer in April 1959 at the tender age of 17. In those days I was not many years from having to be put on a diet of raw liver – 3 times a day!!! Thank goodness for Cytamen 1000 mcg…… So, for nigh on 40 years I have “got by” with my 4 weekly injections – my “little shots of Red-Ex” as I call them. However when I complain to my GP that in the run up to the next jab I start to feel symptoms returning… he simply laughs, telling me (essentially) that it’s “all in the mind” and that the dosage will last for a month. How can this be? This “one size fits all” syndrome that doesn’t take into account size, (I’m 6’4″ @ 13.5 stones) age, activity or metabolism. I cannot believe that I am the only person with PA who experiences this feeling of exhaustion in the run up to the next shot – or am I?”

    I was astounded at how many “fellow sufferers” there were “out there” who experienced the same thing and so for the last six years I’ve been learning more about the condition.

    In summary then:

    The worries about my young wife’s illness in 1966 and the loss of jobs would be reason enough cause for me to have had “hypertension” but it was not until early 1968 that I was diagnosed with “depression” and put on Librium, Valium, (anxiety & panic attacks) Tofranil (depression) and Neutradonna (anti-spasmodic). It was not uncommon for B12 deficiency to be misdiagnosed as depression so my G.P. was probably “right” prescribing the above, this being borne out by the “inconclusive” first Schillings test. That she “played a hunch” and sent me for the second, “unheard of” Schillings test four years later probably saved my life and certainly spared me having many of the irreversible neurological P.A. symptoms, so I shall ever be grateful to her for that.

    My latest B12 and Folate test results (14th March 2016) are as follows:
    Serum Folate (SZ1706) Normal no action 18.2 ng/ml 3.10 – 20.50ng/ml
    VITAMIN B12 (SZ1706) Normal no action 469 pg/ml 187.00 – 883.00pg/ml
    B12 Comment – B12 in normal range

    On 25th March 2016 I took a heavy fall whilst walking along a public footpath, badly damaging my right hand, wrist and knee. I’m sure my general unsteadiness and awkward gait contributed to this fall and I feel it is worth noting that this occurred just three days before my next scheduled B12 injection.

    I was also diagnosed with type 2 diabetes this time last year and with low Vitamin D in March this year, the symptoms of both of which “cloud” the issue because of their similarities. In addition of course there is my age at coming up to 75, that has to be taken into consideration.

    When shortly after the diabetes diagnosis in 2015 I had my first (ever) “eye test” it was found that there was already damage to the retina in my left eye. This may well have been caused more by the P.A. than the diabetes as I remember Dr. Wool saying back in 1972 that my eyes would be “checked” – they never were.

    Although my current doctor acknowledges the fact that, because I have the injections, the above “Normal” B12 results may be “skewed”, she still wants to “rule out” any of the others before acceding to my request, so my struggle to get more frequent injections “because I feel the need” continues.

    1959 – Perforated peptic ulcer and gastric surgery
    1966 – Diagnosed with Hypertension
    1968 – Diagnosed with Depression. Librium, Valium, Tofranil and Neutradonna. 1st Schillings Test.
    1972 – 2nd Schillings Test. Diagnosed Pernicious Anaemia. Cytamen B12 every 4 weeks started.
    2010 – Queried with G.P symptoms in run up to next injection. Joined Pernicious Anaemia Society.
    2015 – Diagnosed with Type 2 Diabetes. (on Metformin). Retinopathy found in left eye.
    2016 – Diagnosed with low Vitamin D (on supplement). Serum B12 Test result @ 469pg/ml “Normal”
    Queried with G.P symptoms in run up to next injection.
    Bad fall on pavement on 25th March 3 days before next injection due.
    Note: It was 13 years between the gastric surgery and P.A. diagnosis

  7. Alison Richards

    Dear Martyn, Have you had any dealings with the RCGP on the knowledge or lack of it that their members seem to have about PA and B12 Deficiency. Have you been able to do a session at their annual conference? I am a member of their patient group and and trying to work out whether I can raise the issue and what needs to happen to change things.
    I do not think I have PA but am currently trying to persuade my GP that a B12 level of 118 is low. Their lab has it within the normal range. The variation in normal ranges seems to be a problem, how does it vary so much. I have numbness and tingling in feet, sighing-had this for ages but didn’t realise it was significant, difficult to explain what it felt like till I saw your description in an article.

    • Martyn

      Please see my post ‘Letters to the RCGP’ from February 16th

  8. Dong

    I am very interested to read your site. As an older, long term vegan I have just hit the brick wall of NHS idiocy over B12 related stuff.

    Not for the first time. I’ll spare you the stories.

    I just wondered if there was any synergy going on between the PAS and Vegan Society as it would appear to be we are allies?

    I’ve received a blunt “not licensed” refusal re methylcobalamin. I supposed to be receiving injection but am fighting them over being able to self-medicate (as I was trained to do so by an overseas doctor).

    In the past, I have gone “outlaw” and found a Chinese herbalist doctor more than willing to give me B12 injections. In fact, they were B12 and Dong Quai (Chinese Angelica – not sure why but it was what she did). It made me feel almost instantly wonderful, a rush of warmth around my extremities. Unfortunately, she is no longer in business (for the record, she was also a properly trained allopathic doctor in China, but not recognized or able to be licensed in the UK).

    Thank you

    Thank you.


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