B12 Deficiency getting worse with supplementation?

I have been supplementing with Jarrows B12 sublingual for over 16months now. In addition I use a good quality Vitamin B complex with folate. I decided on this route because I had many of the features and signs of B12 Deficiency as described on Dr Chaudry's website. After 6 weeks of taking B12 at 1000mcg i felt much better and recovered -my signs and symptoms gradually disappeared. I thought fantastic all is sorted and carried on the treatment.

About 5 months ago I started to feel unwell again my symptoms started to reappear so increased my B12 to 5000mcg and again recovered well after a few weeks and now have felt feel great for the last 3 months. My worry is that I may have a deteriorating condition hidden underneath the supplementation that I am not aware of. I know I should have gone to the doc and got the tests first before supplementing but i have been ill for over 10years battling with CFS/ME, then Hypothyroidism, severe vits D deficiency so I could not face another battle round with the NHS, whilst deteriorating further.

I know now that in order to get tested I would have to stop my vitamin B regime for at least 6 weeks. I just don't want to go downhill. which of course I will! Symptoms that I had before treatment was poor balance, fatigue, weakness in legs and tremor, blurred vision, poor memory, acid reflux, confusion and very ridged nails. All this went when I put the B12 regime of treatment in addition to my NHS prescribed thyroid treatment.

Would the B12 Active blood test be skewed by my current vit B regime I had wondered whether to get this done if I decline again......or is the only way is to stop supplementation and wait the 6 weeks out -I daren't think abot how poorly I will get as |I feel not so good when I miss a daily dose of B12...

I'd be grateful for any comments or suggestions.....Thanks

32 Replies

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  • oh and I forgot to say that all my friendsand family have commented o nteh difference in me, I lost my moon face shape ( which is a consequence of hypothyroidism despite good thyroid treatment) and everyone noticed how my leg and body tremor had gone -how well I look so it is not just me being hopeful!!!.

  • don't bother with the active b12 test, it will be 'wasted' because of your supplementation.

    I have officially diagnosed Pernicious Anaemia with positive intrinsic factor antibody and years of neurological symptoms on my medical record and I STILL HAVE TO SELF MEDICATE as the NHS is keeping me under-treated with 3 monthly jabs. I inject daily with methylcobalamin and only this way I can keep on top of my symptoms.

    You are right: either stop your supplements for a bare minimum of 6 weeks, I'd say even 8 to be honest or just self medicate....

    it's that sad the situation I know :(

  • OMG that's terrible nobodysdriving. You are diagnosed with PA and your GP don't prescribe you enough B12? What an injustice that is. But you are not alone and if you complain, it's like they'll put a black mark on your medical record and they will make up or even change medical data so that you won't receive a proper treatment. :( NHS will be privatised and only rich who can afford an expensive health insurance e.g. Obamacare style will receive adequate treatments.

  • Thanks nobodysdriving. When I was reading about it all before I decided to self medicated that was the impression I got -and that I would have to battle hard with the NHS -just couldn't face another battle. I don't think I am a serious case BUT there is no doubt that I do have a problem with getting B12 into my system. -a mjust worried it will carry on getting worse. I guess I will just carry on until sublingual no longer works for me I may have to review what I do next. Shame am not in Dr Chaudy's catchment!!!!

    And just to underline it -a friend of mine range me up today to say that she has now discovered that her B12 level in 2009 was 179......and they left her with the GP saying well you were only just under the bottom of the range!! Now the GP has had the good grace to repeat the test -my friend couldn't tell me which ones. Her ferritin and folate is on the floor and she is very anemic -that she did tell me. Apparently the hospital that she was in in 2009 suspected PA but still the GP did nothing.... and am still coaching her to get proper copies of her test results -she daren't ask. Am working on her!

    So my little old case won't touch the sides am sure!

