Hi all,
I said on another post (healthunlocked.com/pasoc/po... that I'd post the contents of the letter I'd sent my GP when someone asked, just in case it was of any use to anyone else to use bits of. Certainly, a few months ago when I was much more ill I wouldn't have been able to write a coherent letter at all. Each one took over a day to write.
I'll post both letters - they're quite specific to my case, but feel free to use anything you like from them. The second one has footnotes and it's tricky to do that here, but I've done my best! In square brackets, I'm just explaining to you who the redacted names are, that obviously wasn't part of the letters.
Letter 1:
Dear Dr ***
I am writing to you because you were involved in my recent health history and because I found you then to be very reasonable and open minded! I have made an appointment with you but was not able to get one any sooner than the 23rd of October, so I thought I should explain in advance of that in order to save time.
My father is an 81 year old diabetic (type 2) who has in recent years been having accelerating memory problems. In passing, on the way to considering a diagnosis of dementia, a health professional remarked that his B12 level was quite low. In researching B12 and memory I accidentally discovered that the diabetic drug Metformin which he has taken for over 25 years can inhibit B12 absorption. Good news – finally this week, their GP has agreed that this might be pertinent and begun him on trial weekly injections.
While investigating B12, I have become aware that I myself suffer from many symptoms that could point to B12 deficiency. When I was tested in May, my blood serum level was found to be 176 pmol/L, which although, as Dr *** [another GP] assured me when I queried him about it, is within ‘normal’ range, is considered by many sources to be low and worth investigating – and even trial treating – when accompanied by so many other symptoms. There are also documented problems with the accuracy of this test which measures inactive as well as active B12.
According to the Pernicious Anaemia Society (pernicious-anaemia-society....
‘recently updated Guidelines on Cobalamin and Folic Acid by the British Committee for Standards in Haematology 5 state the following:
-The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency.
-Definitive cut-off points to define clinical and subclinical deficiency states are not possible, given the variety of methodologies used and technical issues, and local reference ranges should be established.
-In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.’
Of the symptoms in the questionnaire on the Pernicious Anaemia Society website (pernicious-anaemia-society...., I have or have had:
Strange tiredness; the fogs/difficulty concentrating; breathlessness – ‘the sighs’ or ‘the gulps’; brittle nails with ridges; pins and needles in hands and feet; swollen and/or sore tongue; sudden unaccountable bouts of diarrhoea; balance problems; general unsteadiness; vertigo; burning legs or feet; tinnitus; lack of concentration; memory loss; premature greying of hair; anaemia; dizziness; neuropathic pain; numbness; depression/anxiety; confusion and blurred vision. I have also had several other symptoms listed in other sources – and unexplained low ferritin.
Since B12 deficiency can cause demyelination, I wonder whether this possibility should also be considered as a cause of my MS-like presentation? Obviously Dr *** [the consultant neurologist] is the expert in this, and it might seem as though I’m clutching at straws in order to avoid the MS diagnosis! However, many of the symptoms I’ve had for a very long time seem very much like B12 deficiency, and since treatment with B12 is not harmful, whereas deficiency which is causing neurological symptoms very much is, it seems to me that this should be quite urgently looked at. I hope you don’t mind me writing to you and will consider my case!
Yours sincerely,
My Name
Letter 2 (after a depressingly unsuccessful appointment):
Dear Dr ***,
Following up on our appointment on Monday the 23rd, I wanted to attempt to explain myself more clearly than I was able to do in person and to clarify a few points I attempted to make. Firstly, I apologise if it seemed like I was attempting to undermine your authority, that was definitely not my intention, I had hoped rather to explain what I have recently learned about B12 deficiency and how it relates to my situation. There are several additional reasons why I strongly suspect that I have B12 deficiency which I didn’t get a chance to explain on Monday, but I’ll not explain them here in this already very long letter! Instead, I will try to explain below why I disagreed with your summation.
You seemed to accept the point that a within range serum B12 result does not necessarily rule out B12 deficiency (as well as showing only total B12 and not active B12, the current test, the CBLA has been shown to give false high results in between 22 and 35% of patients. (1.)) Several sources in fact, also disagree with the current B12 threshold – eg, these guidelines from the British Journal of Haematology state:
‘We believe that the traditional cut-off value of 148 pmol/l is too low. We suggest that physicians should consider treating patients who show symptoms but have vitamin B12 levels above this value, particularly those in the low-normal range up to approximately 300 pmol/l, to see whether their symptoms are relieved’ (2.)
In this case, even my newest serum B12 result (which incidentally may have been affected by a sublingual supplement I took before I realised I would be getting further blood tests) would be considered low enough to treat.
