Could this be B12

I've been back and forward to the Gp for a good few years complaining of fatigue and brain fog. I occasionally got little electric tingles down my spine at night too. In June he diagnosed me with chronic fatigue syndrome after the most basic of tests. In July I started to get problems with sunlight and bright lights and a burning sensation on my right thigh. In August after going for a brisk walk I took to bed for nearly three weeks and each time I stood up my heart rate went from 50 to 120 and I had to lay down (a tilt table test said no pots).

I got counselling and they said I was trying too hard to find a reason for my symptoms and that I should ask my GP about antidepressants for anxiety and maybe try to accept my situation.

I have ringing in my ears and tingling feet, restless legs, pins and needles in my hands when I hold my phone. I ache all over. I lay in bed and forget where my arms are. My sleep quality is terrible and I wake far too early.

A brain MRI was 'normal'.

I visited the Gp to discuss anxiety and he just handed me a prescription for antidepressants (I'm not on them) I then asked him if I could have my most recent b12 results as i'd stuck my symptoms in a checker and that popped up.

His response saddened me. He simply said "no", take these (antidepressants) and come back in a month.

I was concerned so I paid for a private test and my results came back as low b12 153 pg/ml.

I returned to the Gp and asked him for their b12 results to be told they'd not tested them since 2012 (four years earlier) and they were 'normal'. I asked to see the results and it turned out they'd done two tests. One came back as 146 ng/l but repeated 4 days later and it came back as normal.

He did a test that day and it came back as 314 ng/l. They won't treat me at that level but no one can explain why I had really now serum b12 then 'normal' b12 (both times) four days later four years apart. (*updated after checking over my Ebay records and having a flash back I remember taking sublingual b12 after being recalled to the surgery by the receptionist in 2012 to get my b12 test repeated. I only recently threw the bottle away because they'd expired and there was only a week or so worth used.)

I also need to know why they'd ignore the low readings over the 'normal ones with so many symptoms that suggest b12. (*updated I guess I know now but wish someone had mentioned supplementing or told me how low they actually were and that a week of supplements is useless).

I've seen three different gp's all of whom just say I'm stressed (i agree I'm stressed now but I'm sure it's b12 related). One told me to eat more fruit and veg. The first congratulated me on the loss of 2 1/2 stone in ten weeks (I'm not trying).

My intrinsic factor and pa antibodies are ok.

My routine bloods are 'normal' ( at the top of normal) except mean cell haemoglobin which was above range.

I've been taking sublingual methylb12 2000ug and a multi vitamin plus d3 for a month now and do have more energy (still low but more). The neurological symptoms are still very present. Gp says not a chance of b12 trial and quoted a case where a GP was struck off for prescribing b12 for fatigue.

I had hpylori five years ago, treatment but no follow up so I've just done a private stool antigen test but it was negative.

I was negative for celiac antibodies too but I get bad guts and constipation when I eat wheat. I haven't been good with dairy for years and was vegetarian in my 20's (I'm 45) and am not a big meat eater now. Being dairy intolerant I dont eat fortified cereals.

I feel like I'm losing the plot. If I'd known in 2012 that I had a deficiency I would have added it to my diet before all this got worse.

I feel let down. Could this be b12?

Here are my bloods from back in 2012 and from 2016 (two in the space of a week but one low and one ok for b12).

drive.google.com/open?id=0B...

Last edited by

37 Replies

oldest β€’ newest
  • You have symptoms and should receive 1 jab of b12 every other day until YOU feel no improvement. Ask DR to check his BNF, my dr was amazed when she read it and gave me the jabs. I balance it with a good b vitamin. Good luck, persevere , our wellbeing is at stake. They aren't too switched on re vitamins. They don't like an enlightened patient, the sooner they realise that they are public servants the better we all shall be.

  • Thank you for the prompt reply. I pointed that out but he said I don't have anaemia so don't qualify. He said if I wanted to use oral b12 he would monitor me but couldn't treat me.

    I don't feel comfortable challenging them as I'm already getting cbt for anxiety. It feels like they attribute it all to anxiety. I'd bet my house on the anxiety being just another symptom. That came after the fatigue and other symptoms.