  • I think it's brilliant that you have made yourself so much better and that you are attempting to 'educate' your friend :) keep up the good work, it's only by being empowered and taking charge of our health that we will get better :)

  • Hi Waveylines

    You are correct to state that you should have had tests prior to taking on your own version of a B12 program. You are also correct in your thinking that what you are taking may upset any new test results. However, I feel you should call Guys / St Thomas's hospital and speak to Densie O'blien on 0207 188 7188. I have left Denise a message this morning and she will come back to me. I have outlined your problems and she will therefore be aware of your difficulties, if you wish to call her. I feel that it may be possible for the labs to take your self medication into account, but I still feel you may be better off to have a period devoid of inputs. Dr. Dominic Harrington may be able to provide you with advice and Dominic a lovely chap with a great deal of knowledge on this subject. You also state that you have been diagnosed with certain medical conditions, many of which may also be caused by a Vit B12 deficiency, the world of B12 is sadly a place of a great deal of misdiagnosis, so I would strongly suggest that you begin working with people who specialize in that field.

    Hope you continue to improve and find the answers you are looking for.

    Best wishes B12 Turbo

  • Thanks Turbo,

    I have indeed had a response to the email I sent to Denise -she got someone to have a nosey at it -and as I thought they think I will have to stop the b12 for 8 weeks and then get tested. In fact they were advising caution over the Metyhyl for of b12 in particular and understandably advised strongly against self medication...... They are of course right but you know whilst i am feeling well on what i am doing and don't have symptoms am not sure I will rock the boat by stopping -maybe that's what I will do if I really have to and get symptoms.

    And thanks hamster -increasing again is always a possibility if I really need to. Am so sorry to hear they still don't give you optimal treatment even after your diagnosis -shame on them!!!

    A big big thanks to you all for all the feedback you have given. It has really helped me, Onwards and upwards :) :)

  • Hi Waveylines

    I have just had a reply from Denise at Guys hospital as I pressed the button to submit my reply to you, she is now up to speed on your problem and will be happy to talk to you, should you wish to ring her. Good luck B12 Turbo.

  • Oh that is wonderful -what is her tel number?

  • whoops just seen your other message B12Turbo and have rang her -am going to email her and she will get someone to look at it. Thank you very much :)

  • This really is tricky, because as nobodysdriving says getting an NHS diagnosis does not mean you then get the correct treatment. Many of us fight the good fight and then still end up lumped on inadequate 3 monthly injections. Self treating is usually where we all end up.

    You say you feel good at the moment on the 5000mcg sublinguals. Are there some symptoms still lingering that you are concerned about?

  • Hi hamster,

    Yes am good on 5000 at the moment but my worry is that I will have to increase it again and if so should I be concerned by that?....and I am also worried if my supplementation with B12 could be masking any underlying cause that I should get investigated -or is investigation in the NHS so bad that it wouldn't get done in any case.....am not worried about ticking boxes and i am keen to avoid any neurological damage that could occur if I leave my self to the NHS process...which sounds really arduous and long winded and then unsatisfactory. However I don't want to be a fool and avoid testing if it would provide useful information and a better prescription to address the problem -if it won't I will carry on self prescribing as I'd rather not get embroiled in another battle and argument with GPs/Doc in the NHS -Life's too short!!

  • Well there's nothing to stop you taking several 5000mcg sublinguals a day if you needed it, there is no known toxicity and no upper limit set for B12.

    In terms of testing, I feel it would be a waste of money unless you were off the sublinguals for a really good stretch of time, say 4 months or so. A test that you could get without stopping them is anti-parietal cells. And I think you need to be off B12 for only 2 weeks for anti-intrinsic factor.

    NHS testing is hit and miss, some doctors are so bad that they will only run an FBC, and then only test serum B12 if there is macrocytosis. And then of course when serum B12 is tested it's slavishly adhered to even though it's a rubbish test. Even when you do come back with a low B12, many doctors don't bother to do any further testing to establish why. Then when you get a few injections and blood levels go back to "normal" they tell you you're cured and cease treating you altogether (this happened to me first time around).

