First of all, my Intro/condition/current status

Hi all,

I was diagnosed with pernicious anaemia in 2005, but because my B12 level was "high" (according to the doc) back in 2012 or sometime around then, they removed the 3 monthly injections from my treatment plan.

Ever since, my health has been on a gradual decline but we've never attributed it to pernicious anaemia because I've been diagnosed with so many other conditions since I first fell ill in 2006.

(I collapsed, went to bed to recover from what I thought was Christmas shopping exhaustion, woke up and couldn't walk or talk. Went into EAU at Stafford because they suspected a stroke and my health has been on a gradual decline ever since.)

Other confirmed diagnoses:

Degenerative Disc Disease (cervical and lumbar)

Spondylitis

Osteoarthritis

Scheuermann's Disease

Hypermobility

Fibromyalgia

Myalgic Encephalopathy (ME/CFS)

Presbyopia

Originally thought to have Meniere's Disease but they said my symptoms were "too bad to be MD"

(now realised they're probably just normal Pernicious Anaemia symptoms - Severe tinnitus (never stops, EVER) severe vertigo (can't even LOOK left to right without going dizzy - and can't watch fast moving pictures on tv/pc and absolutely cannot lie flat, anything less than a 45 degree angle I end up violently sick. Was later diagnosed with Vestibular Migraines, but that would only explain the severe occasional attacks (severe because I can do nothing but sleep it off) not the constant severity of symptoms))

Nerves to/from bladder are either severely damaged or dead altogether - catheterised permanently (suffered retention AND incontinence - my bladder could not tell my brain when it was full, and my brain could not tell it to empty - diagnosed after a course of urodynamic testing at New Cross (they filled my bladder to 800ml before they decided it was counterproductive to try and fill it any more))

Nerves to my back passage are also severely damaged or dead, now have a colostomy for "quality of life".

I THINK I remembered all diagnoses, but memory loss is big and severe for me so I could very well have forgotten something big and flipping obvious - sorry.

I had a seizure today, and it has taken me no less than 6 hours to regain the use of my right side (it was completely dead from the seizure until 6 hours later) the seizure was one of my worst, my better half said I was struggling to breathe, kept stopping breathing, could not respond to him (I normally can) and it lasted longer than usual by minutes. (he didn't literally time it) It was also the worst state after the seizure, I have had numb extremities before, but never my entire right side of my body

including the side of my face.

I refused an ambulance because I was pretty sure it wasn't a stroke, even though others had their doubts, I felt mentally completely normal. He has told me if I have another seizure in next 24 hours HE will order an ambulance and I'll have no choice in the matter. :(

Anyway...

I am here as a non-paying member to start with, if I feel that it is worth spending my pennies that I have few of, I will donate to be a silver member (Ie if I need to refer to the whole forum, or the documentation)

I look forward to meeting you all. :)

Oh, I should add I FINALLY (been waiting 2 week for appointment after doc suggested bloods) have my blood tests tomorrow morning, we hope to ask for my B12 level over the last few years if it's easy to check so that we have something to refer to if it's obviously low by your standards not the NHS.

(When my Doc said my B12 was just above what it should be 2 weeks ago, he didn't tell me how much/little he considered what it should be)

My other half found your site this afternoon (I'm already a member of HealthUnlocked) when he was worried sick googling about pernicious anaemia (we have always blamed the seizures on B12 levels, which is why I was having bloods done - I've been having regular almost daily seizures for about 2-3 weeks now but none of them have been as bad as today)

My consultants have never understood why my doc suddenly decided my levels were too high, considering Pernicious Anaemia never goes away. BUT they have never queried it with my doctors surgery.

Anyway, again, I look forward to meeting you all.

Best wishes

"Granny" :)

32 Replies

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  • Hi Grannyweatherwax if you were "diagnosed with Pernicious Anaemia in 2005" and assuming that you were prescribed Vitamin B12 injections at that time then they are for life and your "2012 or sometime around then" doctor deserves to be struck off.

    Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

    google.co.uk/url?sa=t&rct=j...

    If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

    I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

    It is also important that your Folate level is monitored as this is essential to process the B12.