  • Your doctor would be treating you for the pins and needles, so he needn't worry about being struck off. Isnt it amazing that they will do an MRI at considable expence yet poo hoo B12. Have you seen another doctor? It would be easier if you write perhaps, face to face isn't easy for a non confrontational person. I'm sure the rules can be obtained online, include them with the letter, state in the letter that you intend to take legal action against him should you suffer any permanent dammage resulting from non treatment,, a letter must be included in your notes and keep a copy yourself. He seems to be worried about his own neck more than your good health so that would be food for thought for him. Be brave and you will win.

  • Hi Steap you wrote

    "My routine bloods are 'normal' ( at the top of normal) except mean cell haemoglobin which was above range".

    High MCH

    "The value of MCH would be considered as high if it is in excess of 34 picograms. Usually a high value of MCH indicates that you are suffering from macrocytic anemia. The cause of this blood disorder is a deficiency of a vitamin known by the name of Folic Acid or vitamin B12. This vitamin contains carbon in abundance and is required by the body in small amounts for performing important chemical processes and for the body to function at peak level. People suffering from macrocytic anemia cannot produce red blood cells in a sufficient quantity which means they have more hemoglobin content present in them than ordinary red blood cells".

    The above together with you neurological symptoms would suggest that you are Vitamin B12 Deficient and probably an absorption problem which may explain why the sublingual does not appear to be having much effect.

    False normal B12 results and the risk of neurological damage

    (U.K. N.E.Q.A.S Haematics.org.uk

    )

    β€œIn the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

    Well done for keeping off the antidepressants as they will only reduce your B12 levels further. I wish I'd known this sort of thing back in the 1960s before I got my P.A. diagnosis in 1972 when I was "put on" Valium, Librium and Tofranil.

    I hope you can persuade one or other of your doctors to at least give you a trial run of Vitamin B12 probaly also supplementing your Folate level as these two work together.

    I wish you well.

  • Thanks Clive. I wish I'd known all this a long time ago. I also wish I'd know about the importance of testing before supplementing or about storing blood.

    After the low private test results i had the Gp test done fully expecting it to come back low then went straight to the car are took my first methyl b12 spray.

    I didn't want to delay getting b12 a moment longer as it's also effecting my vision (light sensitivity not actual eyesight. I paid for a private eye test to ensure I was ok to drive).

    My heart situation (rapid rate upon standing) landed me in a&e in august and the cardiologist confirmed my rythm issue was physical not psychological thankfully although that's actually settled down now. I'm betting that too is nerve related.

    They are doing spine MRI to check for nerve compression next week and that may give me a little more ammo re the b12 treatment if it shows anything.

    FYI (after reading your other posts) my vitamin d was 49 but they said that was normal. I started taking d3 spray a month ago after reading up on that too.

  • Ps on the two recent tests the MCH was 33.5 & 32.8 so I guess that's ok going by your post (the lab said it's above range and highlighted it but the Gp said it's not)

  • It would be a good idea if all labs used the same ranges.

    For example my latest Vit D score was 74.9nmol/L range 80 -150 and my doctor put me on 800 units in perpetuity but I guess that is because earlier in the year I'd been deficient, had three months supplements and it had dropped again. At my age (75) I'm unable to absorb D from either diet or sunshine.

    Goodness knows what range was used for your score of 49.

    Ironically my MCH was marginally high (indicating a B12 deficiency) as I have injections of cyanocobalamin B12 1000mcg every 3 weeks as I've had P.A. for 45 years since the age of 30.

  • Hi Steap. Oh dear, this is dreadful. It certainly does sound like B12 deficiency and your B12 is very low. And based on what you say above, it's been low for years.

    Your GP is very wrong - he should treating you.

    MCH - if the lab says its above range and highlighted it as an issue - then it's an issue. The machines in labs are calbrated individually so the reference range can vary slightly accordingly (so Clivealive is right but with a % margin either way for different machines and labs). Sounds to me like you do have macrocytic anaemia - caused by B12 deficiency and / or folate deficiency.

    And you can test negative for Anti-IF antibodies and still have PA (the test only has a 50% accuracy rate for negative results).

    With the neurological symptoms you should be on intensive B12 therapy. The golden rule - always - is treat the symptoms.

    It's quite late now so I'm sorry but I'm out of time (or should I say brain).

    If I may, I'd like to come back again tomorrow so that I can offer some pointers on how to deal with your GP so that you can get the treatment that you should be having.

