Me and my daughter are currently having problems getting a diagnosis, my daughter is 16 and has passed out for the best part of her life, she has neurological symptoms and many symptoms of b12, the neurologist told her she will grow out of everything she is going through and says its a faze, I had to laugh it off.
Her level at present is 204 we have kind of masked her level as she was taking supplements before the test, they wont test her for another 6 months which I believe is a bit to long considering she can never feel her legs as they get so heavy and numb.
As for myself I have also skewed my results my gp is doing me a b12 every test, my first one was 490 this is after being on b12 supplements for over a year and a half, within just under a month my level has gone down to 309, I had another test yesterday so just awaiting those results then I have one again the 20th of december, I am struggling mentally within 2 weeks of stopping the supplements, they had actually helped me big time with anxiety, dizziness and vertigo just didn't help the neurologial side of things.
I'm at the end of my tether and I really don't know where to go from here, I have proved to myself and my daughter that we are in desperate need for these supplements but can't seem to make the Gp see sense.
Anyone know of anyway I can get them to listen to me?
Thanks in advance.....Nichola
Appreciate any advice
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Try printing off the abstract in this link and ask your GP to read it before your next appointment. You can only get the abstract unless you get a trial to the BMJ, but your GP should be reading this stuff anyway. The abstract itself indicates the true nature of b12 deficiency and how the serum b12 test is not adequate to detect functional disorder.
I suppose it depends on how well you get on with/know your doctor?
It shouldn't really be 'worth a shot.' Your GP is obliged to keep him/herself up to date on developments and that research is recent UK stuff - no excuse for not reading it really.
When I send it I am unsure if they even read it until I bring it up, I am going to copy it now to a email and go from there, they can't get me done for this so why shouldn't I?
It comes to something when you have to give them information that they should already know, the problem is my head is so foggy lately I am forgetting what I'd like to say.
I know, the foggy head doesn't help. I do think you would be better off finding a way of leaving him with it - not only because it is only the abstract and he needs to download the rest, but also it will put the responsibility on to him - that way your foggy brain doesn't have to try as hard when you sit down to talk about it.
I cannot get to see her until a months time, its beyond a joke trying to get to see her, I will be best to do it in email and tell her I would very much want a reply and that I want it put on the records, do you think this may work?
If you do, be nice. You are asking her expert opinion - make her do the work.
If she hasn't already read it, it may well come as a surprise to her. On the other hand it may change nothing.
We are all experienced in handing stuff to our GPs which they simply don't read (they've rarely bother to read my blood tests!) - but this is different - this is the BMJ and it's UK stuff.
Remember put the ball in her court, ask her if she could explain it to you?
"A friend who's a nurse has read it and she was really surprised and thought I should get your opinion!"
It might get you nowhere - but it's the best shot we've had for decades!
She might not click on it - or their system might not accept attachments.
I know it's difficult to be nice to them ... well, it is!... but this time the advantage is yours. If she was up to speed, she should know about this already. Give her some room to save face by taking positive action.
I am not aware if you have spoken to Dr .... in relation to our appointment on 28-11-14.
I have numerous times stated my worry about Kays symptoms which also is neurological, I would kindly ask if we can go have a second opinion from a Neurologist as I find the letter the Neurologist appalling and basically not helpful to what Kays is going through, to be honest implying that she is a 16 year old that is too much aware of her illness is a terrible thing to state and I'm sure anyone who was suffering with what my daughter has been would be worried as a natural response.
I have looked furthur into this and has sought help, I came across this...
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Alesia Hunt, haematology specialist registrar, Dominic Harrington, consultant clinical scientist, and scientific director of Viapath LLP, Susan Robinson, haematology consultant
Author affiliations
Correspondence to: A Hunt alesiahunt@nhs.net
Summary points
Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features
Vitamin B12 is an essential cofactor that is integral to methylation processes important in reactions related to DNA and cell metabolism, thus a deficiency may lead to disruption of DNA and cell metabolism and thus have serious clinical consequences.1 Intracellular conversion of vitamin B12 to two active coenzymes, adenosylcobalamin in mitochondria and methylcobalamin in the cytoplasm, is necessary for the homeostasis of methylmalonic acid and homocysteine, respectively.2 3 Methylmalonic acid is converted into succinyl-CoA, of which vitamin B12 is a cofactor for the reaction. Homocysteine is biosynthesised from methionine then resynthesised into methionine or converted into amino acid cysteine.