    So my only good answer for you is to perhaps try and get the antibody tests done, use the sublinguals as long as they are relieving ALL of your symptoms, and if they don't then switch to injections yourself.

    New NICE guidelines are due to come out very soon, the PAS have been asked to comment on them as we speak, so I'm just hoping and praying that there's some changes in there that will help us all.

    H x

  • I agree Hampster, this really is a tricky problem, I think we have both said in the past, that in the end, NO ONE seems to know exactly what any individuals B12 needs are and that everyone is different. However, I still feel that as hospitals everywhere apply a policy of testing first and treating later, in the view of knowledge gained from test results, then that is still the best way, imperfect as it sometimes proves to be, in the hands of those who still sadly seem to dismiss B12 as Gobbledy Gook, or simply a way of people making money !! In the end many are indeed sadly forced into self medication and listening to their own bodies as a guide line. Let us all hope that one day the NHS might just wake up.

  • Totally agree, I wish people were offered the full array of tests BEFORE they started supplementing. That's why I'm so uncomfortable with the seemingly default advice of "go and get some sublinguals" found on some other forums. It's dangerous advice if you haven't already exhausted all possible avenues of getting a proper diagnosis.

  • Get tested for the intrinsic factor this will indicate if you are able to absorb B 12 via your gut. If not you will need B12 injections. Hope this helps!

  • Thanks Rosiered -will do -will that test be influenced by my supplementation of B12?

  • The test has nothing to do with your level of B12. It simply indicates whether you can absorb B12 orally through your digestive system or if not, that you will need injections. I have a bi monthly injection and have also discovered patches of B12 to use as supplements on those days I still feel tired and breathless. I also take, with my doctor's agreement, a one a day folic acid pill.

  • thanks Rosiered -I will get the test done. If my GP won't is there an company like Blue Horizon that does it privately?

  • If you have all of that you obviously have Auto Immune issues ,on going slowly destroying glands . I had that with

    " Human Insulin " , after 20yrs trouble free Diabetes forced to change to it , was ill straight away ,but despite protesting for 7yrs , resulting in 33yrs of serious ill health ,the autoimmune slowly destroyed 5 glands .

    With Auto Immune the B12 recepters will have been taken out , you will need inections to survive , but also the fatigue will probably mean Levothyroxine is no longer converting to active thyroid , that will mean getting Natural active Porcine thyroid and all the bothers with the RCP et all .

    Do you get an ulcerated mouth and tongue ,my Dentist got me a referral to Maxllio Facial and a PA diagnosis , by passing the GP .

  • yes am sure i have autoimmune issues.

    I have extensive Vitiligo ( which destroys the pigment in your skin) -consequently need daily vit D3, then i was formerly diagnosed with hypothyroidism (but according to the test no irregularity with the autoimmune blood test signifers just too much TSH and not enough T4) which I take a natural desiccated thyroid med called Erfa.

    I support my Adrenals by using CT3M -because the natural rhythm of the body in a normal functioning thyroid gland would be to release thyroid hormones in the early hours to support your adrenals which do lot of work in the early hours..this method mimics this natural rhythm (by taking some of my Erfa in the early hours) and for me works really well and as a consequence i do not need to take any additional adrenal meds. The b12 issue has only surfaced in the last 18months.

    I am also prone to disc prolapses in my back and neck which i had put down to years of not being treated for my lack of vit D...but could there be an autoimmune reason behind it?

    i am beginning to wonder if I should be asking for further investigations but really don't know who, what or where or if it is really worth doing!!!

  • Untreated B12 deficiency can lead to sub acute combined degeneration of the spinal cord (SACD) so if you have ongoing back issues it might well be worth asking for a Neuro referral. They need to know what they're looking for though, not all of them are clued up about B12.

    Here is an easy read article about SACD, there are lots more on the PAS forum:

    neurology.about.com/od/Auto...

