Letters to doctor which led to treatm... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,984 posts

Letters to doctor which led to treatment - feel free to copy any parts

ktwing profile image
18 Replies

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....

3. patient.info/doctor/acute-o...

Written by
ktwing profile image
ktwing
To view profiles and participate in discussions please or .
Read more about...
18 Replies
ktwing profile image
ktwing

Thank you :)

ktwing profile image
ktwing

toph did you see this? Not sure if it'll be any help to you, but you could maybe adapt them?

Tractorgirl53 profile image
Tractorgirl53

Well done you!! I'm going to take a leaf out of you're book. Basically you have to manage you're own health and well being for you and you're family and you have.

Sleepybunny profile image
Sleepybunny

Hi,

"medical science is still unclear about the causes of these lesions"

I came across several articles linking brain or spinal lesions with B12 deficiency when internet searching "brain lesions B12 deficiency".

ktwing profile image
ktwing in reply toSleepybunny

Yes, that's true, that was why I wondered whether it might be the cause of mine - I was referring to my neurology consultant telling me when I was diagnosed that it looked like MS, but that although they think MS is caused by an autoimmune process, there is no certainty scientifically. Or words to that effect - it was months ago and I was quite ill and scared!

Dewbuc profile image
Dewbuc in reply toktwing

It's utter stupidity to ignore a potentially safe and curative treatment for MS. My fingers are firmly crossed that you have a dramatic improvement with B12. Not only would I be thrilled for you but I would love to know how the doctors remove all that egg from their faces!

ktwing profile image
ktwing

I feel I should also say, although this felt like a huge success and was the opposite to what I expected from this phonecall from the GP, there's a chance that they'll not give me injections unless the tests show something significant, which I might have messed up by taking sublinguals in my despair. The GP also said that although the guidelines say 'every other day until no further improvement', they might not be able to do that for more than a couple of weeks and then it might be downgraded to every two months. Still, I'll see what happens and might be able to argue my case, or even self-inject. At least having had my initial injections by a medical professional would be a good start!

Foggyme profile image
FoggymeAdministrator in reply toktwing

Hi ktwing. Hmmm...

The GP also said that although the guidelines say 'every other day until no further improvement', they might not be able to do that for more than a couple of weeks and then it might be downgraded to every two months.

Just wondering if the GP explained why they might not be able to do the every other day for more than a couple of weeks?

Certainly not in line with the guidelines...and probably not in your best interests.

Suspect this might be a resource issue (nurse time for all those alternate day injections).

Some people have got over this by offering to be taught self-injection so that treatment can continue...as it should...without a heavy impact on surgery resources.

Might be worth a try.

Good luck

👍

ktwing profile image
ktwing in reply toFoggyme

Thanks Foggyme , yes I think it was to do with resources, and I did suggest being taught to do it myself, hopefully that will be an option. At the time I was just so glad to have gone from being seen as completely misguided to possibly right that I didn't want to push too much!

I'm now waiting to see what the haematology consultant says about the sublingual supplementation, and whether we should go ahead without doing the tests.

The doctor seemed to think that a therapeutic trial would be too difficult to tell whether any improvements were caused by the B12 or not, because I have seen very gradual improvement of symptoms since being very ill in February, so an improvement might have happened anyway. She also said that everyone feels better on B12, so it wouldn't necessarily prove anything. I do see what she means - my symptoms are quite erratic. Still, fingers crossed that things go positively!

Foggyme profile image
FoggymeAdministrator in reply toktwing

Ktwing...horrifying how many reasons some GP's can find NOT to treat with vitamin B12!

Your well argued and evidenced letter to your GP makes it quite clear exactly why you should be treated with vitamin B12.

Oh, and...not to mention the MRI that showed mild lesions on your brain and spinal cord...and the fact that your neurologist originally thought that your symptoms were not caused by MS.

Leaving aside issues to do with the accuracy of the MS diagnosis, there's also the point that some people with MS do benefit from B12 injections. Another reason TO offer injections.

It'd be interesting to know if you GP has heard of a condition called subacute degeneration of the spinal cord (a neurological condition caused by untreated or under-treated B12 deficiency).

Really not sure how your GP can choose to ignore all this on the basis of the spurious notion that it 'might be difficult to tell' if a theraputic trial works. Shocking.

Your GP is very wrong-headed.

I agree wholeheartedly with Dewbuc 's comments.

I do wonder if your GP would take such a cavalier approach to guidelines and research evidence if her own health was involved.