    It would help if you could post all your blood results here (together with the reference ranges) so that we can help with interpretation (things right at the top or bottom of reference ranges are not good enough for some people and I suspect that your GP is not paying attention to what your blood results are actually 'saying'). You have a right (by law) to have these results - usually the surgery receptionist will print them out for you. It will also be important to see what has been done - or more significantly, what has not been done (for instance folate and ferritin - but I'll say more about this tomorrow.

    Just have to say it....losing 2 1/2 stone in ten weeks is nothing to be congratulated on (as you well know) - and quoting a case where one GP was struck off for prescribing B12 for fatigue is both insulting and, in light of your neurological symptoms, potentially damaging to your long term health. The man is quite ridiculous.

    But sorry...must go. Will leave more tomorrow.

  • How do I post pics in a reply?

  • you can't post a picture in a reply.

    However, you can go back and edit your original post to include a picture- the down arrow next to 'follow post' button

  • drive.google.com/open?id=0B...

    These are scans of my results from 2012 & 2016 (private and GP)

    I only have the low one from 2012 they repeated the test four days later and said no further action. Back then I was just tired all the time.

  • You can't post pictures in a reply....just click to make a new post and at the bottom of that screen you'll see an insert image button.

    You'll just need to check that the results are clear to see in the image....sometimes they're so small that it's difficult to read.

    Or...you could type the results and reference ranges directly into a new post (or a reply)....

    Back tomorrow πŸ‘

  • drive.google.com/open?id=0B...

    These are my results

  • Did you by any chance get a look at my results? :-)

  • Hi Steap. I'm posting a response about blood results etc. as a new reply to this thread...or you'll be reading a long thin sausage.

  • How ridiculous to say you can't prescribe B12 for fatigue! My vet does it for elderly doddery dogs, even when their B12 tests normal - calls it a pick-me-up!

  • I wish they would strike off your GP for not giving you the B12 injections you obviously need right now.

    Start giving your GP a list of all your neurological symptoms and ask for it to be included in your file. If they need evidence, start a logbook and assess the severity of each symptom on a daily basis.

    If he agrees to injections, continue to monitor to reassure your GP that the treatment is working.

    Antidepressants can worsen symptoms. Check the paper included in all medications for all the side effects and complain about these symptoms occurring to your GP while stressing that your neurological symptoms are not improving.

    I got tinnitus from an antidepressant.

    Good luck.

    Have you looked at self injections?

  • I'd happily self inject if I could get the b12 ampules. I'm reading methyl is best for my situation but I've trawled the web looking for hydroxy or methyl b12 to no avail sadly.

    I've been wanting to take them since November when everything started to make sense.

    My clock is ticking nerve wise but aside from here no one is listening.

    In the meantime I'm hammering the methyl b12 spray and eating things like liver, mussels and cockles plus plenty of folate rich veg etc.

    I tried methylfolate but it seemed to ramp up my anxiety as did super strength (b-right) complex so I'm just using a regular strength multivitamin with all the b's and folate at no more than 200% rda.

  • I live in the USA and got my ampoules from Canada through the mail after I ordered over the Internet when I first started self injecting.

    People in the U.K. get theirs from Germany.

  • I'd happily go back to just being tired all the time as I was used to living like that and my family situation was ok. (This has placed a big strain on it especially having two little ones)

    I have a brilliant wife but it's clearly taking it out of her.

    I've only really been experiencing what I guess are the really noticeable/worrying neurological issues since July time and they get really bad after the first week in August.

    Can these symptoms be reversed on b12 sublingual spray with not being allowed the injections.

    I started the b12 spray the day of my last GP blood test on the 2nd of November 2016.

  • Hi Steap.

    Blood results.....(then other things)..

    You have a confirmed severe B12 deficiency in July 2012. This severe B12 deficiency is still present in October 2016 - 4 years later!!

    All results show that folate is far too low in the reference range.

    The medichecks blood results from Oct 2016 show below range red cell count - indicative of B12, folate, or possible B6 deficiency. Red cell count nudges slightly into bottom of the range in Nov 2016 (it's still too low) and read against previous results and current symptoms - still indicative of B12, folate and possible B6 deficiency.

    MCH at very top of reference range in oct 2016 and above range in Nov 2016 - indicative of B12 and folate deficiency.