    Vitiligo is associated with PA. I would definitely pursue those antibody tests.

    H x

  • Thankyou hampster -that is really helpful -will the antibody tests be influenced by B12 supplementation?

    My back/neck problems are three prolapse discs -so have been told and the principle symptom is a burning sensation in my back which sometime radiates down into my buttocks -currently mid back- current burning sensation has been going on since last mid December. Saw GP -unconcerned signed me off for a week from work for 'back pain' -went back to work and had to stop after three days because of the horrendous burning and back in spasm -now back again after 7 days and boss has agreed a phased return -but back is not good even after one day at work -off today as part of the plan. Seeing McTimmoney Chiropractor and she said my back was horrendously out on my first visit -three visits on and am not sure if it is really helping....

  • Have a read through this topic:

    pernicious-anaemia-society....

    It might well be worth asking for a neuro referral, back pain is really not something that a GP is qualified to pass judgement on IMHO. And I know from my own experience that I've spent probably thousands of pounds over the years on physio's and osteo's to fix my neck pain and numb hand (which I thought was caused by whiplash), when all I needed was B12.

    Yes you can have the parietal cell antibody test anytime, but the intrinsic factor antibody test has to ideally be without B12 for 2 weeks or it can be false positive, read question 3 here:

    education.questdiagnostics....

  • Hi Waveylines

    I get the feeling that you are worried about asking your GP for tests, if your B12 was low as one would imagine from your statements, then your GP should be only too happy to test your Serum B12 level, if not, then see another doctor and take a full account of your symptoms with you. Had tests proved (prior to your self medication) you had a B12 deficiency, then your GP should automatically call for Intrinsic Factor tests and if they are NEG then he should test for Parietal Cell Antibodies and if those are NEG, then you should be considered for HoloTC and perhaps MMA and Homocystene level checks. Please don't worry about your GP, if he refuses to comply, then ask to be referred to a Haemotology Consultant at your local hospital, they are normally more up to speed with B12 and will probably, (as in my own case), refer you to Guys in London for the tests, which you can pay for privately if you so wish. I feel you really should explore where you are at the moment as a matter of urgency, Neurological Damage can often be irreversible if left too long without treatment. Please try hard to make sure that does not happen to you, hopefully the programs you are and have been running, will have given you some degree of protection from that type of outcome, but regular testing is important, simply in order to ascertain how your treatment is progressing.

    Hope you find a good medical response from your GP, but if not please don't give up.

    Best wishes B12 Turbo

  • Hi Turbo no am not worried about asking for tests -just making sure I present to the GP with the right information/requests -in my experience I have to know my stuff as often the GP doesn't -no disrespect meant. My GP did test my B12 but I had already been on a b12 supplementation for 2 months which I told him about so of course it skewed the results -showing me at the top of the range. He believed therefore there was no b12 deficiency

    Thanks -am in touch with Denise now in London and I amy just get the tests done privately and then show my doc. mainly for the reason you have just said -i don't want to hang around too long.

    many many thanks

  • Hi Hampster

    I have recently arrived at a new place in the B12 story and wonder if you or any other sufferer has met such a problem.

    Following initial tests 2 years ago, (Serum 131 Range 150 to 1000). I had I.F. and PCA tests which came back NEG. My GP was confused by this and asked what I wanted to do. I stated I would conduct further research and as I generally have an intolerance to almost every drug known to man, I decided that I would begin with Cyanocobalamin tablets at 50 mcgs x 3 times per day. Further tests after 2 months showed little or no gain in the Serum level. However, further work highlighted that B2 was needed to activate B6 and B6 was required for the absorption of B12. I added a tablet by Activis containing B1 - B2 - B3 and B6. Bingo in 6 weeks my Serum level went from 131 to 498 and my GP commented "That's Bloody Amazing" and agreed to provide me with a script for the licensed B12 tablet I had been using, but not the Activis tablet.