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

    I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

  • when I was diagnosed they said that my ileum seems to struggle with absorbing the B12? (they did the test where I had the tablets then had to pee into a massive container for 24 hours) they said that nearly all of the B12 tablets they gave me came through into my urine.

    That was when I was diagnosed and prescribed with the injections.

    The doc who took me off them is the head of the surgery, he owns this surgery and many around the area, he's all about budgets it seems. He also took me off quite a bit of other meds and at first refused my Pregabalin, until the consultant wrote him a telling off letter.

    (this same doc tried to stop my then 900mg of daily morphine without weaning, he took it off me, after I was nearly hospitalised with the withdrawal symptoms nearly killing me, they agreed to wean me off it over a course of months instead - it was only when I got up to 900mg that they realised the constant increase in the dose meant that my body was addicted and it was doing bugger all for the pain *rolls eyes*)

    I am going to make an appointment to see my doc regarding the B12 issues, my other half always comes with me as I am not able to self propel my wheelchair. He will ensure that I am not fobbed off.

    Oh, in my intro I should have explained that I am SEVERELY disabled, my legs no longer belong to me, my arms are going that way too, I am chair bound at home (can't sleep in a bed) and wheelchair bound when we leave the house. I barely move out of my chair and not by choice, my muscle weakness is severe.

    My symptoms that we believe to be to do with PA...

    Spasms and cramps in all muscles, even places I didn't even know there were muscles! (even my bladder has severe spasms, I'm on buscopan to stop it expelling the catheter repeatedly)

    Numbness in all extremeties, if my elbows are at less than 135deg (outside) angle then my arms go dead, sitting up with or without my legs raised, they go dead.

    Also "painful numbness", so they feel numb, can't feel anything BUT there's throbbing pain deep inside.

    Memory loss, short and long term, sometimes very severe.

    Aphasia.

    "Brain fog"

    Cloudiness of vision.

    Heavily decreased vision quality.

    Presbyopia of an 80 year old (so say the optometrists, I'm 41)

    Dual Incontinence due to confirmed nerve damage or totally dead nerves.

    Muscle weakness. (I can only stand up for about 2 minutes maximum (IF my legs allow) before my spine hurts so much it winds me, because I have no core muscle strength AT ALL)

    constant pins and needles in the end of my fingers.

    Can rarely feel or wiggle my toes.

    Severe vertigo

    (just LOOKing with my eyes sends me dizzy - the test to look up with eyes closed - I fall over,

    I cannot watch action movies etc because the rapid movement makes me dizzy (and I can never focus quick enough)

    car travel causes severe nausea due to the physical movement and the fact I cannot focus with my eyes quick enough on any given thing (I gave my license in years ago, don't worry)

    sometimes my attacks are so bad, that all I can do is sleep, or I will vomit violently.

    They did a test at hospital by putting my head back and sideways, I vomited for 1.5 hours solid all the way home.

    I had an MRI for my spine, I threw up repeatedly and had to swallow it because I wanted to get the scan over and done with

    I CANNOT lie flat, when they created Bert (my colostomy) they had to anaesthetise me sitting up then lie me down when I was out for the count because they didn't want me vomiting prior to the op.

    If I move my head side to side even slowly, I get dizzy, if I look up or down I get dizzy, and bending over makes me feel like I'm going to pass out with an exploded head (and this is all with very limited neck movement due to the Degenerative disc disease and the spondylitis)

    Severe tinnitus, I NEVER get a break from hearing the ssssssssssss noise, never, ever. sometimes it's so bad I want to scream to deafen it out, or just cry myself to sleep. Even listening to music doesn't help as it accentuates it rather than hiding it or deafening it out.

    Hearing loss I have hearing aids to try and compensate for the amount of hearing loss (the above three symptoms were what gave me a diagnosis of Meniere's Disease, then they realised it wasn't because my symptoms never die down, they're constantly there)

    Irritability sometimes I can be SUPER irritable for no reason whatsoever. Also one minute I'll be super happy, even hyper, next minute I just want to cry.

    and obviously the seizures that almost go away on the B12 injections.

    I have oodles of other symptoms, but I don't know whether they are down to PA, or various other conditions *sigh*

    Thank you for your time clivealive

  • What a bad time you have had. The advice clivealive has given you is good.