You went on however to say that even in light of the fallibility of serum B12 results, I could still be said to definitively not be B12 deficient because of the absence of macrocytosis and definitively not to have pernicious anaemia because I tested negative for IF antibodies. The reason I disagreed that these results (or in fact any of the blood results so far obtained) were diagnostically definitive is because I had just read (amongst other well-researched sources): What You Need to Know About Pernicious Anaemia & B12 Deficiency by Martyn Hooper MBE, founder of the UK-based Pernicious Anaemia Society. Among the various reasons cited there for the initial misdiagnosis of many patients (including 44% of the 889 UK-based members of the P.A.S. surveyed (Hooper, 2015, p.72)) is a reliance by medics on these tests rather than the clinical picture. On page 80 of Hooper’s book, various studies are cited which have found that between 25 and 33% of those patients with either cobalamin deficiency or pernicious anaemia do not have macrocytosis. According to the British Committee for Standards in Haematology, even in patients who do have IF antibodies, the IFAB test produces negative results in between 40 and 60% of cases and it therefore cannot be used to rule out pernicious anaemia (BCSH, in Hooper, 2015, p.108). These points and more are also summarised for medical professionals on the Pernicious Anaemia Society website here: pernicious-anaemia-society....
Another point that you made concerned optic neuritis – you said that as you understood it, this was diagnostic of MS and not of B12 deficiency. Although this condition can be caused by MS, untreated B12 deficiency can also damage many body systems, and optic neuritis is listed as one of the many neurological symptoms by Sally M. Pacholok and Jeffrey J. Stuart in their 2011 book: Could it Be B12?: An Epidemic of Misdiagnoses (a book which also has a chapter specifically concerning B12 deficiency diagnosed as MS), and the Patient.info Patient Professional Reference article on ‘Acute Optic Neuritis’ by Dr Mary Lowth (2014) (3.)., lists Vitamin B12 deficiency as one of nine possible causes of optic neuritis.
To say that I already have a diagnosis and that therefore any other diagnosis should not be considered seems to me to be illogical, especially in light of all that I say above.
I understand why you might assume that I am in denial about the MS diagnosis, and obviously it was an unpleasant shock – and I would of course prefer a potentially treatable condition to an untreatable one. The main reason I seemed ‘quite surprised’ by the diagnosis, as Dr *** [the neurology consultant] states in his letter, was because at our first meeting he had said something like that he was fairly confident that my illness wasn’t MS and that the MRI was just in case we were missing anything. So yes, it was an emotional blow, and took some time to adjust to – and of course I’m aware that no matter what, I have a serious neurological condition which might get worse or might not get better. However, I would say that I am a critical thinker rather than a denier – MS caused by an autoimmune response is still one possibility, but even Dr *** told me that medical science is still unclear about the causes of these lesions. The evidence I have suggests B12 deficiency as a strong possibility for very many of my symptoms.
For the moment, I would prefer to try a treatment/diagnostic tool which is very low risk: a therapeutic trial of B12 injections, than to take MS Disease Modifying Drugs with unpleasant possible side-effects and a relatively low chance of success. It is also the case that if my neurological symptoms are caused by B12 deficiency, then not treating this could lead to permanent damage and worsening of symptoms. If you are interested in my reasoning, I would recommend another article from the BMJ by Alesia Hunt, haematology specialist registrar, Dominic Harrington, consultant clinical scientist, and scientific director of Viapath LLP, Susan Robinson, haematology consultant, which states that: ‘There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance’ and that ‘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.’
Obviously, for me, the best option would be if I could be treated by my doctors as per NICE and BNF Guidelines 9.1.2. for B12 deficiency with neurological symptoms: loading doses of injected B12 for 1 week followed by every other day until symptoms stop improving. I do understand if the NHS, being under great pressure, cannot afford to fund this but I wanted to let you know that since this is the case I will need to begin self-treatment, as many patients in similar circumstances do.
I tell you this in order that my doctors know what is happening to me and to ask for any support that you are able to give. I greatly appreciate all that the NHS generally and this practice and specific health professionals particularly have done for me over the years and I hope that my actions are not taken as anything other than my attempt to take the best course of action for myself and my family without burdening the NHS and this practice.
Yours sincerely,
My Name
1. Carmel R, Agrawal Y. Failures of cobalamin assays in pernicious anaemia. New England Journal of Medicine 2012; 367;4:385-386. Available at: nejm.org/doi/pdf/10.1056/NE....
2. Devalia, V, Hamilton, M, Molloy, A. Guidelines for the diagnosis of cobalamin and folate disorders. 2014; 166(4):497. Available at: onlinelibrary.wiley.com/doi....
NICE Guidelines re B12 & Haematologist referrals
B12 Frequency Research
Unsure I’m getting the right treatment for B12 deficiency 