    Well all went ok for over 12 months. However, not all my neuro symptoms seemed to be receding and further research highlighted that Methylcobalamin was far better than the Cyanocobalamin at addressing these problems and in particular, it had the ability to repair the Myelin coating on nerves. As my Facial Migraine stems from the 5th Cranial Nerve, the Trigeminal Nerve and I also appear to have problems with the 8th Cranial Nerve, (Balance and Hearing), I began using 1000mcg Methyl.Patches made in the USA which also contained 400mcgs of Folic Acid and again added the Activis tablet for the other B's I felt may be required as before. Well the first 4 weeks went very well and I felt like I had a new body, even my migraines were better. I had chosen the patch route, because I felt that I could remove the patch at any point in the 24 hours it has to remain on and thereby adjust the dosage.if necessary. However If I had gone the injection route, then once the B12 was in, then there would be no getting it back out.

    On the 3 day of the 5th week I began having all sorts of what I feel were probably Referred Pains, from Sciatic back and leg pain, to G.I. problems, shooting pains all over etc. etc. By the 5th day, these were clearing up and by the end of the week had gone completely. I left things for a further couple of days and the applied the 6th patch. On day 3 again the pains were back, but this time they were more intense and have taken 3 weeks to subside completely, but now I'm back to feeling great again. I feel that perhaps these symptoms could possibly be considered to an overdose problem !! BUT! B12 is a water soluble vitamin and therefore one should not be able to overdose. Better brains than my own, have suggested what they refer to as a B12 overload and again this is I suppose much the same thing. One therefore wonders, is it also possible, that a small number of people who receive injections and feel poorly for a few days after, also have a similar problem. Could this be considered in the light of a large dose is injected straight into the blood stream and these people, perhaps like myself, have a reduced ability to deal with such a rapid rate of input via a less effective Toxicity Reduction system within their bodies make up, thereby causing triggers within the patients central nervous system ????

    I now intend to go back to my G.P. and run a full range of bloods, everything I can think of and then some. I hope that by cross referencing the other blood level readings from the Cyanocobalamin program, I might find some form of enlightenment. However!! Hampster my friend, do you yourself have any ideas that might fit and provide an answer to my problem. At least by running a complete set of bloods including HoloTC, MMA and Homocystene, something should show up, but I really would value any input from you as always.

    Hope you are managing to keep well, whilst walking a path through this mine field.

    Best wishes. Brian

  • Hi Turbo

    After reading your post, it got me thinking.

    Several weeks ago you kindly got in touch with Dr. Dominic for me regarding my active B12 test,

    I was asking how long I should be off the supplements before I had the test.

    I had been off the supplements for 8 weeks before the test but it came back at 107

    (top of range 108)

    I was very puzzled by this as in April last year my serum B12 was 377. I am hypothyroid and take levothyroxine so started supplement with sublingual B12 2400ug daily.

    In October last year I began to get a numb feeling in my right cheek, nose and mouth and this scared me as I thought I was having a stroke. My G.P. sent me to the TIA clinic and they did a CT scan and thankfully it was all clear.

    My daughter then read on the internet that too much B12 can cause facial numbness so I did a private test at Myrios for B12 and Folate and both came back above range (I had not supplemented with folate only B12) and they advise, if I was supplementing to cut back. This is when I decided to stop the supplement and get the active test done which as I said was 8 weeks later.

    The facial numbness did subside after a few days, but a few weeks later returned but not as severe and lasted about a day then went. I have since been getting it once or twice a week, and since stopping the supplement have had more fatigue, felt more anxious and had episodes of tingling.

    So my concern is, could the supplement when over range cause a toxic effect as you describe, but now I am not using the supplement could the symptoms have crept back in.

    Yet another mystery is how my active B12 was top of range even after 8 weeks of stopping the supplement.

    Sorry for long winded post but thought it might be of some interest to you.

    Best wishes browny

    .