    I hope you, with your husband's back up, can get your GP to see sense. If not, maybe it would be worth joining the PAS Society and asking Martyn Hooper to write to your surgery.

  • My heart goes out to you Grannyweatherwax your practice's treatment of you is despicable and as beginner1 suggests, if your B12 injections are not reinstated immediately (and preferably with loading doses) join the Pernicious Anaemia Society. It costs but £20 for a year's membership and they have been known to "intervene" directly with doctors.

    Don't forget to mention your Folate level.

  • Hello Granny

    I didn't think I could be shocked any more by what happens to so many people one this site, when B12 injections are stopped, but I am.....

    I don't understand how these consultants could stand by and not reinstate your B12 treatment - outrageously negligent, all of them - as Clive has said, treatment for PA is for life. Moreover, they should know that, once on B12 injections, measuring serum B12 is irrelevant - page 4 of the latest BMJ research document below:

    "Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required".

    cmim.org/pdf2014/funcion.ph...

    I'd also recommend joining the PAS, with its many resources for help and support.

    You are incredibly long suffering and brave to have come through this with a spirit that has obviously survived....

    Hugs and very best wishes for better treatment Granny.

  • You poor thing. A living nightmare of an illness. I have read a lot on this and it sounds as if you have Subacute Combined Degeneration of the Spinal cord. I am not medically qualified but urge you to read about this. I think this has happened to my brother.

    You have been very badly treated.

    I hope you can have B12 in the form if Methylcobalamin injections to try to help you.

    God bless.

  • Simon has just tested my feet (my fiance) and I have a positive Plantar Reflex (Babinski sign?)

  • Hi,

    "I was diagnosed with pernicious anaemia in 2005, but because my B12 level was "high" (according to the doc) back in 2012 or sometime around then, they removed the 3 monthly injections from my treatment plan. "

    I'm shocked that with a confirmed diagnosis of PA your injections were removed. PA treatment is for life and removing injections could increase the risk of neurological damage including problems with spinal cord.

    PAS (Pernicious Anaemia Society)

    It's worth considering joining the PAS as they can sometimes intervene on behalf of members by writing letters.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response.

    PAS has published a leaflet "Treatment is for life" available to members. If you joined PAS you could print out this leaflet for your GP.

    pernicious-anaemia-society....

    There is also a section on PAS website for health professionals that your GP might find is helpful.

    pernicious-anaemia-society....

    There are many stories on Martyn Hooper's blog about how PAS has helped members who have had injections stopped.

    martynhooper.com/2017/06/22...

    martynhooper.com/2017/07/01...

    martynhooper.com/2016/04/24...

    martynhooper.com/2015/08/20...

    I'd also suggest you read or get someone in your family/circle of friends to read "BSH Cobalamin and Folate Guidelines" It's a UK B12 document that outlines treatment and diagnosis of B12 deficiency including PA.

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

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    "We hope to ask for my B12 level over the last few years "

    Access to Medical Records

    Some people on forum get a complete set of their medical records. Can be very interesting to see what has been written in past. Some GP surgeries have online access to a summary record but it is only a summary and may not have all the info a person wants to see.

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

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

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

    Unhappy with treatment?

    Link about writing letters to GPs about B12 deficiency. Person who runs website can be contacted by e-mail. Details on website.

    b12deficiency.info/b12-writ...

    CAB Citizens Advice Bureau

    citizensadvice.org.uk/healt...

    HDA patient care trust

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

    hdapatientcaretrust.com/

    MPs

    Local MPs may be able to intervene on behalf of patients who are not getting treatment they are entitled to.

    parliament.uk/mps-lords-and...

    Other B12 info

    1) Pinned posts on this forum. I found it helpful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post. I think there is something in summary about how testing of B12 levels, once treatment has started, is irrelevant.

    2) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    3) B12 books

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

    "Living with Pernicious Anaemia and Vitamin B12 deficiency" by Martyn Hooper. Contains several case studies.