    Haemocrit in Nov 2016 very low in reference range - possible insufficient supply of healthy red blood cells - possible anaemia

    Nov 2016 - Lymphocyte - below range. Possible indicator of infection or autoimmune disorder (and lots of other things too). Interestingly, severe B12 and or folate deficiency can also cause his count to be low.

    So, if all the tests results are read over and against each other, you have a severe B12 deficiency and a folate level that is far too low, which has been present since 2012. There may or may not be an autoimmune connection (which needs investigating).

    Your GP (all three of them) should have treated you for B12 deficiency in 2012. You should have had the intensive B12 regime for B12 deficiency.

    Here's some 'stuff' to start you off (your GP obviously knows none of this):

    The fact that your B12 level is just within range in Nov 2016 (perhaps you've had supplements) is a moot point. You have been deficient for so long that such a minute raise in your B12 levels will make no difference whatsoever to your symptoms. Nor will it allow your body to start repairing.

    To put this in context: neurological symptoms can occur at B12 levels under 500, a level of 1000 is required for good neurological health and repair, people who inject B12 regularly have levels over 2000 (and some far higher than that), B12 is not toxic or dangerous, you cannot,overdose on it, and it's been proven safe for over 50 years. Dogs with B12 deficiency have B12 injections every week. If,you lived in Europe you could buy it over the counter and self-inject however often you needed to keep,you fit and well.

    Another moot point - your GP should not withhold B12 treatment in the possibly mistaken belief that you do not have PA (negative tests are only 50% accurate). In addition, there are other potential causes of B12 deficiency. And something your GP obviously doesn't know - the treatment for PA and B12 deficiency are the same - B12 injections (injection is the recommended treatment for deficiency with neurological symptoms).

    Your GP's have let you down badly (to put it mildly). You need urgent intensive treatment for your B12 deficiency. This means B12 injections.

    And the golden rule with B12 Deficieny, as stated I. All the guidelines, is - treat the symptoms - not the blood results. A point your GP is oblivious to!

    You should be getting 6 x 1mg Hydroxocobalamin on alternate days (called the loading doses - these are designed to bring your B12 levels up quickly) then 1mg of Hydroxocobalamin every other day until no further improvement (this coild take many months), then 1mg Hydroxocobalamin every eight weeks (though this is not enough for some people - but that's another story). Most GP's have never heard of is B12 regime of treatment.

    Your GP's seem so stubborn and ill-informed that it might be quite difficult to get treatment from them. Bit here's some tips that might help:

    Read all the PAS pinned posts to the right of this,page when you log on. Pay particular attention to treatment and diagnostic protocols, BSCH guidelines, the UKNEQAS guidelines (which state treat symptoms, not blood results). Highlight everything that is relevant to your case, put together a bullet point list containing your main arguments (to keep you on track) and make a double appointment to see a GP (is there one who is more reasonable than the others πŸ˜–) and insist that s/he reads your evidence while you are there and follows this up,with immediate treatment. If you can take someone with you that would be a very good idea - GP's are often more amenable and less hostile if there is a witness in the room - sad, but true. Better still if they are prepared to read all your information and become knowledgeable enough to jump in and help support your arguments, if necessary.

    Next - and this is very important - download a document from the library in the Pernicious Anaemia Society website called 'Sub-acute combined degeneration of the spinal cord' (if you are not a member, you can find information elsewhere on the Internet). Print this and make sure that it's one that your GP reads. I'm not suggesting that you have this but rather that it's a good way of demonstrating to your GP the potentially damaging effects of not treating (or under treating) B12 deficiency. I can guarantee that he will never have heard of it. But it might shake him up enough to start treating you - which of course is what he should have done in 2012 when you first became B12 deficient.

    If a consultation does not work, the next option is to put your concerns and request for urgent treatment in writing, backing it up with the evidence you have collected from the pinned posts and the PAS website.. Ask for an urgent written response (set a timescale and telephone them if they do not stick to it). And if he is still refusing to treat you, ask him to support and explain his decision with medical evidence. He won't be able to because there isn't any.

    After that, the other options are to escalate further in the NHS system or...just change surgeries completely and get a new GP.

    It has to be said that if all fails with GP's, some people here are forced to self-inject in order to get and keep well and whilst we would not recommend this until the investigations have been completed and all else fails, it's is something that people can advise about if that's a route you eventually decide to take.