  • Hi Browny

    Yes I do remember contacting Dominic for you and hope he and his lab technicians were of help to you. Your comments do indeed interest me, however, I don't know if the effects are due to any kind of toxicity, it is of course an interesting possibility, but then all the learned guy's in this field, tell us that B12 is not toxic. You do not say what you were supplementing with ie. Cyan - Methyl etc. However, as a very wise man often wrote and this may well apply " True Knowledge, stem from accepting the fact that we KNOW nothing".. In other words, facts are only factual until someone disproves them. Like nothing being faster than the speed of light..

    The point I made regarding the way and speed at which the body uses and thus depletes its supply of stored B12 is most probably different in everyone of us. Hence the liver may store B12 and only use it as each body requires it, so may be it is not possible to have one size fits all ratio and thus a universal time span off medication prior to any tests being carried out. Therefore, perhaps only a general guidance can be obtained. I would state that I personally feel that it is most likely that the old symptoms will creep back in, as the body stores are depleted. Let's face it, the body is returning to a state, which is at the very least, similar to that which existed prior to medication being taken. However, perhaps one should also consider just how complicated the bodies chemistry is and during this period of depletion, do the bodily systems get out of sync, thereby creating strange effects throughout the whole body ????

    Regarding your being still top of the range 8 weeks after stopping, do you know just how high your reading could have been 8 weeks earlier?

    Sadly for every answer in the B12 world there are still a 1000 questions devoid of a provable theory.

    Hope things soon get back to normal for you.

    Best wishes B12 Trurbo.

  • Hi

    Many thanks for your reply,

    The sublingual was methyl,

    When I did the B12 (serum) test 8 weeks previous to the Active test the result was,

    904 pmol/L range 141 - 48 so well over range, but how that compares to the Active level 8 weeks later I do not know.

    Best Wishes browny

  • Hi everyone -i have really appreciated all the advice and support . you have all been fantastic :) Thank you.

    I have been researching a bit more and i have another question.....so sorry!

    I have had abnormal liver results now for a number of years (I know I sound a proper old croc). On the PA Site/forum they talk about liver abnormalities being a feature of PA. I did not know this.... My Liver enzymes are all a bit raised: AST,ALT,GGT & Alkaline Phosphatase ( which are the highest). I had a liver scan about a year ago too and it showed slightly fatty liver -I do struggle with my weight ( ever since being hypothyroid) -so currently 2 stone overweight. I thought that was the reason for the raised liver enzymes- certainly what my GP told me.....

    The more I look at this the more I feel I do need to see a specialist. Anyone know a good one?