Stick at it ktwing 's...goodness only knows why your GP is not treating you already.

Good luck

P.s. Incidentally, did you ever get to discuss the possibility of B12 deficiency being the cause of your symptoms and MRI result with the neurologist? Might be worth asking for a re-refer, if not. If the neurologist knows anything about B12 deficiency, they may be more inclined to prescribe the treatment you need.

👍

ktwing profile image
ktwing in reply toFoggyme

Thank you. No, I've not seen the neurologist since beginning the B12 journey! It's a good idea, I'll see how things go with the GP and haematologist first but keep that in mind if things start to stall...

Foggyme profile image
FoggymeAdministrator in reply toktwing

Also thinking that in light of the potential for B12 deficiency, a trip to the neurologist would be an opportunity to re-evaluate the MS diagnosis.

Also (as I'm here), B12 deficiency is most often caused by some sort of absorption problem and I note you've previously suffered from iron deficiency anaemia. Just wondering if you GP has checked your folate and vote in D levels (two other common deficiencies that arise because of absorption problems). Folate is particularly important because B12 and folate work together and if folate is deficient or low, the body cannot utilise B12 properly. Also worth checking ferritin if this has not been done for some time.

If you do have other defieiencies, this will lend weight to the argument that absorption problems are also potentially causing B12 deficiency.

Note that Sleepybunny has previously mentioned IF antibodies - a test for pernicious anaemia (an autoimmune condition and one potential cause of B12 deficiency). If you have someone in the family with any kind of autoimmune condition, you are more likely (but not certain) to have one too. Whatever, it would be a good idea to have this test...though 40%-60% of people with PA test negative, so a negative test cannot positively rule out PA.

Good luck, let us know how you get on 👍

ktwing profile image
ktwing in reply toFoggyme

Thank you, yes, I've had extremely low serum ferritin, first found in 2013 (5 ng/ml (13-300)) with no cause found - I had a colonoscopy and endoscopy which found nothing, I don't have heavy periods and I do eat meat. They ruled out coeliac at that point, but I've just found out that they didn't test for H. pylori, so I'm having that done now because the absorption theory seemed to me to be pretty likely.

My folate is apparently normal: 7.0 ng/ml (3.4-10.4) and I tested negative for IF antibodies - but have pointed out to the GP that the latter doesn't rule anything out! Vitamin D I don't have a written result for, but was tested because I wanted to supplement because of MS and that was apparently normal too. But I do now supplement with D3 because the neurologist recommends it for everyone!

Thanks very much, I'm so glad this forum exists :)

Foggyme profile image
FoggymeAdministrator in reply toktwing

No problem. Best of luck 😀

Dewbuc profile image
Dewbuc in reply toFoggyme

Presumably they would prefer to treat any irreversible neurological change caused by their failure to follow the guidelines and face potentially very damaging litigation and professional censure. We don't live in a Banana Republic - or do we?

Dewbuc profile image
Dewbuc

Excellent! It shouldn't be necessary but since it is you make your case brilliantly. I hope you will get the treatment and support you require.

Sleepybunny profile image
Sleepybunny

Hi,

Foggyme said "It'd be interesting to know if you GP has heard of a condition called subacute degeneration of the spinal cord (a neurological condition caused by untreated or under-treated B12 deficiency)."

Some links about SACD

PAS article on SACD, available to PAS members.

pernicious-anaemia-society....

PAS news item on Neurological Consequences of PA

pernicious-anaemia-society....

Martyn Hooper's blog post that mentions SACD

martynhooper.com/

An internet search for "pictures sub acute combined degeneration spinal cord b12 deficiency" threw up some interesting links.

ktwing profile image
ktwing in reply toSleepybunny

Thanks very much!

Not what you're looking for?

You may also like...

Article about strange symptoms of B12 deficiency

Hi, Just came across this article and wondered what you all thought of it......
Sleepybunny profile image

Reply from my local ICB

We fully agree that is incumbent on all local NHS Systems to ensure that they treat their patients...
Orchard33 profile image

Better late than never

At last a response from David Lidington after our request that he attend a function held by Martyn...
clivealive profile image
Forum Support

New PAS news - BSH treatment advice during pandemic changed

Hi, PAS news item published today 25th which discusses changes BSH have made to their advice to...
Sleepybunny profile image

Various B12D/PA resources

Admin Edit: This is not an official PAS post but it does contain many resources that may be of use...
jade_s profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.