    Note: B12 and folate work together and as your folate levels are low, your GP will need to prescribe folate supplements - your body cannot utilise B12 properly without adequate levels of folate (level should be in the top third of the reference range). It is important that you do not take folate before you have started your B12 injections - this coild cause neurological damage (again, your GP may not know this).

    Finally...you're right. You do need treatment in the form of B12 injections for your obvious and prolonged B12 Deficiency. The fact that you have neurological symptoms means that this should be commenced as quickly as possible (all the guidelines say 'immediately').

    When you have read all the information in the PAS pinned posts, please post again if you have any more questions or things you want to clarify before you see your GP.

    And take heart...it does all look quite complicated to start off but it soon starts to sink in - especially once you've been through it with a trusty little highlighter.

    And don't let your GP intimidate you (I think from why you say, they'll try). It's your health and you have an absolute right to treatment and, incidentally, you have a right, in law, to have copies of all your blood results (I'm astonished that you were told 'no').

    Most people here will know exactly how hard it is to constantly struggle with doctors to get treatment so there's lots of help here if you need it.

    Be brave, be strong, very good luck...let us know how you get on and shout if you need help πŸ˜€πŸ‘xx

    P.s. - excuse any typos and auto-correct errors - bit late and eyes have stopped seeing so I have to stop now πŸ‘

    P.s. Forgot to say - hope your GP has referred you to a neurologist (rather than just sending you for an MRI Scan of head and spine)? Neurological symptoms can have many causes and other things need to be ruled out.

  • The world needs more people like you. Your words alone have done more for my mental state that any prescription they've offered so far.

    I was sure I'd found the cause but no one seemed to believe me despite the evidence under their noses.

  • Yes...you have indeed found the cause πŸ˜€πŸ˜€. And what the world really needs is GP's who are knowledgable in all things B12 deficient πŸ˜€πŸ’‰.

    But grief, so bad that you've had to struggle so badly for so long.

    Sometimes it can be heartbreaking to read so many stories like yours in this forum.

    And all for the want of 55p-ish injections.

    But hey...we do get some positive results...and everybody gets a lift when we here a success story....so we'll all be rooting for you.

    Sorry to,leave you waiting all day for a response...knew you'd be waiting but wanted to make sure I had the time to put together a suitable response.

    Shout up,if you need more help and we'd all love to hear how you get on πŸ˜€πŸ‘

    P.s. Another forget to say...here's a very good website where you can find information about interrogating and reading blood results:

    labtestsonline.org/understa...

    Or just ask...

    Unfortunately, GP's often fail to see blood results as the puzzle they are - you have to read them all and consider them in relation to each other, a knack that seems a little lost nowadays! 😱

  • Thank you

  • πŸ‘πŸ‘

  • Can't get in to see the GP until the first week in January sadly.

    FYI I've updated my original post after digging into my ebay history to see when I got supplements then remembering more about 2012.

  • I've updated the original post after remembering something from 2012 that I guess is significant.

    I remembered the conversation with the receptionist about needing my levels retesting because they were a little bit low.

    After checking my ebay history I remembered buying methyl b12 earlier that year to try but they'd made me feel odd. I took them again while I waited for the repeat test then stopped them when I was told my levels were normal.

    Thus I guess proving the fact that it's imperative not to supplement during investigations. Hindsight is a wonderful thing. I wish the gp had been aware that supplementing effects tests and had been able to point that out then I wouldn't of jumped the gun and supplemented).

    It's a shame the low test didn't make all the alarm bells ring but they treat me for hpylori back then and the rest is history. I wish they'd maybe done some sort of follow up in view of the low test or tested it again over those years of me complaining of fatigue.

    None of this explains the recent two tests being different though because I didn't supplement before or inbetween them, just after the blood was taken for the second one (kicks self but I didn't know how important it was until this month).

  • Foggyme finally got in to see a GP today. I have to say he had a good grasp of b12 and was very attentive but he did not want to prescribe me B12 'yet'.

    He referred me to a physician at the local hospital re the b12 and also to a neurosurgeon at another hospital for an opinion as my recent spine MRI had abnormalities on it.