Vitamin B12 (also referred to as cobalamin) deficiency is relatively common, with important and variable clinical consequences. This review presents a concise summary of the most up to date evidence on how to diagnose and manage vitamin B12 deficiency.
Sources and selection criteria
We searched PubMed and Google Scholar using the terms “vitamin B12 deficiency” and “cobalamin deficiency”, and hand selected the most relevant and appropriate articles. We also used evidence based guidelines from the British Committee for Standards in Haematology; however, evidence, especially in the form of randomised controlled trials, is lacking.4
I asked a nurse who is a friend and she was suprised about this and thought I should get your opinion on this.
It has been so hard to try and get a appointment with you, I had to rush Kays to the emergency out of hours doctors as she suffered with dead legs and could hardly walk, upon a examination the Gp there was shocked at the lack of feeling she had in her arms and legs, he actually done more testing then the neurologist who speacialises in this field.
Please could you look at this and get back to me, I am so concerned about Kays neurological symptoms and really don't want this to continue to a point of it not be irreversable.
You might sound just a smidge angry. And we all are - I'm noted for being Mrs Angry - but in this instance you can't be.
Here goes:
"Dear Dr ?
I don't know if you are aware but Kay had to be rushed to the emergency doctor on .... and the findings were that she appeared to be suffering from neurological injury, and as I am sure you can understand, I am greatly concerned that her condition does not get worse.
However I was also recently contacted by a family friend who is a nurse. The lady in question telephoned because she had seen an article in the BMJ (below) and it apparently has caused some discussion amongst the clinicians she works with and calls into question some problems surrounding b12 deficiency and the current practices.
It is quite likely that as a professional you will already have seen the article, however it makes mention of the neurological damage which can be sustained if a patient is not treated adequately or quickly.
I would appreciate it if you would read the document (I'm sure you can access the full research paper) so we can discuss the matter further when I next attend.
Unfortunately I am having a few problems getting an appointment with the surgery in under 4 weeks.
However, I would appreciate you putting this email and article in with my medical records even if you are already aware of it."
... and then copy and paste in the rest.
We know you hate the neurologist, we all do (except Marre), but at the moment you need your doctor to do something.
I don't know if I've got the facts straight but you neaten it up as you will. Or bin it...
Thank you so so much yes I am a little blunt I must admit on that letter my brain fog and anger really is holding me back I will do it your way thanks so much for taking the time out for me x
We have a right to be angry - truly. So it is so difficult to distinguish the facts from the personal anger that writing about it (particularly with the fog) simply allows us to express.
Seriously; I write 'normal' emails 9 times out of 10 - but the 10th I go berserk. I have to write to people I don't respect, as if I respect them, when in reality I loathe them and think they are useless at what they do.
I have lost so much faith in these medics leaving so many people ill.
I actually have a appointment in Bristol with someone on 22nd january who deals with b12 for myself shame my daughter isn't 18 because they wont see her until then
I will just have to keep fighting for her, she has a blood test on the 8th to recheck after telling the gp today that waiting for 6 months is inadequate, sometimes my brain is so fried I can't even spell or words look wrong lol.
I cannot thank you enough for the help you have given me today
It depends what you mean by 'look good' - and which test you are talking about.
We already know, via the BMJ article at the very least, that the serum b12 test is not an accurate reflection of how deficient you are at cellular level ie how much physical damage is going on even while you are in the normal range.
You have to remember that those ranges are set by someone - and if they are set by someone who was looking to treat a blood disorder rather than a neurological disorder then they are most likely wrong.
How ferritin and folate after bloods is not related to the serum b12 test directly (although they may be in a way I'm not aware of).
Ferritin is related to iron. If you have a deficiency in iron you will get a microcytic anaemia ie things will be made smaller.
Folate and B12 work on the same metabolic pathway and a deficiency of either can cause a macrocytic anaemia.