    "Could it Be B12" By Sally Pacholok and JJ. Stuart (USA authors)

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

    4) BNF (British National Formulary) Chapter 9 Section 1.2

    BNF is a slim book that all UK GPs will have access to, that outlines treatment for various conditions. It's possible to get own copy from good bookshop or popular internet retailer. I'm pretty sure that Chapter 9 Section 1.2 states that PA treatment is for life.

    UK B12 treatment info is also in "BSH Cobalamin and Folate Guidelines", about a quarter through document.

    In UK, those with B12 deficiency with neuro symptoms are supposed to receive more intensive treatment than those without neuro symptoms.

    It's a loading injection every other day for as long as symptoms get better then an injection every 2 months. I note that before your injections were stopped you were having injections every 3 months which is the standard treatment in Uk, for those without neuro symptoms.

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

    patient.info/doctor/pernici...

    bnf.nice.org.uk/drug/hydrox...

    cks.nice.org.uk/anaemia-b12...

    5) Risk Factors for PA and B12 deficiency

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    6) B12 Deficiency Symptoms

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    7) Stichting Tekort website

    A dutch website about b12 that has a section of English language articles about B12.

    stichtingb12tekort.nl/our-e...

    Marymary7 mentioned SACDSC (sub acute combined degeneration of the spinal cord). If you want to read more about this, there is an article on it in library section of PAS website available to PAS members. There are other articles about SACDSC online.

    pernicious-anaemia-society....

    Blog post that mentions SACDSC on Martyn Hooper's blog.

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

    "the test to look up with eyes closed - I fall over, "

    Have you had "romberg test" and other tests for proprioception difficulties?

    Have you seen any neurologists over past few years?

    I am not medically trained just someone who has struggled to get a diagnosis.

  • Hello and thank you for your reply.

    romberg test? I toppled every time, they kept trying this test but the less mobile I became the less I was able to stand for the test.

    I had the test where they lie you down on your side and turn your head and pull it back to see if your eyes roll to the back of your head? - that was the test that made me vomit for 1.5 hours solid all the way home, only relief was forced sleep (tramadol then sleep)

    The neurologists keep sending me back to the docs claiming there is nothing more that they can do (i've had lumbar punctures, MRI's, ECG's, xrays, more scans, CAT scan on my brain, a test where they stuck electrode style needles in my muscles to see their reactions and shocked the muscles to see how they reacted)

    Last neuro I saw told me that they can do no more and I should see a psychologist because I do NOT have a neurological condition.

    I saw a neuro-psychiatrist who wanted to commit me because even my confirmed physical diagnoses were apparently all in my head. He said it was all ME/CFS and he didn't believe in ME/CFS, it's not a neuro condition it's all in the head. I got Simon to roll me out and I discharged myself from his care immediately. Trouble is he had already written to the docs to suggest removal of various meds.

    I've seen a psychologist who tested me to see if it was all psychosomatic. She passed me with flying colours explaining that I was way too happy and not remotely of the profile that tends to be psychosomatic (I didn't remotely feel sorry for myself or something like that - tries not to laugh)

    Rheumatology to diagnose the fibro - they then discharged me back to the doc

    Pain management - The consultant prescribed me with tramadol for "bone pain" and pregabalin for "nerve pain", then I was referred to his pain management nurse, the woman I saw (his supposed qualified nurse) told me that my bladder had stopped working because I decided in my brain to stop using it so the connections had simply died she said the same about my legs, that I was choosing to not use them and that I should do the exercises she gave me to get all control back. (I laughed and decided if I got another letter to see her, I would discharge myself from her care)

    She referred me to have hydrotherapy - which obviously was refused because when I got there they read down the checklist and then noticed my leg bag, they said she would have known that a catheterised patient was NOT allowed in the water because of cross contamination.

    She referred me to something else, the response to that was a letter from my doctor TO her, copied to me saying that service just wasn't available, they had never heard of it (don't know what it was now sorry) (they only see me once every 18 months or so too, not sure whether that was waiting times, or just how crap the patient system is)

    Last neuro I saw told me that they can do no more and I should see a psychologist/psychiatrist or have CBT and graded exercise, because I do NOT have a neurological condition. (his words)

    They THINK that this is all in my head, that I need psychiatric help, strict committed hospitalised style psychiatric help. (In Stoke on Trent University Hospital)

    I'm beginning to question my sanity, seriously.