    Namely a 'focal cord abnormality at the c3-4 level where there is a high STIR/low gradient echo signal abnormality measuring 6mmx4mm". No focal cord swelling or further focal cord signal abnormalities.

    I'm going to continue to take sublingual methyl b12 until I get the appropriate medical feedback but I'd appreciate your or other learned members opinions.

  • Ps I left him a copy of 'Could it be B12' too.

  • Hi Steap. To be honest...You have a proven long-standing B12 deficiency...and multiple symptoms - including neurological ones - that go with it.

    All the guidelines state that treatment in the form of B13 injections should be started immediately in order to prevent the possibility of potentially irreversible neurological damage - and this can occur at B12 levels under 500 - which yours have been for many years.

    Your GP is wrong. Very wrong. What on earth is he waiting for. You should be treated immediately.

    Do a Google search for 'sub-acute combined degeneration of the spinal cord', print the information and take it in to show him. I'm not suggesting that this is what you have - rather it is a way to show your GP the potential damage that can be done by failing to treat or by under treating B12 deficency. He obviously does not know this.

    Also print the NEQAS guidance in the second pinned post - this guidance highlights the need to commence treatment immediately when neurologicalsymptoms are present - even if B12 is low in the range (the grey area) rather than below range (you have been both deficient and low for many years and as you have symptoms, you should have been treated when very low in the reference range).

    Your B12 oral supplement may have edged your level up a little, but nowhere near enough to effect the kind of neurological (and other) repair for you to get and keep well (serum B12 levels need to be consistently at 1000 or over for this to happen). That puts in context exactly how low your B12 is.

    With your symptoms you should have 6 x 1mg Hydroxocobalamin on alternate days (the loading doses, designed to get level up quickly) and then 1mg hydroxycobalamin every other day until no further improvement (this may be for many months). Your GP may not k one about is B12 regime of treatment - many don't. He can find it in a book called the BNF (British National Formulary). He'll have a copy on his desk - this treatment guideline is the second item down so he'll have to read further than he usually does. If he says ah ha...but you don't have PA...tell him that's a moot point. The treatment for B12 deficiency is the same as the treatment for PA - B12 injections.

    If he still refuses to treat you with B12 injections a) ask for the information that you have given to him (as suggested above) to be attached to,your medical records. Then ask him to write to you explaining his decision not to treat you - and ask him to,include medical evidence to,support his decision. He won't be able too because there isn't any. And it just might shake him up enough to prescribe the treatment you should have been offered in 2012.

    I really do not know what he is waiting for...

    I do so wish I could come along to the surgery with you...πŸ˜–πŸ˜€

    Will be thinking of you...you'll have to be tough and brave as it's always very difficult trying to challenge health professionals...but challenge you must...so just image me standing behind you sending out waves of strength and bravery.

    Please do let us know how it goes...if you do a new post more people will see and be able to respond (as posts get older they tend to get noticed less and only people who have contributed to the thread are aware of any additions).

    Take very good care πŸ‘

    P.s. Sorry for the delay in replying....struggling with a fairly sever adverse reaction to new meds and its slowed me down a bit πŸ˜–πŸ˜€ (I spent 22 hours on a trolley in A & E on New Year's Eve / New Year's Day - it was hilarious - got as far as a hospital bed and then they sent me back to A & E 'cause they needed the bed for someone else). So I ended up with a long spell of trolley treatment. Good grief - the NHS is in such a mess! But I'm doing better now...so the less said the better πŸ˜€

  • I hope you feel much better soon.

    I'm hoping I get into the hospital quickly and that they'll agree to treat me with the injections.

    I've had three sit down Gp consultations and a phone one too begging for injections.

    At the last one (yesterday)I took printouts as advised and left them with the Gp along with the book could it be b12.

    Yet again he (along with the others) made it clear that they cannot accept test results that are not from their own lab but he did type into his computer in my notes that I'd done the test and what the result was.

    I left him the print out of the full results and the guidance.

    He showed me all my b12 results held on their file

    2008 280 something

    2012 146 (then 287 five days later) he actually said you must of taken a supplement after the first test.

    Nov 2016 314pg

    My private Oct 2016 obviously not on his system was 153 so as he says my record shows "I'm ok".

    He made a point of telling me that I now have a healthy level of b12. He offered to retest to satisfy my mind but I pointed out the fact that my supplementing will mean the test isn't reliable so he didn't order any tests.