If you have both an iron deficiency and a b12 and/or folate deficiency - which means a microcytic problem and a macrocytic problem. Then this can result in your bloods looking normal
If you treat for an iron deficiency it may reveal the b12 deficiency - but if you treat for the iron deficiency and then treat the other deficiency with folate, then the b12 damage will continue undetected until someone decides to do a b12 test - which, as we know, is not reliable anyway.
thanks for the reply, do you think the active b12 will show something up now or would I have to stay of the b12 longer then 4 months to give a accurate reading?
I could be wrong, but I'm nearly certain that the people who do the active b12 test give guidelines as to how long you need to be off it before you have your test.
The whole concept is crazy, is it not? Having to go to such lengths and risk permanent nerve damage simply to prove to your GP that you are ill.
I am really not coping with being off this and my serum level isn't going down fast enough to get the help I need, I will do the active b12 privately I just don't know if 4 months is enough time of being of the supplements
You could phone the lab who does the test to ask - but I never recommened people to wait - I just think it's too risky.
But then you are left really between a rock and a hard place. Which is why a lot of us end us self-medicating - and it is entirely wrong that we have to.
I am hoping to at least get one injection to know I am fine with it then I will start self injecting, I believe the injections will help me far more then the supplement's, already I am loosing so much of my hair it used to be really full, its so fine and I feel bold on the top, I really don't think I can wait much longer.
Yes and when we went to see her she said that they follow the guidelines of the hospital and far as she is concerned they are the best guidelines, have you the link to the BMJ stuff please?
Ah. Give her time to read and research it. It takes a lot of sinking in - the fact that most doctors have had general misconceptions about b12 deficiency.
You were due to make a further appointment anyway, weren't you?
Yes we was can't get in for another month fully booked, my daughter's levels was 204 the last time we had it checked she has another blood test on the 8th
Ok thanks so much for all the help and response you have given me...bless you x
Hi,
As you both are staying off B12 supplements now; have symptoms, and are in the grey area with serum B12 levels then it would be worth you both asking to have the Active B12 test done and MMA, as per new guidance (see link below). If GP does not wish to help ask for a referral to a haematologist.
I asked my Gp if I do a active b12 test and bring the results would she then help, she couldn't answer as in saying No, I have asked for all the other testing that can determain a b12 problem and got they don't do it on the NHS I am being brushed off all the time. thanks for your comment x
I'm appalled, but not surprised, by the verdict of your daughter's neurologist. It seems to me to be an example of the ignorance and neglect to which too many distressing and chronic problems are subjected by the medical profession. I won't rant about medics
though, as you've come here with your own problems! I think all you can do in this situation is present your GP with evidence for the basis of your concerns. The documents Marre links to are very useful ammunition. Write a polite covering letter, setting out as succinctly as you can (fatigue and brain fog permitting), the problems you and your daughter are facing. You may want to set out the current and likely future consequences of non-treatment or under-treatment.
In the meantime, it may be prudent to prepare for an unhelpful response from the GP practice, and perhaps look into self-treatment. This is not something everyone feels they can face - or afford, for that matter. It can be tricky to source all the necessary supplies from reliable sources, which is a problem I'm having at the moment (see question I posted yesterday). But keeping informed about your problems and knowing you are not alone in your experiences can really help keep up morale.
Thank you for your reply, I have in fact sent the new guidelines to our gp's and the response I got was wait 6 months for a retest and they say they follow the hospitals guidelines which they believe are right to them!
I have came back from my daughter's Gp again angry, although they are testing her B12 and folate on the 8th december, I am so hoping it shows up she is low now although she has to be under 120 before they even listen, I really have no clue what to do, I want to self treat but knows I need to at least get one injection to see if we don't get a reaction as I have been advised some do.
I will look at the links and see if there is anything in there I haven't covered and hopefully send another email again today.
I even sent a video from you tube to them about B12, why are these people so ignorant?
It's incredibly frustrating, isn't it? I'm not sure your GPs are correct to go along with local hospital guidelines. Local reference ranges for blood tests can vary significantly across the country. Ultimately, blood tests are just lab evidence, not clinical evidence, and reference ranges are only for reference. 'Guidelines' too are just what that word means - for guidance only.