  • You need your injections reinstated as a matter of urgency.

    Are you a member of the PAS - if not not then please join and ring them.

    pernicious-anaemia-society....

    First thing to do is to write to your GP pointing out that you are not being treated correctly as you have a diagnosis of Pernicious Anaemia that means you cannot absorb B12 from your diet and therefore need injections. You should also point out that the UK guidelines changed in 2014 for a number of reasons, including the fact that a B12 deficiency cannot and should not be treated on the basis of using the serum B12 test to measure levels in your blood. B12 deficiency is caused by lack of B12 in your cells. Unfortunately high levels of serum B12 can cause a reaction that keeps your B12 in your blood and doesn't allow it to pass into your cells. The only effective treatment for this is to keep levels in blood very high so enough gets through despite this reaction. It also means that serum B12 normal range cannot be applied to people who have had B12 injections.

    As you now have neurological symptoms you should be put back onto a injections and given the time since your last injection and the fact that you have now developed neurological symptoms you should be put on using the loading regime where there is neurological involvement (injections 3xweek until symptoms stop improving - with a review at 3 weeks) followed by 8 weekly maintenance shots.

    Suggest that you copy the letter to the practice manager and also to the local PALS.

  • Thank you, I cannot join this month as I have no money spare and my Fiance cannot help as he is scraping money by, saving for the advanced payment on our Motability car that we need to order in a couple of weeks, so it will have to wait a month. I've been without them about 5 years now, I'm sure that another month won't hurt?

    Thank you for your advice though, I truly appreciate it and I hope that once I become a member that they can help me with my case.

    I'm rather down today because my Fiance read that neurological DAMAGE from being without the injections is permanent? I never dreamed for a cure/miracle recovery from any of this, but I did see a glimmer of light at the end of the tunnel, imagining that it will not always be this bad. However, currently the only light is coming from the speeding train coming through the tunnel hehe :/ *tries to smile*

    Thank you again for your input. I am most grateful :)

  • there is always hope - its never definite that the damage will be permanent just that there is a possibility and sometimes healing can take a very long time. Sorry to hear about the finances - you can always start putting together and even send the letter before you join and I'm sure that people on here will help you with the drafting.

    Feel there should be some words of wisdom from Nanny Og that I should quote right now but can't remember anything appropriate.

  • My Fiance felt that this was too important to even THINK about his budgeting right now, so has paid. I am now a silver member :)

  • well, he sounds like a keeper - good to have someone who can support you whilst you try to get things sorted.

  • Hello Grannyweatherwax. I agree with all that has been said here.

    In particular, your B12 injections need re-starting immediately.

    As others have said, because of your severe neurological symptoms, you need to be on every other day injections - perhaps for many months/years, in order to try and achieve maximum improvement.

    Once on injections - as before - your serum B12 levels should be high - this is no reason (not ever) to withdraw treatment for B12 deficiency.

    Also suggest you download information about subacute combined degeneration of the spinal cord to show to your GP. This condition is caused by untreated or undertreated B12 deficiency.

    Perhaps the best and quickest way to get treatment re-commenced (and continued appropriately) is to join the Pernicious Anaemia Society and ask Martyn Hooper to intervene with your GP on your behalf. If you outline your current health issues, explain that treatment with B12 injections was withdrawn in 2012, and that you GP will not treat you...I'm sure that Martyn will want to help you. And he's been very successful at helping people in the past.

    Martyn can be contacted on 01656769717. You may get through to an answer phone and if so leave a message and your telephone number: Martin always gets back to people, though sometimes not on the same day if he is out of the office.

    Grannyweatherwax, we hear some pretty awful things in this forum but your 'story' is one of the worst we've heard for a long time.

    I sincerely hope that you manage to access the treatment you so clearly need, very quickly.

    If you decide not to contact Martin and are still struggling to get treatment from your current GP, please post again for more advice.

    It might also be worth thinking about whether you can change GP surgeries. Whilst there is no guarantee that a new GP would be any better, they most certainly couldn't be worse!