  • Are women being unfairly treated here ? I would like to know what percentage of women to men are left undiagnosed and treated . This nasty child abusing government is claiming that dementia kills women more than breast cancer . As far as I am aware , dementia does not actually kill but undiagnosed and treated pernicious anaemia and B12 deficiency does . They are even bribing doctors to diagnose dementia by giving them £69 per victim . One of the most disturbing things is that if left untreated in children , not only will it give them learning difficulties , expose them to the risk of cancer and dementia in later life but it can make them display innappropriate sexual conduct behavior causing them to engage in sexual relationships with adults way beyond their years . I have spoken to members of the public who go to pubs and night clubs . They have all noticed the alarming number of 13 and 14 year olds , covered in make up and wearing hardly any clothes who hang around with adults three times their age . A "judge" recently in a trial came to the conclusion , in her ill informed wisdom ,that it was the pupil who was grooming an adult teacher three times her age and how he was the "vulnerable" one . A mother , in a recent news item reportedly killed her twin babies who had spinal atrophy .Spinal atrophy is a symptom of severe B12 deficiency and can be treatable with injected methylcobalamin . She , as have many parents of victims ,was being bullied by social service employees who have been employed by health authorities to get rid of the problem . They hounded her ruthlessly . Many have committed suicide , some in very questionable circumstances . One mother reportedly jumped off a bridge with her disabled child . Another mother alledgedly set herself and her disabled daughter on fire inside their car . Strange way to commit suicide especially with a disabled child don`t you think ? Tens of thousands of children , with obvious symptoms of pernicious anaemia have been snatched away from loving parents and taken miles away from home where the parents cannot see what is happening to their children . David Cameron and Nick Clegg came on TV a few months ago and said " we have a problem with paedophiles " . That`s an understatement . After complaining to Alder Hey Childrens Hospital about the appauling care my daughter suffered in their house of horrors which bore more resemblance to Mengele care than a childrens hospital we have been set upon by such social workers . They have tried to harrass and bully us into suicide . When they come so do old men . One came outside my daughters bedroom window with a clip board . On another occasion whilst talking to them in a park by a bench , an old man with a zoom lens camera came and stood feet away and blatantly pointed it at us . I asked the social workers Jenni Simpson and Angela Craven from Wavertree Customer Focus Centre who the old man was . Jenni Simpson said supercilliously , " you don`t think you are being followed do you ?" . I said "never mind being followed , who is he ?" . They both looked at the floor . I asked Angela Craven on the phone why she was grooming my child . She told me evryone is just trying to earn a living . I took the grooming presents back to their office which they had brought my child for Christmas . My child did not want them anyway because she did not like the social workers and does not trust them . They had given her nail polish and lipstick which she does not wear . They make comments to her about how "womany " she looks . ( she is 14 with a learning difficulty and is not well in the least) . They say she is sixteen when they talk to her , they swear and tell us not to talk about B12 . Since complaining to the hospital , men seem to come up behind her in supermarkets and squeeze past touching her around the waist . I hear her say " get off me " and when I turn around , a man will be going around the corner at the end of the isle . This did not happen before we complained . My child was seen at this hospital over a 14 year period and saw at least 30 different Gp`s , Paediatric Consultants and Surgeons . All they seem to be now trying to say is that she has a mild iron deficiency even though they have diagnosed every symptom of pernicious anaemia from birth including : Low birth weight ( she was a pre term) , failure to thrive , cognitive impairment , delayed development , pneumonia , pineal cyst , head circumference on a lower centile than height and weight , innability to hop , substantial wobbling , starring into space whilst being unresponsive to her name , myopathy , hypotonia , lethargy and tiredness , interrupted sleep pattern , vision and hearing difficulties ,iron deficiency and then anaemia , proximal more than distal muscle weakness ,swollen fibers on a muscle biopsy in 2011( which the clinic note says could `possibly` be an artifact . The hospital then cancelled all her appointments for the year ) . The clinical director Dr Sian Snelling who my child had been sent to at 18 months by the GP practice nurse with concerns about lateness in walking and a head circumference on a lower centile than height and weight and then six months later with large stools and substantial nasal congestion , denied she had met us before evn though there are two clinic letters . She denied the anaemia which was diagnosed a month before by a specialist registrar and denied the proximal more than distal muscle weakness diagnosed by a senior neurosurgeon and a senior neuro phisio and measured at 3 + - 4 + . She then retired after effecting out comes of all future appointments and took up her position on the child protection board . We have been bullied and traumatised by social workers ever since . An interim care order has been put in place which enables the same people who failed her at school and sent her round and round in circles being operated on needlessly . Some of the proceedures were so traumatic that she still talks about it now .The chief executive of Liverpool is Ged Fitzgerald who was also in charge during the Rotherham debacle , where interim care orders were placed on children using the sinister child protection court , who no doubt had been left with the symptoms of undiagnosed B12 deficiencies and pernicious anaemia . They were taken into care where they were ferried around in taxis , doused in petrol and raped over a 14 year period . I have been told that the Local Authority , under the same boss is planning on snatching my child at the end of the court proceedings this week and I am at a loss what to do . I am in shock . They have compiled a load of rubbish in documents about me and my child and I am not allowed to show anyone . The court is closed with no witnesses . What would you do ?

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