No-one seems to look at the whole clinical picture anymore. I've noticed over the years that doctors are more and more unwilling to deviate one iota from this rigid system. It's probably a product of fear, together with a lack of independent critical inquiry among today's medical graduates. Mind you, I could speculate all day about this.
Depending on how strong you are feeling or how much support you have from family or friends, you may want to consider making a formal complaint using the evidence you have already. Personally, it's something I would only consider if you can switch to another practice in your area. I have 20+ years' worth of ammo against my own GPs, but I live in a rural area where there is only one practice available.
When we eventually get a diagnosis I will be getting all the Gp's involved done for medical negligence I have numerous times told them we have PA in both side's of family.
My mum actually passed away, she had many symptoms, they kept on blaming her weight, turned out she had thyroid and B12 problems, she passed away in her sleep having had a stroke, my mum went down hill rapidly, I didn't know to much about it back then but I wish I did
This is so wrong on every level, I will not give up although I am so so tired of fighting.
Fighting with the medical profession for years can be exhausting. It's one reason I try to treat myself now. I'm very sorry to hear about your Mum. I have hypothyroidism too and I treat myself for that, with occasional advice from a private specialist.
Letting either of these conditions linger untreated in a patient is negligent, because the consequences can be so severe. My own family history shows a lot of auto-immune disease, but it's routinely ignored, despite being a proven risk factor. It's my own opinion that only court cases brought by patients are likely to bring about rapid changes to current medical practice in favour of patients' health and well-being. It's not a given though.
My mum had sleep apnea they blamed her weight all the time, my blood tests always show inflammation and they blame a spot on my face which is acne, these people drive me insane, am sure if they was feeling like this they wouldn't wait to get help.
I myself have a thyroid nodule and thyroid antibodies they still haven't diagnosed me with hashi's just said I had to wait until immune system killed my thyroid, easier said then done.
I'm speechless. I shouldn't be though, knowing what I do. So your doctors know that your immune system is attacking your thyroid, but they won't diagnose Hashimoto's, let alone treat you for it? I really think that is cause for formal complaint. If you've got/can get hold of paper copies of your test results showing the presence of auto-anti-bodies, then you have evidence.
Sorry to carry on in the 'me too' vein, but I do have sleep apnoea as well. It's commonly implicated in auto-immunity. A doc I saw privately thought it was due to auto-immune-induced changes to the connective tissue in my throat. No NHS doc I've seen will treat it though, because "only overweight men/heavy drinkers/smokers suffer from the condition". I'm wondering how to raise the ££££ I'll need for private treatment.
I would head over to the Thyroid UK forum here on healthunlocked (you won't need another account, you just add the forum to My Communities at the top of this page). They're very active and helpful people, and I'm sure they'll have plenty to say about your experiences. I've only just joined that one, because I've had previous contact with them by phone & email. Google Thyroid Patient Advocacy as well - another patient organisation with a forum, though not on healthunlocked.com They're a bit more radical in their approach, and they have links to helpful professionals too.
Hi Nicola. The fact that you have PA on both sides of your family makes what you are going through even more shocking and vital that your daughter is treated urgently.
It might be a good idea to join the Pernicious Anaemia Society and contact Martyn Hooper, the Chairman. He will be able to offer good advice and, hopefully, intervene on your behalf with your surgery.
In the meantime, I would email this UKNEQAS link to your GP:
"18 February 2014
B12 ALERT
False normal B12 results and the risk of neurological damage
"In 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.”
NICE - body that does research to advise NHS on best practice revised its guidelines on treatment of B12 recently following changes in the BCSH guidelines Marre provided a link for.
These are links to the NICE guidelines
The most relevant section is probably the one that starts 'clinically significant vitamin B12 deciency ...
Think the reference to 'especially in elderly people' is unfortunate as temptation is to read it as 'will apply if old' but actually it doesn't rule out same being true of young people ... and to be honest I think there is too much of a tendency to say B12 is something that really only affects you if you are old.
refer to the section on B12 - 3rd bullet point - looks a lot better on the website as bullet points don't paste very well here.