    Please take very good care and do let us know how you get on.

    xx

  • If I had "subacute combined degeneration" would it not have shown on my last MRI of the "lumbar and cervical" sections of my spine? I don't know. They said that there was no nerve compression (I wanted to know if my worsening dual incontinence and worsening extremity numbness and spasms and cramps and pins and needles, was due to the degeneration of my discs and vertebrae)

  • Hi Grannyweatherwax . It all depends on when your last MRI scan was...

    Your dual incontinence and worsening neurological symptoms could well be to do with your untreated B12 deficency rather than the degeneration of your discs and vertebrae. (As there is currently no compression of the spinal cord, this is a likely cause - unless you have some other underlying neurological condition - which I understand has been ruled out).

    The whole point about subacute degeneration of the spinal cord is that this can and does develop due to untreated or undertreated B12 deficiency...if you do not have this now (and I'm not saying you do) you are at risk of developing it if treatment for your B12 deficency caused by pernicious anaemia continues to be withheld. And the longer you remain without treatment, the greater the risk. And if this condition does develop, it is potentially irreversible.

    I flagged this up to you since your GP and your consultants seem wholly oblivious to the fact that they are exposing you to this risk.

    Showing this information to your GP may just give him the very large shock he needs to reinstated your B12 injections - in accordance with the guidelines for intensive treatment when neurological symtpoms are present (as outlined in several the replies).

    However, given what you have said about your GP I think that the best and quickest way forward is to join the Pernicious Anaemia Society and ask Martyn to intercede on your behalf. I say this not to drum up 'business' for the PAS but rather because you have many neurological symptoms, have been untreateated for the B12 deficency cause by PA since 2012, and are therefore at risk of developing potentially irreversible neurological damage.

    I would urge you to make all attempts to get your B12 injections started again, with some urgency.

    I really wish you the very best of luck with this and am sincerely hoping that treatment can be recommenced as quickly as possible.

    Oh...and...while I'm here...going to post some links to information about PA, B12 deficency, and the guidelines for treatment etc., so that you can peruse at your leisure (you may have been given some of these already...sorry, haven't got time to sift through them right now 😉):

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

    stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

    👍

  • Foggyme brilliant information and advice....such lovely people on here.

  • Thanks Marymary7. I think we all speak with one voice for Grannyweatherwax...and yes, lots of very lovely folk here...some time ago, they did this for me too 😄

  • OH, I just read something on the subacute thingy, the wikipedia link ( wikiwand.com/en/Subacute_co... )

    "Administration of nitrous oxide anesthesia can precipitate subacute combined degeneration in people with subclinical vitamin B12 deficiency, while chronic nitrous oxide exposure can cause it even in persons with normal B12 levels."

    I have had numerous 1 hour+ sessions of Nitrous Oxide whilst having EVERY appointment at the hospital dentist! (I was with the hospital partly as a very nervous patient, and partly because my dental health was so bad)

    They saw me for years before my teeth finally gave up and crumbled so much that I had them all removed! My teeth were in such bad shape from chronic acid reflux resting in my mouth whilst lying flat for years (before I had the B12 injections removed I could lie flat in a bed) that all the enamel was eroded and my teeth were more chalky than the cliffs of Dover. Anyway, lots of nitrous oxide was consumed by me (finally having the teeth removed it was 4 sessions of 1-2 hours of the gas whilst they removed all of my teeth)

  • Grannyweatherwax , my heart goes out to you.

    All of what you describe sounds exactly like deterioration due to neglectful health treatment for a diagnosed lifelong condition. If you had a diagnosis of Pernicious Anaemia, then you have it still.

    As Polaris said, it is not just your GP who is at fault here- although he is to blame originally- as any other consultant you have seen since could have reinstated the B12 injections immediately.

    I also agree with Foggyme about changing your GP surgery - with your mobility problems and this GP's far-reaching influence this may not be possible - since his ignorance (or worse, cost-cutting tactics) are damaging you. There CAN'T be any GPs that are worse than this one, surely?

    Wishing you the very best and hope you can get help ASAP. So angry for you.

  • If only I were in the US and could sue them for malpractice heh *smiles wistfully*

    Thank you for your kind words though.