    After seeing the MRI report he did agree to refer me on for a consultant physicians opinion.

    Constantly visiting the surgery is like flogging a dead horse.

    I'm sure my records say 'don't mention the war".......

    Annoyingly I'm sat here looking at 100 vials of hydroxycobalamin 1ml/1000ug, syringes and needles but don't want to just start self injecting without initial supervision and at least a starting prescription so it's on my records.

    You need tests to monitor progress and posassium levels etc etc

    I'm keen but know my own limitations being a registered nurse.

  • Suggest you write a formal letter to the surgery to outline your concerns, request treatment - again - and ask for a written response outlining the reasons for refusal - together with the provision for medical evidence to support their decision (surely they must have heard of evidence based practice?). And there is no evidence to support the decisions they are making.

    You clearly do not have have a healthy level of B12 - and haven't had for many years. And if he thinks your level is healthy it just shows how ill-informed he is about B12 deficiency. Disgraceful.

    Also - you could escalate - you would have to go beyond the Clinical Commissioning Group - clinical director for your health authority? Or NHS England - directors listed on their website.

    This is just so bad...have you thought about changing GP's? Seriously...it may be the best option.

    Know how you feel about self-injecting...it's a tricky issue...but many here have turned to that when all else has failed...which sadly happens all too often. But this is something only you can decide and I understand your hesitation...plus, once you start self-injecting you'd then have trouble getting anybody to agree that you have a B12 deficiency right now!

    So sorry that all I can offer is words...I really feel for your predicament - as will all who read your post.

    Will be thinking of you and keeping everything crossed...just don't give up and keep on pushing...

    Take care x

  • Hi again Steap...I've had a thought...

    Martyn Hooper, Chair of the PAS often intervenes on behalf of patients who have trouble getting treatment...but he is only able to do so when a confirmed diagnosis of PA is in place.

    However, Tracey Witty, the founder of B12deficiency.info has set he stall firmly in the B12 deficiency sphere...and also intervenes with GP's on behalf of patient who have hit a wall as far as treatment goes.

    I think that's where you are now so it might really be worth contacting her to see if she can help - contactable via email from her website.

    If you simply tell her that you've been deficiency since 2012 (just give the lowest and highest serum B12 level), have some kind of spinal cord damage, the a number of meetings you've had with your GP...and the fact that he thinks you have a healthy B12 level and is still refusing treatment - that will certainly get her attention.

    Good luck....fingers crossed x

  • @foggyme Just for clarity. As I'm taking the oral methyl b12 is it ok to include the multi vitamin that has the folic acid in it (400ug) because I'd stopped using it incase it worsened my symptoms/potential damage.

    I think I'm going to hike up the oral b12 too from today because I'd reduced it to 1000ug daily due to aching/tingling legs but overall I now feel worse energy/fatigue wise.

  • Hi Steap. Again, this is a very difficult question to answer without knowing what your B12 level is currently.

    If, as I suspect, you have an absorption problem, then it is likely that you are not absorbing enough B12 from the oral tablets to push your levels up very far - evidenced perhaps by the fact that you still have symptoms and feel so very ill.

    So...taking additional folate at this stage may a) mask the symptoms of your obvious deficiency and B) have the potential to cause or allow neurological damage to continue. So...there's really no way of knowing.

    What you really need is treatment with B12 injections - as you know πŸ˜€.

    Really do suggest that your contact Tracey Witty - see my reply above - she may be able to help you get action on this.

    Really do hope that you manage to access treatment soon...

  • I can easily do a private b12 test again but is there any point if I'm supplementing high doses.

    I use Medichecks.co.uk and it only needs a few fingers worth of blood into two little bottles and a trip to the post office.

    It would give a comparison fbc, folate and ferritin from the same lab I suppose.

    It's just annoying that the gp's won't accept any of the results.

  • Taking high dose supplements will skew the blood results...and you already have enough blood tests going back to 2012...all of which prove B12 deficency.

    The real problem is your GP and his refusal to recognise your deficency - even in light of your MRI which shows neurological damage (which may or may not be due to lack of treatment for your B12 deficency - but why is he taking that risk?).

    Please please get a new GP... or start a documented formal process requesting treatment...and most certainly contact Tracey Witty...first thing Monday morning.

    xx

You may also like...