Interpret the results of the serum vitamin B12 test taking into account clinical symptoms and the following limitations:
The test measures total, not metabolically active, vitamin B12.
The levels are not easily correlated with clinical symptoms, although people with vitamin B12 levels of less than 75 picomol/L (approximately 100 nanograms/L) usually have clinical or metabolic evidence of vitamin B12 deficiency. In most people with vitamin B12 deficiency, the serum vitamin B12 level is below 150 picomol/L (approximately 200 nanograms/L).
There is a large 'grey zone' between normal and abnormal levels and reference values (and units) may vary between laboratories.
Clinically significant vitamin B12 deficiency may be present even with vitamin B12 levels in the normal range, especially in elderly people.
Rare cases of false normal vitamin B12 results have been reported in the presence of high titres of anti-intrinsic factor antibody in people with megaloblastic anaemia or subacute combined degeneration of the cord. Therefore, the diagnosis of vitamin B12 deficiency should also include evaluation of the person's clinical state and other laboratory findings.
Testing for anti-intrinsic factor antibodies is therefore recommended in people with strong clinical features of B12 deficiency, such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal serum vitamin B12 level.
Women taking oral contraceptives may show decreased blood vitamin B12 levels because of a decrease in cobalamin carrier protein, rather than a deficiency state.
Vitamin B12 levels may be falsely low in pregnant women because of the increased plasma volume of pregnancy rather than actual deficiency of vitamin B12. This makes it practically very difficult to diagnose vitamin B12 deficiency in pregnancy.
Going forward, even if you get nowhere with the GP you do have other options including:
a) self treating - doesn't necessarily have to be injections - there has been little if any real research into what is really the best way of delivering B12 is someone has a deficiency - the CDC in the US (there equivalent of NICE) mentions nasal sprays where people have problems with needles.
I found using a nasal spray was what saved me - but I needed to use it at about 3 times the dose on the bottle but turned around very quickly - up until that point I'd found that it took the edge of the fuzzy brain but the neurological symptoms were just getting worse but within a couple of weeks of using the nasal spray at high doses I had recovered my balance and went from struggling to walk or with stairs to being quite happy perched at the top of a ladder pruning a grape vine. People I know have been amazed at the change. At least you can't overdose on B12 so upping to see if that improves things is worth a try.
b) looking for another GP
c) formally complaining about the treatment you are receiving. Not really sure what the process is with a GP - think there are usually Patient Liaison Groups who can support. Citizens Advice may also be able to help ... but totally understand that that really is a last resort when you are feeling the way you are.
Understand your concerns for your daughter - waiting increases risk of damage becoming permanent and its affecting her life at a critical point.
Like others - appalled but not necessarily surprised by the attitude and ignorance of the medics you have dealt with. Have a colleague at work who is really struggling with getting her GP to listen ... I couldn't get mine to listen in terms of getting the treatment I needed (deficiency was identified when I was in hospital - probably because looking through my notes my MMA was really high during operations etc. - have asked for the actual test results but got nowhere - clerks who wouldn't know a blood test from a prescription for aspirin).
I suffered years of depression and had numerous other symptoms that bringing together would have pointed to B12 years ago but ... In my case the deficiency really has taken decades to progress.
Thank you for your reply, they have been blaming my daughter's menstrual cycle down to her passing out even though I have told them she was doing it way before that, My daughter has had enough and is fed up with feeling ill every single day, she hardly has any hair left and she has no clue where it is going although I believe she loses a lot of it at bath times while washing her hair.
She was put on iron tablets a few months back as her ferritin was at level 8 and I had to get her folate as she was low in that, she nearly missed out on getting into collage because of her passing out episodes as she wanted to go into training to become a hair dresser, this has gone on way to long.
I did supplement her a while back and she did so well on them but some of her neurological symptoms was still there but she managed, if I copied the letter from the Neurologist to show you I'm sure you would be shocked of the outcome what he wrote to the Gp I cannot believe the ignorance of them!
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Update for my daughter re loading injections. and the rest.
Advice for my daughter please - possible PA?
Latest GP diagnosis is... I’m getting old! I'm 55! Help with next steps please… 😠
Posting for my daughter
Tests needed for daughter already supplementing with injectable b12