    The issue I have is if I need a call out I have to be within their "call out" zone and the ONLY doctors surgeries THAT I KNOW OF in this area are covered by the same two doctors who run my surgery, so wherever I go, even if I am seen by another doctor - the head of the surgeries will be the same doctors who seem very budget orientated. When tests come back and the doctors decide whether or not to act on the advice, it is one of the two head doctors that decide on the course of action. So regardless of the awesome doc that they employ that is TRYING to help me, his bosses pull the purse strings ever tighter.

    I have frequent and recurring severe UTI's with my catheter set up and ALWAYS have blood in my urine samples, but very rarely do I get antibiotics or any thoughts of a solution. (I keep my catheter hygiene pristine because I know how serious an infection that tracks back to the kidney can be - knowing my luck .... hehe) My urology consultant has moved back to Egypt and no-one has taken my case file on in his place.

  • Hi,

    I feel angry on your behalf and like the others wish you all the best with getting the treatment you need.

  • Simon (my Fiance) went to the chemist to collect my normal repeat medication that he had ordered and there were 3 boxes of 5mg Folic Acid tablets (3 month dose) to collect (they had been literally just processed as Simon went in (lucky!)) anyway, I cannot phone my doctors until after 1400 for results, so I cannot confirm what results must have come back to them.

    I will however phone after 1400 and find out what my B12 level and folate level was, and if they seem helpful, I will ask what my level was in the prior tests. I will also ask them if the doc suggested anything else. I will also ask if Pernicious Anaemia is on record as one of my conditions, I have nooo idea what to do if it's been removed at any point, would I have to go back and see the specialist that diagnosed me back in 2005? Or would they simply do the test that I had back in 2005 again? I don't know. :/

  • OK, here goes.

    First the most important bit I feel. When I asked the receptionist whether pernicious anaemia was a condition recorded on my records, she told me that it was added in 2005 and changed to "Pernicious Anaemia Significant" in bold text in 2008. She said it also pops up on the system when ANY doctor goes into the section requesting a prescription, so there is NO excuse, they could not possibly miss the fact that I have Pernicious Anaemia.

    Blood test results:

    B12 "Normal" 214

    Serum Folate 2.3

    FBC - "Normal"

    Eosinophil 0.6 (0.0-0.4)

    JUST TO CONFIRM (SORRY FOR CAPS) The doctor's surgery have just gotten back to me, my injections were removed in 2008! NOT 2012 like I originally thought!

  • Hi Grannyweatherwax,

    I'm glad that your PA diagnosis is on your records but still think it might be worth getting copies of your records especially if making a complaint about treatment is a possibility at some point in future.

    Sometimes things get lost or go missing from records..........................

    Access to records

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

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

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

    B12 "Normal" 214

    Serum Folate 2.3

    Your B12 levels might be normal range (not very high) but you are symptomatic plus you have a confirmed diagnosis of PA.

    Even without a PA diagnosis, flowchart below suggests B12 treatment should be given to patients symptomatic for B12 deficiency.

    stichtingb12tekort.nl/weten...

    "there were 3 boxes of 5mg Folic Acid tablets (3 month dose) "

    I have read that it is very important to make sure any co-existing B12 deficiency is treated if folate treatment is started as taking folate can mask the effects of B12 deficiency on red blood cells and neurological problems may occur.

    patient.info/doctor/folate-...

    See Management section in above link for more info.

    FBC - "Normal"

    The FBC is a set of about 15 tests. See link below.

    labtestsonline.org.uk/under...

    I'd suggest you get copies of the FBC results for all 15 tests, should all be on one sheet, so probably cost 50p - £1 approx

    I always get copies of all my blood results. I learnt to do this after being told everything was "normal" and then finding abnormal and borderline results on the copies.

    Eosinophil 0.6 (0.0-0.4)

    What does GP think has caused eosinophil levels to be raised?

    PAS

    Please think about contacting PAS.

    I, and I'm sure other members of this forum are very concerned about you.

    PAS tel no 01656 769 717 answerphone so messages can be left.

    MPs

    Your MP might be a source of support.

    parliament.uk/mps-lords-and...

    They should be able to arrange a home visit for someone with mobility problems.

    I hope your GP understands what "Pernicious" means.........

  • I haven't seen the GP yet, my blood test was done yesterday, returned today. (not bad methinks!)

    I have "unknown" allergies and am on cetirizine all year round and have been for years. So I am assuming it is down to that? (I'm either allergic to dust, cat or dog dander or perhaps even life? :-D )

    I rang PAS and left a message at about 1430 - so I'm hoping to hear back either tomorrow or whenever they're next in the office. :-)

    We are looking into getting my full medical history, at least since 2005 when I was diagnosed with Pernicious Anaemia. (I have a big file, at Stafford hospital each folder is 4-5 inches thick before they start a new one, and I was on folder numbered 4 last time I saw them)

  • sorry to disturb you all again, but.. say they actually DO agree to getting me back on injections... would they teach Simon how to do it do you think?

    I have had to postpone/cancel so many health appointments due to not being able to bear Simon getting me dressed, never mind leaving the house, which really is a massive struggle.. If they want me to have them every other day for a while, it will make me poorly just getting dressed and getting into the doctor surgery, I would never manage it every other day. I'm not lazy, the pain and struggle it takes to get out of my house

    (long story short, we don't have a ramp, they claim that they cannot fit one either - due to layout of the house and height of steps and the length of ramp required to be safe, plus the back door (our main entrance) is on the side of the house, so the fence is right opposite, they said I could not get the turning circle with the wheelchair) so I lean precariously on elbow crutches whilst Simon lifts my legs up and over the threshold then down onto the half step, (that's how unresponsive and weak they are) then down again onto the ground, I have to carefully hobble forward a few steps, (dragging both feet) then Simon places the wheelchair behind me. It's the ONLY way we can get me out of the house, THEN there's the struggle to get in and out of the car - it's just too much to do on a weekly basis never mind every other day...

    So yeah, would they get Simon to do them for me? I wouldn't be able to do it myself due to coordination and muscle weakness (I probably couldn't even stab the skin!)

  • Hi,

    Some surgeries are willing to teach people to self inject or a family member to do it for them. You could always point out the cost savings to them eg they will be saving on cost of nurse's or GPs time to administer injection.

    If you are unable to get to appts then can a district nurse come out to you? They are sometimes known as community nurses. Search for "Community Nursing Name of your area/county". If you are refused a district nurse visit then this may be a matter that MP could help with.

    May also be worth looking up your local CCG.

    nhs.uk/servicedirectories/p...

  • I am under community nursing (district nurses) for my catheter issues and pressure sores, so I am sure they'll add the injections to their list :D hehe

  • I hope you hear back from PAS soon.

    "say they actually DO agree to getting me back on injections..."

    In my opinion there's no way they should refuse as you have a confirmed diagnosis of PA.

    I think you need to get hold of proof that in UK, a diagnosis of PA means injections for life.

    Can you get hold of

    1) A copy of BNF (British National Formulary). Info on treatment for PA is in Chapter 9 Section 1.2

    BNF can be ordered from good bookshop, a popular internet retailer, local library might have a copy

    2) If you're now a member of PAS, you could print out the PAS leaflet "Treatment is for life"

    pernicious-anaemia-society....

    3) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" ....think this mentions PA treatment is for life.

    Another link about nitrous oxide

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

    "He said it was all ME/CFS and he didn't believe in ME/CFS, it's not a neuro condition it's all in the head."

    Actually, the World Health Organisation classifies ME/CFS as a neuro condition so stick that under their noses. Link below about WHO classification of ME/CFS.

    meassociation.org.uk/2013/0...

    There are so many of us on here who get written off and labelled with ME/CFs, depression, psychosomatic symptoms...happened to me too.

    B12 deficiency can be misdiagnosed as ME/CFS.

    b12deficiency.info/misdiagn...

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

    We're here to offer support if you need it.

    Hope you'll be able to update us on any news.

  • ....and I remember thinking a year or so ago that a precious diagnosis of Pernicious Anaemia would be the answer to my problems !

    Grannyweatherwax , I admire your spirit. Please keep in touch and let us know what happens next.

    It is appalling that so many people are having to research and amass evidence for their effective/ correct/ legal treatment, while symptoms continue to get worse.

    Symptoms that anyone with eyes in their head.......

    Anyway, hope you get help very soon x

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